This page has an article I wrote several years ago about PSAS and to this day I cannot find a magazine with enough chutzpah to print it. I don't know ---I guess if our symptoms were classified as similar to the tremors of Parkinson's or MS, perhaps the subject matter would have been less worrisome to editors.
Perhaps we would have been afforded the same coverage as other disorders. The fact that the condition involves unwanted orgasms doesn't seem to resonate with the average humans thinking. Surely we must "want it" if we can constantly have them. Perhaps in the sub conscious of many journalists minds is the thought that we are somehow sexual predators, there-fore the instinct is that we must be crude, dirty minded people. As journalists, the mind should be open at all times. To close it for even a second could allow the misfortune of missing being the first to report on something that actually has more interest to the average person then first thought.
Some magazines have had their own writers interview and write up a story on PSAS which on occasion is published. I have read every one that has come along. It is safe to say that while they may be good writers, they have left much of the facts out which would better explain the condition. The reality is that someone who suffers PSAS would write a much more compelling article or tell a more riveting story. And in the end, isn't that really what it's all about for journalists? The story--and crunching the rating numbers higher? So why not have the real people tell the story in their own words?
This is what I have done here. I have shared the story that wouldn't sell. And I have added on a running journal of my life with PSAS. And quite honestly, those who have found this page, whether they are new members and have PSAS or if they are web surfers who have just come across it or "normal" people who have read or seen coverage on PSAS and out of curiosity have stopped by, have contacted me to tell me how amazing the journey has been, how strong and brave I am and what great journalism I've written.
So take the journey if you'd like and see what it's like to live with PSAS.
My Personal PGAD Story
Persistent Genital Arousal Disorder (PGAD)
Is this a new medical phenomena distressing women?
By Jean Lund
There has been a lot of focus the past few years on diminished sex drives. The causes have varied from daily stress and fatigue to the side effects of medication. But there is a new phenomenon affecting women that has never been discussed. In fact the majority of the medical field itself has little, if any knowledge of it. It is called Persistent Sexual Arousal Syndrome (PSAS). The symptoms are the complete opposite of FSD in that women are complaining of a constant need for an orgasm. Whether a woman has fulfillment through a partner or other means, the need for more is immediate, persistent and often painful.
Dr. Sandra R. Leiblum, Ph.D., a Professor of Psychiatry and Obstetrics/Gynecology and Director of the Center for Sexual and Relationship Health at the UMDNJ-Robert Wood Johnson Medical School in Piscataway, NJ began clinical studies on PSAS over three years ago after hearing women's complaints of being constantly aroused. A leading authority in sex therapy, she has edited or co-edited ten books as well as more than 100 clinical and research articles.
I came to know Dr. Leiblum in March of 2001, after searching for six years without finding any answers for myself on the condition. My symptoms began in mid 1995; almost a year after untreated Thoracic Outlet Syndrome (TOS), a compressed nerve in my neck began. During that year I suffered with a lot of trigger points in the lower back of my head, the neck and the scapula area. I also had high anxiety and panic attacks from the pain. Four months before I had surgery for the TOS I noticed an increase in my sex drive. It wasn't a big increase at first but within two months it suddenly became out of control. As soon as I reached an orgasm, it was only a matter of minutes before I felt ready for another. No matter how many I had, I still felt the same way. Alarmed, I made an appointment to see my gynecologist. He ran the usual battery of blood work, checking hormone levels and testosterone levels and did a paps exam. All the tests were normal. He snickered and told me I was “every man's dream.” Angry and disappointed in his reaction I never went back.
Over the course of the next six years I saw an internist, four more gynecologists, a neurologist, and a urologist, each suggesting I see a psychologist or psychiatrist. None had heard of the problem I was having. Feeling dismayed but knowing it wasn't in my head I agreed to go. As I suspected there was nothing hidden in my past that was causing my symptoms. The psychiatrist had me try several different anti-depressants because the side affects alone cause diminished sexual desire but none of them worked. The physical intensity of pulsation in the vaginal area remained the same while the anti-depressants only succeeded in suppressing my ability to reach an orgasm. Needless to say I stopped taking them.
Feeling as though I were a freak of nature I started my own research on the Internet trying to find information that matched what I was going through. Every link led to sexual dysfunctions and the lack of desire. I felt absolutely helpless. My lifestyle has changed dramatically. Where I was once a very sociable person and loved outdoor activities, I have become a recluse. I only go to work because I have to support myself. Working is very difficult because I am constantly distracted by the urges. Riding a bike or taking public transportation is out of the question because the vibration of the bus or train acts as a stimulant. I rarely socialize because I am constantly distracted and in discomfort. Dating is out of the question. I fear the intimacy that may follow. I have three grown kids and am friends with my ex-husband but have never disclosed the entire facts of what has happened to me for fear of ridicule. Only my best friend knows and is very supportive and understanding. If I allowed myself I could have as many orgasms a day as I want. I try hard to fight the urge, by making myself wait. Sometimes the orgasms are painful.
In March of 2001 I happened across an article in People Magazine about the Berman sisters who practice at UCLA in Los Angeles and have done female sexual studies. Feeling I would hit another brick wall, I took a chance and contacted them and asked if they had ever heard of constant arousal. Much to my surprise they had! I wept with joy thinking my six year search was over and that I would be cured. That was not the case. Although they had treated a couple of women with some success, they did not know the cause. I went in to see Dr. Jennifer Berman and she did a Doppler exam which measured the blood flow in the veins to the vaginal area. She did see some abnormality but my health insurance plan would not authorize further treatment, stating that it was `exploratory.' So they put me in touch with Dr. Leiblum who had been running clinical studies on PSAS. No prior research had been done before Dr. Leiblum identified and described the syndrome and its symptoms. At the time she only had six case studies. She had introduced the Berman's to PSAS when she presented it at a meeting of the International Society for the Study of Women's Sexual Health in Boston not long before my contact. I still have not been treated but am determined to find help and bring awareness, I have mentioned PSAS and its symptoms to every doctor I have seen since. I bring them a copy of a report that Dr. Leiblum wrote so they can use it for reference. I always get the same response. They have never heard of it and have no idea what to do to try to help. I ask them only to remember PSAS if they ever have a patient complain of any of the symptoms.
Dr. Irwin Goldstein is another doctor that has been studying and treating patients with PSAS. He is the Director of the Institute for Sexual Medicine and Center for Sexual Medicine and Professor of Urology and Gynecology at Boston University. Recently a reporter for the Boston Globe did a story on PSAS and asked for my participation. I obliged because I wanted the get the word out. There was an outpouring of contact from that article. I have heard from several women with PSAS, some who already knew and others who discovered the answer as to what was wrong for the first time after years of searching. We have networked trying to find a common link but there doesn't seem to be one. Some have children, some do not. Some are young while others are post menopausal. Some are over weight, others are not. I have put on 30 pounds from the stress and depression. The one thing we do all have in common is that none of us are thinking sexual thoughts. PSAS is not brought on by the mind. It is an actual physical disorder and all of us would rather never have another orgasm as long as we live, then live like this. Several think it is something neurological in the brain, I being one of them.
PSAS has affected women of every age ranging from 19 to 81. It is very debilitating and life altering. More research needs to be done and women need to know they are not alone. The Berman's have their own show on the Discovery Health Channel called Berman and Berman and cover several female topics. Dr. Leiblum's studies now include over forty women but she would like to hear from more women to continue her studies. You can e-mail Dr. Leiblum directly by clicking this link: email@example.com
My PSAS story has been quite a journey. I've been keeping a personal journal but will shorten it and just mention the chain of events here as they have happened: © March 2004
A reporter for the Boston Globe contacted me wanting an interview regarding Persistent Sexual Arousal and had heard that I might be willing to speak out. Of course I would speak out. It came completely unexpected but I was filled with joy and excitement at the chance to help inform the public of the miserable medical condition that I had been enduring for years. I had long since realized that my condition was one that had not yet hit the text books in medical schools, thus doctors, not only in the U.S. but around the world had little or more often no knowledge of PSAS. I was being given the opportunity to step out from the doctor to doctor door knocking I'd been doing for years and spread the word quickly through the magic of the media. It was an ideal forum.
Immediately after the article was published in the Globe using my pen name of Jean Lund, the contacts started. Media from all over the world were clamoring to get an interview and contacted the Globe wanting to get in touch with me. They wanted interviews on how women suffer from PSAS, what it is, how it affects women's lives etc. Although a few other women (who remained anonymous) were quoted in the Boston Globe report, as far as I know, I was the only woman who did further interviews and certainly the only one who had allowed her identity to be known. Did I do it for my “fifteen minutes of fame?” Hell no! All you have to do is see some of those sensationalized stories and pictures that took hours out of my life for photo shoots and interviews only to be printed with rather embarrassing headlines screaming “Woman has 800 Orgasms a Day and feels like a Sexual Freak” to know that I did it only for the attention that PSAS would get. Once you got past the headlines that were nothing less than complete bullshit because it was nothing I ever said in any interview, the heart of the stories covered the reality, the truth, so I felt it was worth it. I would do anything to bring awareness because I want the constant arousal to be gone forever as soon as possible. I interviewed for the Sunday Telegraph in London, News-of-the-World in London, Closer Magazine in London, New Idea Magazine in Australia, a newspaper in Brazil, and the stories that were published were also syndicated to the Houston Chronicle, The Chicago Sun, and a major newspaper in South Africa.
With each interview in media print I would hear from more women. Dr. Leiblum called me at home and told me she was dropping her PSAS support web site because she didn't have time to monitor it. She asked me if I wanted to monitor for her but since I didn't have access to behind the boards we decided I would start one of my own as who better to run a support group than another sufferer? I started one on Yahoo and moved her posted messages to my board. So in addition to putting my face out front in media print, I took on making a safe place for women to converge to discuss their PSAS.
It was more than I could have hoped for. Each publication brought forth inquiries from women who had been searching for years with no knowledge of what was wrong with them, from doctors and nurses who wanted more knowledge and understanding. I began requesting that information on the Yahoo board be given with each press release. I cannot explain the high of hope I was on. All I could think of was that maybe now; maybe finally I will get help. Maybe there is a doctor out there that does know what this sexual arousal is caused from and how to treat it. I was only thinking of finding help for myself in the beginning. Now my mission included finding help for all the women I had come to know on the support group board as well.
I was contacted by Discovery Health Channel Canada and asked if I would film an interview for one of their shows called Sex Files. I agreed and they came in early December and filmed me for a couple of hours, chatting and doing my daily routine at home. It will be aired on their 2004 season and quite possibly will be syndicated here in the states. I will receive a copy prior to air date. I already have copies of all the magazine and newspaper stories. One day a package arrived in the mail. Thinking it was a copy of one of the print magazines, I was surprised to find a letter from someone in Germany that had read the Sunday Telegraph article and wanted to help me. She sent me literature on a holistic treatment called the ACMOS method using a Lecher Antenna. She included two small bottles that were liquid herbs called Pin-Sylvestre and Patchouly. There was also a bottle of Pensee Sauvage gel tablets. All three had ACMOS labels. There was also a blank green slide which made no sense to me at all. I did a search on the Internet for the ACMOS method and came up with the following link. At this point I think you should take the link and read through it because down the road in this story, it will play a significant part:
After quickly looking over the web site and reading the “About Us” page, I sent an e-mail asking if there was anyone in the states, Los Angeles in particular that did this type of treatment since they are located in the UK. Dr. Naheed Brooking responded and gave me the phone number of Dr. Suzie London who lives 30 minutes from my home in Los Angeles. I saved the e-mail and set all the products back in the packing envelope and set it aside. I carried on with my daily routine of holding a full time job, running the support group, and focusing on more media attention. The demands were greater than I had thought and I had several exhaustive moments thinking I'd bitten off far more than I could chew but I'd been waiting 8-1/2 years for any information on PSAS without hearing a word. I wanted to ride the media wave as long as I could, getting the word out as much as I could, all the while praying for a miracle.
In the mean time a woman with PSAS and I began e-mailing back and forth. She is not part of the support group but had already found Dr. Leiblum on her own and had been very busy doing research. Dr. Leiblum pointed her in my direction and it didn't take long for us to have a wonderful emotional connection. Although she is not in the medical field, I found her to be a very intelligent woman who was certainly as persistent as her PSAS and also had a delightful sense of humor. For various reasons she wishes to remain anonymous and I respect her wishes. She had been working on some theories and testing some treatment and found some relief for her PSAS. She asked and I agreed to join her in her research as we began comparing notes. I started her treatment of using prescription 5% Lidocaine ointment for a couple of days, then using prescription liquid Atropine on a patch in the genital area for a couple of days and then a combination of using both together for a week documenting each day's results. She had also done massage therapy on herself on the inside of the thighs and on the low back/upper buttocks. I had far shorter relief with the Lidocaine and Atropine than she had and I couldn't do the massage at all because it was too tender which she noted she was tender as well. She made a chart to document the daily results of the Atropine and diagrams to mark exactly where the feelings were the worst and where one thought they originated from. Those are still available to anyone who wants to fill them out for research purposes and will continue to be. If anyone is interested in participating or wants more info, I strongly suggest contacting me. She continued digging in books and researching the nerves of that area, sure that there is something pudendal and/or sacral nerve related. I had thought PSAS was nerve related too ever since it began because I had TOS (thoracic outlet syndrome, a compressed nerve in my neck and scapula that required surgery) at the time. I also had an event happen at the same time that caused me to have the worst anxiety and series of panic attacks I had ever had making me think stress was related as well. I only recently contacted a top specialist on TOS and asked but was told he didn't think TOS was nerve related to PSAS. Once the specialist ruled out the TOS, I began leaning more towards the stress. I began feeling very confused and overwhelmed by my own process of trying to narrow the causes down, so I gave up and left it to my new partner overseas.
I was then contacted by Landmark Productions from the UK who was also interested in filming a documentary. After seeing the way the print media in the UK had handled the story (and I learned that News-of-the-World is equal to the National Inquirer in the states, so it's nothing more than a rag, garbage magazine) I scrutinized Landmark with a fine tooth comb. I let them know up front how terribly disappointed I was in the UK's coverage thus far and that I would not agree to participate unless it was done tastefully.
After several e-mails and phone conversations I agreed to participate and helped Landmark get a few women from the support group to participate as well. I felt very confident in their desire to portray women that have PSAS as true suffering women, not as some over-sexed maniacs that were enjoying the feelings of continual needs for orgasm release. I made them understand the complexity of the problem, the emotions and the physical pain. They agreed to show that this is indeed a true medical problem, not a psychological problem. The only psychological problems we face are the ones caused by the frustration of not being able to make it stop, from the drastic changes it makes in our every day life and from the ridicule we face if we openly discuss it, specifically with men. Even other women quietly turn on us treating us like we are perverts. Landmark was a blessing for us and promises to let us see the final version to approve it before it airs. This is in the contract I signed.
In the mean time Landmark came to the states to film. They started in Georgia where one of the women lives. They offered to fly me to GA to meet them but I declined asking them to fly the women out of the depths of a cold winter to L.A. to meet me instead. Landmark did so and really treated the women, all of us, with great respect, care and concern. Once the women flew back home, Landmark and I continued with filming plans. They were going to pay for a treatment for me if I could find and arrange one that I wanted. Back in 2001 when I saw Dr. Jennifer Berman at UCLA she wanted me to see a colleague at UCLA to discuss the possible use of a device called the Interstim. The Interstim is largely used for people who have bladder control problems but has also been used for chronic back pain and pelvic floor pain. She wrote a referral for the doctor she wanted me to see but I had such a headache fighting the wonderful HMO system that I never got the chance to see him. My thought now with Landmark was to possibly try this procedure for the pelvic floor pain, thinking it may help the PSAS. And secondly I just happen to have a problem with bladder incontinence and back problems. It would be a three fold attempt to help me.
I contacted Dr. Berman and asked the doctors name again and called and set up an appointment with Dr. Prager at UCLA to discuss a possible one week trial using the Interstim. Here is the link to read info on the Interstim: http://www.medtronic.com/neuro/interstim/solution.html
*Note: Reading through the links as you go will help you understand my whole diary.*
I was very excited and hopeful about getting some type of treatment because up until this point in the past 8-1/2 years, the only things I have tried were Afra-spray decongestant, Sudafed tablets, and every kind of anti-depressant there is which helped my depression that is caused by having PSAS but also it suppressed my ability to release an orgasm so I stopped taking any kind of meds. I tried the PSAS sufferer/researchers ideas with the Atropine and Lidocaine and had two days relief and then it returned so I was very anxious to try the Interstim as was Landmark to not only try to help me but to film it. I met with Dr. Prager and discovered that even for a one week trial the Interstim would have to be surgically implanted. I may be an idiot but for some reason I thought the device could be attached on the outside like a halter monitor and that electrode vibrations would go though the skin of my low back from the outside, but in fact on a test, the device still needs to be implanted just below the skin. If it works then it is implanted deep. Well imagine my disappointment! I was not about to have intrusive surgery on a test run for anything!! And it was rather expensive to boot. I opted out much to my and Landmarks disappointment. I had just finished posting on the support group how against the embolization I was that a couple of women had done without even really knowing all the details about the surgery and the doctor not even knowing if it would help PSAS. I was angry at the doctor for using the women as what I felt were “guinea pigs” yet I fully understood the women's desperation for help. I feel that PSAS is just about to jump out of it's deep dark cave and that we should wait to see what the medical world can really come up with that is a for sure cause and cure. But for myself personally I would not be trying the Interstim. So we only had one day left and I was wondering what else I could try. In the 11th hour I went home and went to the package that had been sitting in my office since November. I opened it up, called Sally from Landmark and gave her the name and number of Dr. London and asked her to call and see if she would do a treatment on me for the Energy healing ACMOS-Lecher antenna method. She agreed not only to treat me the next afternoon but to allow Landmark to film it. The rollercoaster ride for treatment was killing me. Dr. London called me at home the night before to ask just a few questions. My date of birth, time of birth (oh oh, my first thought is I am getting an astrologist not a doctor) and what was the very first traumatic experience I ever remembered. I recounted when I was 13 that my father (I had been a Daddy's girl) out of the blue broke up our family by taking up with someone else. My all American happy family and childhood destroyed without warning in a matter of minutes one night. Dr. London wanted me to think about that until she saw me the next day. I thought it was an odd request and went to sleep. The next afternoon Landmark set up their equipment and Dr. London arrived. She set up her large box on the dining room table that was full of those small bottles of oils, minerals, etc. that the woman from Germany had sent me back in November. She then pulled out the Acmodermil Stimulator, Lecher Antenna, a Light Stimulator and color filters. Everything was strange to me however my mind was open. After all I had nothing to lose. She asked if I had thought about what she asked me to think about … my father…. and I told yes, but that it was no longer an issue. I am 52 yrs old, had time before he died to tell him how it made me feel and that my life had been a continual path of pain ever since then for tons of other reasons. I had no time to dwell on any one painful thing. I had used food and chocolate to shove my anger, resentment, bitterness and pain down. She asked me to repeat that exact statement I had just said, over and over four or five times. Then she returned to my father and how significant it was that my trauma happened right when I was hitting puberty and how devastated I felt….the abandonment I felt. All of a sudden out of no where I just started bawling my head off…..I was in shock that I was crying but very aware of pain. She was using psychology before she even got to her box of odd looking things. She reminded me that I had been shoving feelings down with food…then she asked me where I thought those feelings were. I have to admit I was taken aback by the question and I could actually feel the perplexed look come over my face. I sat and thought a moment and then said, “Well……….I guess they are still inside me.” I understood then what she was telling me. It is one thing to just `say' you shove feelings down your throat but it is an entirely different thing to realize that those feelings are STILL THERE!!! Quite honestly I was very surprised to realize that they, like some human form were still in me, wallowing, moving, and taking up space. I grew very quiet and just watched her. She had such a wonderful sense of peace and aura about her that I felt the calmness. She brought out a small round device (I can't find a picture of it on the web sites) that was about as round as a coke can and about 2” thick. In the center of one side were several moon shaped crater indents that I could see no purpose in and didn't ask because all of a sudden I found myself uncharacteristically quiet. It was attached to a wire that led to where I do not know. She asked me to put this device inside my pants and hold it against my hair line which I did for three minutes without feeling any sensations coming from the device. I have no idea what it was for. Next she put a silver wand in either hand that were attached via wires to something I couldn't see, while she held the Lecher antenna in front of me and it moved or she moved it back and forth and up and down in front of my body (I am sitting in the chair) and she is taking readings of some sort and writing them down. She then told me that my energies were completely out of balance, whatever that meant. I knew nothing about this treatment, hadn't even really studied the information the woman from Germany sent me, had never had any type of holist approach medically in my life but did not have a closed mind either. I have lived long enough to know the basics that ancient Chinese medicine seems to really work on those who use it and believe in it. She opened up the box and brought out two small bottles of some oils or herbs and one long skinny glass oblong one. She held the antenna in front of them and made circles with the antenna and up and down for a minute or two and her lips were moving. I don't know if she was chanting or what. I was afraid to ask! She then used the Acmodynaminsation and told me I had broken my meridian lines. Good! Well whatever they are, fix them!! This little contraption is used on either side of the finger and toe nails and can cause some discomfort as it feels a bit like acupuncture needles being stimulated. She put it on the inside of my feet just below the ankle bones and I nearly blew off the chair. I learned quickly that the area there is the pressure points for the kidneys. Interesting….she also went into the web of each hand between the thumb and the index finger which again caused pain however I was still in so much pain from the kidney pressure point that I think it knocked my hearing out because for the life of me I can't remember what she said and I was so enthralled in this process that I went brain dead for a moment and didn't think to ask. She then brought out an amber colored slide…just like the good old Kodak slides but no picture. Not a damn thing in the slide. I recognized the slide though because the German woman sent me one that was green. Empty and green. She told me to hold the slide in my left hand (because I am right handed) to the light for 3 minutes. My homework was now to keep the slide, called a color filter, hold it to the light 2x a day for 3 minutes and to use my fingernail and to hit the pressure points inside each ankle for the kidneys and make counterclockwise motions 3x a day. I was basically told that by holding the emotions in my body I had a body full of bad energies and that I had broken my meridians and fuses (new education on what it means to blow a fuse). The theory is that I had kept bad energies in and in doing so had created physical and emotional problems I guess. I am still trying to understand the basics of this treatment but haven't had time to even read through the literature yet. Bottom line is that minutes had passed and she asked how I felt when I suddenly realized the complete calm especially in my clitoris. There was nothing. Being cautiously optimistic but also cautiously skeptical, I said nothing. I turned and looked at the clock on the stove and realized that three minutes had passed with no sensations, something that had never happened. I not only kept quiet, I kept still with all eyes on me, cameras rolling and me thinking and wondering and not out loud. I kept looking back at the clock, and then I would look back at a room full of quizzical faces waiting for me to speak. At five minutes I dared to raise one hand showing five fingers, yet not saying a word. I waited another minute and then told them that I had not felt one tremor, not one thing in my clitoris which was a first. I also said I didn't want to speak anymore at the moment. As the minutes passed I could feel the look of bewilderment becoming visible on my face and internally I felt very confused. Why? Because I felt NORMAL. And that felt impossible. I kept watching the clock while everyone is watching me and Dr. London is telling me that if it's gone that it's a good thing and that I shouldn't be worrying, that I should relax and enjoy the moment and I am thinking in my head, yes, right, the MOMENT….it won't last and this would be insane if I had an answer sitting in a packet in my office for the past two months and had simply dismissed it and had only tried it now as a last ditch effort to try “some” kind of treatment and to get Landmark their filming of treatment and it worked!!! How preposterous would that be???? When twenty minutes had lapsed I couldn't stand it anymore. I leapt out of the chair and paced back and forth from living room to dining room to kitchen and back again then stopped dead in my tracks not saying a word. But I was “listening.” Listening for the heartbeat between my legs, for the demon to return. And nothing. Dead calm. I burst into tears, sobbed and cried so loud my son came running out of the other room, I told him I felt nothing for 20 minutes and that I had completely forgotten what it felt like to feel normal and that I was afraid and then I looked at the Dr and I know the look of fear must have shown as I told her she couldn't leave because if she left it would come back and I'd be screwed and I cried and cried and cried. And the Dr. told me straight out that she did NOT believe I was fixed, cured or whatever. That she believed it would return, and that I should not panic because then we would just do another treatment. She tried to instill in me that it would come back and that I should just enjoy the time I have until then and that we would eventually get rid of it completely. The fact that my PSAS was gone, and that she made no claims to have “healed” me permanently and indeed stress over and over that there was a good chance it would return because it's been years and I'd been through a lot made me believe that there was really something to this ACMOS treatment. I hugged and thanked her and hugged and thanked her again and she seemed not only genuinely pleased for me but surprised that it worked as she had never treated anyone with PSAS before but said she had indeed seen several other miracles over the years. I was drained and elated. The Dr. left, the filming ended, and everyone got what they wanted.
I felt zero PSAS the rest of the night. The next day, late morning I felt the flutter of a butterfly in my clitoris and my senses perked up tight like that of a new mother listening for its young. But that was it. Nothing more. Later that afternoon the flutter came again, and oops, up went my senses again and nothing more. It was gone. I dutifully jabbed my inside feet by the ankles trying to remember which way was counter-wise causing myself pain in those areas and holding the slide to the light hoping no co-worker would see me and think I was a weirdo. But it was day two, I had only two flutters but I had the most constant dull headache and felt exhausted. When I went to the bathroom for the first pee of the day I know I made an audio gasp as I saw the brightest yellow/almost lime green pee in the toilet!!!! It looked like I had dropped a can of Mountain Dew in there and it for sure was not my color pee. I was absolutely awestruck at how this woman came into my house, with a bunch of foreign-to-me paraphernalia, had stopped my PSAS, gave me a headache, made me exhausted and hadn't injected me once nor made me swallow anything and changed the color of my urine! Within three days I felt a couple of clitoris movements that were more than a butterfly and tried not to panic. They didn't last and I tried to remember that she said they might come back and not to panic if they do. Obviously I had been PSAS free and did NOT want it to come back so logic could tell me not to panic but emotions are stronger than logic. I worried myself back into almost full time PSAS by the end of the week; however it was not nearly the intensity it had been before treatment. I spoke with Dr. London on the phone who tried to calm my worries with the reminder we would do another treatment and she said the headaches and different colored urine were normal because it was my body getting rid of toxins. I just was amazed at how that all happened without one thing being taken internally. Two weeks went by and I went to her house for a second treatment. It was mostly the same but she did a little bit different things and to be honest with you I did not pay enough attention and do not know why with such an important event. I should have been taking notes. At any rate it was an hour of the antenna, the pressure points, and whatever else she did. I left feeling nothing, glad to be PSAS free again but within an hour I felt it return. I was so upset and disappointed, yet it still wasn't painful, disruptive and was livable in comparison to what I had lived with in the past. Again I had headaches but two days later I was on the way to my brand new job and I had to pull over and throw up. It was clear yellow bile looking liquid. I thought shit girl you are a toxic waste dump!!!!!!!!!!! Was this all my bad energies doing a poltergeist? Had I puked out my meridians? Had I known what a meridian was I would have known what to look for! L I felt weak, tired and over all unwell the rest of the day but was better by the next day however the PSAS was still back…still not painful or extremely bothersome. So I put myself at ease and told myself she said it would take more treatments and it was better so carry on.
In the meantime this energy healing really got my interest so I did a search for Los Angeles energy healers and found Dr. Hirano. Here is a link to him: http://www.energeticsforhealth.com/
I made an appointment with him even though he doesn't do the ACMOS method. He does energy healing and acupuncture and I wanted to see him and compare what he said to what Dr. London had to say. The stuffing of emotions and stress down inside and letting them reside there made perfect logical sense to me because she was right. Where did they go once I pushed, and used food and chocolate and humor to shove them down? They are still inside me and I have years and years and years of pain and anger, resentment and bitterness still in there. I would certainly imagine it would wreck havoc with one's body after a while and perhaps that one time when I had the worst anxiety panic attacks I had ever had and PSAS started soon afterwards was my “fuses” finally being blown. I had my answer to my PSAS. Or did I???
Dr. Hirano being typical Japanese was a very clean cut, quiet, gentle man. I felt a nice aura and karma the minute he entered the room. I sat on the table in my gown as he stood in the doorway saying nothing more than hello but just staring at my gown. Finally he told me my posture was way out of balance. I had sent him an e-mail a week before coming that had links to Dr. Leiblum and her article on PSAS, to the Boston U's web site with the info on PSAS, to my own web site and to the ACMOS method web site so he would know in advance why I was coming. He said I had provided very good information but that he did not do ACMOS treatments. I let him know I knew that but that he does energy healing and I want to know what he thinks. He asked me if I slept on my stomach. I said no. He asked if I “ever” slept on my stomach. I said yes, all of my life until my first pregnancy when advanced months made it impossible and that ever since I have never slept on my stomach again. In fact every night I toss and turn and do not sleep in any position. I told him about Dr. Berman doing the Doppler exam and telling me I had blood pooled in the clitoral area and vasocongestion. But that I had been to two different doctors who examined me after learning that and both said they saw no evidence of blood pooling. There would be engorgement and there was none. Dr. Hirano immediately said he did not think that PSAS was a pooling of blood or blood related but he believes it is nerve related. He then had me lie on my stomach on the table putting my face in the hole like a table at a chiropractor. He felt around and told me that my right sacral bone was not in place, that it is tilted to the right and down and that it very possibly could be making nerve ending in the sacral nerves extremely sensitive. First thing I thought while lying there is, there goes my for sure theory on my stress being crammed into my body and residing there. The second thing I thought was hooray for my partner overseas doing research who has said she felt the sacral nerve was one of the nerves involved all along. How stoked she will be! My third thought was that perhaps, at least in my case both the stress packed body of emotions and bad energies, broken meridians and a sacral out of whack are all the causes and there isn't just one cause. So Dr. Hirano pushed on my sacral bone, up and to the left towards my tail bone trying to move my sacral bone back into place. He did not cause any pain but as he got closer to the center of my tail bone there was some discomfort that would have turned to pain had he not quit on his own without me having to say a word. Here is a link to read and see the sacral area up close: http://www.nlm.nih.gov/medlineplus/ency/imagepages/19464.htm
He then put needles in the back of my wrists, my ankles and my lower back and left them in for twenty minutes while he left the room. When he returned he said he had also done some energy healing on me and said that my hypothalamus was out of balance in my brain. Here is a link on this:
Of course my fellow PSAS sufferer says she could have told me for free that my brain is out of balance as she discovered that along the journey of our getting to know one another. Hardy har har! J I am going back to see Dr. Hirano next Saturday for another treatment.
The bottom line of my treatments is this:
I do not have near the PSAS I had prior to my first ACMOS treatment with Dr. London. And although it returned, it is much more manageable. After treatment with Dr. Hirano for something entirely different, (sacral verses emotional stress) my PSAS calmed down once again. SO…..it may have more than one source causing it. What causes it for one woman doesn't necessarily mean that it is thee cause for every woman. What has helped me may not help you but then again it may. I have waited to tell all of you what my treatment was for a couple of different reasons. First and foremost I did not want to jump up and yell one or two days after the first treatment and say I had been cured and found the treatment when in fact it could return and I was told as much. I wanted to give it some time to see what would happen. Then after it started to return, even though it was still manageable and not constant I wanted to go to Dr. Hirano and see what he had to say, to compare so-to-speak his energy healing thoughts to Dr. London's. While the two have very different reasons, I am very glad that I saw both and it has led me to believe that I have a couple of different causes of PSAS and that I can get a handle on it with treatment, and not much of it being western medicine. I am very surprised, yet not surprised at all if that makes any sense. I am going to continue with treatments and I may alternate Dr. Hirano and Dr. London and work on both sides of the coin so to speak but all I can say is that something is working here besides Crisco! HA! Which did help by the way….can't wait to tell the doctors, all of them, Dr. Leiblum included. Also I noticed another huge difference since treating this way. My orgasms are no where nearly as deep and intense to the point of almost painful at times. They are “good” orgasms if there is such a thing after all I've had, which is far better than so strong they knock the socks off every single time. Another reason for the delay in telling you other than these treatments, was that I wanted to set up how I came to this point by starting back in November which has taken some time to write. And also being sick this past week put another delay on it. Now I have shared all that I can with you.
I am sure my journey with PSAS doesn't end here. Even if mine completely disappeared today forever and ever, as long as there are women out there who continue to struggle, I will continue the journey with them. I also interviewed by phone with a journalist who runs a talk radio show in New York City however he is now thinking more along the lines of a major magazine story coverage. I asked Dr. Leiblum to agree to be interviewed and she accepted so that may happen sometime this week. He will then have someone medically credible and it will give her a chance to mention her survey web site. And as I mentioned earlier there are a couple more producers and a major TV station in the UK waiting in the wings for my green light but I promised Landmark I would wait until their project airs first. So unless the others lose interest in the story by then I will do yet another round of media coverage. Someone losing interest in sex??? Imagine that!!!
I was quite right in the last paragraph when I said my journey with PSAS doesn't end here. My friend, who I met through our mutual PSAS, who lives in Australia and has been doing wonderful intense research on this condition (and who has dubbed herself Sherlock Holmes and me Dr. Watson) has been saying ever since I met her (not in person mind you as we live planets apart) that she felt this was nerve related. I have listened to her, and skimmed through material she has researched and sent me via e-mail but have never looked at any of it in a studious manner. She has ADD in that she dives into something head on and patiently looks through more crooks and crannies than the average person. I have ADD in that I haven't got the patience to look through the crooks and crannies so we make a fine pair! She does research on her own, I scour the Internet and give her leads to research and she will use me as a guinea pig sometimes to try out certain theories she has. But someone else on the support group just posted a link to information on the pudendal nerve and I guess it came at a moment when I really had the time and inclination to read through the web site and low and behold I was hit like lightning! After reading all that I did, with the symptoms and causes etc. I am now questioning for the first time since learning the name of PSAS in 2001 if there really is such a thing as PSAS. I now believe that I most certainly have a pudendal nerve entrapment, which is not well known and almost always misdiagnosed. I have an appointment with my primary physician later this week, who knows nothing about PSAS but I am going to fill him in on that and PNE (pudendal nerve entrapment) and ask to be referred to the only doctor in Los Angeles who treats this. (There are others across the country but not many, now what does that tell you???) For information on this please visit
http://www.tipna.org/ and click on the Symptoms link from the top left hand side of the page. You may find something very interesting there!
Made an interesting discovery in something called the Sacro Wedgie. It's claims are as follows:
Learn about the evolution of the Sacro Wedgy® and how it has helped lower back pain, hip pain, "pain in the butt", common to runners, golfers, tennis players and all athletics. Learn how it has helped others with fibromyalgia, piriformis syndrome, scoliosis, knee pain, back pain, sciatica and more. The Sacro Wedgy® is not ALWAYS a quick fix, but it's great when it is! The Sacro Wedgy® is a "tool" to use and like any "tool", you will get out of it, what you put into it. You're taking responsibility for your own back care.
So I purchased one this week and I have to admit that by laying down on it for the first twenty minutes my nasty low back pain just vanished! I'm not exaggerating! And so I took it with me on my morning commute by train and tried to use it on the seat there but it hurt, I think because the seats are metal and hard. I should have taken the sponge pad they give you with the wedgie along. But I used it off and on for 10-15 minutes in my chair at work and once again it stopped any low back pain and get this!!!! My PSAS muscle spasm/nerve ending tremors were cut in half and very manageable!! This little jewel was the best investment I have made in all the years of my suffering. I have posted the link to their web site on my own support group as well as on the Pudendal Nerve Group's forum at Tipna.org. I surely hope people with either problem will at least go visit the site and give it a shot. For $30.00 what do you have to lose and what in the world are you waiting for? http://www.sacrowedgy.com/index.htm
Mick Jagger sang "You can't always get what you want," but perhaps he should have taken some lessons from me. When I put my mind to something I CAN always get what I want. I went through hell in May to try to get to see Dr. Jordan, the Pudendal Nerve Specialist in Santa Monica. I asked my primary for the referral to Dr. Jordan, the neurologist who is outside my group. After two weeks I called to check the status only to have my doctors nurse tell me it was "approved but modified." What the hell does that mean? Well it meant they changed the referral from Dr. Jordon to a "urologist" within their group!! I was pretty pissed off but have been through this all before. In the past I always gave up out of frustration. This time I decided to play their game...and it wasn't a fun one. I saw their urologist, armed with my print outs on PSAS and Pudendal nerve. He looked at me and asked why I came to see HIM with THAT. I could have been insulted but instead I threw it back in his face. "Well because I was FORCED to come see you with THIS, that's WHY! I didn't WANT to come see you, I asked to see Dr. Jordon." He shook his head and sent me away writing a referral to see Dr. Jordon. A week later along came an approved authorization for me to seek mental health!!! I called the group and asked who requested it. They put me on hold then came back and said ***I*** did!! I did NOT I proclaimed but then went into a tirade of how I would need to see one after all the crap they've been putting me through to see doctors I don't need and not letting me see the doctor I NEED to see. A few days later came a letter from my primary's main office where the "board" denied me to see Dr. Jordan, but authorized me to see THEIR neurologist. Not surprised I called to make an appointment. They asked if I had MRI results to bring. No, I didn't because I could never get a doctor to order them. I had always been denied. Well they said I needed to have my primary order those so the neurologist could read them on my visit. So I called my primary's nurse back and explained that I needed an order for an MRI of the lumbar, sacral and pelvic region. Two hours later she called me back and told me the doc wanted to know how I knew what area I needed an MRI of...well by this time with all that had happened with docs etc. I lost my cool people. I blew so hard I had co-workers heads popping over cubicles like ground hogs!!! I said "Well if the doctor would have READ THE PAPERWORK I GAVE HIM ON PSAS ON PUDENDAL NERVE ENTRAPMENT HE'D KNOWWWWWWWWWWWWWWWWWWWWWWW HOW I KNOW!!!!!!!!!!" I mean I just ripped the docs head off via his nurse. So later she called and left a voice message on my phone the next day (surely afraid to talk to me) stating that the doctor was NOT going to approve it.
"You can't always get what you want." Just watch me:
I called the main office of my primary and spoke to the office manager and didn't come up for air for ten minutes. I told her I had (and I had) made a call to the Los Angeles Bar Association and that I was going to hire an HMO attorney to sue the socks off them because I was sick and tired of getting the run around, and having them "MODIFY" my referrals to doctors that I didn't need. I have seen urologists, neurologists, internists, neuro-urologists, psychiatrists and everyone in between in the past nine years and I was not about to be denied treatment not ONE MORE TIME!!!!! She asked me the specifics and I faxed her the PSAS and PNE paperwork along with a few web sites. She called me up and said "I am going to be your 'angel.' I am going to gather all this info and take it to the director and see to it that you get the help you need." Still pissed off and even more nauseated at her self proclamation of being my "angel" I only responded, "Well, we'll see if you're my "angel" or not." A week ago I got another voice message from my primary's nurse saying they were going to go ahead and put in the request for the MRI and see if it was approved. Hmmmm...well GEE, who do you suppose told them to put in the request? Probably their main office that has been 'MODIFYING' and jerking me around all this time....do ya THINK they might AUTHORIZE it???? Well geeeee....my guess would be, hmmmmmmm ahhhhhhh yeeeessssss! DAH!!!!!!!!! So yes they authorized it and I went and finally had my not one but TWO MRI'S to cover the lumbar and sacral area and the other for the pelvic area. I must say. Both took a total of 2 hours and the pain laying on that small pad was damn near unbearable. Especially for the pelvic MRI. He had to tie my feet together which created the worst low back pain I've ever had and I have back pain often. I prayed to pass out but God wouldn't allow it. Once he was done, he literally had to pry me off the table and I couldn't stand up for several minutes. I came home and took a hot bath in mineral crystals and drank two glasses of red wine. The technician said that the low back area was my sacral area and where the pudendal nerve is and my PSAS was off the charts throbbing for the whole two hours so I am going to be very very interested in what the results are going to be. And even more interested to see what "their" neurologist is going to do about it. So guess what? You CAN always get what you want....you just have to want it bad enough and sometimes even just come to the end of your rope and come out fighting!
Somehow I skipped July. But July was fairly uneventful. My test results for the MRI's (lumbar, sacral and pelvic) showed a bulging disc, nerve compression at the root in T12-L1 disc, bone degeneration and a 3" ovarian cyst. I called my gyno and went in for an ultra sound and blood work to check for cancer and all is well. I have since been turned on to the books Healing Back Pain and Mindbody Prescription by Dr. John Sarno and absolutely everything in his books make perfect sense to me for the disorder TMS which unfortunately now ads just one work set of initials to the list. TMS stands for Tension Myositis Syndrome. If you'd like more info you can take this link to read about it:
I went back to the pain management doctor that the medical group forced me to see and told him prescriptions were not helping me. He wanted me to continue them for another month and come back and see him but I have since quit the med's and canceled my follow up appointment. I am not going to waste my time. I started seeing a therapist to spout off my anger and frustration etc. He suggested that I see his colleague one time to get put on med's for bipolar as he decided because my mood swings go up and down and I talk fast that I am bipolar. Just one more doctor I had to set straight. I am NOT bipolar. I even researched it on the web. I'm not. I have a perfect right to the emotions I have been going through. Frustration with the HMO system, frustration towards all the doctors and the time I spend repeating myself to each new one, and then I have trouble going on in my personal life that is causing suppressed anger, rage in fact, that really relates to very hurt feelings caused family members. Which now brings me to Dr. Sarno's books on TMS, which I am certainly a high candidate for. I will see Dr. Jordan August 11th for a consultation on Pudendal Nerve Entrapment, but I am now also going to see Dr. David Schechter in Beverly HIlls who studied under Dr. Sarno and is well known on TMS.
I met a new member who lives not too far from me. She recently flew to see Dr. Randall Craig just outside of Phoenix. He is a reproductive endocrinologist who not only has a great interest in PSAS but has access to some research funds through the University of AZ. He is interested in the hormone levels of three hormones in particular: 1.progesterone, 2.prolactin, and 3.oxytocin. He has tested her and is attempting to treat her. Her account of the visit is on the support group, post # 3754. So it is good that she is attacking this from the hormone side. There are three women who have been to another Pudendal Nerve specialist in Minnesota and all had nerve blocks. Two had relief, one did not. Two were told they should have surgery and they both are planning to follow through with it. I will have plenty of questions for Dr. Jordan when I see him as I am not too keen on the thought of having surgery when the odds are 50/50 for relief or a "cure." After reading Sarno's books, I have to wonder about the correlation between TMS and PNE so I will let the women on the board who have the surgery speak out on that approach while I seek out the TMS treatment of which I am still just learning now.
In the mean time a seasoned free lance writer has contacted four of us starting with me and will pitch the story idea to the national magazines that all turned my free lancing down. At least she is well established over many years so she has a better shot at it than I. Whatever it takes is fine with me. I also have been approached by King World and have the green light to talk about PSAS on an upcoming segment of one of the episodes of Inside Edition. A few of us will have to fit PSAS into a very tight two minutes, but two minutes is better than nothing and I am hopeful for the possible outcomes as a result of the exposure. As I stated before, originally it was only for me, but that was before November, and interviews, and discovering more women out there that are just like me, and knowing there are hundreds or more that haven't been reached and need to be. And more importantly, doctors need to be taught some things that they didn't learn in med school. Ethics, conduct, compassion, listening, reason, and the possibility that there is something new. Who knows, it may be something old. As my friend Don, who is a long time chiropractor and holistic health doctor said, perhaps PSAS has been around for ages and was labeled as nymphomania. Who would listen to those women? There were labeled as sluts and whores……
Mid August I finally got my appointment with Dr. Sheldon Jordan in Santa Monica and Dr. Schechter the same day, later on. Dr. Jordan was an absolute jewel. He spend a solid hour with me (how many doctors do that anymore) taking my history and allowing me to ask the pre-determined questions I had written out. He didn't recoil at the fact that I have constant muscle spasms in the genital area and although he hadn't seen anyone with that specific problem he does feel I may have an entrapped pudendal nerve, I couldn't help but wonder why, because upon examination I didn't have the excruciating pain that so many members of the Pudendal web sites had described. He checked the eye movement, my tongue, teeth and gums, pressed on my tail bone which one side was a little more discomfort than the other, but neither were painful, pressed on the outside of the anal region while having me squeeze, and used a Q-tip on the inside groin and pelvis are but there was no numbness. He doesn't do PNE surgeries but did suggest that I try the injections. He also thought some pelvic floor physical therapy might help. He was to write a report submitting to my doctor and the primary's main office's manager who was responsible for unblocking my way to get to see him in the first place. I was grateful that he didn't ignore my plight or try to shove it off on to someone else. I left feeling the time spent was time well spent, and killed several hours until my late afternoon appointment with Dr. Schechter. I was very excited at seeing what I felt were two very good doctors that might have some ideas or treatment ideas on the same day. I floated the afternoon away on a cloud. Well in reality I met up with a friend in Beverly Hills, not far from Dr. Schechter's office and we went to see a movie called What the Bleep Do We Know?" Neither of knew exactly what the movie was about other than spirituality, cosmos etc. or something like that. At the end of the movie after we exited, I grilled my friend to ask her if she was sure if she didn't really know what the movie was about before we arrived. She swore not. Here is a link to read what the movie is about if you are interested. It wasn't really a movie but a documentary: What the Bleep (click the words What the Bleep to go to the web site). It felt like a precursor of what was to come later that day.
I arrived at Dr. Schechter's office. He was running 15 minutes late and actually had the decency to come out into the waiting room, introduce himself and tell me he was running late himself. Had I not already been sitting I would have keeled over from the shock! Once again a very very nice doctor, soft spoken as was Dr. Jordan, and concerned, caring. I had brought not only my MRI's reports but the actual film with me for both doctors to read or look over. Dr. Jordan reviewed both, Dr. Schechter reviewed the written report only. He did very little in the way of a physical exam as I had provided him a list of all docs seen in nine years and all tests and attempts at treatment that had been done. I told him that after reading Dr. Sarno's books and answering the TMS questionnaire I had printed off his web site before coming that I had already self diagnosed myself as having TMS, not just TMS, but severe TMS. I was there only for him to take over treatment. I mentioned to him that the only time I do NOT have my genital muscle spasms is while I am swimming. I had mentioned this to Dr. Jordan too. Dr. Jordan felt it was because there was nothing to put pressure on the genital and anal area while swimming which made sense. But so did my answer to Dr. Schechter's question. He wanted to know what swimming represented to me and the first words out of my mouth without thought were, "Well, I grew up in rural Minnesota, on a resort lake, so I was a water baby. They were the happiest days of my life." He just looked at me and said perhaps that was why there was no pain while swimming....because I related swimming to the happy times in my life. Made perfect logically sense to me. But so did Dr. Jordan's theory. I decided not to "choose" between the two but to incorporate what I felt made the most sense for me between both doctors. I told Dr. Schechter what Dr. Jordan said fully expecting for Dr. Schechter to totally dismiss Dr. Jordan's theory. Surprisingly he did not. He actually did the opposite. That is part of the process. He wished all medical doctors would treat the mind and body as one. He didn't have to try to sell me on this products, I willingly asked. He handed me a publication that he wrote called The Mind, the missing piece in the back and neck pain puzzle. I purchased a 3 CD set that he has as well describing the theory, the diagnose and treatment and the psychology of TMS. They are fascinating! I also received a workbook where there are pre-prepared questions that I must journal answers to each day for a month..averaging 4-5 questions a day. He also gave me a short list of psychotherapists that do the Sarno TMS method treatment. I made my appointment with one who has Saturday appointments which takes a huge stress load off of me. So I began my therapy. I am using Sarno's books by re-reading them, reading Schechter's publication, listening to his CD's, journaling and seeking therapy. The therapy is very interesting as well. It's a combination of Mind, Body and Spirit therapy with the use of kinesiology, (click the word kinesiology if you'd like to read more about this technique) and a behavioral barometer, oils and talking. I have actually been able to stop my throbbing when I work on it, so I know there is something to this. I have been able to calm the demons that have been controlling my life for nine years. Is my PSAS then gone? Hell no it's not gone!! I have just begun this treatment. It is a process that could take days, weeks or only a few months. But I do believe just for logical reasons that the brain can and DOES control the body. But it's not as simple as just telling the brain to stop the PSAS. I, for one, have ALWAYS known that I have a tremendous amount of suppressed rage and pain. It is these things that I need to let escape from my subconscious, and my unconscious before they will stop attaching my body. I also intend to attach PSAS from a neurological point of view with regards to the PNE. If my HMO approves it, I will go for the injection from Dr. Jordan to see if it helps. If they approve pelvic floor physical therapy, I will do it. But my main focus will be on the TMS therapy which I believe TMS has highly contributed to my disorder.
The Discovery Health Channel Canada called me. They came to my house last December and filmed an interview with me for a show they air called the Sex Files. At the time I knew they didn't have near enough information, but said nothing. Now they say they have heard more about me (someone must have started researching this) and they would like to come and do an additional interview to expand the coverage for the segment. Hm. What a surprise! They will be here on the 22nd to continue filming. Inside Edition said they will be start planning for their segment right after they finish covering the Republican convention so that should be soon now too.
And the beat goes on..............
Hard to believe all these months have flown by. But they have been very interesting ones with regard to PSAS, PNE and TMS. Let me try to give a synopsis of what all has transpired in the past two and a half months. I started treatment for Dr. John Sarno's method of TMS using his mindbody connection. I have seen Dr. David Schechter in Beverly Hills four times and have started specific mindbody psychotherapy treatment with Dr. Jenkins.
Three women on the board have had the pudendal nerve surgery. As far as I know PSAS has not stopped for any of them but they believe it has diminished some. They were told that it could take 2-3 years for the nerve to heal since it had been entrapped for so long. I find that hard to digest but support the women's decision. One woman, who has not had the surgery or anything else is writing a book on PSAS. I don't know how she will get it published unless she self publishes. No one will be interested in an awareness book that hasn't got an "ending," in other words, an answer or reputable interviews from the medical field. Plus one needs to have an agent in order to even get a book reviewed by a publisher. But perhaps writing will at the minimum be therapeutic.
The documentary "Extraordinary Illnesses" has started showing in Europe, having been on air in Sweden, Denmark, France, and the UK. The Discovery Health Channel episode of "Making It Work" aired in Canada on the show The Sex Files. I have copies of both shows and was shocked to find an interview with both Dr. Leiblum and Dr. Berman on the Making It Work episode. I wasn't informed but was glad to see them because having two doctors discuss PSAS will bring credence to my own story. Producers for the show returned to L.A. last month to do a follow up interview on film with me to be shown on another show called Sexual Secrets. That is to be shown sometime in the new year and will cover the TMS treatment and how I have improved.
I have gently pushed two of Sarno's books to the support group and several have started reading or have read them. One doesn't think it applies to her, one doesn't grasp the idea of a mindbody connection and self talk to the brain, two have seen significant improvement in their PSAS symptoms and one swears it is completely gone. I am one that has seen improvement as well, so that makes four of us. I am not saying that TMS is the cause of PSAS. There could be a few different causes or more than one cause for any one person. TMS treatment will not work for closed minds or apprehensive people. But for those who really grasp what Dr. Sarno is saying, which is really simplistic and common sense, it will be something that can significantly change not only PSAS, but IBS, digestive disorders, allergies, fibromyalgia, and a host of other chronic conditions of which people have found temporary or no relief from. Even most doctors are leery of the concept, but they are also close minded to one having unwanted genital arousal there-fore I am close minded to doctors and am doing what I know works. Perhaps doctors just cannot accept thinking outside the box. Maybe they are afraid of how many patients they will lose, there-fore how much money they will stop earning and how many prescriptions will go unfilled if something as simple as Dr. Sarno's method really works. It is rather hard for me to think otherwise when one doctor in particular wanted $25,000 when asked if they would participate by giving an interview for Extraordinary Illnesses. I've lost respect for doctors in general but not all. I am improving and it may well become a way of life, to use the mindbody connection, but it costs nothing and the outcome is incredible. What could be better than that?
Now to catch up the past three months. As it stated in November I began the Mindbody therapy with Dr. Jenkins for Tension Myositis Syndrome. I have to admit that I really really am impressed and like this therapist. He is gentle and repeats often that he "hears" me and "gets it" when I speak about painful or angry issues. To recap what Mindbody therapy is, it is dealing with suppressed emotions which can include rage, anger, pain, sorrow, grief, stress, worry, and anything else that is negative and holding on. The premise is that yes we could very well be aware of things that have bothered us but we also acknowledge them at the time and then still unresolved, we suppress them into our subconscious or even our unconscious minds and go on about our lives. The purpose of the therapy is to work through them and clear the path ways so that we can have a healthier life, both physically and mentally. With regards to Sarno's theory on Tension Myositis Syndrome, when we try to deal with any of the above emotions but really don't want to or just can't take the pain of going through it, our mind steps in and causes a deviation for us. The way that is done is by the mind suddenly attacking the body. With that being said I would like to catch you up to date on my life since this therapy started keeping in mind that my therapy with Dr. Jenkins began in November.
Shortly after telling Dr. Jenkins a broad overview of the history of my life since inception 52 years ago, I started having a nagging burning in my right upper stomach, just below the breast. It wasn't unbearable, but intermittent and noticeable. Off and on it would become stronger, to the point I was pushing in on it trying for relief. I decided to go see my family doctor to see what the cause was. I took a couple of hours off work to go to the appointment because in the mean time I started having what felt like ovulation but being 10 years post menopause I knew that couldn't be so, so since my OBGYN is in the same office as my primary, I made an appointment to see him the same day. My primary ordered blood work and an ultra sound of the stomach area. I requested a chest x-ray as well. My OBGYN did a Paps test and ordered a pelvic ultra sound. I scheduled the ultra sounds and x-ray the same day so I wouldn't have to keep taking time off work. I worried that my employer would become upset. So there were another couple of hours off work.
The stomach ultra sound showed nothing. No gall or kidney stones or anything else that could be causing the burning. The chest x-ray showed a small nodule on the bottom of my right lung so I was glad that I had requested it. I smoked for over thirty years quitting cold turkey in December of 2003 and now at least I am aware of it and can have it watched. The pelvic ultra sound showed an ovarian cyst!! I am getting a bit upset by this time because all I came for was a burning stomach and nothing was found but instead now I have a lung nodule (with worry about cancer) and an ovarian cyst! My primary asked if I had acid reflux which of course I do but never in my stomach. Only in the upper esophagus. She wrote a referral for a follow-up with a lung specialist and ordered an MRI to test the stomach further. Another couple of hours off work. :(((
I went for the MRI and they asked if I was allergic to iodine which is found in shellfish. I'd never had an MRI before but told them I had eaten fried shrimp the night before. The MRI was done. I went home and within a few hours my face turned puffy and beat red, two welts broke out on my upper chest, and my eyes and lips became swollen!! It was after hours so off to urgent care I went where I got a shot of cortisone and some cream. I had to take off work yet AGAIN to see my doctor the next morning because it was worse. Again the MRI showed nothing in the stomach but did show a cyst on my liver!! At first mention my thoughts filled with stress and worry over liver cancer but was told that it was nothing problematic and could be caused by diet and weight. It was right around then that I started thinking about Sarno and the Mindbody therapy and how in order not to expose the painful feelings, the mind will attack the body instead to keep ones self at bay. I still questioned that idea a bit but not as much now.
By now its past Thanksgiving and Christmas is approaching. My primary refers me to a Gastrologist for further discussion of the stomach pain. All the while Dr. Jenkins, in therapy has been saying the pain is only a pain in my gut from my not being able to "digest" the emotions I was coming in touch with during sessions. He said there was nothing wrong with me. I guess he was hearing me and getting me more than I was hearing and getting him! And yup, you guessed it, another couple of hours off work to get to the Gastrologist, which was causing me increased stress about taking time off work.
Well I hate to share so much detail but because I feel it's all related, I must. It was early December when I also started having bleeding hemorrhoids, as if I didn't already have enough going on! I see the Gastrologist and he has seen the MRI results and did my colonoscopy not quite a year ago and he doesn't know what could be causing the burning in my stomach. It has me double up on my Prevacid for acid reflux. I finally believe the mind body therapy and the fight to "digest" my emotions as related to the "gut." Surprisingly enough, yet not too surprising, once I gave in to that theory, the burning in my stomach has stopped and hasn't returned. I swear toGod!! So I stop worrying and focus on the fact that the liver cyst is no threat and that I will be watching the lung nodule and ovarian cyst. Now that I think about it, I believe that feeling of ovulating hasn't come around so far this month. Could it be??!! Sarno!
Thanksgiving and Christmas came and the rest of winter as well and it was the first winter since 1997 that I didn't suffer a strong case of seasonal depression. I feel so good about that! All the while I am continuing with my therapy, touching on issues, thinking I am making progress and what happens? The day after Christmas I am finishing re-decorating my bedroom. I have to describe my bedroom which has become my peaceful, Zen like tranquility room full of real trees and deep green plants with giant leaves and exotic blooms. There are two small fountains with rocks and candles and waterfalls. I hung prints on all the walls of ducks on ponds, and mountains with a deep red/orange sunset sinking behind it. Below runs a narrow river through a valley surrounded by forests. Another wall has a lush green forest with a white waterfall running down the center. The wall over the dresser has the biggest print of all. It stretches perfectly across the middle section of the wall and shows forth a place that looks familiar to me. A set of birch trees spread wide during autumn with all the wonderfully warm colors of burgundy, yellow, orange, red and gold hanging from their branches. A scene that is so comforting to me. Every poster makes me at peace. I love my room. Anyway I was standing on my bed roping twines of leaves around the top of the pine four poster bed and as I went to step off the bed, my socks slipped on the satin bedspread and I fell off landing on my chest on the corner of the night stand. Off to the ER I went, staying there for 22 hours. To make a long story short, I suffered a hair line fractured rib, a 5% punctured lung (I don't even want to think about what more than 5% feels like; it was the most painful thing of my life) and sprained my knee. Two months later (now) the doctor thinks there may be a torn ligament instead and wants me to see an orthopedic and have an MRI. Well guess what?? I missed two weeks of work after falling, and another day just last week due to catching the season flu! My leg can fall off for all I care. I actually told Dr. Jenkins that I don't know if continuing therapy is safe for me anymore! I joked about it but the thought is really there. I worry about it.
So in my pursuit of the holistic path to try and help my PSAS I continue to have quite the journey. On another note though, the support group continues to wax and wane in membership. If everyone that had joined stayed on there would be about 100 members now. As I write this there are 53. I do know that media, and clinical people stop in and look though posts for research. I am hoping to start working on getting some more media attention on this matter. The women on the board are very intelligent and have grown a lot since first joining. Being very shy to discuss this at first is the norm, but eventually even those who have been members for many months and never once posted warm up and post.
I want to share here the main five "suspects" that we feel in some may be contributing towards PSAS.
1. Hormones, specifically Prolactin Oxytocin:
Most of the women seem to either have problems at the time of periods, are peri-menopausal or started menopause around the same time as PSAS started
2. Pudendal Nerve Entrapment:
Many feel there is a nerve of some type in the genital area that is involved. Three support group members had surgery on the Pudendal Nerve, although none of the specialized doctors that perform this type of surgery have ever performed on someone complaining of constant arousal. One of the three feels she had significant improvement with the surgery; however she added several hyperbaric oxygen treatments and still cannot say without a doubt that her PSAS is gone. One says she feels some relief but that she still has plenty of PSAS. And the third had a horrible experience with the surgery, and it did not stop any of her PSAS and has caused her significant depression.
3. Tension Myositis Syndrome:
The theory that Dr. John Sarno has for treating back pain also has worked on many other physical symptoms with success. One condition he has had success with is Fibromyalgia. Two women on the board have bought his books and had some success in getting the intensity of the PSAS to lower. Another says she that although her PSAS is not gone, she has hers under control applying Sarno's. And this is the approach I am currently taking. None of us can say with certainty that our PSAS is gone either.
This one is important because almost everyone in the group is or has been on SSRI's and for many they say their PSAS started when they went on one or coming off one, me included.
5. Brain neurotransmitter or hypothalamus out of balance:
Dr. Randall Craig in Arizona is a member of the board and has research funds for PSAS. He wrote a report on PSAS and listed a few different possible causes and a neurological defect is mentioned in his report. This can be found in the Files link on the support group web site.
So this is the latest update on PSAS for now.
The only thing new so far is that out of the blue I received an e-mail from Dr. Goldstein from Boston U. He said that one of his patients, out of desperation had decided to have ECT treatments (Electric shock treatment). According to him this was her latest e-mail to him:
"I never thought I would be normal again. It is like being reborn. I have no residual PSAS symptoms. I have rejoined the human race. I have been married twenty-eight years and my husband is quite glad to have me back. Whatever was wrong with my brain has been reversed by the ECT. Now I am not on any medications!! I am able to walk my German Shepherd the three to five miles a day she wants--used to be very hard with the PSAS--and I have lost the first ten pounds already."
We will see how long it lasts. I wrote back asking for a contact with this person, either her e-mail address OR give her mine...but my contact with Dr. Goldstein seems to have fallen in the same direction it always does. He sends me an e-mail and then when I reply with questions I never hear from him again. This leads me to believe that he is using me as bait so that I would post this info on the support group and then he would have lots of guinea pigs come running to him so that he can try this approach with them as well in the scheme of his "research." He did say, "We have "cured" or improved quality of life in a series of women with PSAS - we are going to publish these cases soon," however I will wait to see if and when these are published. How many is a "series?" And if he has had success why hasn't he put it forth so that women on my support group could ponder and decide whether or not to see him? I smell something fishy and always have. And nothing about that has changed for me with this most recent contact. As a result, because it's such a drastic step and because 3 women have already had the painful Pudendal Nerve surgery (with only one seemingly better but not PSAS free) I decided not to post his info on the board. Not until I had more info, which looks like I am never going to get from him so I let it be. But we do have some very intelligent beings in the support group and one had for some odd reason, decided to contact Dr. Goldstein's office and he told her about this woman. So she posted it on the board herself and now women are getting "excited" and thinking about trying shock treatment. Even though we have researched some and found the dangers of it and posted the info. Well I am no one's mother and I cannot make their decisions for them, however I truly feel this was a "lure" to get more women to try ECT. The good thing is that somehow the woman who posted this info on the board also was given the contact info for the person who had the ECT treatment, so if the contact is legit, then at least we can see how long she remains PSAS free.
One thing I thought of was my ACMOS treatments I had with Dr. London during the filming of the documentary. When she used her laser acupuncture "pen" on the instep of my feet I felt a jolt like electricity that made me jump and cry out for a minute. Shortly after I too, was PSAS free for the first time in 7 years, and it lasted for a couple of days before returning. So it will be interesting to follow this patient's progress. I continue my mindbody therapy and hear every week how I continue to creak my own havoc because it is what I am use to, and the havoc creates my high stressors which then up the strength of my PSAS. When I have moments of using my therapy to reverse the attempts to create self chaos, my PSAS all but subsides. But I have had a lifetime of drama thrown in my lap, of having to be on edge, of feeling on the fight or flight edge, so it's going to be a long haul for me, but I feel it's worth it. My personal decision has always been to try any holistic means of treating the PSAS that I can find, before ever going the invasive medical procedure route. After watching and listening to what women have done so far, I am grateful for my patience in waiting for an absolute but I applaud the women who take the step and make the sacrifices to try to find something that works.
My next goal is to begin networking with all the Hollywood people I talk to on the phone daily through my job and see if I can find a filmmaker who does documentaries that might be interested in our plight and make something to be shown in the U.S. I find it very upsetting and disheartening that I have heard from a lot of women throughout Europe who have seen "Extraordinary Illnesses" and contacted me, but no one in America seems to want to show it because of the subject. This from a nation that shows blood and guts, crime and sex, and leaves nothing to the imagination through film and TV!!! To choose to ignore something that is in the realm of a medical condition that causes sexual dysfunction is absolutely appalling to me! I hope I can network and be lead to someone who would be interested in another documentary.
The only other bit of news is that Dr. Jennifer Berman of Berman and Berman has left her UCLA office for her own "penthouse" suite in Beverly Hills so being a movie star/doctor must be paying well. In the mean time the same woman who spilled the beans about the woman who had the ECT went and saw Dr. Berman in her upscale office and when she asked Dr. Berman if she would be willing to do a show on PSAS if she could round up enough women, she said YES! I guess Dr. Berman forgot that she has already DONE a show on PSAS. I was initially invited and then forgotten so I wasn't included, but how funny to say she's interested and then doesn't even acknowledge that she has already covered the topic!!
That's all for now.
If I have one more thing go wrong with me I am going to bite the bullet and I don't mean grin and bear it, I mean bite the bullet! What kind of past five months have I had?? What the hell happened?? This month was just more of the same. I began having vice like grip cramps in my calves in the middle of the night. Holy schmokes were they painful. They made a Charley Horse feel good!! And of course the original burning in my stomach from last November continues. God Bless the docs! Well one thing a hypochondriac should never do is GOOGLE! I did...I'm guilty. And I came up with classic symptoms of an aortic aneurysm for the burning in the gut and hardening of the arteries for the cramps in the legs which by the way made my calves bulge and stay hard for several days before returning to normal. So I fax all this self diagnose over to my doctor and she calls me at work at the end of the day and wants me to go straight to the emergency room when I get home because she is concerned about a possible deep venous thrombosis which is basically blood clots in the legs which could go to the heart and bada bing! Who would be writing this now?? :O And of course I worry about it because earlier this month I woke up having the pressure to pee every five minutes starting at 2AM and around 5AM turned on the light to find mass blood and clots. I freaked! I thought I was having a period and since I had just gone for the second follow-up on the ovarian cyst, I was cursing the technician figuring she burst the cyst. MORE time off work....to the lab, to the gyno, only to be told it was a UTI (Urinary Tract Infection and my first I might add)...So he gives me a prescription for anti-biotic which I took for 3 days before I looked at the bottle and saw it said qty 7 and take 1 pill twice a day. So knowing my math I thought how did he come up with 7 pills 2x a day?? Wouldn't that total EIGHT?? So I call my primary rather than him, because he is the gyno that made the snide remark about orgasms when my PSAS started in 1995. My primary's nurse said an error was made, I needed for 7 DAYS...course by now I am out of the pills and the infection returns. :((( So naturally when my doc thought about blood clots in the legs and it's only two weeks past the UTI infection, you know what I'm thinking.....a stray blood clot or two have gone missing and wound up in my legs (or leg)!! So I am on a gurney in the middle of the hall next to the nurse and docs station at ER watching the injured, sick and dead pass by my bed for a total of SEVEN hours before my blood and ultra sound get done. I had a crappy arrogant doctor who I am in the middle of writing a complaint about. He told me at 11 PM that they had to call someone in to do the ultra sound because no one was there that does it. That the tech would be in in 20 minutes. By 1:30 AM........!!!!!!!!!!!!!!...........when the tech showed up, he said they just called him the hour before!!!! Dirty dogs...I was so mad when I got home at 2:30 AM that I stayed up for two more hours and made four ice-cream pies to take to work.....and went on two hours sleep. Now my medical life continues, my own private General Hospital, all because I am doing mind-body therapy to try to get rid of the PSAS. HA!!!!!!!!
April continues....medically wise. At this point I would rather live with PSAS than all this other stuff. I will finish the medical projects my doc has lined up after I saw her a few days ago. I finally finally got her to feel the small lump in my gut where the burnings been since November. She gave me an anti-biotic saying it was probably an intestinal infection....now just how does she know this? Did blood work tell her? Did an ultra sound tell her? Did the cat scan tell her? NO!!! So I am on them, and waiting to see, although I felt some small burning today, three days after taking the damn pills.....I figured out too that I am not a hypochondriac. DOCTORS make people hypochondriacs because they can't figure out what's wrong when people know there is something wrong!! They force us to become our own investigative doctors while they make the money! I mean I looked at her and semi yelled, "LOOK, look at my file sitting on your lap. It's the size of Johnny Cochran's file on OJ for God's sakes, can't you find something in there???" Another doctor passing in the hall with my door ajar just as I said that burst into laughter....maybe I should start seeing him instead...at least he laughs at my damn jokes! :< Two and a half more weeks and I am on vacation, outta here to Minneapolis for a week...the one and only thing the doc and I agree on is that I am in dire need of a vacation...good old R&R!
In the mean time, my being the type to try all things holistic am wearing a telsa shield that an energy healer in the UK who saw the documentary and contacted me, mailed me to wear and asked that I mail him a Polaroid (due to the material the Polaroid is made out of) shot of shoulder to head. He did light therapy. He said I should be feeling more energized, more calm, and wondered if it would help the PSAS. I did (do) find myself much calmer, especially on my stressful job, a little bit more energized, and the PSAS was very low key for two days, but is back up again. Here is a link to read about the telsa shield if anyone is interested. There is a support group member whose been battling brain tumors and PSAS whose doctors want to start using some kind of equipment on her that had something to do with telsa, something new.....I need to follow up on that. Click the following link and scroll down under the purple shield to read about it. That is what I am wearing and there have been good positive changes, just not regarding PSAS. Bummer!
I cannot believe it's been almost a year since I last posted an update . The support group has continued to grow, with it just under 200 members now. The documentary Extraordinary Illnesses continues to be shown through-out Europe and was repeated again in the UK just last month. With each airing, more people step forward with the same feeling, that they were the "only one" until they heard the name. It has been become easier to find information on this PSAS this past year when searching the Internet. Slowly, more and more doctors have heard of the condition. My friend, Lisa Martinez, co-founder of The Women's Sexual Health Foundation (TWSHF) has added PSAS to all of her speaking engagements along with all the other FSD (Female Sexual Disorders) she publicly speaks about. You can find more information by going to
http://www.twshf.org/ I highly recommend becoming a member---the cost is only $10.00 for a year and you can access all documents on sexual disorders including their 2005 fall journal. They release a journal for the medical professionals as well as laymen every quarter and they did a "first" last October by dedicating the entire journal to only one disorder. I am very pleased to announce that the disorder was PSAS. It was written by Dr. David Ferguson, founder of TWSHF and a friend of Dr. Leiblum. It is the ultimate print out to take with to all of your doctors to help inform and educate them.
I have sent emails to Oprah's producers. The first attempt (with guessing) bounced back. I changed the address from @oprah.com to @harpo.com and they were not returned, so I am crossing my fingers that they pay attention and grab an interest in the story. In the interim I have updated the story at the top of this page and will be once again attacking the US markets for women's magazines that have yet to cover this story. Here is a copy of what I updated today which should pretty much catch you up on what is new in the world of unwanted orgasms!
I have decided to write a book. The journalist who interviewed me for the Boston Globe in 2003 told me at the time I should be thinking book and I let it roll off my shoulders because there were so few women with PSAS, that there wouldn't be much to write about. But as I sit here tonight and reflect back over the past 2-1/2 years and all that has happened, and the journey I have been taken on, I think she's right. I never ever dreamed that a group of under 20 women known to complain of unwanted arousal was going to grow to well over 300 in just under three years time. I certainly never dreamed I would be sitting here, just an ever day woman, having given more interviews than I can count, pushing for coverage via television and actually getting it!
In May I finally broke the U.S.'s cold response to covering the story and landed on the news in Los Angeles on CBS which aired again later on KCAL 9, a sister station. I was so grateful for that foot in the door. I think I have Dr. Jennifer Berman to thank for that as she was interviewed as well and may have mentioned my name. The only part I didn't like when I watched the interview was the reporter saying doctors really don't know how many women suffer from it even though she mentioned close to 400---it almost implied that the 400 may be bogus and the condition may well be too. But what the hell, I had bigger fish to fry coming. I had heard that 20/20 in the Netherlands had covered the story and I almost fell out of my chair because I had already been on ABC's web site and emailed the show a few times asking for coverage and got no response. I was absolutely livid that Europe had a 20/20 and that it aired the story there and I couldn't even get a response.
So I kept networking until Lisa Martinez from the Women's Sexual Health Foundation got a foot in the door for me. So shortly after the CBS news came a green light from ABC for 20/20. I was so stoked I could have flipped! This was national, this is a show I watch anyway and this was what I already knew was going to be excellent journalism. I was right! The show tied stories from Gray's Anatomy with real life conditions and we women were one of them. It was awesome! I have never been so grateful in my life. But the most astounding thing was that over that weekend there were 85 new members who showed up! Women crying, saying the same things that have become so standard for those who have it: "I never knew there was a name." "I've never told anyone." "I am so happy to have found your support group." and the big question, "What is there for treatment?" That was the sad part. To have to put those women in the same shoes I was put in when I found out. The emotional roller coaster of being so happy that there was someone who had a name for it, who had heard of this condition and then the plummet to the emotional depths of hell finding out that there hasn't been a decent treatment. But all the same everyone has been very grateful and happy to at least have a place to talk about it and network what health issues they have and what they have tried. More than anything they were happy to find some material they could print and take to their doctors to inform them of PSAS and help educate them. To my amazement 20/20 re-ran the show less than a month later which means there must have been very high ratings, hits on their site and people contacting them wanting to know where to find more. The re-run brought another 30 women. While I have listened to it referred to as a "rare condition," I now do not believe this is so. Since almost every woman says the same thing, that they were too embarrassed, and ashamed to talk about it, and since there are so many women stepping forward from all over the world, I believe rather that Persistent Sexual Arousal Syndrome is really and has really been, a silent epidemic.
With the huge influx of members, the Yahoo board really had become outgrown. Non user friendly there was no way to organize the posts women made and now there are close to 11,000 posts and nearly impossible to go through them to try to find new information. I had been weighing the potential for site growth for almost a year but after the 20/20 rushes I decided that it had to happen now. So I purchased a web site name and put together a new home for the members which just went live as I write this---the evening of June 30th, 2006. I have to admit that I felt separation anxiety as I closed the Yahoo board by posting a goodbye and telling members where to go to log in on the new site. After all it's my creation and been my baby for 2-1/2 years. I literally felt my eyes well up. But the new site is amazing!! The beta testers went wild over it. So everything old is new again......and I will leave the posts on the Yahoo site. Folks will be welcome to go sift through the posts if they like but I believe they will quickly find that it is tedious work. Members can just repost their info on the new site and go forward. As I quoted in my goodbye to the old board, the lyrics to "The Song Remains the Same."---Led Zeppelin:
The Song Remains the Same:
I had a dream. Crazy dream.
Anything I wanted to know, any place I needed to go
Hear my song. People won't you listen now? Sing along.
You don't know what you're missing now.
Any little song that you know
Everything that's small has to grow.
And it has to grow!
California sunlight, sweet Calcutta rain
Honolulu starbright - the song remains the same.
Sing out Hare Hare, dance the Hoochie Koo.
City lights are oh so bright, as we go sliding... sliding... sliding through.
And so it is, we were small but had to grow. And we can go sliding any place we want to go—from California to Calcutta to Honolulu and round the world to spread the word—inform those who need to know.
I am not sure what made me finally decide I need to write the book---but it was either the fact that the support group became so big that it had to be moved and may be an indication of the future or the fact that there currently serious talk of my flying to Rome, Italy to go on a television show there. If that happens, I can foresee big things happening in my advocacy. But at this point I think I should be working on a book to tell my whole story from the beginning---and how everything came to be.
Never got the book started---why? See my Daily Life page for August---there is just not enough hours in the day!! I need another life when this one is finished so I can complete my to do list!
A) I went to see an Endocrinologist in late spring because I wanted to try Metformin, a drug for diabetic patients hoping to also use it to lose some weight. I also spoke with her about PSAS and as usual, she zoned out and went through the motions of paying attention and was the least bit interested. After a month of using the Metformin my body ached so bad, it felt like I was arthritic from head to toe---every joint ached, every muscle was weak beyond anything I've ever felt. Evidentially that is a side affect of metformin. I got off that crap as fast as I could. I have been complaining about chronic fatigue for months--I mentioned it to the endo and she felt that I was depressed. I am sure that I am. After all living with this PSAS, PGAD, P whatever it is named this week has certainly been life altering and left me feeling like many years have been wasted. Yet the mind-body therapy I have been doing for almost two years has really helped me to get it into a calmer mode---and many women will agree that when they are stressed and the stress level has jumped way up, the PSAS goes up and off the charts. So the purpose of my therapy is to control the stress so that it doesn't rise so much that I have intense levels of PSAS. It has helped me for quite a while and I have had moderate to low PSAS and compared to how it use to be, I can live with it and function better. But the endo suggested trying something for depression to see if my fatigue would improve. I pondered and stated my concerns that I felt SSRI's had contributed to my PSAS in the beginning and so she suggested Wellbutrin stating it was not an SSRI and would help with weight loss. So I decided to give it a go. She prescribed 150 mg 1x a day and I did lose some weight but don't know as though I felt any more energy. I still felt exhausted all the time. I made an appointment to see my primary and when I arrived learned that she was out saw the doctor that was covering for her. She spent quite a bit of time with me and thought that perhaps I needed to double the Wellbutrin. I did and almost immediately my PSAS got worse, and within a week it was off the charts and I just knew that although it may not be a SSRI that it was the culprit because I had been on an even keel for a long time. I couldn't just stop so I immediately went back to 150 mg for a week and then quit desperate to get it out of my system. Come to find out Wellbutrin is given to women who are on SSRI's that lose sexual desire to increase the desire!!!!!! What in the hell was I given that for then???? I'll tell you why---because the endocronologist did NOT LISTEN about this condition!!! So here it is two months later and I am still in complete misery with high intensity of PSAS----and worried that it should be out of my system by now and seems not to be and will it ever be or will I be like I was for 8 years on high level again? I am FURIOUS and now I really AM depressed and cannot take a damn thing for it!!! So I don't know what I am going to do now, except wait---and cry in my weekly therapy sessions.
On another note--the trip to Rome looks like it is going to be a reality----I was told twice to be on "high alert" and then told to hurry and renew my passport as it takes 6 weeks to receive it back. I have done that two weeks ago and have been in constant contact with the journalist who did the interview with me in late May. August is holiday month in Italy so no one is working however the producers etc. will be back to work next week and I should find out if the time frame that would work for me (mid to late October) will work for them. If so I am off to Europe in person this time to continue my advocacy and announce this condition and beg for research. I have more faith in Europe than the U.S. for really finding out what is causing this and for coming up with a successful treatment---for that reason alone the trip to Rome is not only good, but necessary. I wish I could travel all of Europe and have doctors and researchers attend while I tell our stories---that is the update for now--I haven't started the book yet, due to the August list on My Daily Life page--
The trip to Rome will still happen although I canceled it for this year. Not a seasoned flyer, I was all set to go once they said "now" but then the Pope ticked off the Muslim world with his comments on their history of violence and so I figured the only thing worse then being an Italian in Italy would be being an American in Italy!! I said I would wait until spring and see if the Vatican was still standing! In the interim the new web site is growing, I found the a way to retrieve an e-mail list of all the old Yahoo board members and sent out mass e-mail telling them that I have re-opened the Yahoo board but that I had deleted members in error and so they could come back and re-register and use BOTH boards. Yes I am now running two support groups simultaneously because of a couple of features that Yahoo has that the new board doesn't and the old timers had a hard time learning maneuvers on the new one. Not wanting them to stop participating (which they had done which in the end is not lending them support) I re-opened Yahoo so now folks have a choice.
I personally am doing okay---my PSAS is up and down but less that it was for most of the eleven years. I thank the mind-body therapy, exercise and the words "accept" and "let go." Although I am still in the learning curve, I find that if I cannot accept something OR someone as they are and let it go and I allow it to cause me huge stress or anger, my PSAS is ten fold----in other words, so high it's off the charts. I also was referred to physical therapy for some really problematic low back pain (a complaint many PSAS women have) and interestingly enough the female therapist I got was semi-retired and I told her about PSAS and she said she use to run her own pelvic pain clinic. She said that even though I was there for my back she would do some work on my pelvic area. As she massaged the inner groin she said there was terrible tightness and tension there. She was barely pushing and I was in a lot of pain. The first day of massage created a very interesting side affect. I had my first appointment during work hours, using my lunch hour to go to my appointment. When I returned after she had worked on the pelvic area, I became literally euphoric at my desk. I was talking non stop (I am a big talker but even by my own standards this was over the top), I was snapping my fingers and dancing up and down the row of cubicles in my area and basically on a "high." At some point after about 15 minutes, I realized that I was out of control and walked to my chair, sat down, and went "Whoooo--calm down!!!!!!" I took some deep breathes and made myself relax and was really perplexed at my own behavior. I asked her about it on the next visit and she said that it was normal the first time, that she had had women leave and cry an entire day---something was released---and it shouldn't happen but the first time. It didn't happen again but much to my dismay I only had a few more sessions with her and it was her last day working there. I quit going then because I figured no one else would work on my pelvic region because I was really there for my lower back (which did not get helped by the way) and the pelvic massage was what I think could have really helped in the long run. I probably could ask my primary doctor for a referral to a pelvic pain specialist however I believe the closest one through my medical group is far enough away that I would need a pack of snow dogs to get me there!!! :((((( Why is that????
So I have moved on to the next attempt to treat myself. I started on 37.5 mg of Effexor if for no other reason, because I am depressed. I am not just depressed---I am very depressed. Eleven years later and still no life, no relationships, living as a recluse the way Howard Hughes did, putting on excessive weight, withdrawing from social interaction with friends and even family (what little family is left) including my kids and grandkids has taken it's toll. I have paid a huge price from having PSAS. I have two things left. Work (which I have to do in order to survive or I would most likely withdraw from that as well) and my enormous wit and sense of humor which is external only. You must remember that comedy's icons are the faces of comedy/tragedy. That is I. So the Effexor has helped a little but only a little due to the small dose. On the flip side of that, even that small of a dose has made it difficult to achieve the much needed release of orgasm even if it lasts only minutes, or hours. Any release is better than no release and now I am lucky to get one once a week which is not nearly enough. The end result is the feeling of live wires tingling in the genital area combined with strong muscle spasms which equal PAIN not pleasure. Readers need to focus on this rather than the woo hoo thought they have that someone can have constant orgasms. Not a single PSAS sufferer enjoys the feeling NOR the release by orgasm. All an orgasm is is a feeling of temporary relief until the minutes or hours later and the slow painful process leading up to the time when (and IF) we can get a release. What I am curious about for my own self is if the inability to release more than once a week stems from the original problem I had when I was put on anti-depressants years ago and PSAS started shortly after. The doses were much higher and I could not have an orgasm at all but the constant arousal nagged at me, my body pleading for help and I couldn't. Perhaps now, even though the dose is small, part of the problem of not being able to let go with my body is purely psychological from back eleven years ago and how it was. The only thing I do think has any kind of possibility is Sherlock's massage and exercise technique, especially after how I saw the pelvic massage from the therapist worked. And considering that Sherlock is PSAS free and none of the rest of us are, I think women should stop looking for extreme measures such as ECT, and PNE surgery and look instead to simpler, non invasive treatments with a far more open mind then they have now. For some reason they seem to think it's going to take a surgery, a drastic approach or a magic "pill" to fix them when that might not be the case at all---and even if it is, until the medical world does some serious research and announces a specific surgery or magic pill, they should all be trying to help themselves with a more holistic, natural approach. Nothing ventured is nothing gained.
Coverage on PSAS continues. I did an interview with a Japanese journalist, have been contacted by someone from the BBC for an interview, have been invited to Seattle for sweeps week (ratings week) in February for an afternoon talk show that is on an affiliate of ABC and ABC's national coverage of a show called PRIMETIME is going to feature PSAS on their segment entitled Medical Mysteries. We are just now rounding up women who are willing to appear on the show and I must say the pickings are very very slim as 99% of women are still too embarrassed or ashamed to show their face which just goes to show how far we still have to go before women can speak out and hold their heads up high without feeling they will be ostracized over a condition they had/have no control over. More needs to be done and I will carry on the best I can.
That's the latest for now---
May 24th, 2007:
Time has certainly flown by---as I find myself slipping deeper into the PSAS (aka PGAD) abyss--I am so tired of living this life---so tired of trying to figure the cause of it, the cure for it, something to ease it a bit--am tired of living a dual life---my stand up comic self around co-workers and friends verses the "dark side" when I enter the walls of my home that I share with no-one but my dead mothers old washed up cat. I feel a commonality with the cat. At 55 I feel washed up and as good as dead--and what is to blame for it? Some rare disorder that came out of the blue to invade my body--I now understand what a "life altering experience" feels like-- I have lost a husband, cut myself off from any human contact on any emotional or physical level other than my grown children and grandkids and even with them I have kept my distance. Everything I'd like to do has a price to pay--whether it is to seek a normal relationship and feel cared for and loved by a mate, whether it's to enjoy the things I always use to do---traveling, camping, golfing, bowling, writing, going to see live plays, going to movies, having friends over for BBQ or going to friends for get togethers---it's all washed up---out of all of these things I use to do, I see friends maybe twice a year but now it's because I feel I HAVE to so they won't think I don't care about them anymore---nothing could be farther from the truth---but I can't stand the discomfort of sitting anywhere with a constant painful spasm between my legs that won't ever let me forget I am a prisoner---am being held hostage by a brutal joke in life---
I cry a lot at home--I am increasing becoming an angry person; lashing out which leaves those who know me in shock and disbelief--because it's as they say "it's so unlike you." Of course! Because I am genetically gifted with charm and wit and ad lib comedy---one of the few things I haven't had stripped of by PSAS or PGAD as Dr. Leiblum decided to change it to---but many times I even grow tired being funny. I cannot even take anti depressants because they make me lose my mind when they hold the orgasm hostage making me work and beg for the relief which only results in more anger and rage---and I hate myself for what I've become--not even over weight anymore---I am obese---I look at pictures of how I was a mere 12 years ago before PSAS glommed onto my body and ruined my life and I feel the deepest despair and grief and weep so long and hard--just looking at who I was and seeing who I am now. I hate life. I hate ME! I wish I could take mine---I wish I could just slip into the abyss of darkness where there are no thoughts, no feelings, no sensations, no pain, no emotional baggage which is what this has become---but I can't---I wish to hell I could but I can't.
There are all these pats on the back for my "pioneering" PSAS, for my advocacy and outspokenness on it, but no one knows that whilst I am busy trying to find answers for us, to spread the word so that something can be done, that sometimes I am just dragged down and exhausted and could use some support of my own---a how are you doing, or an ear to listen or a shoulder to cry on---I find it interesting that I hide from my own support group as well as those in my every day life! I have been in therapy (mind-body) for three years---it has been most helpful, but the bottom line is I still have PSAS----and that's all I want fixed!!!
Since I wrote last I have been through a whirl wind of trying this and that and chasing others ideas as well as some of my own---from using L Arginine, Glutamine and Creatine from GNC to trying to raise my energy levels and relax my muscles. From trying to extract HELP out of HMO idiots to have cortisol levels tested and using Diflucan for possible stomach yeast syndrome or leaky gut syndrome---which really did help for a chronic burning/bloating stomach. Unfortunately it is not over the counter in the states so I pirated some from outside the U.S.!! I understand now why folks cross the borders for medications.
I have done Weight Watchers at home and tried the tread mill losing 14 pounds, only to sub consciously despise myself for a positive accomplishment so I put it all back on. I have succumbed to using my CPAC machine for sleep apnea waking up in the middle of the night to rip the Darth Vader mask from my face---I have wrestled with mild Restless Leg Syndrome off and on---I have tried untrained meditation by trying to slowly inhale all the way down to my pelvis and exhale which really does seem to help with muscle tension of which I have unbelievable body tension. I did go for some "back" therapy and was lucky enough to get a woman therapist who use to run her own pelvic pain clinic---she did some massage (very gentle but to me if felt very strong and PAINFUL) in the pelvic region and much to my surprise I was on a temporary high---I returned to the office in a complete manic mode---dancing up and down the alley ways of the cubicles, singing and snapping my fingers and talking non stop! After about 10 minutes of my "amusement routine" I stopped dead in my tracks realizing what I'd been doing for the first time---I went to my desk and sat down and tried to regain control of my very out of control self---I told the therapist about it on my next visit---told her to cool it before I am danced right out of the office! She said it was normal, that the first time seems to break something open, that I could laugh, cry, dance, there are a variety of happenings--but then of course she left after two weeks and I wasn't there for "pelvic pain management" so the treatment stopped after only 3 times---that's my luck!
So now I am set to have a very busy month next month---June is going to be so over-whelming I just don't know how I am going to cope---I have to FLY to Vegas from Burbank for my nephew's wedding, who with his bride to be, my brother and that part of my family are coming out---a plane ride----out of my element which is my prison walls at home---my anxiety has started building---sitting for the wedding, sitting for the reception, sitting in the casinos all with PSAS which is usually only bad at night but goes over the MOON when I am stressed! :(((
Then the 20th I have my granddaughters graduation from middle school---out to a function---sitting for the ceremony---sitting for the get together afterwards--with PSAS---
The same day, later in the evening I FLY out of Burbank to Newark NJ for the first research study on PSAS (PGAD) by way of an fMRI----out of my element---sitting on a plane for 5 hours or so TWICE----and probably in a seat that won't have much stretch room or so I can lift one cheek then the other to wiggle my way to comfort while sitting---I am MAJOR stressed over this trip but it's important to me----I am PRAYING there is something on the brain wave scans that show something--ANYTHING promising---am petrified to even HOPE anymore---
Then I am moving June 30th----20 miles south, closer to Burbank where I work---out of my element---out of my home of 18 years---my girls say MOM!!! It's about TIME---get OUT, do something NEW---leave the bad memories behind---oh yes, they know about PSAS---they know about divorces and failed relationships, rare attempts to even think of ONE casual date---all self destructed by me by my weight---part of me is excited--part of me is a wreck--these walls know me---they've seen my problem, heard my wailing----have become my friend---my barrier, my armor of protection. I am scared to death of leaving my prison. How ironic!
There have been more interviews, filming for PrimeTime that never aired, more coverage in magazines, still mostly abroad----AMERICA----what a place to live!! What a JOKE! But then that's all material for writing web site---my Pitch a Bitch page---this is not the forum for that--
Till next time---
June 24th, 2007
Posted on both the Yahoo and the psas-support group web sites:
Am back from New Jersey and New York after being the first (Nancy and myself) ever--research study on PSAS also known as (PGAD)--
Other than the trip being a whirlwind and a big city first for Nancy who I schlepped around (what a great sport Nancy is!!) but she was also a very willing spirit and I "think" enjoyed what we did---it was tiring to say the least but exciting-
Highlights of the NON research testing were:
Trying to manipulate the rail and subway system!!!
Learning to 'grab' a cab!
Walking past ground zero at World Trade Center- :(
Walking and shopping for souvenirs on Canal Street and MY favorite and my MUST DO was Mulberry Street, the Italian district. I spent a fortune there on souvenirs, (t-shirts, trinkets, books, DVD'S and pastry---OH MY GOD THE CANNOLI'S!!!! ) Yeeeowzers!!!!!!!!!!! :)))))
We also had a two course lunch of pasta and chicken parm--yum!
We were given a personal guided tour via Dr. Barry Friday night---he was kind enough to take us from Newark into New York and show us around ---all the city lights and Times Square, Rockefeller Center, Madison Square Garden etc--New York is a very exciting city and a great place to people watch. Dr. Barry knew every inch and knew all the highlights and was a fabulous guide as well as a very nice and generous spirit of a human being who really wants to help women with PGAD get rid of it. It was great until he unknowingly rolled up the windows and rolled up my right index and middle finger with it! YEEEEE OUCHHHHHHHHH! Wahhhhhhhhhhh! GRrrrrrrrrrrrrr!
Now, as for the study---it was very very interesting to watch what they were doing. Nancy went first the first day and I followed when she was done. The fMRI tunnel is MUCH smaller inside when they are doing a scan of just the brain. The insides of your arms are tight against your body on the inside and the outside of your arms are tight against the scanner wall. There is no way to move them. They also put a white cover over your face that resembles a football players face mask and then stretch a piece of tape over it to be sure one cannot move their head once inside. Once inside there is a screen above you where you can see the views of your brain in black and white.
Prior to that the technician gets an initial scan of your brain on a screen which takes about 3 minutes. Then they "slice" the brain virtually into pieces that are determined by the team which consisted of Greg the technician running the machine, Dr. Liu, the physicist, Dr. Rachel, who is an endocrinologist from Mexico who is involved in the research as she is very very interested in it and is involved with compiling all the data, Dr. Barry K. and on day two Dr. Sandra Leiblum came, asked us more questions, taking notes and then watched the scanning process in the research lab asking the team questions as well.
The testing was non-invasive (and for those of you who know me, know that this is what I have been waiting for). What we did was lay in the scanner and went through several series of tests of allowing the PSAS to do it's thing, meaning let the spasms, tingling, pain or any sensation that we associate with our PSAS to happen. Then we did what ever we needed to, to distract the PSAS from happening---be it by thought, or bearing down, pushing, whatever way we could make the feelings stop. I was for 99.9 % of my time, able to stop it on a dime just by telling my brain, (self talk if you will) to knock it off---I also used slow deep breathing, deep enough that I could feel my inhale all the way to the pelvis. The research team was very shocked that I could turn it off and on so quickly. Greg even questioned Dr. Barry if I was really doing that or just saying so, but Dr. Barry could see it happening on the scan so knew I was telling the truth! I wish I could turn it off completely but I cannot. LIFE gets in the way of my being able to "talk" and "breath" it out of me on a 24/7 basis. The time frame was tested at 3 minutes, then 2 minutes, then 1 minute then 30 second intervals. The testing showed more data when the time frame was at it's least, at every 30 seconds. They also tested with a bag of ice applied off and on for 3 minutes during 30 second intervals--Rachel applied the bag to the outside of our clothing on the genital area. For ALL tests we were intermittently asked a number on a scale from 1-10 with 10 being highest as to what level our PSAS (PGAD) was during the process.
It was very interesting to see the black and white scan live above our head. You could literally see when the PSAS was in control, the mass of what I call constellation of stars---small pin point white lights in certain areas of the brain, verses gray matter with few if any lights when we made PSAS stop. As a layman it was very easy to see that something was occurring in the brain. However once this data is translated, there will be colors---those areas will be red and orange with orange representing the strongest of the pain areas. I have requested a hard color copy of mine once it's available as I have gained a scientific interest in the theory myself!
Now---the burning question I am sure IS-----(and of course was the first questions out of Nancy and my mouth) WHAT DID THE SCAN SHOW???
It was very exciting to the research team. They believe they have narrowed down which part of the brain is affected and have an idea of which nerve is involved---PRELIMINARY thoughts are that the Vagus nerve---on my OWN I am including the following link to read:
It is very important to note that Dr. Barry NOR anyone on the research team have positively identified cause or treatment BUT have stated they have very good data and scan results from the tests on Nancy and myself. I believe I can safely say that this has excited them even further into bringing in others who have qualified and requested to participate in this study. This study alone has made everything worth it----and although I did not come home with a magic cure or pill, I, myself saw that the brain is showing the activity and that from there, with more research, there are GOOD possibilities---right now we need to let them do their jobs.
I am very grateful to all of the team, and to Ruters University and mostly to Dr. Barry who is the one who made this research study possible by getting the Christopher Reeve Foundation to include this study with their grant funding--and ALSO to a team who was ALWAYS attentive to our comfort level emotionally and physically, even when I had a full blown panic attack the first day---even as on the second day, the narrow corridor of the MRI machine caused terrible pain to my FAT arms and caused my hands and fingers to go numb---they would pull me out of the machine, tell me I didn't have to do it, massaged my hands and fingers and were just the VERY BEST ! I told them I didn't come all the way from Los Angeles to NOT do this and that NO ONE was going home that night until it was completed!!! Then we laughed, Nancy gave me an Ativan (chill pill) and we carried on---
It has given me a second wind to reach even farther as to where I door knock to seek and find help in the medical community as well as gaining more attention through use of the media for the sole purpose of reaching other women who have no idea what or why or a even yet----a name.
With deepest gratitude--
I have uploaded some pictures of the research team on the Yahoo support group.
You can access them by clicking the following link:
If you are not a member of the Yahoo support group, you will need to register--which is free.
Click the Album titled RUTGERS UNIVERSITY at the bottom. You can click on each individual picture to view it larger and read the notes I made of who they are.
Well I have learned what I already knew--research takes forever and a day--and of course with so few people knowing about PSAS---who would be interested?? After all the docs that are interested in the cause of PSAS aren't spending every waking moment on this particular research--they have other studies, some are professors and have to teach--and then there's always trying to have a life! So here we sit 8 months later and no other research has been done. Why? Because they put in for research funding and the red tape is longer then the Great Wall of China--that's why!! Some days I figure I'll be long gone dead and gone before they ever figure it out and I'm "only" 56! So ladies, keep plugging along--with all of the research we've done on our own through Google or support group posts, we will probably at the very least find something to ease our symptoms enough that we can live with it long before they ever figure something out. Speaking of which---a woman on the support group flew to San Diego to see Dr. Goldstein--which made me shiver, but hey! It's her life and her money. She returned and posted that Dr. Goldstein put her on Chantix--the drug to help quit smoking. The drug that every month the FDA releases stronger warnings against. Here is from the Wall St. Journal:
The woman who tried it said it helped her symptoms with PSAS quite a bit.
As for me, my weekly mind-body therapy came to an end last July after 3 years. He said I really had "gotten it" and was applying things that I had learned. On one hand, 3 years seemed like eternity but on the other hand, when I started listing all the things I had accomplished, I was surprised so much had transpired in only 3 years. I was suppressing the emotions of a lifetime in my body. They had to come out somewhere--so they came out in depression, fear, anger, worry, and stress. They attacked my body as acid reflux, digestion problems, back pain, muscle tension, bladder problems, liver and kidney problems and weight gain. I couldn't "swallow" my emotions so my body suffered. And then there was the fact that I wasn't breathing!! Yes air was going in and out, but just to my lungs and back. There was no breath inhaling deep into my stomach or lower...and slower. We forget to breathe! Every day we forget to breath. So everything is tight. Here I thought I was relaxed when I really wasn't. Massage therapists would touch me and I was in immediate pain. Every muscle was hard as a rock--even one's I would have never suspected.
And this is the same for everyone. Those physical problems are: depression, fear, anger, worry and stress--trapped in my body. This is what mind body therapy helps with. Many of my wounds and relationships were healed. I learned to let go which was very hard. Lots of good came out of the therapy and not a lot of crying and no rolling up in a ball in a fetal position. No! Mind body therapy isn't like that. It is GENTLE. It is SUBTLE. You improve without a lot of drama. What a concept!! Sure I cried from time to time, and that was good. That was healing. But for the number of sessions I had verses the subconscious feelings I had I would have thought there would be more tears. I learned to catch myself and connect the dots most of the time. I could figure out what my anger during road rage on the freeway was really all about. I learned that anger is sadness turned inward. I learned how to change my belief system which was all mucked up. There was only one hurdle left to cross and it was the biggest one of all. For 3 years through muscle testing
( http://www.goodhealthinfo.net/herbalists/muscle_testing.htm ) he told me my belief system was changed at 2-3 years old. How could I ever remember age 2 or 3?! I gave up trying to figure it out and ended therapy without ever knowing but my mind was constantly wondering, trying to figure it out. I had a fantastic childhood but kept wracking my brains. Soon I was busy with autumn vacation, the holidays and I forgot about it.
Soon in this new year I became interested in meditation. After seeking out info on Yoga and other similar programs I decided my weight wouldn't enjoy them much--but there must be "something" to help with the health problems that I have. So I typed meditation into Google and read first what it was. I only read one link and it was on a Buddhist's web site. I only read one section---how to meditate. It was short and simple. Be in a quiet place and close eyes half way--then LISTEN to your breathing. You can actually hear your body breathe! What a concept! That's how I realized my breath only went to my lungs and back, so I continued listening and making a point of trying to go deeper with each breath--slowly--and I could feel my body relaxing--which felt weird but good. After all I hold everything in my body 24/7 so when my body ever even REMOTELY feels like it's relaxed, I think I'm dying!! And I fear I'm losing control. Anyway I liked the breathing and wanted to learn more, so I Googled again (oh why didn't I buy stock early on??) :( and it was meant to be-I came across a site with CD's that are imagery meditation. What's more, I could listen first so I would have an idea what they were like. Well I about liked every one! And that's what I bought! About every one! They cover comfort and healing, sweet dreams, and stress relief. Wants and needs, success, weight and exercise, and the key to everything, HAPPINESS. Once they arrived I couldn't wait for bedtime so I could put on my headset and listen. The first night I wound up with a good case of anxiety. The music and sounds in the background were so soothing, as was her voice, but as I relaxed more and more, I panicked. I had to sit up and remove my eye mask to make sure I was still alive. But I acknowledged what was happening and laid back down quietly and continued--breathing and seeing my body relax, feeling it relax. The last thing I remember hearing and it was so faint it was almost a whisper was "You probably aren't even hearing me now." and I was out like a light! I will have to go back and play it while awake at the dining room table to see how loud that statement really was!
The MAIN thing I noticed with the first two CD's I listened to, which of course was healing and stress was my PSAS just bit the dust--BANG! It was gone---which means my body relaxing those muscles released something on the pelvic region, and for me specifically the clitoral area. Two nights, two different CD's. So my thought process is this: It is a combination of imagery meditation/biofeedback/and hypnotism that does the work. It allows you to concentrate on your entire being--and I do hope it will help to quiet the busy mind for a while. Our minds are busy. Always working--it needs a rest as well. So I continue on with my journey, still staying on a holistic path as opposed to invasive techniques or chemicals, both of which are very Westernized and new compared to ancient healing. I want to share these CD's with others who may be interested. Not only can you click on samples to listen what each CD sounds like, if you have a question Ellen responds to you in a very timely manner offering answers and support. So for anyone who may be interested please click the following:
I do have a doctor very interested in PSAS. He is my new acupuncturists. I started seeing him in early January 2008 for a torn rotator cuff after several weeks of therapy from my chiropractor didn't make the pain go away in my shoulder. The MRI showed a torn rotator and tendon. The ortho said he could fix it orthoscopicly--I have opted for acupuncture first and have seen good improvement. But I told him about PSAS. He was very open and interested. He is also a professor teaching students acupuncture and herbal medicine. I gave him all the print outs on PSAS and copies of every media film coverage I have. His brain went into over drive ticking away--he would love to try to figure this out. He gave it lots of thought and believes there is some muscle that is irritating a nerve and causing blood to not circulate properly. We have heard this before--but he is very interested in finding out which muscle and what nerve. He would like to try a combination of acupuncture and herbs-- problem with that is it's very expensive, especially for a single woman like myself. But at least he was accepting and interested and readily on board to try to solve the problem--that's a lot more then our Western medical professionals are offering. Keep that in mind.
All for now----until next time--
Good things on the horizon. I did an interview for a new show that only airs on the Dish Network for now--however there are many requests from people to bring it to main stream cable. The producers said they think it will in about a year--the name of the show is called Beside Manor. (Click link to view info). It pits a Western medical doctor against an alternative doctor. Right up my alley! Anyway they came to my house and I did an interview for the show--although I don't have Dish network they will send me a copy of the show. I would love to be sitting in the audience when that is taped. I would love to have that show on my cable station. I wouldn't miss an episode!!
Being that I work in the film industry in Burbank (not directly for the studios but for the studios) it is a great way for me to network if I find someone whose ear I can possibly bend and ask if they know anyone who knows anyone---well as luck would have it last week I was contacted by the associate producer of the Dr. Phil show. He is going to host another show this fall called Ask the Doctors on which a regular panel of 5 different doctors will be on stage and will address questions on different medical conditions. They heard about the 20-20 that aired 3 weeks ago (oh did I forget to mention that? Yes a second coverage of PSAS that was suppose to air over a year ago on Prime Time's Medical Mysteries finally aired on 20-20 Medical Mysteries. The last show we were covered on was almost 2 years ago. This time there were three new faces which really made me happy--and I feel was necessary for validity) so anyway the producers of Dr. Phil wanted me to gather women to do a show on PSAS next week---short short notice---for everyone---and really they were not prepared--I am sure their panel of doctors have never heard of PSAS---which would give them very little time to do their homework and the women very little time to arrange their lives to be flown in to L.A. What really made me happy is that even more women (after seeing others being brave on the latest 20-20) finally, yet fearfully stepped up to the plate and offered---so I had them e-mail me a picture with a paragraph or two of what PSAS has done to their life and I forwarded all to the producers. They came back late yesterday and have decided we need more time then what they can give on short notice--so we "should" be taping a "good" show mid summer. But I for one know how it is in "TV land" and the women should know by now as well since it took over a year to see the 20-20 that just aired that anything can happen--it can continuously be post-poned, canceled, moved up, who knows? But as the advocate AND I work for the company that does Dr. Phil's payroll ( hee hee) I will stay in close touch with the producers to make sure we do not fall between the cracks.
As for my PSAS, the meditation CD's by Ellen Chernoff Simon that I linked to above from Imadulation have helped me a ton at night or while laying down which seems to be when this beast it at it's worst for many of us---mine completely stopped at night and I sleep well. I posted the link for the women and a few have purchased some and ALL said they found them very useful. This is great news. While it's not a "cure" the meditation is certainly a useful tool and a hell of a lot better than some chemical laden drugs that the women are using/trying!
Till next time--
Still marching on---I continue with the mind-body therapy, the meditation but have now added oracle cards:
http://www.hayhouse.com/details.php?id=2805 It's a bit metaphysical---that's not to say I have turned away from God---but I have been studying the Law of Attraction and I have practiced some and it works! I still thank my higher power, in my case God--for all blessings instead of crying "Why me??" Instead it's "Why NOT me?" I am outspoken and driven and perhaps it is my purpose to be the advocate for such a ruthless condition, a voice for those who don't dare--for one or more reasons. I have also now started myofascial massage---I am not sure what the outcome will be as my HMO only authorized once a week for 5 weeks, and then I have had a two week lull waiting for the referral to be extended. I go again this week- I did notice that my PGAD had a huge flare up--yet Sherlock said to expect it to get worse before better. But I also need to get the physical therapist to forget the internal pelvic massage and do the specific low back, buttocks and hip flexors that are the main part of this specific massage. I also have to wonder if more then once a week would help---or what about an anti inflammatory other than Motrin for when it flares up. I gave her all the DVD's last time so will see her reaction when I see her this week. She was very receptive to all the printed material I gave her which was just a fraction of what my PGAD "library" holds. In the meantime I am continuing to work on myself---making changes---I live in the heart of the San Fernando Valley in Los Angeles. I am developing a cough due to the smog, and allergies due to the pollen and now as I get older I cannot take hot weather anymore--today was 111 degrees F. I have been driving 60 miles to Ventura Beach where my therapist is and have now been looking at places with the hopes of moving there. Work is a factor--but I could telecommute if they would agree---first initial response this week was NO---which set up negative emotions inside (oh those sticky suppressed emotions!!) which then of course made my digestive track and PGAD act up---STRESS---it IS a factor, don't doubt that for a moment readers--there is an absolute connection. So I have had to remember to breathe and remember the Law of Attraction, and put positive thoughts out there---worse case scenerio, I take a train round trip 3 hours every day if I move. They might control my work but they have NO control over my life---I can live where I want. Pity them though as adding 3 hours to my daily work day will surely affect my productivity level. So in the end, they lose!
Well one of the members has posted off and on for a good year that she has had success with the pain medication Tramal. She is from the land down under. Here in the states it is called Tramadol or Ultram. A couple of other women have tried it as well and have said it helped. So I decided to switch medical groups again, completely so I saw a new nurse practitioner who was not only smart, but compassionate and listened. But the best surprise of all was the fact she has not only heard of PSAS but has a patient with it and doesn't know what to do for her!!! I was so excited! So she wrote me a prescription for Tramadol 50 mg. Everyone is different. Some are taking 100mg a day, while others are taking 50 mg twice a day. I started with 50 mg but then lowered it to 25 mg but breaking one in half and taking the other half a couple of hours later. I am VERY happy to report that it does take the pulsations and lowers them to barely existent which makes for a much more comfortable day and easier time getting to sleep. Of course, like many medications it can be addictive but used with caution and as needed I think this is the first real consistent product to help us deal with it. I cannot wait to let my new nurse practitioner know so she can prescribe it for her other patient.
On a lighter note:
I have finally found a good reason for having PSAS and would like to share it with all of you so that you TOO can draw on it for a purpose--
I am going on 57---I've never served on a jury duty in my life-- in fact for most of my adult hood I tossed the calling from the mail to the trash---until they started sending out mail saying we would be punished for throwing them out and not reporting. I still haven't figured out how that could possibly happen UNLESS that summons was sent certified mail--buttttttttttt----I was summoned and started my calls to see if I had to report this past Sunday night---I did not have to report Monday---wooo hoooo----perfect since I was put in charge of providing enough food for 75 people for a celebration at work---I had to pick up all the food yesterday morning.
So I thought I was home free but when I called to check in last night, the depressing recorded voice on the other end was a message for me to report this morning. SO SAD FOR ME!!!
I swore I would never do jury duty --for one thing I am 200% American and 100% anti-government but I won't get into a political battle on this forum. I just want to share my day. I pre-printed just the first few pages of three different articles posted on the board on PSAS and took them with me. When I reached the courthouse, we were all herded into a very large room and had to listen to a rather humorous lady giving instructions. While I sat there listening, all I could think of was, "How do I get to see the judge and explain my situation?" Then she informed us that when finished in this room we would be herded to another room where the attorney's would pick who they wanted and who to dismiss. Aha I thought! So I will have to make my case to the attorneys. I hope I can do that quietly!!
But then she said if anyone needed a postponement or had a cause for dismissal and wanted to see a special jury examiner to come take a slip of paper from the box in the front of the room and then go outside, walk through the courtyard (a good jaunt I might add) cross the street and go to the 15th floor of the Hall of Records. Well I went for it! I grabbed my shoes and my slip of paper and made the trek. Lucky for me as there were several that arrived before me--they hadn't filled out all of their form so they had to sit down. Me and one other female got taken to the front of the line and got to go in first. When we got inside there were two examiners in the far back against the wall--one to the right and one to the left with the left being a man and the right being a woman. They said have a seat.
Knowing what I was going to be saying, I took one look at the guy and said to myself, "No frickin' way!!! He will either be like my doctors and dismiss the notion of any such thing OR with eyes glazed over, force me to "perform" my civic duty while he figured out a way to be in the court room the same time as me, drooling! " I quickly grabbed the seat at the woman's desk!!
I handed her my summons and my slip requesting dismissal. Without a lot of detail, I handed her the printed copies I had brought with---to which she informed me that there could be no attachments included with the summons. I was very polite and told her I understood that, however I am just leaving these with her so she can learn of a new condition affecting WOMEN (emphasizing women) and that I had to alternate at work with standing and talking to clients via a head set, or sitting for short periods in my chair or sitting on an exercise ball--that I cannot sit for extending periods of time. I then gave her the name of this disorder and in a nutshell told her it is spontaneous, multiple orgasms and that unless they wanted a WHEN HARRY MET SALLY sitting in their juror box disrupting the trial, I thought it might be a good idea to dismiss me.
She quietly said "Oh my!" and looked a bit out of sorts as though she really didn't know what to say about this new information being laid in her lap. Without looking at me or barely making eye contact, she peacefully said, "I can give you a dismissal which will only be good for 12 months." GREAT!!! I'll take it...and off I went, FREE of sitting all day in a chair, confined and in misery!
I was so happy and excited that I messed up taking the subway (something I rarely do due to the limited subways in Los Angeles) that I kept taking the wrong subway that started out in the right direction but had a branch off to another direction that ended--I had to get off the train and the security explained to me that it was out of service for 3 minutes. So I waited the three minutes and got back on---next thing I know I am back downtown by the city hall. What the effffffffffff???!! How did THAT happen? I got back on the same train asking myself, "How was it that I went backwards?" So I ride again and once again the train ends and is "out of service." It appears that my train DID revert and go backwards---but WHY? So now I am afraid to get back on it as it feels (or at least now it seems) that I have been kidnapped by the train system never to see the light of day again! I had this fleeting thought of "GREAT!!! This is my KARMA for getting out of my "civic duty." I will spend the time I gained, lost in transition... HEE HEE!!
So like an old dog coming home, here I am again at the end of the trail--same place, same thing (dah dah dah) only this time I grab a big ol' L.A. County sheriff and asked what the hell is going ON?? Well they have added another line since I last rode the subway (which has been several years) and the red line and new "PURPLE" line both go the same direction, but the new purple one veers off and ends 3 stops later until they extend the service line. I needed to EXIT 3 stops prior, get out, take the escalator down and get on my RED line. WHO KNEW???? There were no posted signs! There went an hour of my time. I was so exhausted by the time I got home I took a 4 hour nap! But HEY! I don't have to do jury duty!!
Anyway if anyone wants to get out of jury duty, just bring your proof of PSAS and a copy of your Meg Ryan/Billy Crystal movie and set it down quiety--they will do the work for you!
This journey certainly has been interesting. As usual I have let time lapse however it's been due to some good reasons and a couple of bad. Last October PSAS (PGAD) was discussed on the new daytime show The Doctors. It is produced by Dr. Phil's son. Heather and her husband were flown out and I was in the audience. I had called Dr. Barry K from Rutgers University to see if he would come be on the show, totally not expecting his acceptance of the offer. I was thrilled to bits! He asked me what he should say. I told him he could validate for the world that this is not just a psychological disorder so he brought photos of a brain without PSAS and one of one of us who participated in the research. It was put up on a mass screen onstage. It was really simple to visually see the difference and Dr. Barry discussed what area of the brain was affected. It is the singular cortex area which controls pain and itch. He shared more info and Heather shared her story. I wasn't happy with a few descriptions she gave---I knew already from past interviews she's given, how the public and how the women would react to her choice of words, "pleasuring myself" being one. I was going to correct that statement once I was able to speak just for the sake of not wanting people to once again take it the wrong way. It needed clarification. But then they ran out of time and I didn't get the chance. I was furious because I knew the backlash that was coming. And I was pretty upset with Heather for repeating it because she already knew from prior interviews the reactions that took place. So the Yahoo board got in a hissy and Heather left the groups and life moved on.
Soon after that it was the start of holidays and everyone busy. I made another appointment with the new nurse practioner and was scheduled for my first physical with her right after New Years. There I tried to cram 3 years of complaints with no solutions with the old medical group into my 30 minute physical. I had increasing fatigue over the past 3 years, digestion problems, physical pain with my liver, complete body muscle weakness and aches, and white spots all over the upper back and a few on the front of my right lower leg. She ordered plenty of blood work and referred me to a dermatologist. In just a little under a month I was diagnosed with lupus!! So those spots on my back weren't "old age" or "vitaligo." I wasn't a "hypochondriac." It was lupus! Discoid lupus which makes the skin turn color, most notably the bridge of the nose across the cheeks turns red. As far as I know I only had white spots on my upper back and the front of my leg. More blood work ensued and although one test said negative for systematic lupus which is internal and attacks the body, I am sure I have it---just from all the symptoms I've been complaining about that have slowly gotten worse over the course of the past three years. And the weight gain..partially from not enough movement, but I asked my old medical group to then explain why after joining the YMCA and doing water aerobics classes 2x a week, the thread mill for 20-30 minutes 3-4 times a week and using the exercise equipment (14 machines to be exact) for 3-4 times a week not one pound NOR one inch has been lost in EIGHT months! Their answer? Work a little harder or "it takes time." Hell!! How much time does it take??!! You cannot tell me that going from ground zero in exercise to all of that for eight months will not show any improvement! So problem losing or gaining weight is among the symptoms of lupus. I will go with that. After a month of prendisone and a shot of cortisone I felt better except for the terrible side affect of the muscle cramping--specifically my left hand would curl up in a very painful fist and couldn't be pried open to save my soul. It would take a good long minute for it to loosen enough that I could pry the fingers from my other hand inside the fist and get it to open. Reading up on lupus can be depressing. It's an autoimmune disease where the body attacks itself, externally and/or internally. If it attacks the organs one can be a goner. Yet others live many years with it. I used my mind-body therapy right there on the spot and chose to be one of those who lives many years with it.
I more or less took a stance of "Alright. You have lupus. Now what can you do about it?" I meditated on it--I discussed it with my mind-body therapist. I have worked too long and hard trying to make the mind-body connection for myself. I have been scraping and fighting to get some kind of life back. I will be damned if I am going to let something like lupus take control of the rest of my life! I read up on lupus..no known cause or cure. It is my own opinion that there can be a genetic connection, of which I sadly would never be able to make. I know my mother's entire side of the family and there is none. I don't know who my father was or anything about him, so if it's genetic it must be from that side. But I also believe that 14 years of PGAD and the disruption to my entire body, via nerves, muscles, depression and anger have created lupus in my body. The worry, the fears, the constant movement of nerves and muscles in an abnormal way have wore my immune system down. This is my belief. And so it is that I am starting on another new journey. It is my belief that women need to start looking at alternatives. Their doctors barely recognize them as having this disorder and make them feel like fools. They cannot do much of anything for them. They have tried numerous medications and invasive treatments to no avail. Our lives are not ever going to be the same. We need to accept that. And with that we need to build a new life around PGAD. So the first thing I did was plan to move from the Los Angeles (Burbank) area full of pollution to the beach which is where I am now (Ventura--which is also where Shakey is). I made it happen and I commute by train one hour and ten minutes each way to Burbank which is a small price to pay for the rewards I am feeling. I even bought a second hand car to leave parked at the Burbank train station so I am not without transporation during the day. The ocean air is so clean, the stress level is so much lower because the culture is that of laid back and easy going. It also helps that I have literally moved to a holistic mecca. This really is a healing environment and I feel happier then I have felt in 25 years!!
I feel that my path in life has changed direction. I feel like I need to give the women the tools of homeopathic and holistic health as I learn them. When I post what I'm doing many meet it with resistance saying they've never heard of it or they try it once or twice and give up saying it didn't work for them. There is no quick fix. I don't know all there is to know either. I read up on all that I am doing. I studied it online to see what it was all about, and then I sought it out. My journey includes mind-body therapy, meditation, exercise at the gym, walks and now hopefully bike rides along the beach. I went to a bike store today and got a new seat for my bike. It was too painful to ride it. The seat was a new seat and gel filled but was hard as a rock and too slim. I got a beach cruiser seat which was wider and not filled with gel. Then I bought a padded cover to cover over the seat to make it even softer. Next I am going to purchase a pair of bicycle shorts that are padded, but not too thick. I should then be able to comfortably ride my bike for a while, even if it's 3 or 4 miles. This is the thought I have put into the universe. That I will be able to ride bike and enjoy the ocean view. I constantly work hard at chasing any negative thoughts out of my mind and change them for positive affirmations. It is hard to stick to in the beginning because we have conditioned our minds over the years but with continued attempts it eventually becomes easier where you catch yourself and change it. I use myofascial massage and Thai massages because Thai massages really twist and stretch your body and I feel so much better then a regular massage. I regularly visit www.myinnerworld.com and get daily e-mail affirmations for free from www.tut.com. I have just found a really great place in downtown Ventura, the old part of town called Ema's Herbs. She is a licensed pharmacist from Sarejvo who treats different conditions with herbs in a folk medicine fashion. http://www.emasherbs.com/ I have sent her an email telling her about PGAD and hope to speak with her this week. Maybe she would like to be part of the documentary. I intend to learn about Reike as it is energy work that I just learned about: http://www.reiki.org/faq/WhatIsReiki.html. I wouldn't be chasing these things but for my mind-body therapy which has helped me a lot. I put together a document on the specific therapy I do with Shakey (Dr. Jenkins) called Mind-body Therapy Explained to share with the women. It was so hard to explain the work we do in therapy that I had to ask Shakey to sum it up for me as I took notes so I could explain it. I put the following together and shared it with both support groups but forgot to include how he opens the chakras (energy healing) and what they are and for those of you reading this, here is an introduction to chakkra:
I will not wait for research funding or anything else. I will continue to seek and find my way. All I can do is share it with the women and allow them the freedom of choice such as the behavioral barometer shows.
Other news is that finally Oprah came to us and we should be airing sometime this month. They wanted me to do a webcam video phone call on a work morning but it wasn't going to work for me so they found another woman brave enough to speak up and hurray--I do hope she has been able to convey the message without it being turned into just sound bites. As far as I know the only doctor will be Oprah's Dr. Oz which worries me because surely he has no idea what it is or can offer anything we don't already know. So to me, being on Oprah in this way is nothing more then using her as a vessel to reach more doctors and women and that's ok. I have one woman flying down from Sacramento next weekend along with my daughter possibly for a three day shoot for a documentary for The Learning Channel. I believe much more will be revealed on what PGAD is and how it affects lives. The show is called Life Chronicals and will be a brand new show. We will film my mindbody therapy session, as well as film a conversation with Connie on what life is life living with PGAD. I will also have a video webcam phone call with Dr. Barry K from Rutgers U on the research studies that have been conducted. He is currently waiting for acceptance for another grant and we should know next month. It is my hope to cover everything on PGAD including all the other problems women with PGAD seem to be suffering.
Over-all I am in a much better place. I feel peaceful which in turn has significantly lowered my stress level which in turn then has made living with PGAD much easier. Don't get me wrong. I am not cured. PGAD hasn't gone away. The nighttime when I first lay down is miserable, which is what most women say they experience. That's when I plug in the meditation/biofeedback/hypnosis on my IPod and it takes me away and I sleep well. But for most of the day it is suppressed. If it gets inflamed I take a Tramadol, 50 mg. to take the edge off. I also do a LOT of deep breathing. I also use a large latex exercise ball and alternate use between my computer chair at my desk and sitting on the ball. The first ball I bought was vinyl and didn't do anything, so I returned it for the latex one which really made a big difference in not feeling so much pressure in the pelvic region.
I will control my lupus and PGAD using the same techniques of which I forgot to say that I also use over the counter all natural Sam-e 400 mg a day for depression. http://www.sam-e.com/
That's the latest news for now.
I'll try to keep this page updated more frequently. :)
May 2009 continued-----
I just finished a documentary that was filmed here in Ventura from Friday though Tuesday evening----My mind-body therapy session with Shaky was filmed, a Skype video call on the computer with Dr. Barry K. from Rutgers was filmed, a woman from Sacramento with PGAD was flown in to be filmed meeting me, my daughter Lisa was flown down for support and to spend Mother's Day with me ---she was also filmed and interviewed---They filmed at the house inside and out, dinner at The Greek at the Ventura Marina, on the beach at sunset, and at a local bicycle performance center.
I had just bought a new bike seat at a local small bike shop because I couldn't ride with the one I had. It was too painful on my pelvis and buttocks ever since having PGAD. I really miss riding. I grew up riding on country roads and later with my kids along the beach. It was a big part of my life. So now that I'm living on along the beach again I decided to see if I could find a more comfortable seat--a bigger one--a softer one. I had a gel filled one but it never got soft enough to ride on .I bought a soft leather one with a raised mini-cushion on either side of the crack of the bum---I also bought a thin gel filled cover to cover over the seat...the shop owner advised me to go to Performance Bike near my house and buy some bike shorts because they have padding. The film crew made me wait till they came to California so they could film me buying the shorts! I thought it was silly but they wanted to show things that I am trying to do to help myself.
So when I went for the shorts (all caught on film mind you)---I tried on 3 different pair of bike shorts and chose the one I wanted---a really nice young kid 30ish, taught me quite a bit about bikes in half and hour or so---right off the bat he told me my bike wasn't right for me--I needed a bigger one because my knees were bent and should have been extended out more when my feet were on the ground. He also said my handle bars which were horizontally straight across were making me lean in to them which I shouldn't be doing. Any way he gave me some tips and brought out three bikes for me to sit on to see what he meant---they felt a LOT different then mine---one I really liked---Lisa kept bugging me that I should buy it--didn't want to spend almost $300 for a new bike.
Found out that they had told the producers that they were going to donate the shorts to me so we went through a mock sale at the register. All on film---cool....then as I thanked him and the manager I noticed the bike I liked was sitting there. As I was about to turn to leave they said it was mine. I freaked out because I figured they must have thought that I was buying it (I hadn't looked at the receipt he gave me) and charged me for it----I looked at Lisa and whispered I wasn't buying the bike!!! I just said I liked it---to which the manager said, "No it's YOURS---we spoke to our Corporate office and they said to give you whatever you need. We specialize in people like you with disabilities and we want to promote bicycling. We also hooked a bike carrier to the back of your car." !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Well I just stood there and bawled my eyes out from the pure joy of their kindness and generosity. That it was ME that was being cared about---I was speechless------well okay, you know me--I am NEVER speechless HAHAHA! I thanked them and said I think I know a bit of how those people on Extreme Home Make-over feel when they get the new house!
I gotta tell ya--the move out here was the best thing I have EVER done!!! I raised my kids along the coast and as much as I loved it, it was during a very difficult time in my life. I am alone this time---it's like I've come full circle but left the baggage behind! I am in a healing mecca---I was meant to be here.
Why you might wonder?
1. I have a mind body therapist here who started me on this journey of healing nearly five years ago. He advised me to move here and as Shaky always is----he's right.
2. My boss changed my hours so I could make the move. I use to drive 12 minutes to work in my car. I now commute by train one hour and five minutes each way. The train station in Ventura is 3 minutes from home. Work is about 6 minutes from the Burbank Airport station. So I got to keep my job and move 60 miles west. :)))
3. I found a house that brings me a connection to my mother and grandmother by way of it's design. The biggest similarities being: the back yard green grass, Begonias and Jacaranda tree, the wooden pergola right outside the patio door to the back yard and my bedroom facing the back yard and the westerly sunset which is in the exact same spot my grandmother's was. I know I should be here.
4. The physical and emotional way I feel when I drive to the park or go down to the beach made me realize not only how much I miss living by the beach from when I left in 1983, but more importantly because my roots are in Minnesota, surrounded by green and water, I NEED to be by green and water!
I know I should be here.
5. I found a reliable transportation car from an honest person one week before moving that I use to get from the train in Burbank to work and back to the train each day.
6. My roommates live holistically---healthy eating, calm, peaceful, HAPPY, friendly, one's a massage therapist, another owns a small spa and her boyfriend is a cameraman in the film industry so we have common interests a bit--and another is a computer geek for Oracle Database and I am a computer tech for the film industry. The vibe is very zen which is what all I've been learning the past several years.
Too many things lined up for me at the exact right moment---I believe in my very soul that the Cosmos, the Universe, my family and God Almighty himself all came calling armed and dangerous with weapons whose soul purpose was to shower me with feelings of pure joy and gratitude. This is the happiest I may have ever been---for real! I have just recently started feeling adjusted to the change of just having a room and by golly it works for me! I have discovered just what Shaky said would happen--that I would meet people--that I would come out of my shell---that I would get out more--that I would feel less stress. And ultimately rid myself of PGAD one day. Ventura is laid back the way beach culture truly is--like I remember it---it's not changed much. Friendlier--slower paced life--happier people.
What I have found is that Ventura is a diamond in the ruff---no one knows about it yet so it's still pure and unspoiled.
Yes. I belong here.
I suppose for those interested in this disorder and my "blog", you might be wondering why my last entry was two years ago. Well I'll tell you why. The last entry shares that I moved to the beach. Once I did that I stopped living a PSAS life so much and just started working on living a normal life. To do so I had to get out of the house, so I did. I made a few friends, have been enjoying the awesome music scene that Ventura has to offer, have been riding my bike at the beach and doing a lot of other things on my own. I told myself that I was not going to let this disorder rule my life but to accept I have it and build my world around it and that's what I've been doing. This also meant slowing down my involvement with the PSAS advocacy work I am doing. By the way it is no longer called PSAS --it is officially PGAD standing for Persistent Genital Arousal Disorder. Dr. Leiblum renamed it because those she had contact with via speaking at medical conferences etc. associated the word "sexual" (in Persistent Sexual Arousal Syndrome) with our having sexual thoughts and also she felt this was not as much a "syndrome" as a disorder. Dr. Sandra Leiblum was a great human spirit, very active in her life, extremely accomplished and for us a major representative to the medical community. Very sadly she passed away last year. She was in a coma after falling while riding her bike and then it was discovered she had suffered a stroke. With her husband and son at her side every step of the way, she woke up and had begun physical therapy but due to complications she passed several months later. This was a great loss not only to her family, friends and large group of colleagues, but for us as well and she is sorely missed. I was personally saddened because her and I started this work on PGAD as the "pioneers" for the disorder and there has been no one to step in and fill her shoes. I came to know her when I was seeking a name for what was wrong with me and she only had 5 or 6 women with the same complaints. It was then that she started noting the patterns and named it. Thankfully she had reached many in the medical community around the world so that there is still interest and studies but somehow I feel we would have been a lot further along with her guiding light. She is truly missed.
As time goes by there are new developments on PGAD. Those that the women networking with each other have discovered on their own and a few treatments by doctors that have given some relief. All of this information has been posted on the support groups. Support can be found at:
Membership also includes access to a private group on Facebook.
Now another reason for my near extinction in the advocacy side of PGAD is/was sheer exhaustion. Let's face it--I am no spring chicken as I will be 60 the end of this year. I work 62 miles from home and have a 9 hour work day with lunch and add a 3 hour train commute every day. That leaves little time for anything and I am trying to have a life! There is no one to help me. My e-mail account for firstname.lastname@example.org is flooded daily. Often I don't even get to the response until a month later. It's certainly not that I no longer care about the work. I do. But I lack time. I've asked for volunteers and have had only two women step forward and I haven't even had time to figure out what I can have them do--the posts on the support groups need to be organized with redundant ones deleted. There are letters to be written to organizations that could help. Getting to D.C. was on my "to do" list to speak before Congress regarding women being ignored and willing researchers turned down for funding. I ran out of steam for bringing awareness through the media, and also grew tired of their sensationalism at our expense. In the beginning I didn't care because it at least brought attention to the name of the disorder. But I am so over that now! We need serious journalism only now which we've had but I haven't even been chasing the media to get it. My bad. :( I think my personal best achievement was last year (or was it the year before?) when I did a phone interview on speaker to a class room full of psychotherapists with Fairfield University in Connecticut. The students were very curious about the disorder itself and wanted to know what they could do for patients once they have their own. They embraced the notion that it is a real disorder and it is not just all in our heads and wanted to be able to help. Through the speaker there was a round of applause at the end and that alone was the most rewarding thing I've done out there in the advocacy world. I would love to do that again somewhere via Skype video.
On the other hand at least things are moving forward. There has been a large research study in the Netherlands spearheaded by Dr. Marcel Waldinger with the help of my former support group member Hanneke who lives in the Netherlands shouldn't say former member as she is still a member however after joining mine she started her own support group for Dutch women which was awesome and she has been an incredible force for women there. Dr. Waldinger has several published reports on his two year long and counting studies on several women. These reports are also posted on the support groups. There is also Dr. David Goldmeier in the UK who sees women. I keep a running list of doctors on the support groups who are at bare minimum aware of PGAD with some taking it a step further thinking outside the box to try to help by various methods. No surgeries, no magic pills but use of tens unit has helped when placed strategically per Dr. Waldinger's instructions. Holistic measures have been very helpful. Most prescription medications do not work. Very recently a doctor in Chicago has been treating one woman with specific injections and she has been 90% PGAD free so far. She is continuing treatment and we are continuing to monitor her progress.
We have certainly made the connections of one or more issues contributing to PGAD. Among those are the following possibilities:
Low back pain, perhaps disk issues, hernias, adhesions from any sort of surgery to the back or pelvic region including childbirth. Nerves are most certainly involved. Muscle tension is involved. Inflammation is involved perhaps caused by adhesions. Hormones can play a factor. Stress/anxiety can contribute to the cause so there certainly can be a psychological component.
Lots of people suffer some or all of these issues so why doesn't everyone have PGAD?
That is the 64 million dollar question. There are various components and not everyone has the same combination of "ingredients." this continues to be perplexing not only to the women but to doctors trying to help. And of course there is still a long way to go with educating the medical community as it is still full of doctors and nurses who have yet to hear about PGAD. It's going to be a long journey. I can't help but be angry at the fact women still are given a back seat over men in today's world. Men who can't get an erection got research and Viagra. Men who have priapism got research and medication. We are scoffed at and laughed at and per reports from members on the support groups it is very common that when told by their patients, doctors talk right past them as if they didn't hear a word. Or simply state they've never heard of it and ignore them. I have suggested that women do not be up front and say they have PGAD. Instead tell the doctor you have pelvic pain and tingling nerves. Leave the part out about the build up of blood flow (which has been proven to be pooling and not circulating in the genital area via a pelvic doppler ultra sound) physically bringing about unwanted arousal that makes it necessary for an orgasm just to relieve the pressure. It appears doctors cannot handle hearing this. This is very detrimental to our need for help. That being said I would like to mention here that this disorder appears not to be single gender related. I have had men contact me with the same symptoms but it is not priapism. There is no erection but there is the feeling of being aroused. It has been my experience from talking to those men that their doctors listen with interest and try to help. Talk about your discrimination!
Which brings me to another point of interest. The range of onset varies from since childhood with some being sexual abused and others not (or perhaps it has been suppressed) to one mother who contacted me desperate to help her teenage daughter who was brave enough to discuss it with her mother. In that instance it was hormone related and through research on my support groups and networking with others she took her daughter to the right doctor who diagnosed PCOS (Polycystic ovary syndrome) and treated her. I am happy to say she is doing well today. I've had college kids say they had to drop out of class because they couldn't sit long or concentrate with the distracting physical sensations. Women who blame the abrupt stop of anti-depressants, specifically a SSRI. Some said the onset started not long after childbirth. Many are peri or post menopause. Some have stopped driving, had to quit working and have felt suicidal. If we cannot even get research funding granted how in the hell would disability ever be approved which is what some of these women qualify for! The frustration of it all often finds me throwing my hands up in the air ready to give up completely. But then I call some of those who want to end it all and my compassion just won't allow me to stop doing this work completely.
I know this sounds odd but there are a few women who are what I would call in full "remission." I am in partial remission. How did they get there? How did I do it?
Here are the tips and tricks to the success of stopping or at the very least making PGAD lessened in your life:
1> ACCEPTANCE. Embrace PGAD for what it is. That doesn't mean you have to start liking it but you cannot fight it. It's a beast with an ugly head and it feeds off......
2> STRESS. Stress is a big factor in the intensity of the sensations. Learn to manage your stress and anxiety and this means not just over having PGAD. This means managing your anger, rage, worry, fear etc. over anything in your life. Anxiety and stress is fodder for PGAD--it will devour it without a second thought and you will pay the price.
3> MEDITATE. Learn to meditate even if it's just the controlled breathing portion of it. The breathing will relax your muscles which are very tense even if you aren't aware of it. You should be deep inhaling normally anyway but in today's stressful world most of us do not. Make it a point to remember to breathe. Put a rubber band on your wrist or a Live Strong bracelet or a Thoughts Become Things bracelet and breathe every time you look at it. You can do this while working, at lunch, while watching TV--it's cheap and so rewarding to your body especially for PGAD. I listen to some awesome CD's by Ellen Chernoff Simon (google her) that are for stress, keys to happiness, healing imagery, sleep, release of negative thoughts etc. I put the CD's in my computer and synced to my mp3 player and use them at bedtime. They will relax your body and knock you out. Another thing to use if you have trouble sleeping is an eye mask so the room is dark, sponge earplugs and 3 mg of Melatonin. You will wake up rested.
4> STRETCH. There are specific stretches posted on the support groups that have helped several women and were provided by a good friend and former PGAD sufferer who has been in 'remission' for years (but she is still aware of it's presence just below the surface so she doesn't stop her routine).
5> RESTORATIVE YOGA/TAI CHI CHAI. These will help your mind and your body and are so simply easy to do you'll wonder how it could be doing anything but believe me they both work wonders.
6> DIET. I'm not talking about losing weight but if you need to you should do so whether or not you have PGAD. By diet I mean eliminate as much sugar and caffeine as possible out of your diet. Try eating organic--find a farmers market. They are fun to go to and locally grown is so much healthier for you and your family.
7> EXERCISE. Try to walk everyday--or ride bike. If these are too difficult for you, do leg lifts while sitting or lying down. Swimming is not only good for you but when you are in the pool you are going to see that you don't even have PGAD........at ALL!!! Which lends credence to pressure on something somewhere that is lifted by the buoyancy of water. Too bad we can't become mermaids! :) Just do what you can and if you can't at least stick with the stretches and I'd do them 3 times a day if possible.
8> MASSAGE. If you can afford it go for a full body massage. If you can get a female therapist, all the better. Tell her you have a pelvic pain disorder (again skip the orgasm part) and ask if they can stretch out your low back, your hip flexors and the upper inner thighs which you will be surprised how tight they are. This should release via myofacsial massage all the trigger points and muscle tension. You'll feel great!
9> CLOTHING. Try to avoid anything tight such as skinny jeans or small bikini underwear or bathing suits. Just the pressure of tight clothing against the pelvic can cause misery.
So I think that's it for my tips. I will tell you that by doing these things over time that I only have PGAD now when I am horizontal. Laying on the couch watching TV and when I go to bed for the night. I will get a sense of pressure but no tingling or arousal now only when sitting for long periods such as on a plane. I can live with this for sure.
Another thing that seems common is the women have a host of other medical issues, among them being:
Irritable Bowel Syndrome (I am sure stress related)
Fibromyalgia (more stress and tension related stuff)
Restless Leg Syndrome
As a reminder stress can actually cause all sorts of physical problems so be sure to handle the stress.
I have been suffering with tight painful swollen legs since last November. I have done everything possible from walking, riding bike, swimming, stretching (which I do anyway), and using muscle relaxers, to no avail. By the first of this year I was in such a stressful state (partly caused by not knowing what's wrong with my legs and partly from work stress) that my doctor wrote me off work for stress the first of this year. The only thing that had changed when the legs started swelling was my internalizing extreme stress at work so it made sense. But I was at the point of such anxiety that I was crying at my desk and I am a pretty tough cookie. My doc put me through more hoops for testing, X-rays, MRI's, EKG, and nothing was found. Blood work, Echo cardiogram, tread mill stress test via a heart doc. Finally a rheumatologist said I had stress induced fibroymalgia. I know many women on the support group who said they have it but I really hadn't looked it up for what it actually was. The doc gave me a brochure and my jaw hit the floor! Fibro fog, full muscle aches, no concentration, sleep problems, stiffness, chronic fatigue, exhaustion, anxiety--I mean I pulled out a pen after page two and started underlining and had to underline almost every single thing! Course I wasn't given any treatment for it which is odd. He did write a prescription for Klonopin for pain but I had heard that name on the support group so inquired and the ones that took it said the PGAD got worse so I didn't fill the prescription. Besides I really try to follow a homeopathic, natural path. I think drugs are so full of who knows what all that they cause all sorts of things. I started getting Restless Legs too but am using homeopathic Restful Legs which you can get at any health food store or Whole Foods and they work great. My doctor could only come up with stress edema regarding my legs. Water pills didn't help much at all. I am going to try going back to work next week after 4 months off and so I asked to see a PT which I hadn't done yet. I was lucky enough last week to get a PT who believes in the mind-body connection and was just great. She felt around and told me I don't have "edema" but rather I have LYMPH edema which is entirely different--so I am working some massages of the lymph-nodes that she gave me a chart to follow. She also couldn't believe that all the doctors missed this! Sadly it doesn't surprise me one bit but I am grateful for her attentiveness. She also advised that instead of using the knee high compression socks for the edema that I've been using, to purchase a pair of thigh high ones along with a wedge to raise my legs when I lay down. Both are on order. But when I was on the site for the thigh highs I found something very interesting. It is called a Labia Swell Spot. It is something you can wear with or without undergarments and has a Velcro strap to go through your legs and it is suppose to circulate fluids. I called and inquired if that also meant blood or was it just water. The woman was great and I told her about PGAD--she was horrified and very sympathetic. She took my number and contacted the manufacturer and called me back (how's that for over the top service!) to let me know that it should work for blood as well, so I ordered it. Because the doppler ultra sound years ago said there is blood pooled in the genitals from vasocongestion I am going to test this thing out to see if it will get the blood circulating in the pelvic region. Perhaps this will help with the feelings of arousal by decreasing or eliminating them. Wouldn't that be something?
So that's my update for now.
Peace to all and to all women EMPOWER YOURSELVES!
Revving up again after a long break from advocacy--it was long overdue--if you've read this blog then you know how far this has come, and this in addition to my working a full time job with a 13 hour day with the commute and trying to have some fun in my personal life. I juggle a lot and am now rejuggling --or prioritizing so I have started doing a bit more. I've been in touch with a doctor who runs a chronic pelvic pain clinic and he was extremely receptive to PGAD and learning about it. We've spent quite a bit of time on the phone as I explain the whole gamut of things and I hope to invite him to be in our live chat room to speak to the ladies later this year. Speaking of chat rooms Dr. Barry K. at Rutgers got back in touch with me asking if any women had had an MRI of this specific region:
s2, s3, s4, and s5 and if not to please request one and specify that the entire sacral spine should be included, down to the coccyx. Ask for T2-weighted images, and if possible, also T1-weighted image. Then send the report to him. He has long been a researcher of spinal cord injuries with a big interest in the cause of PGAD. The last research study he did was back in 2006 when we flew to Rutgers and had a brain fMRI which showed unusual activity in the area that controls pain and itch. Then funding ran out. He recently was working with another researcher and thinks he may know what's causing the tingling and muscle spasms, and if so there would be immediate treatment for it. Now this is exciting news! However he needs more data which means he needs as many more MRI's as he can get so they can continue to study this new found idea. Last week he was my first live chat guest and it was a great chat room event for those who wanted to know more and for those who are in the process of getting the MRI done and to him. This would send me over the moon if it turned out to be something concrete and fixable. Let us pray....and if you can participate in this study and feel you have PGAD please visit the support groups for more information on how to get involved.
by Susan Bilheimer, Robert J. Echenberg M.D.
by Robert Scaer, M.D.
Gil Templeton (Author)
Interesting developments the last few months. The first is on a personal note. I have pretty much been celibate by choice since 1997 except for a short time in 2001. The reason I've been celibate is
1) I don't want to get involved with someone and then it becomes intimate and then I have to reveal or explain PGAD to the guy. I'm not one for one night stands so if I were to be involved on an intimate level I would feel I need to share this with that person. At least that's what I thought.
2) I wasn't too sure since I'd let so much time pass if my "parts" would work. My thought was use it or lose it and I wasn't using it so I thought perhaps I'd lost it--or that physically I had tightened to the way I was when still a virgin. I was worried it may hurt.
3) Listening to women and reading their posts over the years convinced me that intercourse would cause irritation and cause PGAD to go through the roof.
I have treated myself over the past several years by deep meditative breathing, Thai Chi Chi movements and Restorative Yoga stretches to relax my muscles and I've been studying and practicing energy clearing a bit. I found all very helpful. But after having PGAD since 1995 I reached a point recently where I just do not want to live the rest of my life without any physical relationship. The dilemma was how to change that. A perfect solution jumped right out in front of me when I wasn't even thinking about this subject. A close male friend of mine and I were hanging out one day a few months ago and out of no-where the room filled with an electrical charge that both stunned me and excited me--and that current was realizing I had a physical attraction to my friend. A couple of weeks later we went out for drinks at a club and I had enough to drink that I could cough out my thoughts so I told him what I felt that day. He said he felt the same current and to make a long story short we became friends with benefits just like the movie. Around the same time I decided to start using Premarin because my doc tells me with every blood work that my hormones are low and I haven't used any HRT. Starting Premarin at the same time I became sexually active was pure coincidence.
I can safely say for myself that I quickly fell into place liked I'd never given up sex and had it without any pain. It was such a relief to know this. For some, reading this personal information may make them feel uncomfortable like TMI (too much information) however I would disagree. Since PGAD has affected everyone I know in a negative way with regards to a normal sex life I want to shed a little light on a dark subject. I actually enjoy being active now. I enjoy the contact with someone as it is human nature to have physical contact and this beast PGAD destroyed it for us. But I am excited and my body is excited and it feels normal. For PGAD women, myself included, we have had the muscle spasms and nerve tingling arousals that were not invited, were unwanted, and were the cause of major depression, suicidal thoughts, severe anxiety and a host of many other things. I am finding for myself now that it is possible to be aroused without the cause being PGAD but instead coming from the attraction of the person you are with. So while with PGAD we have zero thoughts of sex, I actually have thoughts of sex when I am with my friend and so my body at that time is doing it's normal job of becoming aroused, NOT a PGAD unwanted arousal. So maybe this will help others and offer some hope.
The other piece of news (development) that has taken place is Dr. Barry K who has done research on PGAD, of which I participated in NJ has had a hunch on a possible cause of PGAD and came to me to see if any of the members had already had or would go to have an MRI of specific areas of the lumbar region . He wanted to see if any tarlov cysts show up. Out of 13 women who got those films to him, 9 have tarlov cysts! I sent him mine on disks but he can't open the images so I am going to pick up the films and snail mail them to him. Should be interesting. Here is a link regarding these cysts.
There is a slow but steady increase in membership as all the television coverage we did has re-run many times and that always brings more awareness and reaches those who recognize the symptoms and were suffering quietly. Research funding is really where we need to focus now. I am grateful for those who are doing what they can to try to discover the common link or a helpful treatment. I'll update on this research study as I learn more.
An update on a few fronts.
OH MY GOD!!!! I'm back!!! I have had such a problem trying to get logged into this site to update it as you can see it's been THREE YEARS and there is lots of new info---so I will be working on updating with the latest PGAD info in the near future including how I'm doing. You have no idea the nightmare I've gone through, then gave up, then would try again to get support through Lycos whose server this site resides on. Anyway GLAD TO BE BACK---stay tuned
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