Fellow Suffer's Storys

The following stories have been kindly provided by fellow sufferers. Although every story differs you will find that as an endometriosis sufferer you can relate to what they have been through. Reading stories on other websites meant a great deal to me personally. Suddenly, you realise you are not going mad and that what you are going through is real and more importantly, YOU ARE NOT ALONE!!!

If you would like your story to appear on this site please email it to 'Lotty the Webmaster' by clicking on the logo below:

I was getting very heavy periods and blood clots to start with and then the intense pain started, I just thought it was normal because my mother use to get the same symptoms. This carried on for about a year and then I can remember saying to myself this pain can't be normal, so I made an appointment to see my GP. It was a lady doctor and she did seem reluctant, but I was not going to be fobbed off. First I was tested for clamydia which proved negative and then I went to the hospital for an ultra sound scan where they detected a cyst on my ovary. They suggested it was probably benign they even suggested it could be a chocolate cyst and even mentioned endo. I had my lap and found endo on my left hand side, apparently it is mild endo. The gyno then put me on Zoladex implants for 6 months, one G.P. said it wouldn't stop my periods and the other one did so I was confused as after the first injection my period started. I can only describe as being on zoladex as hell it really affected my moods and the side effects are none too pleasant the night sweats being the worst. I was then told after my course of zoladex has ended there is no guarantee that the endo will go. I have just had my fourth period since coming off zoladex and I know it is back because of the intense pain I have endured for three days and also the heavy bleeding. My next step is too have the cyst on my ovary removed which I am having done on the 21 August. The only thing that is worrying me is that if they can't pierce the cyst they want to remove one of my ovaries. I also get a lot of pain in my bowel I suspect it could be endo I have got a colonoscopy in October so I wont know until then. I will keep you posted after I have had my operation.

My name is Marina, my story begins when I was 13 when my periods started. I finally got diagnosed in 1996 when I had a Lap, I was on Danazol but it never worked,. My gaeny said I might not conceive. I already had a boy called Josh so when I conceived in 1999 I was over the moon. No more pain I thought but no not me I had endometriosis through my pregnancy. I saw the gaeny and she said that 25% women will still get endo. I had my second lap 3months after Megan was born in Jan 00. It was strange at first but I felt a lot better no more attacks until now, over a year. I had a mirena coil fitted as well. I just have to wait now as I have been referred back to the gaeny. I feel sad and depressed again and the pain is twice as bad. I would love to share with you the experiences I have been through and going to have. Hope this has helped you a bit

I started my periods at 14, I used to get really bad pain, very heavy bleeding and sometimes I would go a grey colour and just pass out. I would go to the doctors and get sent home being told everyone has this trouble I have got to learn to cope with it. I knew this was not normal as my friends did not seem to be in as much pain as me.

I left school at 16 and went to college, my course got terminated because I was having so much time off with my periods. I started work and every job I had I lost because of the time I would have off due to my periods. I got another job and luckily enough my boss recognised my symptoms as her daughter was an endo sufferer. My mum took me round the doctors and asked if I could be checked for endo, the doctor just laughed and said I was too young. My mum demanded that I be checked, my periods got worse and worse so I got my appointment through for my lap quite soon. At the age of only 17 I had been diagnosed with endo, I was told it was on a ligament, I can't remember much. I got put on Danazol after lap and they gave me bad side effects, I was very moody so I had to stop.

A year later my periods got worse and worse, I had to wait for another lap, this lap also got brought forward as I was in a lot of pain. I was told if the endo had spread they would laser it away. I went in hospital for my lap, when I woke I was told they had to laser as endo had spread to ligament and pouch of douglas. I was put on Provera which was supposed to stop me from bleeding but I bled all the time, I also got very moody so I was taken off Provera. When I was first diagnosed with endo I cried and cried because endo meant one word to me and that was I could not have children. I wanted to try for a family as soon as possible, I had to wait 6 months to
let Provera get out of my system and then I fell pregnant after 6 months of trying. I had a fairly good pregnancy and had my first child at the age of 21. After my baby my periods calmed down, the pain did not stop I was put on the pill so I would not be as heavy, the laser must have helped.

When I was 23 I wanted another baby, I fell pregnant after 4 months of trying. At 22 weeks pregnant I was rushed into hospital as I was bleeding, no one could find the cause of this bleeding so I was told I would have to stay in. I bled for 6 weeks constantly and had to stay in hospital the whole time being away from my other child. I had the baby at 28 weeks pregnant being 12 weeks early he weighed only 2lb 2oz, the baby (Ronnie) had to stay in hospital for 3 months as he was poorly. I have been told since that this happened due to endo.

I am now 26, my children are 2 and 4 years. My symptoms of endo are Painful periods, heavy bleeding, blood clots, headaches, tiredness, painful bowel movements, pain during intercourse, increased PMT. At the moment I am looking in to if I have a hormone imbalance as I get very moody I feel like I am on my PMT 3-4 weeks out of one month. I have gone to see my gyne and have been told this is impossible and he wants me to see a shrink, I feel so tired I don't think I have the energy to keep fighting for answers. I also feel like I don't even have a sex drive, I am never in the mood for sex and this puts pressure on my relationship, especially as I am getting married next year. But I always say how can I want something that hurts so much?

Tracy (5/8/01)

At the age of 13 I started my periods, and by the time I was 15 I was on the pill as they were so heavy and painful, my mum actually took me to the surgery so they would believe me. I took it, up till I was about 18 1/2 when I realised I was doing so badly with personal relations as I was depressed, which I am sure was the pill. I was then stuck with regard to contraception, so I had the Depo-Provera Injection Twice. Oh my god, if any of you are ever
thinking of trying it, please don't. I had horrible mood swings, constant back pains, and no periods for a year. When me periods did return, I was menstruating for 9 months. I was a mess. It was about this time that I had
my first admission to hospital. I spent two days as an in-patient on antibiotics as they thought I had P.I.D.. I was given an ultrasound scan which showed enlarged ovaries. When I was discharged I was told I had irritable bowel syndrome, eat more fibre and I would be fine. Years went by, multiple admissions to casualty for query ectopic pregnancy, query miscarriage, query infection and possible ruptured cyst. I became more and more disheartened, each time I was told, there was nothing wrong with me, Women get bad periods, I had to learn to put up with it. I was told my pain was in my head, that I was wasting N.H.S. resources and that I was just looking for attention. In one follow up appointment, I went in to see the consultant and demanded a Laparoscopy, he agreed (my heart stopped beating whilst I waited for his reply). My op was scheduled 12 weeks later, and as I came round from my anaesthetic, the consultant told me "I had a perfectly healthy reproductive system, although my bowel as a little 'loaded,' congratulations". I was told to sort out my IBS and I would be fine. This was in Jan 2000. I think my lap must have done something to relieve my symptoms for a while as I was okay until Sept of that year, when the pain returned with vengeance. I missed so much work, I was constantly in pain, and again I was a mess. I went to see my GP, I had left it till I was at the end of my tether as I was sure she would be useless. I was 24 by this time. She listened, then said "Tracy, the pain is due to your endometriosis". Shocked, I nearly fell off the chair, I was convinced I had it but the consultant had told me I was healthy. It turned out he had found a very small amount on my left utero sacral ligament, but didn't think it was worth mentioning to me. Angry didn't even come close. I was prescribed strong pain relief, Tramadol and Danazol. Both of which were horrible. Terrible side-effects and feeling spaced out all the time. During this time I also had my routine smear. It came back borderline so I had to go to the clinic at the hospital to have a few tests done, They found pre-cancerous cells which needed to be removed, and as I found the examination so painful, they decided to do it under general anaesthetic. I was due to go in and have it done on 03/01 and my GP also suggested we could get the consultant to do a hysteroscopy at the same time, to look at my endo. (Shows how good she was, seen as endo lives on the outside not the inside)!!!!!!! When I hadn't heard anything for a few weeks I called her, she was very short with me, and said it was a decision for the consultant to make, not her. I would like at this point to tell you what I thought of her, but trying to keep this polite!!!! So, I decided to see the consultant direct and ask him, I phoned and managed to get an appt. I got there, and he didn't know anything about me, or why I was on such a cocktail of drugs, as according to my notes there was little wrong with me. He was very too the point, and in my fragile state I felt like the last part of the rug had been ripped from underneath me. I cried all the way home. The only good thing was he agreed to refer me to the pain clinic. Upon returning to my GP, she was just as pleasant (please note the sarcasm). She was horrified that I had taken matters into my own hands, her exact words were "I had shot myself in the foot, she could no longer confer with the consultant on my behalf". As far as she was concerned that was the end of it. I was mortified, my other half was so upset he threatened to go and tell my GP what he thought of her, until I calmed him down. My pain clinic apt came through, for August 2001, 6 six months away! Then the worst pain I had ever felt in my life hit me, one Sunday night. My other half didn't know what to do, and in the end he couldn't bear me rolling round the bed in pain any longer and phoned the doctor. She came, and as my periods are not regular, could not rule out ectopic pregnancy, sent me to the hospital. I had morphine and a positive pregnancy test. I was told I would have to have a blood test and a scan the next day, and probably the removal of a fallopian tube. My blood test was negative, so I wasn't pregnant, and my scan showed Polycystic Ovaries. I was then told I had Polycystic ovary syndrome. The best thing was my pain clinic apt was brought forward and I got to see my
greatest friend. This consultant was one that specialised in chronic pain, and he found out I had a trapped nerve in my abdo wall. He injected it and I found myself pain free for two months. Trouble is now that my periods have returned, and my nerve block wore off after only three months (having it injected again tomorrow!) My pain has
become cyclical again and I am only having one pain free week in every cycle. I have found myself a new GP who is wonderful (they do exist) who is doing blood tests for my PCOS and tiredness, and treating my horrid PMT. He also thought it was about time that I had another Lap, as he has no doubt that I have endo and no doubt that something has got to be done. I have had over two months off work this year for pain alone, and often find myself wishing that my life was over, but I have learnt to cope by holding on tight to my pain free days, and by loving those around me. I know this story is really long, but I hoped, by writing it, I could give hope to others in the same position. I will never give up and hope that you won't too. Take care and God bless.

I am 31 years old (32 in Sept 2001) and was diagnosed with Endo on 16th March 2000.

I did not even consider I had a gynealogical complaint and had been going back and forth to Hospital for about 18 months prior for various bowel exams after I suffered a severe bout of Diahorrea that lasted for 2 weeks and got so bad I was passing blood. Once this eased off I still suffered regular bouts of Diahorrea and severe pain on left hand side of stomach, hence the bowel exams that followed:

     Barium Enema
     Colonoscopy

After both tests they diagnosed IBS as the exams showed nothing unusual in relation to my bowel.

Months later I went for my regular smear test (had to go yearly due to an abnormal cells result 4 years ago), because of severe bleeding that occurred as soon as my smear test had taken place my doctor said he would refer me to see a gynae as this was not normal. On my first gynae visit I was asked the following:

     Did I have irregular bleeding whilst on menstrual cycle?
     Did I have any breakthrough bleeding?
     Did I have painful sex?
     Did I have painful periods?
     And many more questions

I found myself answering YES to all of these and more so he booked me in for an Internal Scan which showed my left ovary was over twice the size of my right (still not sure why ?). A month later I went into hospital for my 1st Laparoscopy and advised that if endo was found they would perform the laser surgery to remove it. The Operation uncovered that I had endo on my ovaries and it was stuck to my womb and my bowel was stuck to my stomach. Unfortunately, after recovering from the operation the pain returned. I was on a course of DANAZOL which was great for a while (apart from some side effects).

I then found further information from the National Endometriosis Society (NES) website that got me thinking that maybe I didn't have IBS and that this was endo related, although my gynae always refers to IBS separately.

Nearly a year later I went into hospital for a Partial Hysterectomy, but was advised that I may have to have my Ovaries out at a later date as this would only stop the Heavy Periods and was not a guaranteed cure for endo. I did ask to have my ovaries removed to but because of my age I was advised against it and went ahead with the partial instead.

Now 4 months after my Partial Hyst the Pain is back I have an additional Bladder problem caused by the surgery and my bowel movements are up the wall again. My next appointment to see my gynae is in September and it's unfortunate I'm counting down the days until I see him hoping he can help, (already on medication for pain/IBS - taking colofac and on medication for Bladder problem Detrusitol).

I'm not sure what to expect next but am ever hopeful that someday my pain will be no more !!!

Fiona (7/8/01)

1987 (approx) Started getting occasional groin pains, sharp and uncomfortable, but passing uneventfully. No medical opinion sought. Mum suggested ovulation as a cause, but they had no pattern. They've always happened, gradually becoming more frequent and uncomfortable over the years.

March 2000 I had an attack of excruciating groin pain, was sent to casualty by a locum, and there was diagnosed as having groin strain, despite my telling them of the history. The following day I went to my new GP wanting more painkillers and to discuss the doubtful diagnosis, he said I had IBS. Since that day, the pain has been constant, the attacks of excruciating pain came regularly, the gap between them getting shorter each time, and the length of attack getting longer each time. Only minor pain control prescribed, despite desperate pleading.

September 2000 2nd visit to A&E with severe attack of groin pain, this time taken from work by a colleague, X-ray showed severe constipation (now known to be part of the endo obstruction), therefore obscuring the ureter, so any possible stones couldn't be seen. Was given pain jab and told if I presented again they would admit me and explore further. Another GP in the surgery then decided to explore kidney possibilities, ran blood tests and referred me for an ultrasound scan. She also agreed to recommend a gynaecologist with an "interest in kidneys", as my parents wanted to pay for me to see a specialist privately. He said I definitely had no gynae problems, and that uretal/kidney issues were also unlikely, but worth investigating with the ultrasound due to a childhood history of reflux.

November 2000 3rd visit to A&E. Here I was (at last) given strong, oral painkillers for 3 days (dihydrocodiene, an opiate morphine derivative). I had arrived prepared for the promised admittance, but they sent me away again. I went to GP and asked for more dihydrocodiene. She agreed and for the first time in 8 months I had something that would take the edge off the worst of it, and give me a break from the nagging continual daily pain when it became too much.

December 2000 I had the ultrasound of the kidney, showing it to be dilated. I was referred to a specialist, and my parents stepped in to speed things up by paying for me to see him privately, and then paying for the IVU he recommended (X-rays with iodine in the bloodstream to watch the urinary system at work) . This showed the kidney and ureter were dilated, because of a narrowing at the bottom of the ureter. During the consultation he told me if I had another severe attack I should present at A&E and tell them he had instructed me to, and they would admit me under his care. I did this with the next attack a few days later, but they refused. The last day I worked was during December. I had applied for another post at work, and declared my health issues. The interview happened while I was on an initial 2 week note, I was turned down for the post, despite being told unofficially I had been the best candidate. They placed me 2nd, using my less animated presentation as the excuse (they knew my health was the reason for this). After starting, the candidate who was chosen left the post. They did not offer it to me as the next placed applicant, instead offering it to someone who finished below me in the placing. At that time I was still thought to have kidney stones, which would be resolved in the near future. I desperately wanted that post.

January 2001 I was admitted to hospital for a cystoscopy, to look at the ureter to see what the problem was. What was meant to be a 2-day stay for a routine diagnostic operation turned into a very difficult 9 days, after the ureter was punctured during surgery. the following 8 days consisted of various procedures (some unnecessarily distressing and painful), including a kidney drain, in an attempt to heal the ureter and take steps to avoid kidney damage from the error. They fitted a uretal stent (a tube to aid drainage) and removed the drain before discharging me. I was brought back 2 weeks later for a CT scan, as my urologist now suspected that the blockage was being caused by pressure from the outside of the ureter. The report came back that there was an ovarian cyst, the uterus was significantly shifted to the left and that a "mass" had been detected in the lower left abdomen.

March 29th 2001 I had the lap. While still groggy from the anaesthetic, one of the gynae team came to tell me the ovary was healthy on top, but was stuck down on the lower side, and was dragging the uterus to the left, they suspected endometriosis, but couldn't get behind to ovary to confirm this. He told me I had a choice, I knew he meant that my choice was whether to have the ovary removed... although still woozy, I said I didn't really see that there was a realistic choice for me, when placed in a position of having to sacrifice a kidney or an ovary, and maybe lose function in both if I didn't have it out... I had no choice, so he said he'd get straight on to organising the surgery.

April 2001 I got my surgery date for Monday 9th, just 11 days after the lap. I spent that week realising how uninformed I was, I'd been so shocked and groggy after the lap, I didn't get to ask any of the things I should have... or things that cropped up after I'd had time to think, and there was no time to do anything about it. My urologist was going to be on standby on the day of the op, and the cut was to be central from the navel to the pubic bone, so that if uretal repair was necessary, he could come in and do it during the same surgery, by diverting the healthy part of the ureter to the right side, connecting it to the right ureter.

3 days before the op, it was postponed by 3 weeks, due to the urologist being unavailable. I requested an appointment with the gynaecologist in the meantime to answer some of my questions. I went in with a list!! about family risks, if I'd have drug therapy, fertility implications... I still felt a bit in the dark, if I only had his information to go on, I would expect a permanent cure from the surgery, but I know from research, endo has no cure, and is rarely managed with one surgery and no drug therapy.

During my Pre-op clinic appointment I told the nurse about my experiences to date, she suggested I consider changing GP... as I should have been referred to a pain nurse or clinic, as it had taken me 8 months of constant pain to persuade them to prescribe anything stronger than co-codamol.

April 30th The surgery went ahead. I woke in more pain that I had expected (the pre-op leaflets say extreme pain is unnecessary, and they have means of managing it). I did tell my anaesthetist that I was on dihydrocodeine, an opiate, as I'd read online that patients on this can build a resistance to the morphine, and should tell the anaesthetist so that they can have their morphine dosage adjusted accordingly, I suspect this didn't happen.

The surgeon had found extensive endo in the abdomen (although that wasn't officially confirmed as tissue testing had not yet been done... and they still have yet to tell me that it has been confirmed). It was, apparently the worst case of endo he'd ever seen, and set like concrete to my ovary, ureter and bowel (I had been constipated for as long as I could remember without even realising anything was abnormal... as it was normal for me, but I had noticed changes before the surgery which indicated the bowel was becoming restricted). They had removed the ovary, fallopian tube and they thought they had got the endo out. The uterus and right ovary were thought to look healthy. He said the ureter wasn't healthy, he had spoken to my urologist at the time and a decision had been taken to not repair and close me up. I asked if that meant they felt that it would recover without further intervention, he said no... that the ureter had come out of surgery in a very poor state, and was found to be fibrous and thickened. I can only assume the repair couldn't go ahead due to the underestimate in the time it would take to remove the endo.

My initial post-op recovery was good, although I did suffer some infection after being discharged, but this was managed with antibiotics from home. I stayed with parents for a few days, and then returned to my own flat. The uretal pain continued, but to a lesser extent at first. Despite the post-op pain, this was my most comfortable 6 weeks of the last 17 months. I felt comfortable enough to continue on the Tramadol pain-relief prescribed on the ward, not as strong as the dihydrocodiene, but also less damaging in terms of dependence. Unfortunately my GP hadn't heard of Tramadol, and only prescribed 100mg a day, compared to the 400mg I was getting in hospital.

June 2001 I had my first appointment since the surgery at the end of the month, despite being told it would be 4 weeks after discharge, I saw a younger member of the gynae team, who I hadn't seen before. He examined my abdomen, and told a nurse he could feel some thickening on the left side, but he wouldn't say anything to me about what this meant, and simply said he wouldn't sign me off yet, and would arrange another appointment in 6 months. The uretal & kidney pain increased, and I started back on the dihydrocodiene

July 2001 Saw my urologist. He is very good (despite his accident in the January surgery). He seems very interested in my case and talks to me a lot about what he's found and plans to do. He told me he was quite disturbed by the gynae's decision not to medicate after surgery, and that he would write to question that decision (something I find quite refreshing in a member of the medical profession). Resistance to the effects of dihydrocodiene returned and became less effective at prescribed dosages.

August 2001 I have just had the stent removed from the ureter, this was very painful due it being covered in calcium crystals. I'm due to have an IVU in 2 weeks to check the extent of the blockage, then surgery is likely to reimplant the ureter to the bladder, alongside the existing valve, therefore bypassing the blockage. I fear a return of the severe attacks I had before the stent was inserted, the kidney pain has already worsened, and I have had a lot of discomfort and bleeding from the stent removal. I fear further dilation and a return of the attacks I had prior to having the stent fitted. I am glad though that the ordeal of having the stent out is now over, and it did cause a lot of bladder discomfort throughout the last 7 months.

I feel endo has returned, I had extensive bleeding on urination throughout my last period, the uretal and kidney pain is worse than it was in the first few weeks after having the endo removed, my bowel function has returned to its pre-op state, and I have abdominal pain I didn't have before surgery. I am hoping my urologist will bring the gynae team in on standby, as they did with him last time, to remove endo if found when he repairs.

Ureteric obstruction secondary to endometriosis is VERY rare (less that 200 cases worldwide in 30 years). This, along with the fact that it's the most severe endo he's seen, makes my gynaecologist's decision not to see me personally on follow-up worrying, as I feel junior members of his team are even less likely to realise the complications and implications of the threat of renal damage (renal damage/failure and morbidity rates are high in this complication of endo, due to slow diagnosis). I am also very concerned that, as endo attracts to scar tissue, the newly repaired ureter will be a target for further endo adhesions which may develop.

I have been off work since November 2000, have lost a job I was the best applicant for, and am now struggling with benefit applications, my employer exacerbating this problem by refusing to tell me that my income had stopped in May, and me only discovering this on receipt of a bank statement in June; resulting in late applications for benefits. I am unable to go further than the corner shop without assistance due to the pain, fatigue and influence of opiate pain control. My flat is very unsuitable: leaking roof and bedroom window. I have slept on the sofa since November, even through post-op recovery, due to damp in the bedroom, and rainwater getting into the bed, but a move is impossible due to my current state of health.

Mostly I deal with each situation as it arises. This is not always the best way. I was in denial about having a disease, particularly because it was a "women's" complaint, as I feel people brush aside women's issues as unimportant and distasteful. It took 2 months after having the ovary removed for me to start to accept the endo as part of my problem, and it not simply being a means to cure the renal problems. I may come through the uretal surgery fine, with no further renal problems, but I will always have endo, and I have to learn to come to terms with that. Since accepting the endo as part of my life, I have started to consider a hysterectomy, and removal of the remaining ovary, despite having no children. If I really believe I want to take that course, I think I need to seek counselling, as it's not a decision anyone should make out of desperation to try anything to escape being imprisoned by this disease, as it does not guarantee relief.

My problems started when my periods started at the age of 13, I always had bad pain but not unlike many others at school. As a few years passed it got worse and I had to have time off of school with my period pain. Years passed and the situation got worse, my Doctor for so many years would just say you are just unlucky and JUST have bad periods. For about 4 years between the 3 Doctors at the surgery they tried different pills over periods of time for about 4 years, some would make me collapse and pass out at work, while all the others just did not touch the pain. In the end (December 1994) I almost screamed at my Doctor to refer me to a specialist because my life was becoming unbearable and I was in fear of losing my job (I worked there for 5.5 years), because of having to have the 2 days off each month at the beginning of my period (which one year I took nearly all as holiday).

I went to see the Gynaecologist (March 1995) he seemed very nice and understanding at first. He carried out one Laparoscopy (June 1995) and lasered some Endometriosis, but apparently there was a small amount on the left side of my womb, which was too dangerous to laser. In October 1995 I was put on Synarel (nasal spray hormone treatment), this was meant to be for 6 months but I was taken off of it after 5 months because my hair had started to fall out & I was extremely depressed (understandable as I was ill & losing my hair), depression was also a side effect of the drug, BUT what did my GP do – he sent me to a psychiatrist (March 1996). I couldn’t believe it, sending me to one of them, when I am one of the fortunate who have had a wonderful upbringing, I have lovely parents & brother and some woman is asking me about my child hood, I was disgusted. My GP thought I was some sort of hypochondriac or something. Throughout this time it was very painful to have intercourse.

I also had abnormal cells and had to have a colposcopy. The same Gynaecologist done this too and the day after I went into work but was like a zombie as I was in so much pain. I went to my Doctor and he signed me off for a week. Throughout all of this my Employer requested all of my medical files including from the hospital, of course they got to see all of them because I was actually ill, I had nothing to hide from them. On the 2^nd day of my signed off period I was visited by my Supervisor and Personnel Officer, they were quite pleasant at first (bearing in mind that my supervisor was a so called friend), but at the end of their visit they told me that if I came back to work they would take me through disciplinary action. I was absolutely gutted I had worked really hard there for 5.5 years and this was how they would repay me. They added that if I did not want to come back, don’t worry we will pay you your notice period of a month. Once again I was gutted, that’s how much they thought of me. I had about 30 friends there, who I see none of since then.

My Gynaecologist told me after coming off of the Synarel that this may be the only chance I have to become pregnant. So I did (in fear of if I left it, it could be too late), at 7-8 weeks I had a miscarriage, this was the worse time of my life. I got rushed into hospital with my Dad & Boyfriend. They put me on a commode & then when I was screaming in agony and passed like a large clot, I looked at the nurse and she told me I had lost my baby. I cried all night in hospital, my Dad and boyfriend went home believing the same. At 10.00 a.m. my Gynaecologist was talking to my boyfriend and best friend, when they came over I could tell that Nathan (boyfriend) was upset, I then found out why. The Gynaecologist had told them that I had not lost my baby and that he thought I was having an ectopic pregnancy, which is very dangerous. Everyone was in a state, I had lots of visitors, it was as if someone had told me my life was about to end. All day I was in agony and all they would give me was paracetamol, which never ever touch the pain caused by Endometriosis & the pain I was felling then was worse than my period pains. That night I cried myself to sleep, because this was Saturday night and even with the severity of what they thought the problem was, they were not going to do anything until Monday (good job I didn’t die (which can happen with ectopic pregnancy) wasn’t it). Sunday morning I woke up at 6 a.m. feeling completely empty. I waddled to the toilet and as I sat down this like a 5-inch package fell into the toilet – I had miscarried whole. I will never ever forget what that little parcel looked like – that had my baby in it. I pulled the alarm and a nurse rushed in and asked her to confirm that that was my baby and she said we will not be able to tell until tomorrow but it could just be Endometriosis tissue – AS IF!! I knew it was not because I felt completely empty. I phoned Nathan to tell him. The next morning they sent me to wait in a waiting room full of very pregnant women waiting for a scan, you can imagine how upsetting this was. I had to have a scan, to be told you have lost your baby.

After this I just went back to using Co-Proxamol for the pain – after all I had lived on these for approx 4 years. I started to get ill again and yet again my GP made me feel like I was pestering him, he would say ‘Oh, you again’ when I walked into his surgery room. I had another appointment for a Laparoscopy and was so ill I wanted them to just take everything away –a hysterectomy (December 1996). But I was too young and they would not do this. My appointment was going to be in 6 months time. Unknown to me my Dad had phoned the hospital telling them how ill I was every day and wanted them to get me in sooner. As well as the normal pain I had been suffering extreme pain that almost made me scream every time I went to the toilet – not passing water. I did get a cancellation appointment for 3 months time. Two days before my operation I had visited my GP again and he called me a hypochondriac, I walked out.

When I saw my Gynaecologist (20^th February 1997) before the operation he was very sarcastic to me in front of my Mum as well, because I had jumped the queue by keep moaning, my Mum could not believe what he was saying but gritted her teeth as he was just about to operate on me. My Mum said I was gone about 3 hours. When I came around from the operation, the gynaecologist came to tell us what had happened, he was kneeling beside my bed apologising because I was in such a state inside and he had not believed me. He had lasered a mass of Endometriosis adhesions and a curtain of adhesions had pulled my bowel up to my liver (even though this was not his area – near the liver). Since this I have been told I have IBS as well as being tired all the time, miserable & upset and feeling totally inadequate as a woman towards my husband (luckily he has been great through all this).

After this I changed GP and did get the necessary forms to complain about my GP but felt to ill & tired to bother, I was just glad to be rid of him.

My new GP is very understanding. I had been ok for 2 years but started to become ill again before my wedding last year. My doctor put me on the pill for 4 months with no break so I could get through my wedding with no hassle, unfortunately on my honeymoon after intercourse I bleed very heavily and was in pain every other day. When I returned home my doctor referred me to my old Gynaecologist and he sent a letter saying Non-Urgent appointment will be in 9 months time. I was disgusted; I didn’t think it was going to come back again. I paid to go private and had scans which do not show Endometriosis, he spoke with my old Gynaecologist and told me I need to have a baby. I refused hormone treatment and am on the pill for 4 months at a time. Unfortunately, this is not working out, as I am still in agony every month, I have had terrible headaches, nose bleeds and have started bleeding after intercourse.

I phoned the Endometriosis Society to ask for a name of a woman Gynaecologist and have been referred to see her in London; this is under the N.H.S and only took a month from referral date to appointment date. I saw this gynaecologist who changed my pill from Dianette to Cilest and booked me in for a scan for 26^th June 2001, a Laparoscopy & laser treatment for 2^nd July 2001. In between this time I had breakthrough bleeding after 1.5 months of being on Cilest, which caused me extreme agony and was absent from work yet again. I had two scans (internal & external) a week before my Laparoscopy & laser treatment, the results of which I was told that my left ovary was enlarged & milky looking. The doctor was expecting to see a large cyst but she didn’t so she thought it could be covered with endometriosis. Obviously this worried me for a week. The results of my Laparoscopy & laser from Monday 2^nd July 2001 was that I had new Endometriosis at the back of my womb and some on the right & left side, which were removed via the laser. The bad news is that my left fallopian tube is damaged as it is stuck to my bowel. This was not removed from the bowel as it would have made a mess. I have been told to stay on the pill continuously and just to break from it if I have breakthrough bleeding. There was nothing abnormal about my left ovary but that is obviously irrelevant now as my tube is damaged. The gynaecologist didn’t seem to bothered as she said ‘your right ovary & tube are fine’. But I suppose this means that maybe that my chances of falling pregnant are halved?

My story is one of many. I hope this helps with the understanding of how important it is for someone to do something about the length of time it takes to be diagnosed and the care you receive after.

Arianna (14/8/01)

Before I begin telling my story, I wanted to say that this is going to be a continuing story. For as long as I continue my battle with this disease that so few know about and understand, I will keep writing about it.

I always remember having extreme pain when I had my periods. I was put on painkillers and the birth control pill and told it was normal for women to have pain during that time of the month. It was normal for me to get so weak from the amount of blood I lost and to be in so much pain I missed 2 days of school every month?! I trusted the doctors and accepted their diagnosis. That was in 1993. Since then I have been on 5 different painkillers and several different types of birth control pills.

On August 14, 2000, I was finally diagnosed, via Laparoscopy, with endometriosis. My mom had read an article in a Reader’s Digest about it and it gave a list of all the symptoms – I had nearly every single one so at my request my family doctor refereed me to an ob/gyn. When I saw the doctor for the follow up appointment, he told me that he couldn’t remove all of the endometriosis. In other words, he wasn’t skilled enough. He said that I had 2 options open to me – Lupron or Danazol and that I was to have my children before I was 30. When I asked him about the possible side effects, he said I’d only suffer from hot flashes. I didn’t trust him on that since I knew every drug had side effects so I spoke to my pharmacist and got a lot of information from her on both treatments.

I decided to try Lupron. My first shot was my last. I had more than just hot flashes. I had hot flashes, nausea, dizziness, anxiety, lactation, and insomnia. I’d cry at the drop of a hat. I was forgetful – I was going out of my mind. My family doctor took me off the treatment as well as told me to stop seeing the ob/gyn. She showed me a letter from him and it said that he told me that I could take Lupron, Danazol, or the birth control pill. Too bad I was already taking BCP and he had never mentioned it to me.

My family doctor then referred me to ob/gyn #2. I saw him for the first time in December. By this time I was searching the net for everything I could find on endo.

The ob/gyn told me that if the pain got worse he’d send me for a Laparoscopy at Women’s College. He put me on a new painkiller – Toradol, 4 times a day (10 mg each time). He wouldn’t answer any of my questions – just gave general answers.

I saw him a second time in January because I was in significantly more pain and the painkillers would only last for 3 hours, if I was lucky. He took me off the Toradol and put me back on Anaprox (550 mg, twice a day). I’d been on Anaprox for over a year already and they no longer eased the pain. When I asked him about doing a Laparoscopy he said no point. He said I could have Lupron, Danazol, stay on the BCP and painkillers or have a hysterectomy. Talk about choices! When I asked about a hyst, he turned around and said that he wouldn’t recommend it at my age.

I had read in a book that a woman with endo has a greater chance of miscarriages and harder pregnancies and that it was also harder for them to conceive. When I asked what my chances of having children were, he said that endo made some women infertile but didn’t harm others. Once again only general answers were given. I left the appointment feeling frustrated, angry, upset and that I hadn’t received the help that I deserved.

I saw my family doctor and right away she said she wasn’t sending me to see another doctor because two was enough and that I had to “grow up an deal with it” and “stop letting it rule my life”. I didn’t go back and see her for well over a month.

The pain continually got worse. On March 12^th, 2001, the pain was so bad it hurt to move. I felt like numerous knives were repeatedly stabbing me and that they were being twisted around. Every time I moved, it felt like my insides were being torn apart.

On March 14^th, 2001, I went back to see ob/gyn #2 to see if he would do a lap on April 3^rd. The pain was so bad that my left leg had begun to hurt as well. If I had had a lap on April 3^rd, it would have messed things up with college, but it might have eased the pain. At that point I just wanted to stop hurting all the time.

The trip was pointless. The ob/gyn informed me that he wasn’t qualified to do a Laparoscopy and he didn’t know how to treat endo. He said all he could do for me was a hysterectomy. He gave me Tylenol III with codeine (pain killer number 7) to take along with the anaprox and said that he’d send a letter along with a referral to the endo specialist I had found in hopes that I’d get an appointment sooner.

I was so mad at my family doctor that it wasn’t funny. I kept thinking, “How could she send me to see someone who can’t even treat endo and knows nothing about it”? All I could do was hope that I got in to see the specialist soon.

When I returned from my appointment, I stayed home from after noon lectures and took a Tylenol III, as ob/gyn #2 had told me to do. It didn’t do much of anything so I took one on top of an anaprox at supper time. By 7:30pm that night, I was seeing double. It did alleviate the pain a bit and I managed to get some sleep.

The next day I went to college with no pain killers and was in a lot of pain. I took a Tylenol III and an anaprox at supper and went to bed. I ended up feeling nausea, my head was hurting and I was seeing double. I slept for about 3 hours then was awake crying from the pain.

I called the endo specialist’s office on March 16^th, 2001 and his secretary said that they hadn’t received anything from the ob/gyn but that she’d set aside May 15^th for me and put me on the cancellation list. She also told me that no doctor would recommend taking the Tylenol III and anaprox at the same time and to go to emergency if things got worse.

I left a message with the ob/gyns office to send the stuff and they called later on to say it’d been sent. My mom called the specialists and made my appointment for May 15^th at 10am. I was really worried about not being able to have kids and having to have organs removed if necessary.

On May 15^th, 2001, I saw my new endo specialist. Once again I was very let down. He didn’t treat me like an individual; he treated me like all of his other patients. I don’t believe that this is a fair way to be treated, as endo doesn’t effect each person in the same way. He said that he would do a Laparoscopy on August 22^nd because there is still endo on my ureter, bladder, left ovary and possibly my bowel. The specialist prescribed a Macrobiotic diet for me to follow, which with my other health issues is too risky. He also told me to stop taking my birth control pill for 3 months so that the endo is more visible during the Laparoscopy. Of course, he neglected to tell me what would happen when I stopped taking the pill.

When it came time for me to start a new package of pills, I didn’t and since then have suffered from severe headaches, more pain than normal, and lactation. I expected the pain, my cycle to be messed up and heavy periods – but lactate for over 8 weeks?! This wasn’t something I expected.

I’ve had constant back pain that has made it almost impossible for me to sleep. The pain has travelled down my left leg, which makes it very difficult to walk, and I can’t wait for my surgery to happen.

Without my supportive boyfriend, and my wonder friends at www.endo.org.uk, I would be lost. I would be going crazy from this disease and not trying to get by day by day. I’ve managed to work almost full, 35 hour weeks this summer, which for me has been a struggle. Even when I’m in pain, I’ve gone to work and done the best I could do. I have also started trying to find other women in my area who suffer from endo so that we can start a support group. I’ve written a letter to my MP, which will be sent on August 11^th, so hopefully that will help in raising awareness.

For now I am done with my story. I will update it as often as I can. As I said at the beginning, as long as I struggle with endo, my story will be told.

In 1994 I had a Laparoscopy, following very painful periods and doctors not being able to find a solution. The found 'scarred tissue' on my ovaries, but said there was no trace of Endo back then. However, shortly after coming round from the anaesthetic, my lung collapsed which resulted in me having a chest drain and spending the next two days on oxygen to help me breath, followed by another 5 days in hospital until they were sure my lung was OK. All this after such a minor op. I asked the surgeon what had gone wrong and he said he thought it may have been an escaped pocket of air which had caused the lung to collapse. They wanted me back in for another lap to remove the scarred tissue as soon as possible, but after my terrifying experience I said I would live with the pain for a bit longer. It was another 5 years before I went back to see my GP to say enough was enough. I explained my symptoms, painful periods, pain when having sex and he suspected endo. I told him how anxious I was at the thought of having another lap and he said he would ensure they did the procedure under local anaesthetic. On 2nd July I received an appt for admittance onto the day ward. Worked myself into a total frenzy thinking my lung was going to collapse again. Saw the consultant who was going to carry out the op who told me to get my gown on as I would be going down for the op after the anaesthetist had been round. By this point, I had no nails!! The anaesthetist came to see me and asked if there was any problems he should know about, I told him what had happened last time and the immediately refused to operate on me as a day patient, saying I needed to be monitored closely. WHY HADN'T ANYONE READ MY FILE. I was sent home and had to wait another 6 weeks to be admitted again. This time they were very cautious with me. The lap was completed and they told me Endo had been found but it was 'set like concrete' and they couldn't do anything to laser it off. I now have to wait 3 months to see my gynae, at which point they will refer me to another specialist. Does anyone know if this will mean I will have to have open surgery to remove the endo. I am also worried I have it on my bowels as it hurts like mad when I have a 'No.2' It's a shooting pain going straight up my back. I'm only 30 and up until now have always had the attitude that I'll have kids when I'm ready. But it almost seems like that choice has been taken away. My gynae told me I should be thinking about it sooner rather than later, but I want to have them when I want them, not just because somebody has put a time limit on it for me. My best friend had just been diagnosed with inoperable liver cancer and told he has a max of two years to live, and that's with heavy chemo, it tends to put things into perspective for you. I'm sure this disease is hereditary, my mum had a hysterectomy about 18 years ago, that we due to fybroids. My sister had Endo diagnosed 5 years ago, and since then had 4 miscarriages. She has regular laser treatment to get rid of the Endo and at 32 has been told her time is also running out to have children. I have been very tearful over the past few days as there are so many things buzzing around in my head. Every time I think of something I'm writing it down so that I can remember to ask the specialist when I eventually get my appointment. They have not given me anything for the pain, but have asked me to keep a record of the pain, when it comes and how bad it is in a scale of 1-5. My gynae has suggested staying on the pill for three months at a time and having one month break. My GP did touch on the point as to whether my Endo had anything to do with my lung collapsing, as it is found in the lungs. Food for thought. I am kicking myself, as I keep saying if only I'd have had the scarred tissue removed back in 1994, the Endo may not have got so bad, but life is full of What If's. There is so much information on Endo now, with this website and various chatrooms, nobody should feel isolated.