Coalition of Post Tubal Women. The Campaign to Inform.

The "Campaign to Inform" is to educated, inform, and ban together post tubal women in order to demand that changes are made reguarding informed consent for propestive consumers of tubal ligations as well as better follow up health care for "Post Tubal Women". It's time the truth is told regarding the known health risks, short term and long term, of tubal ligations. The following presentation was made to Will County NOW on Oct 21, 1998. The Issue is a NOW issue and has gained NOWs support.

My name is Susan. Just a little more than three years ago I had a tubal ligation. This surgery was suggested to me by my doctor for the propose of permanent birth control. Over the course of less than three years he bought the subject up and suggested this surgery to me on at least 3 occasions. I based my decision to have this unnecessary elective surgery based on the statements and information that he gave me in January of 95'. He told me that insurance would pay for it and that everything, including my health, would remain the same. He told me that the only thing that would change and be different is that I wouldn't get pregnant anymore, and that my life would be enhanced by this simple surgery.

He said that I should have this surgery if I was done creating my family, and that I shouldn't be on the pill at my age, and to call his office when I was ready to schedule the surgery.

In the fall of 95', just like thousands of other women that year, I underwent this elective surgery, and just like the millions of women before me, and it this still continues today, I was never informed that tubal surgeries were and are known to cause anatomical, physical, and hormonal changes in women. These changes are caused, as I now understand, because blood flow is compromised to the ovaries and other reproductive organs.

It is the nature of the surgery.

Going back 30+ years, many studies have been done about the changes that happen after a tubal. Some studies have been published and made available in abbreviated forms to the public on the internet. The majority of these studies prove that negative side effects do happen, including hormonal changes. Other studies proving negative side effects have not been made public and, in a sense, have been hidden away.

The symptoms of the physical and hormonal changes that are most notice by post tubal women are by changes in their periods and increased PMS. This condition has been referred to by post tubal women and by the medical community as post tubal syndrome or PTS. Even though scientific research has proved time and time again that physical and hormonal changes can and do happen, the gynecological community early on refused, and still refuses today to acknowledge these findings. They have taken the stance that PTS or castration is not real, is not possible, and has been disproven. This is not true.

This being the case, regarding informed consent the standard was and still is to NOT tell women that they may experience negative physical and hormonal changes as a side effect of the tubal surgery.

I feel it's important to point out that tubal ligations are not life saving. Tubal ligations are surgeries that are marketed and add income to a doctors practice. They have a motive not to inform.

If and when side effects are disclosed to women before this surgery they are downplayed and not completely explained. For example, women are told that they might have a slight increase in their periods after the surgery, but are not told the cause of why this happens or how server this increase can be.

These slightly heavier periods can become so extreme that women have described the periods as gushing and flooding. In some cases the bleeding is so heavily that some women have developed anemic conditions. Passing clots, sometime as large as golf balls has been reported. In most cases this heavy bleeding could be atributed to having lost one ovary due to the tubal surgery! These findings are not told to the women when she undergoes a hystomectory a few years later.

On the other hand women are told about benefits that could happen form the tubal such as lowering their risk of ovarian cancer, but again they are not told why, which is because they'd be at higher risk for needing to have a hystomectory and that at that time her ovaries would be also removed. No ovaries, no ovarian cancer!

Today, in 1998, doctors and information booklets still erroneously state that tubal ligation surgeries carries no known long term risks. Women are lead to believe that if something very bad were to happen during the surgery that the woman would know about it right away or within days after the surgery. They claim that tubal ligations are perfectly safe, have no negative side effects, and will not cause menopause to instantly happen or to happen earlier.

Medical research HAS linked these side effects to tubals, and those researchers have cried out for further studies to be done.

Doctors have acted unethically and with harmful intent by dismissing these medical studies, by ignoring the scientific research, and by intentionally with holding this very important information from prospective consumers of tubal surgeries. They then continue to with hold this information when women return with problems. This non information and non treatment is done in effort to not expose themselves.

Woman presenting them selves to the ob community with hormonally related symptoms and problems after a tubal are routinely told that they are too young to be menopausal, that their condition is not hormonal. Post Tubal women are rarely tested then properly treated for hormonal imbalances.

With out proper testing and treatment women are at the mercy of the doctors who are in reality committing assault and battery if it is found that these women do have an imbalance.

Post Tubal women are intentionally not suggested hormone tests even though it should be the first thing done. In turn, if a post tubal woman requests that these "standard" tests be ordered it is not uncommon for doctors to meet the suggestion with disallowance.

Some doctors have been known to flat out refuse to order hormone testing even though the woman presents herself with obvious hormonal symptoms which merits testing.

These tests are "standardly" done all the time, at a drop of a hat, for non-tubal women, and repeated 2 or 3 times to be accurate. Post tubal women are told feeble reasons why these tests shouldn't be ordered. Some excuses given are that the tests very are expensive, they are not necessary, that they will not show, or will never show anything, that the hormone tests will not help in diagnosing their condition, that their condition related to stress, that they are too young to be menopausal, .... and the list goes on.

On the other hand, post tubal women are suggested (and many undergo) radical procedures such as D&C's and Hystomectories as treatment for extreme periods. Both of these solutions, a d&c and a Hyst, will stop the woman from having the extreme periods which is a symptom, but will do nothing for the cause of their symptoms which is hormonal.

If blood tests are ordered for post tubal women, the obgyn community has self-governed that the test should be the TSH and ONLY this one test. This test will only check the function of her thyroid, but will not tell if she's experiencing an ovarian related hormonal problem.

I'm not saying that thyroid levels shouldn't be checked, but it's not the only test available. By its self it is the wrong test to give a post tubal women presenting with a hormonal imbalance to diagnose her condition. This test will not show a post tubal women, or any woman if her ovaries have diminished or lost function.

Ordering only this one test is one way that doctors can cover up the tubal issue and to "pull the wool".

Post Tubal women are commonly told that this test, and only this test must be ordered before any other testing is can be ordered. This is not true. The doctor can order what ever tests he/she thinks is necessary. When checking levels many different levels need to be looked at, not just one.

When this test comes back the doctors then mislead the woman that there is no need for further testing.

If this thyroid test comes back normal the doctors tells the woman that there is no need for further testing because this one test came back normal.

In rare cases if the test comes back abnormal she would then start thyroid medication and would be told that this condition is entirely what her problem is.

Either way the test comes back the doctor has an excuse for not ordering further hormone tests.

Doctors know that this test will not show ovarian function but that other tests do. Still, doctors don't suggest hormone testing but do offer treatment to their condition by suggesting surgeries such as hystomecoties, D&C's or by prescribing the pill.

Many post tubal women have been prescribed the pill and many post tubal women have posed the question, If i had a tubal then why am i on the pill.

These women are told that their conditions are NOT hormonal, and that the reason for these heavy periods are unknown, but that she needs the pill (and only the pill) to help regulate her extreme bleeding. She is told that if she doesn't take the pill her bleeding will likely continue on uncontrolled (many women who experience these extreme periods do become anemic) and that of course her only other options are a D&C, or a Hystomectory.

Unlike HRT, hormone levles are usually not checked before prescribing birth control pills. Since hormone levels are not checked, the treatment and action of prescribing the birth control pills, not giving the women other hormone options, along with telling the woman that her problems are not hormonal is in error and a cover up.

Still, these women are under major duress with their health, and because these extreme periods are so bad many women do accept this hormonal course of action not realizing that the pill is being prescribed to them not only in an attempt to "regulate" their periods but as a form of estrogen RT. In truth, its probably not a bad idea for a young women, if she has an estrogen deficiency, to be taking estrogen, and HRT is know to control bleeding. She may need estrogen or progesterone or both. Without hormone testing the doctor is only guessing about her condition and that she may need hormones. The pill however is not the only, and probably the least safest course of treatment for a young women who will need long term or life time hormonal therapy.

Doctors withhold this information, and post tubal women are not given other HRT choices other than the pill.

Reason doctors don't suggest other forms of HRT is because then it sounds hormonal. Just saying the words "hormone replacement therapy" would make any young woman think of menopause and hormonal conditions. The words HRT sound scary and it would be in a way admitting to the woman that she has a hormonal imbalance which might merit testing.

Also, many post tubal women have been on the pill at some time of their life before their tubal so it's not something new to them, and it doesn't sound as serious as HRT sounds.

The fact is, this whole issue is very serious.

Another way the pill covers for the doctor is the pill is one type of hormone treatment that will cause a woman (if she still has her uterus) to continue to have monthly periods, and she will continue to have monthly periods for as long as she's on the pill even if she goes into complete ovarian failure or menopause. If she continues to have periods she will never know she if she is menopausal until some time after she stops the pill.

Other safer types of HRT, may not cause a woman to have a monthly periods, but again if she were prescribed "appropriate" and "safer" HRT she might question her hormonal status.

Post tubal women are commonly put on the pill all the time with out being offered hormone tests and told that they should remain on the pill until they are 40, and with out being offered safer types of HRT. Doctors know that the birth control pill should not be used as HRT.

The birth control pill was designed for women with normal hormone levels for the propose of birth control, not for peri-meno or post meno women for the propose of HRT. The pill should not be given to women long term as HRT and is considered very unsafe to do so. Birth control pills have much higher amounts of estrogen then traditional HRT. Using the pill as HRT puts women at higher risk for stroke, cancer, and other problems.

Being on the pill can cause a women's condition to worsen, which would make her more susceptible to the suggestion of a D&C or Hyst. Many women go on the pill and then quit it because their condition become worse.

So now at the other end of the scale, IF she is experiencing an estrogen deficiency, isn't offered hormone testing, is never offered the pill or other type of HRT, or is prescribed the pill but she refuses to take it or stops taking it,... these women can be at risk for bone loss. The amount of bone loss can vary to how server the estrogen deficiency is or to how well her ovaries survive the surgery. In my case the bone loss was massive.

In extreme cases, the blood flow can be so overly compromised that the ovaries shut down. The result is the same as removing the ovaries, or female castration. This is what happened to me.

You can see from the photo's, and by the video I'll be showing in a minuet, the drastic change in my ovaries over a 3 year period. My tubal surgery caused me to become surgically menopausal

My periods didn't become heavy, which is the more common pattern, mine quickly slowed then stopped. Still, this took some time to see the pattern that something wasn't right.

I returned to the doctor 8 months after my tubal complaining of a drastic change and was told that this was normal and nothing to worry about, and might be due to stress. I told the doctor that I wasn't under stress . He told me that after a tubal periods can change. Some get heavier, some get lighter, some stay the same. He told me I was one of the lucky ones because mine got lighter. I had complete trust in this doctor and I believed him. I left his office feeling pretty good about myself because I was lucky. I was still feeling good about my decision about having gone through with the tubal and went on with my personal business.

With in the next year I experienced many problems and visited or contacted not only the tubal doctor but my family doctor as well many times. Some health changes I had experienced include a change in my periods, a prolapsed uterus, loss of libedo, drying skin, and more... and was told that these things were not hormonal and that there was nothing to worry about.

About two years after the tubal I was back in his office complaining of still missing periods when I became angry and irate at his comment that he didn't believe me that i was missing all these periods and suggested that I wasn't keeping track of my calendar correctly. I told him that I'm very careful to keep track, and always had kept track of my periods. That's when he then suggested that he run a blood test to "check my levels".

I wondered why he hadn't offered this before, but felt pretty good that he was going to " do " something about it. I asked him what would be done if this test came back normal and I still didn't get my period and he said that then he'd order a progesterone in oil shot to bring on a period, but not to worry that he was sure the test would come back fine. A thyroid test was ordered and I had the blood drawn that day. A few days later I received a call that my test came back normal and that nothing was wrong and that I was perfectly healthy.

By then I was experiencing almost every symptom on this list, including fuzzy logic, loss of memory, loss of balance, incogentlnce, and though I must be developing altimzers. I was beginning to become afraid to drive for my forgetfulness. I was experiencing what I know now was to be hormone shock. I was very sick and very scared.

Another month went by and I called his office an spoke with a nurse. I told her that I was physically sick, and hadn't had my period in some time and wanted to come in for a progesterone oil shot, which the doctor had suggested. I told the nurse that the doctor had just tested me for meno but the test came back normal so I wasn't meno and couldn't understand why I wasn't getting my period. She asked my what tests he ran and I told her and she said that those wasn't the test for menopause, that other tests should be ran.

Needless to say I had some questions for the doctor when I saw him. Yet, I was in hormone shock and not thinking entirely clearly.

I asked him why he didn't order the other tests that would show meno. He told me they were very expensive, didn't think that this was my problem. He went on to tell me that insurance wouldn't pay for them if he didn't run the this test first and since this test came back o.k. these other tests were not necessary and the insurance company would question the reasoning behind ordering them and probably wouldn't pay. He told me that it was standard to give women who miss more than three periods a progesterone in oil shot, which I was claiming was my case.

I asked him to order the correct tests and he said he would only if the progesterone in oil shot didn't work to bring on a period. He persuaded me to have the progesterone in oil shot still telling me that nothing was wrong.

I asked him what would happen next if I didn't get a period and he said then he would order the "expensive tests" but not to worry, that the shot worked for everyone, and that I'd be getting my period soon and that I should not worry.

After another month with no period I called his office and demanded the proper tests. He couldn't say no at that point and had no choice but to order the tests.

The results of the test came back that I was defiantly post menopausal, no questions about it. My levels were extremely elevated. My FSH was almost 92 and my LH 27.

So now the doctor had the opportunity to prescribe me HRT, and even though i was in a known state of menopause, the doctor stayed true to the post tubal rule and prescribed me the birth control pills, telling me I'd be on them for the rest of my life, and was not given any other choices or information about other more appropriate forms of HRT.

Upon realizing what menopause means as far as bone loss i requested from my family doctor besides a referral to a new obgyn, that a bone scan done. Although I don't have a base line to go by because I never had one done before the tubal, it is believed that I have suffered massive bone loss in those two years. My hip is very bad, -1.25 which is call osteompoina which means borderline ost.

Looking back on all of this I realize that if I had gotten a period form the progesterone in oil shot that he would have further delayed ordering these hormone tests for me, and who knows what state or condition I'd be in now. That shot was just another cover up.

I need to explain these before and after pictures. (see documented case-photos) The before picture was given to me in August of 95, on the day of my 1st surgery, by the doctor who performed my tubal. I don't know why he gave me this photo of my ovaries but he did, and I saved it. In July of 98', I had a 2nd lap surgery, with another surgeon. My propose of this 2nd surgery was to document what had happened during the first surgery. This in its self is another story and will not go into this at this time. After this surgery I was presented with two photos, and a video tape was made. I'd like to play the tape now because it shows much more detail than the still photos. (tape will soon be posted)

This tape shows cleary that the mesovarian area was destroyed and the whole area is gone.

A few results of my tubal and by becoming surgical menopausal is now my life span will be shorter, I will have to be on HRT for the rest of my life in order to physically and mentally function. My quality of life has taken a drastic change. It hasn't been easy and I am coping with what happened to me the best I can.

I am moving forward with my life and have dedicate part of it to informing women about these possible and known risks of tubal ligations in hopes that what happened to me doesn't happen to anyone else. I started a post tubal mailing list and been in contact with many post tubal women. We are seeing a repeated pattern of abuses and misconduct regarding post tubal women's treatment.

Clinics and doctors are not informing woman about theses hormonal risks when suggesting and presenting information about side effect to tubals and other types of "elective" pelvic surgeries.

It is clearly shown by what we are told and informed of before these surgeries, and by the pattern of actions of how we are treated when we return with problems.

They sway from the standard of care with intentional fraud and misrepresentations in order to not expose themselves to the hormonal holocaust they have imposed.

With this tubal issue, the obgyn community has fallen into a state that goes beyond malpractice and into the realm of assault and battery, fraud and deception.

This tight net community does not appear to be able to govern themselves to change the course they are heading. Just as with the DES issue, the obgyn community will not stop the pattern until it is required or ordered by some higher power for them to change.

We, as Post Tubal Women, for our unsterilized sisters, for our daughers, and for their daughters, DEMAND that changes are made NOW as to what and how women are informed of BEFORE electing to undergo a tubal ligation thus becoming permently physically altered. Changes with informed consent and information for post tubal women need to be made through out the whole medical community which needs to admit to having known about "Post Tubal Syndrome" and to NOW publicly reconize PTS. Lastly, changes need to be made with how Post Tubal Women are currently being treated by the medical community.

Post Tubal Coalition of Women

Susan J. Bucher
P.O. Box 786
Lockport, IL 60441
United States

Public "Tubal" Message Board: Post a comment or ask a question. Coalition for Post Tubal Women