# Endometriosis Petition



## AIRPLANE (Mar 15, 2004)

I received this petition the other day. I think that it is worth supporting. Many women who actually have endometriosis and other hormone-related issues end up being diagnosed as only having IBS. The average gynecologist is not properly trained to diagnose and treat it, and many of the current treatment options do not give adequate or long-lasting relief of endo symptoms, and can have very negative side effects, such as permanent osteoporosis. Even if you have had surgery and were told that you didn't have endometriosis, you may in fact actually have it. There need to be gynecologists who specialize in endometriosis who also know how to do laparoscopic excision surgery- not just burn it off which usually gives very short-term relief. Just burning it off is like mowing the grass and leaving the roots. They should also have good skills for removing the adhesions that come with endo, which are often the reason that many patients have symptoms all month, but get worse around the time of their periods.

I am 57 now and had an exploratory laparoscopy back in 1990, a myomectomy the next year, and a hysterectomy with ovarian sparing in 1998. I still have symptoms and a lot of bad adhesions from the condition as well as misdirected surgeries. I have learned that the average gynecologist does not always recognize the many appearances of endometriosis, nor are they trained to work in all areas of the abdomen and pelvis. I also have a sister who wasn't diagnosed with it until she had an ectopic pregnancy- before that, all of the emphasis was on fibroids, as in my case. Endometriosis can run in families, and some endometriosis experts also suspect endo in patients who have fibroids, which makes sense to me.

I know that I have had abdominal and pelvic issues ever since my first period at age 11. I am convinced that I have been misdiagnosed all of these years. I doubt that at this point that any gynecologist would bother to consider it since I don't have a uterus and was never diagnosed with any of my surgeries. Once you have a hysterectomy, many gynecologists interestingly lose interest in having you as a patient.I don't think that the surgeons who did the myomectomy and hysterectomy really bothered to look, and I know that there was never any mention of a biopsy being done, which I read is usually part of the diagnostic work-up when doing surgery.

I also think that the heavy, non-stop periods that I had prior to my hysterectomy were more likely due to adenomyosis than just fibroids. Unfortunately, I was not aware of adenomyosis (or adhesions) when I had my surgeries.

If you or someone you know has been diagnosed with any of these conditions, or strongly suspect that you or they have them, please add your signature to this petition. The more signatures, the better!

http://www.petition2congress.com/20124/endometriosis-devastating-disease-still-being-left-out-current-he/?src=widget


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