This might be long because it spans a 4 and a half year period. I have seen 4 different gynocologists and an onclogist and yet no one can tell me what is going on. I can't stand living with the pain any longer, it really is driving me crazy. I was diagnosed with endometriosis through a laporoscopy in March of 2002. Less than 1 year later, the same gynocologist, Dr. C in Austin, told me that I had the FSH and LH levels of a post-menopausal woman, even higher than a post-menopausal woman. She and I discussed that this was very odd since menopause indicates I am not producing any estrogen and endometriosis indicates that I am over producing estrogen or at least producing enough to have flushed lining that is being misplaced. We talked about how my Grandmother took DES while she was pregnant with my mother and in turn my mother had a stroke for the same reason I was diagnosed with an AVM and had it resected in 9/01. Dr. C. then referred me to an oncologist in the event that the DES is causing all of these crazy readings and goings on and because she did not know how to screen for cancer. The oncologist took a look at me, refused to do any tests and sent me away saying that I was too young to have cancer and it was silly of me to even think what I have could be cancer. Fine. Moving on. :o) I went on the pill to regulate things and at least give my body some sort of routine and try to prevent the genetic osteoporsis my grandmother had. I moved to NY and got off of my pill as I was trying to get pregnant and hoping that the blood levels regulated themselves from the pill, besides with my history, the pill is a no-no. But, as it turned out, my blood levels had not regulated themselves as my new general practicioner, Dr. M., soon found out. I went to another gynocologist who took one look at me, and took a slide of the grey leakage from my breasts and said that I had an autoimmune disease, which one he isn't sure, and the only way to fix it is to give me a hysterectomy. Mind you, I was 27 when I was first given the menopausal hormone levels news in Austin by Dr. c, in early 2003. As this new doctor, Dr. R, was talking about hysterectomy and I was looking at my 29 year old self in the mirror, the two did not jive well. He did another laporoscopy because I was still in severe pain. He found more chocolate cysts even though I've been having these post-menopausal hormone levels. I moved on to a new doctor, Dr. K, supposedly the best in the area. He ended up telling me that the reason my levels were they way the were was because of the brain surgery. Even though my right temporal lobe was operated on and is nowhere near my pituitary gland, he still believed that there was pressure on my pituitary, or something. Then he dropped me as a patient, real quick like. Still going on. Now I have a new doctor. He took one look at my paper work, and without even testing me or looking at my insides determined that I am "out of eggs." Period. end of story. However, I find it odd that weeks later he asked me if I was trying to get pregnant and if not he wanted to start me on the pill. I am totally confused and frustrated. So I turn to anyone out there who might have some idea. From the hormone levels being post-menopausal and the endometriosis that seems to continue, the constant pain and the irregular periods and constant fatigue, what could be going on here? How can I have chocolate cysts that indicate endometriosis if I have hormone levels that say I am not producing estrogen? What tests do I need to be asking for to delve further into this and find out what is really going on? Did I mention that I was diagnosed even before all of this with that HPV virus that is going around? That was nearly 10 years ago and it keeps coming back. I did have that cryo surgery done in '98 or '99. I've had a colposcopy and that came back okay. I did have a benign tumor or growth that Dr. R found when he did the second laporoscopy, the NY gyno who wanted to give me a hysterectomy. I feel confused, in pain, lost...I do want to have kids, I'm okay with the option of adoption, but at the very least I'd like to not feel confused or like crap every day.
thank you to anyone who might have read this.