Discussions By Condition: Medical Stories

walking medical mystery begging for help...

Posted In: Medical Stories 4 Replies
  • Posted By: Anonymous
  • December 15, 2006
  • 00:23 AM

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.

Reply Flag this Discussion

4 Replies:

  • It's time to educate yourself! Start with reading Dr. John Lee's books and I believe you can start with finding his info on the net. You can have low estrogen but yet be estrogen dominent. Meaning even though your estrogen is low it is still higher than the amount of progesterone you are producing. I can't emphasize enough educating yourself on your body. Dr. Lee's research and study in this field has really helped me get my reproductive health under control.
    Anonymous 42789 Replies
    • December 15, 2006
    • 05:27 PM
    • 0
    Flag this Response
  • Did you have the cysts removed? if you have endometriosis then that is very painful and it will probably keep you from getting pregnant anyway ,maybe you should ask a gynecologist to give you a d&c ,that may help if it doesn't then I would seriously think about a hysterectomy to get some relief.I am 55 years old but I remember going through lots of those things and for my irregular periods and pain I did get a d&c and it helped me good luck
    Anonymous 42789 Replies
    • December 28, 2006
    • 01:23 AM
    • 0
    Flag this Response
  • "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." Everything sounds all very confusing to me and from what you've said there I cant work out if you are ovulating or not or even if you know if you are or not yourself, kind of sounds as if your doctors dont even all know. (Im no doctor or medical person but have had some training for natural birth control methods so maybe something I know from this can help you to work things out just a little more). If you are not ovulating (releasing eggs), I cant see how pregnancy would be possible. Firstly by an ultrasound.. it would be possible to see if you have an egg ripening for release at certain stages in your cycle but you also probably could work this out yourself by the following. Ones natural body temperature is a fraction lower early in our cycles but at ovulation it raises slightly and then stays that way until menstration. The temperature change is a sign that one ovulated (released an egg..hence is fertile). (You would need an ovulation thermometer and take your temp. daily, first thing in the morning, every morning before you get out of bed preferably vaginally to see this happening. One can see this going on if one charts the results daily.... that is if you have eggs and are ovulating somewhere in your cycles you should end up seeing it via your morning temp. recordings. Fertile females ovulate once (or twice closely if twins) in their cycles whether that is a long delayed cycle or a short one). If you are very irregular with your cycles .. knowing when you ovulate can help one plan to have sex when ovulation takes place..hence making pregnancy much more likely. You should be able to tell too if no ovulation at all is taking place. (seach "Natural Family Planning methods for more info). It was throu learning about my own cycle and charting my body temperatures and fertility cycle, that my own hormonal problems (which before hand I never even had an idea I even had) came to light. I then was able to seek out a doctor telling him I had a certain problem going on, was then refered onto a gyno who blood tested my hormones and had an ultrasound done and hence then was diagnosed (for what I already knew I had).
    taniaaust1 2267 Replies
    • December 28, 2006
    • 06:02 AM
    • 0
    Flag this Response
  • Do you still live in NY? Wherever you are now living I highly suggest you go to an acupuncturist who is also a certified Chinese Herbalist. This can help you with the pain of endometriosis as well as balancing your hormone levels. I have successfully treated endometriosis with acupuncture and herbs, but it may take some time for relief. To find an acupuncturist near you go to www.acufinder.com and type in your zip code. Try to find someone who can give you herbs as this will make the acupuncture treatments much more successful. I find that when Western medicine doesn't offer a good treatment choice, or when there is not a clear diagnosis...acupuncture is perfect for this as we use a different set of criteria to form a diagnosis.Hope this helps. :) Doctor of Oriental Medicine
    acuann 3080 Replies
    • December 29, 2006
    • 05:08 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.