ENDO Messages for February, 2004: Re: young woman with mysterious pelvic pain

Re: young woman with mysterious pelvic pain

From: anonymous@obgyn.net
Fri Feb 27 16:44:06 2004

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Your symptoms really sound like endo to me and I can't believe an ob-gyn wouldn't see that immediately. Well, I guess I can't say that either. I was misdiagnosed for a long time too.

We sound similar. I'm thin, regular like clock work. Never been a really heavy bleeder even at my most painful times. Can't take the pill or use IUDs either. I've been pregnant twice by accident (both ending in abortion) because BC pills make me throw up. (After reading about artificial hormones, I'm almost glad b/c I don't think they are healthy at all.) Yet, I've had surgery for endo twice and I think I'm probably going to have to have the 3rd pretty soon.

Fertility doesn't automatically rule out endometriosis. Some women have endo are non-fertile only because the endo is blocking their tubes etc. I've read that some women with endo lose the pregnancy after a few months too. I would think this might have something to do with high estrogen--relative to progesterone levels that women with endo have. Progesterone is supposed to increase VERY DRAMATICALLY over the 9 months that you are pregnant (one reason that endo generally goes away during pregnancy). I imagine the high estrogen could cause a miscarriage.

I was at the point where you are now about 7 years ago. I had had my 2nd surgery 4 years before and I was in so much pain that no painkillers were even touching the pain. They were just turning me a zombie.

One thing that helped me tremendously when I was at the "losing my mind" point, was getting off of cow milk products. Sounds unbelievable, but I cannot emphasize how much better I felt in just one month. I went from being in the fetal position every 4 weeks feeling like someone was trying dig out my uterus with a rusty spoon, accompanied by SPLITTING headaches and backaches to having MILD cramps and only needing Advil. It obviously hasn't gotten rid of the endo completely since I can feel it returning but I think I slowed it down enough that I got another 7 years of a decent, almost pain-free life. At least I wasn't miserable all the time like I was before. And I'm still not at the point I was 7 years ago. I think that's pretty darn good results where this nightmare disease is concerned!

Also remember Progestin and Progesterone are 2 very different things even though, shockingly enough, your doctor may not even know it and use the terms interchangably (and so are the estrogens you get in bc pills vs. natural estrogens). One is an artifical hormone that your body may not recognize as the correct hormone because it's been changed so drastically by the drug manufacturer. The other is the hormone your body actually makes and recognizes. I read that changing one piece of DNA in estrogen could change it to testosterone, yet drug manufacturers change entire chains of DNA in progesterone so that they can patent it (can't patent natural substances) Is it any wonder our bodies are going bonkers on this stuff???

Again read Dr. John Lee's books. They are very helpful.

Also, I just read about a new drug they were having good luck with for endo suffers. I believe I saw the article online at Web MD just a few days ago. Not that I really want to use another drug, (I'd rather have the surgery than try the stuff they push on us now) but this one didn't sound as horrible as the drugs that doctors want to give us now. It made more sense than the hormones they are prescribing. I'm sorry I don't remember the name off hand.

At Fri, 27 Feb 2004, Julia wrote: >
>I've been sufferring from severe menstrual cramps since the age of 16 (3
>years after I started menstruating). I am now almost 23. The pain has
>gradually intensified over the years, and also gone from lasting only a
>day to 2-3 days. In fact the pain is so bad now that I take several
>vicodin a day on my period or I am literally unable to function. NOTHING
>else works at all other than opiate painkillers which I detest as they
>make me really sleepy and nauseous.
>
>My periods are extremely regular, every 28 days, and although I am quite
>small (110 lbs, 5"5') and have suffered from occasional anorexia, I have
>never missed a period. I would say the blood flow is moderate -- not
>light, but generally not extremely heavy, though it has become heavier
>in the past couple of years.
>
>I have tried all NSAIds (ibuprofen, naprosen etc) and several types of
>hormonal birth control. The former do nothing to help me at all. The
>latter don't either, and some pills have made my cramps worse, and/or
>made me have cramping at times other than when I was menstruating. They
>do make my periods lighter, but again no relief of the cramping.
>Normally I do not have any pain during the rest of my cycle, except
>about half the time during ovulation. I never bleed at other times in
>my cycle.
>
>I am not currently able to take any type of hormones, as I am very
>sensitive to most progestins, which cause me to have continuous month
>long mild cramping and intensified menstrual cramps, and/or I become a
>psychotic bitch (to the point of dysfunction). Also, the last time I
>took the combined pill, the estrogen caused me to have daily severe
>migraines, so apparently I am at risk for a stroke and should not take
>estrogen.
>
>In addition to all this, I am EXTREMELY fertile...I have gotten pregnant
>5 times using condoms religiously, though I have never had one break! I
>have had 4 abortions as a result, very traumatic for me. Currently my
>fiance and I are abstinent simply because we have no other options. I
>am allergic to spermicide and my uterus is too small for an IUD.
>
>The fertility seems to rule out endometriosis, but someone suggested to
>me that I might have adenomyosis. I've been to a gazillion ob-gyn's and
>none have any clue what is wrong with me.
>
>Any thoughts on what my problem is?

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