Re: Other endo patients experiencing a variety of seemingly unrelated health problems?
From: Amy (anonymous@obgyn.net)
Thu Aug 12 07:29:39 2004
Sorry to hear you are having such a tough time! I have read that some
women experience similar issues that seem to be related to Lupron. I
seem to get dizzier more than usual and have some joint pain that I
think may be from Lupron. I just started it again though because for me
it really works well and provides pain relief for a year or better. My
next step will be total hysto like you.
There is also some thinking that women may develop endo due to an immune
deficiency. I tend to get lots of sinus and ear infections and have bad
allergy problems that I never had before. They got really bad about the
time I was diagnosed with endo. Also used to get lots of strep throat
that finally resulted in having my tonsils out at age 28. I have always
been suspectible to colds, flu, etc. and I really think it is somehow
related to having endo. I'm sure that being a DES baby probably makes
it much worse too.
Hang in there! I hope you get to feeling better. We are here for you on
the forum.
Hugs!
Amy
At Wed, 11 Aug 2004, Ann wrote:
>
>I have a long history with lower right quadrant pelvic pain. After
>years of suffering, I was finally diagnosed with endo. Went through 1
>surgery, then a course of Lupron, then gave in to total hysterectomy.
>Here's my question to any other endo sufferers out there...
>
>I'm a DES baby
>I've always been highly sensitive to chemicals (i.e. if someone is
>wearing too much perfume/calogne, it can cause an immediate
>physiological reaction including migraine headache, sudden diareah,
>nausia/vomiting, racing heart; I started taking the birth control pill
>at 16 and have had horrible side effects with a variety of them)
>I have allergies
>My pain level was cut to almost zero after the first surgery (which was
>to remove endo tissue only), but the pain started to come back after
>about 6 weeks
>I took Lupron for 7 months and began to develop limb numbness (which has
>steadily gotten worse to the point that now the docs think I have MS,
>lupus, or some other autoimmune disease)
>I had the second surgery because Lupron did little, if nothing, for my
>pain
>My pain is now managable without pain meds, and I've started
>bioidentical hormone replacement therapy, but I'm still having lots of
>health problems (the limb numbness, sometimes out-of-control vertigo and
>dizziness, extreme fatigue, hormone levels after more than 3 months of
>therapy have not come near "normal" ranges)
>
>Is anyone else experiencing similar problems? I guess I'm trying to find
>a connection with a possibly damaged endocrine system from the DES my
>mother was given when I was inutero that was perhaps made worse by the
>Lupron? I'm wondering if anyone has had similar experience and has found
>a solution. I thought that with the hysterectomy I might get my life
>back, but things just seem to be getting worse!! I'm close to totally
>unfunctional and getting desparate -- can't imagine living like this for
>another 30 or 40 years!! Anyone?
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