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My name is Heather & I am 24 (some of you know me as Heather #2). My battle
with endo began shortly after I was married in March 1991. I was on the pill
and I started getting more and more painful menstrual cramps. I stopped taking
the pill to start a family and the pain became unbearable. I had a laparoscopy
done in May 1991 and nothing was found but the pain was still there. After that
I was put in the hospital four more times for "chronic PID" (although cultures
never showed any organisms). Between May '91 and March '92, I think I went to
the Dr. every other day. Finally in March, I saw a new Dr. and he did another
surgery. It started out as a laparoscopy and turned into a laparotomy when I
started to hemmorhage while the Dr. was cauterizing endo implants. After that
surgery I took Clomid for 3 months to try and get pregnant, but nothing happened.
After that, I started taking Danazol. It worked for a few months, but I started
having periods the last two months. When I stopped the Danazol, I had pain
every day, not just with my period. In the middle of the Danazol therapy, I had
another scope done and "minimal" endo was found again. I didn't think that I
should have had any endo after being on the Danazol but I did. After the Danazol
and surgery, all my doctor would do is give me NSAIDS and tell me to get pregnant.
It would crush me every time he told me "you just need to get pregnant". I
wanted a baby so bad but it's hard to get pregnant when it hurts too much to have
sex.
After months of him telling me to "just get pregnant", I went to a Univeristy to
be in an add back therapy trial with Zoladex. The Zoladex worked wonders for
the menstrual pain but by this time I had chronic pain every day. I was given
every anti-inflammatory in the book for my pain and none of them worked. The
only thing that even made a dent in the pain was narcotic pain relievers. So I,
like many others, was labeled a drug addict. I told the Dr. that I wasn't
addicted tot he meds., I was addicted to not being in pain. Finally I found a
third Dr. that actually believed me and he wasn't afraid to prescribe Demerol.
I conceived in No. 94 (one month after being on daily pain meds). We had a
beautiful baby girl August 26, 1995. I want to try and have another baby but
the pain is gettign worse every month. I had to see a different gyn because
of an insurance change. He wanted me to take Lupron but I didn't do it because
I am afraid of all of the side affects. He doesn't want to do a laparoscopy
because he is afraid that I have too many adhesions now. So it looks like I'm
in for another laparotomy. Sometimes I think that I should just go ahead and
have a hysterectomy but I want more kids and I'm afraid that the endo won't go
away even if I do have one. I know that I would be put on "auto ignore" if I
had a hysterectomy and still had pain. At least with my organs intact, the Dr.
believes that I still have endo. I guess they don't read any new information
about this disease because they don't seem to realize that pregnancy and
hysterectomies are not cures for endo. This gyn won't prescribe anything for
pain either. I am so thankful for my general practitioner who isn't afraid to
prescribe the pain meds that I need.
Endo has changed my life completely. I used to be a very active person and now
I am glad that I am able to get out of bed some days. It has made feel inferior
and scarred my body. It has put me on an emotional roller-coaster and through
physical hell. It has turned me into a fighter though. I want to give up some
days but I refuse to. I will fight until a cure is found so that my daughter,
granddaughters, or any other woman won't have to go through this. I have also
met some wonderful women that I can share everything with and know I won't be
judged because they are going through it too. It makes me feel good when I can
support someone else when they are going through rough times and it's good to
know that they are there for me when I need them. I know that if we stick
together, we WILL make it through this and we WILL make a difference!
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