ENDOMETRIOSIS & ME

My story begins in October 1995 when I was diagnosed with Endometriosis, or, as I have
discovered..."Endo" as my sisters on the net refer to it.

My gyno had discovered a cyst on my right ovary earlier in 95, but told me not to worry about it
as I was on the pill, and it would disappear. I had been on the pill for years so how did this
make sense? Anyway I left it alone but started getting excruciating pain on my right side...
I thought it was my appendix. Boy, was I wrong!!

She said I should have it removed and I agreed. I didn't want this cyst to keep growing.
I remember going to her a while back with menstrual pain that felt like labour pains,
she brushed it off and told me that she used to suffer like that and I should take
Motrin 800mg for the pain. When I think back...I get really angry because she should have
checked for Endo then. Having a woman gyno, does not mean they care.

When I heard the cost of the operation I nearly passed out. The rate of exchange for the
Trinidad dollar (Trinidad is my birthplace)to the US dollar is $6 TTD to $1 USD. Even so I have
found out that it is cheaper here than in the US. My mom (who was paying) suggested
that I get a second opinion. That was the best thing I ever did.
The other gyno (a man) did a pelvic scan (which she never did) and found multiple cysts
on both ovaries but the right one was a mess. So we scheduled a laparoscopy and not only
did I have polycystic ovaries, they discovered the Endometriosis. I had scar tissue and adheisons that was
connecting my intestines to my pelvic wall, and had endometrial tissue on my uterus and ovaries.
My doc said it looked like a spider web in there, much like the background of this page.
My job is in jeopardy and my co-workers are fed up with me because of my absenteeism, but there is nothing I can do about that.

So far I have had two laparoscopies. He found even more endo in the second lap...I now have
severe endo. I am currently on Provera 20mg/day plus the pill. The last lap was in November of 97,
and it has started again. The pain, the nausea, the exhaustion, the depression...it's all back.
I am about to start a six month course of Lupron, and I'm scared. I've been reading,
and the side effects scare me, plus the fact that it comes back. I have no children and I want
to be able to have in the future. My doctor feels with, may age (31) and my condition,
I should seriously consider pregnancy next year, after the Lupron treatment.

May 22, 1999...Well I have completed my Lucrin (another name for Lupron) therapy and (knock wood) so far so good. I took six months off from work to deal with the injections and the stress, and that helped as well. I still get some minimal pain on my right side, but nothing like before. I had no severe side effects from the Lucrin, only the normal hot flashes, night sweats, insomnia and headaches. Oh..and my libido went through the floor to the basement or maybe to the centre of the earth...put it this way...non-existent. Anyway...as I write this I am getting a hot flash...I'm feeling a lot better. My stomach problems have also eased up a bit...I understand that many women with endo suffer with bowel problems and have been diagnosed with Irritable Bowel Syndrome, like I was. I have been reading "The Endometriosis Sourcebook" by Mary Lou Ballweg and the Endometriosis Associatin, I highly recommend it...very helpful. I have gone to the gyno for my post therapy check up and all thumbs up...YEAH!!! So now I have to decide whether to try to get pregnant as this is the optimum time...for whom? I really have to decide...I so want to have children, it's just the doing it that's scary. My boyfriend of five years is very supportive but to have kids out of wedlock is not a choice I want to have to make.

If you would like to share your story with me or have any questions you can e-mail me, I'll be glad to help. I do not claim to a medical expert in anyway, you should always consult a doctor before taking any medication. This is just my story, in no way should anyone use this information in lieu of a doctor's opinion.

I look forward to pain free days as do we all.

BREAKING NEWS!!! I got pregnant and had my son on January 14th, 2001. If it can happen to me, there's hope for us all.

I signed the Endometriosis Quilt

The Endometriosis Quilt has been signed by over 650 women, from all over the world,
sharing their endo story. Please sign and share your story.