PERSONAL STORY: CLARE TRACEY

I have stage 4 endo. It took 20 years and at least 12 gynecologists to diagnose me. I went to the emergency room last year and found 5 different doctors with 5 different opinions. They recommended everything from "emergency surgery" to "It's going to go away". One doctor even old me I had pelvic imflamatory disease. I didn't know what that was and he told me it was from "dirty sex". The problem was I wasn't having sex. It was too painful. I didn't know who to believe. I'm not with the doctor who diagnosed it because I wasn't satified with my treatment. I'm 41 and do not want children. He did laprascopic surgery and followed up with Lupron. My advice: Don't Take Lupron! It is an evil medicine.

I guess I should elaborate on Lupron a little more. I had 3 injections. It put me into immediate menopause. Not only did I deal with the hot flashes, mean personality (I even couldn't stand myself) but one of the side effects is bone deterioration.

I have a horse farm and I couldn't even pick up a scoop of grain let alone a bucket of water. My temper was wicked. I felt as if I was going crazy. My whole body ached. My elbows were in excruciating pain. I wanted to cry all of the time. I'm usually a very happy person. So happy that people at work ask me how can I be so happy all of the time. Most of these symptoms lasted about an additional 3 months after the injections were stopped. The only good thing was it was winter time and I'm usually cold. The hot flashes prevented that.

Don't ever let a doctor tell you "it will go away". It won't. Go see another doctor and keep going until you find the right one. Again, if you are experiencing pain and/or heavy bleeding there IS something wrong. You can have symptoms from everything from painful bowel movements, painful gas, fatigue, to pain after eating a meal. I would venture to guess that painful period cramps are a classic sign of endo but the doctors cannot tell what it is with a pelvic exam.

Laprascopic surgery actually sees it. Find a doctor who is very experienced in endo. I do not know what it is like to be pain free so I have learned to live with it. I can't wait for my surgery in January. I could go on but if anyone has any questions, feel free to email me. I can only tell you what I have experienced but from what I have read, almost every ailment I have had was due to endo.

I just went to see Dr Fermin Bueretto. He's located out of Mercy Medical and has an office on Osler Dr in Towson. He actually knew everything I had experienced without me telling him. The reason he knows is because he use to be an infertility doctor. Everything makes sense now. I will have surgery in Jan 2001. I'm looking forward to a life without pain. I know it may never go away but it sure is nice that after 20 years there is actually a doctor who knows about this disease. My recommendation would be if you have "bad cramps", find a doctor who is well versed in endometriosis. It makes all the difference in the world.

Update:
I had a complete hysterectomy and am on Cenestin, a low dose hormone therapy. I feel like a new person. I have not had any complications. Not even hot flashes. Good luck to all with this nasty disease.

Another Update:
It's been nearly 11 months since my hysterectomy. I still have no side effects with the Cenestin. No hot flashes, no terrible mood swings. Ocassionally I have a little tiny "poor me" moment, but everyone deserves one of those once in a while. I now ride my horse more than ever. I can lift things again. I can't even begin to say how much better I feel. I can honestly say, I don't miss the monthly cycle. I'm back to happy ole me. YEAH! I now know what it feels like to be normal again.

Clare Tracey

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