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Endo with a side of God Only Knows WhatFrom: Julie (anonymous@obgyn.net)Thu Jun 3 12:27:48 2004
Hello everyone! My name is Julie, I am 32 and I live in Dallas. Today, June 3 2004, I have been diagnosed with "something", likely some endo with a side of who knows what....A brief history on me: I had cervical dysplasia removed with a leep in 1998. My uterus is tilted and my mom had a partial hysterectomy at 38 due to massive fibroids in her uterus and ovary- and possbly endo. She doesn't have the records! I started to have digestive problems about a year ago and have tried nearly everything under the sun to not feel bloated, constipated and gassy every single moment of my life. I looked heavily into candida and have been on an organic, 30% raw, no white flour, sugar or artificial ingredients diet for 6 months. My gastro doc has done every possible test and each one reveals nothing. My periods have become increasingly more painful each year. I am completely useless for 2 to 3 days every month. Thank God for Vioxx. I can't remember how long it has been since I have really enjoyed sex. I used to, but now the thought of it now makes me wince in pain and I feel like crying since I have turned into the woman I said I would never be. Sex feels like I am being stabbed with a knife...I know I am not alone and my heart goes out to all of you! It's not fair! But, I know. I know we could be so much worse off than we are and we have to be thankful for what is good in our lives. Sometimes, after sex, I am in excruciating pain as if someone was twisting a red hot poker up my ass. I thought this might be related to my digestive problems, but decided to see my gyn anyway. When he inserted his finger into my rectum, I nearly jumped off the table. He said he was suspicious that I had endo and told me he would "just go in an zap" any endo and put me on Lupron and I would be fine. Immediately after the visit, I went to the bookstore and purchased all 3 books I could find. After learning my gyn only does about 12 endo cases a year, I made an appointment with an endo specialist in Fort Worth- who happens to be a contributing writer to one of the books I purchased. I saw him today and am quite scared. He took my history and did an exam. He knew right where to look, unlike my gyn, because I was in pain during the exam. He then did a sonogram and here's where it gets scary. The nurse ran out of the room to call the doctor in because she could not identify what she saw! My endometrium is unusually thick, some large black masses, some with blood supply, some not. There was alot of "hmmmmm" and "that's interesting" "that's unusual" going on. There's some black mass in my uterine wall- the type of endo that attaches itself in the muscle and grows roots- oh yeah and that type of endo is inoperable. I may have frozen pelvis- potentially inoperable. They don't know what the masses are, could be endo, fibroids or a generous combination of everything under the sun. I have never had a lap and of course that is the next step in getting to the bottom of this. I know nothing is confirmed until the lap. I trust this doctor...I am just sad and scared. I never thought I might be infertile or one of these rare cases where so much is wrong they don't know exactly where to start. The thought of being on drugs the rest of my life is awful since I lead a fairly holistic lifestyle. I have no kids but I do want to have them. How do you afford IVF on 30k a year? I may be jumping the gun, but the doctor was very puzzled- and he's the expert! Well, thanks for listening...I promise to keep you posted as my lap won't happen for another 3 weeks. I want you to know that I am praying for all of us to be healthy in mind and body. I pray for strength and positivity for all of us! God Bless, Julie
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