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24 with Reoccuring Endo - Please read and give me your story/feedback!From: Mariah (anonymous@obgyn.net)Wed Sep 10 20:32:01 2003
Hi there. I'm new to all of this and could really use some advice and guidance from other members of this community who've had their own experiences with endo. I am bewildered, frustrated, confused, and often in so much pain -- endo has truly become a "quality of life" issue for me. I guess more than anything, I just wanted to tell someone my story and have someone listen. I am 24 years old. I have always been super-healthy. Last February, I awakened in the middle of the night with some of the sharpest pain I've ever experienced in my lower R abdomen area. At first both I and my doctor thought it was my appredix, but it turned out to be an ovarian cyst that burst. Ever since that moment, my health has deteriorated drastically. Over the next three months, I had almost contant pelvic and abdominal pain. In April I finally had a Laser Lap, and the surgeon found endo in several places, but said I was only Stage I. He cauterized the areas where there were implants, and when I woke up, he seemed pretty sure that the endo would not reoccur... he had "gotten it all." I am 6 months post-surgery. After the few weeks it took to heal from the surgery, I was in much less pain than before, but other things got worse - like painful bowel movements and pressure and bloating in the abdomen. I am almost to the point, pain-wise, where I was at wits end and decided to get the last operation. Now I am also having pain higher-up... around the liver and lower rib area. The pain definately correlates with my cycle. The surgeon didn't have me do a bowel prep, and things I am reading now make me wonder if he was really a much of an endo expert as he said he was. Now I am having so much GI/bowel pain and pain in the perinum (sp?) area, but the GI doctors say that it is liekly just IBS and not related to the endo. However, I NEVER had ANY digestive/bowel proplems aside from the bloating and contripation I got around my periods previous to all of this endo and surgery. My Gyno has told me my only option is Lupron (I am wary that this is his only suggestion) and Vicodin. I greatly respect Christiane Northrup, and she recommends progesterone cream in her books. Has anyone had experience with this? It's taken me forever to get in, but I will have a 2nd opinion from another Gynocologist within the next few weeks, as sell as a visit with an Endocrinologist in November. 1) I am looking for advice on helpful questions to ask these specialists. 2) I also would greatly appreciate advice on Endo surgery specialist in the Midwest (Michigan, Ohio, or Chicago area). I am becoming convinced that my surgery was not what it should have been had I gone to a TRUE endo expert. 3) I am just looking for someone to listen to my story and tell me i'm not crazy, or a freak! I don't know anyone else with endo, and my family, though supportive, is baffled and not sure how to talk about it. I just want to hear other women's stories so that I stop feeling so alone and helpless. Thank you all so much -- whomever reads this, and whomever can respond to me... I have always been an extrodinarily easy-going and optimistic person, but endo is definately challenging my ability to keep going some days. Thanks in advance for your responses.... -MBC
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