Medical Misdiagnosis -- Tell Your Story

I am a 49 year old married Alaska native woman who was finally diagnosed in 2012 with massive pelvic adhesions. It started in 1995 five years after my second C section. I also had appendix taken out and a hernia repair in my history. I was told by my gyno Doc that if it was found the first year, I wouldn’t be going through what I am now.. It seems like it came out of no where. One day I started having pain in my right groin. There were days that it didn’t bother me the first 10 years. Gradually I found out the every day things that would make it worse. When I was at my worse I would cry out in pain. It came to be such that my family and friends just ignored me crying out because it was normal for me. What was embarrassing was crying out in pain in public places. I would have people gathered around me asking what was wrong. I was seen by doc after doc in the Alaska native hospital. Even psychiatric docs. The hospital sent me to at least 4 outside clinics during the years including pain management,sports medicine, and chiropractors. After being seen by a new doc I was told I was an enigma and there is nothing else they can do. I went thru many type of meds, nerve meds, antidepressants,inflammation meds, different types of pain meds and none would help 100%. I had a couple more surgeries that a doc thought was causing the problem but none was ever done using laranscopy. I had every test done including xrays,ultrasounds,mris,full body scan but again laranscopy was not one. Finally, in 2012 I had to have my tubes and ovaries taken out because of a rare type of breast cancer. I moved to minnesoda during this time and that is when a laranscopy was done and the ob doc found the adhesions. I was so happy to have found what has been causing me all this pain since 1995 but that was short lived. Although the cause was found, getting it fixed is another ball game. Finding a doc that knows about them is another problem. I have since moved to texas, and being on medical financial help I am limited to what doctors I can see. So far every doc ive met tells me “ive heard of pelvic adhesions but I need to do some research”. Of course they never do. I bring paperwork into them that I have researched. I am still looking for answers to help me with this pain. I am wheelchair bound for most of the day now. Since my laranscopy the pain has increased to my left side now and I can really feel the pulling in my abdomen. From what I read I may be one of the lucky ones so far in that it is not obstructing my bowels. Hmmm one of the lucky ones. My pain is 24 hours a day now. Its kind of like a bad stomach ache all day and night. If I eat to much, walk to far, stand to long, sit to long, then I get these lightening type pains that last for hours or days. So most of my day is laying in bed with my legs propped up over my chest. That seems to help. The pain meds don’t work 100% but they do help when im at rest. Im still trying to find answers and I want to try and help someone with pelvic adhesions before it gets as bad as mine. 

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