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Debilitating back, hip, pelvic pain for 10 years, now in chest as well

by Plantlady, Jun 14, 2007 12:00AM
I am a 45 year old multiracial female.  I have had back pain that has become debilitating in the last 10 years.  In 1985 I had an ectopic pregnancy and my right tube was removed.  In 1986 I had pelvic pain and a sonogram revealed endometriomas and fibroid tumors.  Every ultrasound since has shown these, but doctors always tell me they aren't severe enough to cause my pain.  My GYN doesn't even believe I have endo, and says something else is the cause, but evaluation by orthopedist say its not musculoskeletal. I was given a Dx of exclusion of fibromyalgia in 1997, took Flexeril 10mg tid for several years without improvement.  In 1999 the pain spread to my hips and into my legs and began to make it hard to walk some days.  My abdomen became so distended that I have to wear size 3X clothes.  I was a competive athlete before the fibro diagnosis, large breasted and relatively slender; bust 39, waist 26, hips 37 measurements.  Now they are 42,44,41.  Obviously some is plain fat, but I don't think all of it.  My periods have gotten longer and closer together (they started when I was 9) and now I have a 23-day cycle and my periods last about 10 days.  Sometimes I have two within one cycle.  I know many doctors get annoyed when patients pass along other people's stories, but my sister went through this, was told her problems weren't endo for years, then they removed a cyst the size of a cantaloupe, later another the size of a grapefruit, and finally, a complete hysterectomy which completely relieved her symptoms.  She's been fine now for 10 years.  My question is, how much longer do I need to suffer from this if it is endometriosis, which is, after all, treatable?  How can I convince a doctor to be more proactive?  My sister had a bad time with Lupron, but responded immediately to surgery (her GYN isn't taking new patients).  I never wanted children, and now, with my condition, there's no way I could care for them even if I did want them, so I am not concerned about my fertility.  Are there some magic words I should be saying to get someone to listen to me?  My doctor has been advocating "watchful waiting" for several years, but I am losing my life.  I have to do physical labor for my job, and I can't seem to do it any more.  Sex is hard, buying clothes is hard, and now I have chest pain (only before/during periods) and I am having trouble breathing.  I have bloody stools (only during periods).  I eat a healthy diet and am surprisingly fit despite the weight (on a good day I can hike 10 miles, on a bad day I am bedridden), but I can't get rid of this weight.  Even when I'm organized and prepared with written notes, I notice doctors stop taking notes a few minutes into my description of symptoms, and usually cut me off before I can give the full history.  Please, any suggestions you can give me will be appreciated.
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