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Re: Sciatic Endometriosis (hip, leg pain) - Anyone have it...Anyone been treated properly for it?From: anonymous@obgyn.netSat Sep 23 10:32:38 2006
Hi Everyone~ Thanks for this link! It is nice to see that documented and even things from so long ago coming back to our minds. I have had a total and complete hysterectomy and have undergone non-invasive methods i.e. Lupron,Synarel,consecutive B-control before and after my last major endo surgery in 1998. I have to say with proper dissection from and Endo Specialist coupled with the above mentioned regimn I did have 8 wonderful and tolerable years compared to what I was used too. Last November my pain returned in the hip,leg and right buttock areas as well as the pelvic region. I have tried 6 lumbar injections and nothing has worked. I have worked closley with a pain clinic for over six months and on high meds which complicated the GI tract. So in order to move forward with a possible future sugery I need to get the GI tract moving so off those meds etc. My pain on a scale of 1-10 with the physical therapy and pain clinic in the hip, leg, and buttock area was a 7. It is now a 9 while I wait but knowing my colon moves is more important. I share all this info as we start to get in a catch 22 situation as we progress down the line. FINALLY!!! My Dr.'s said it's retroperitoneal fibrosis, scaring and adhesions (which is no surprise) The news was they said at this point of pain it crosses over a lot of specialty areas..i.e. Urological, OB/GYN, GI, Vascular etc. So if you are getting put off, we can't take it personal (which I did)...finally my primary Dr. says enough is enough with everyone passing the buck. I have learned that a lot of Dr.'s will say you are "in-operable" or "you are not a surgical canidate at this time" because those vessels and arteries cross over in each others areas..which hey let's face it..it's hard to get one Dr. on your side in the O/R let alone one from each department (ha ha). They are working to get me into Mayo with a specialty team to have in the O/R if it's not life threatning. When we start getting endo in these areas as in the article it's becomes harder and harder to treat or get too because it's like minute road maps leading in an out in so many directions and so many departments. My Dr. says dragging my right leg around is not good. There has to be something that can be done. He is working closely with Mayo Clinic to see if they are willing to build the "specialty team" So all I am saying here is if you get pushed off..please do not hestiate to write me. I am here to help! I am happy to help you through this as walking and the leg, hip and buttock pain is the worst of all my pains I have ever had with endo. I am here to help make sense of this as we wait. Finally...being turned away makes sense...it's not fair...but for crying out loud we can stop being made a fool of when they can't help. I am hurting with you and even accupuncture hasn't helped and I did that for a year..it's a deep seated pain we can't get too. If you need me I am here. Thanks for listening... Elisa
At Sat, 23 Sep 2006, Julie wrote:
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