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Post by ellene on Apr 14, 2008 19:04:21 GMT -5
I just got a 2nd opinion on my endo stage IV. My first surgery was August of 2007. I started to get pain again, then went to a true endometriosis specialist (versus my first doctor who has treated endo - he was more of a fertility specialist).
This new doctor informed me that I now need another surgery ASAP. I now have kissing ovaries, 7 cm cyst and 5cm cyst on both ovaries.
My last doctor's visit in February did not indicate I had these large masses (just one 3cm cyst)
Just curious - Did anyone else's doctor miss this type of stuff? Is that normal?
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Post by puddleduck on Apr 15, 2008 2:38:50 GMT -5
Hi there, It is good to know you found a reliable specialist at last, albeit late. Diagnosis is delayed in so many cases, but fortunately, increased awareness is meaning that women are being diagnosed sooner. Obviously neither you nor I were lucky in this respect. Eight years ago, at the age of 24, my first gyn would not investigate further than a pelvic (abdominal, not internal) ultrasound because I was a virgin and I didn't even know then about laparoscopies or endo. I was told I just had PCOS and to take Dianette in the long term (which is now banned in the UK beyond 3 months' use!). The GP I had been seeing since I was 11 years old sent me for a whole battery of bowel investigations (as I had weight loss, bleeding from the bowel and abdominal pain) including colonoscopy, upper GI endoscopy and barium follow-through...and when nothing more than inflammation was found, they did no more (actually, I was told that I had merely brushed my teeth too hard and that bleeding from the bowel around period time was normal). Three years ago, things worsened considerably at age 28/29 and I went to ask for help, was prescribed various NSAIDs and subjected to a grisly internal in which I screamed the place down in agony...even then, it was only at my own insistence that I was referred to a gyn and eventually had to pay to be seen privately because my NHS referral was lost and I'd have had to wait 4 months just to be seen, then another 3-8 months for a laparoscopy. I was finally diagnosed at age 30 with extensive, inflitrating endo, adhesions and masses of cysts on one ovary. The surgeon couldn't attempt excision at the first op because the disease was so widespread. I am now a member of two main Endo bodies in the UK so that my voice is heard and I can contribute to their work and encourage research into understanding the nature of the disease and better treatments. Have you joined any? All the best with the op.
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Post by shannonhiggins on Apr 16, 2008 7:44:19 GMT -5
According to the Endometriosis Research Center "the average delay in obtaining accurate Endo diagnosis is a startling 9 years and may go through as many as 5 or more physicians before proper diagnosis and treatment. Even after confirmation of diagnosis some patients are still subjected to inadequate care and insufficient treatment of their symptoms" I went to Physical Therapy for almost a year for a hip problem, then I got Cortisone shots then a surgeon wanted to screw my hip joint. It was Endometriosis all along....... Unfortunately thousands of woman go threw what you are. I've had two Laps with no relief. I'm going for my third in two weeks. I'm going to the Center for Endometriosis Care in Atlanta GA. Maybe you could check them out. It is alot to take on, to travel for surgery. But I've run out of options. I hope you (and I) feel well soon. www.centerforendo.com
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