Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

1,254 Members

9,441 Posts

0 Online

SpeckledPup 09/05/2013

I am long-suffering with the ravages of endometriosis...19 yrs. post surgeries. I've just seen 2 "specialists" in 2 states in August. I had such hopes of HELP. I'm not looking for a perfect life, pain free by any means. I do, however want a quality of life. I need meds that make the day to day possible. I have so many issues from gastric bypass 1987, IBS, pelvic pain. They all exasperate the gastroenterologists and gynecologists...one pointing fingers at the other. The symptoms are completely a package deal in my case. At he end of the day and into the long sleepless nights of agonizing pain, I'm not getting any help. They suggested I see a therapist. I am totally at my wit's end, as I don't think it's "crazy" to want to relieve some of this suffering.

VallyWillis27 09/05/2013

You are definitely not crazy or crazy to want some relief. But what I can say is that I have read that cognitive behavioral therapy (which is different than traditional therapy) can actually help with chronic pain. Obviously it isn't a cure and doesn't take care of the main problem, which is endo but it could help. It is something I have been looking into myself since I am willing to do anything to make my symptoms a little less noticeable. Hope you aren't offended by me posting this, but it could be something to consider. Although, I hope you can find an endo expert who can help you. There is a woman on another site who had a hysterectomy and still suffered for another 22 years, then she found an endo expert who excised the left over disease and she has been pain free since (maybe not a typical story, but you never know!)

SpeckledPup 09/05/2013

No offense taken....ever. Thanks for your thoughts. Yes, I see a therapist, actually. I also know from experience that mine is not a "typical" story either. My most severe pain, even as I type now, is in my left side. I have a "pelvic kidney" or "sub-rotated kidney" on the left.
I've had major urine issues (color w/strong sulfur odor) since last October. I saw a urologist who had difficulty locating my bladder on ultrasound because of all of the junk (his words). I have a UTI that thus far has been resistant to antibiotics. I am concerned, and I believe rightfully so, that either scar tissue or residual endo adhesions are causing stricture in not only my bladder, but also my colon. These "specialists" I've seen in the past month seem to blow me off as delusional and psychotic. I probably am both, but which came first...chicken or the egg? I don't know many folks that could have "coped" as long as I have. My psychologist practices CBT and BF with me for 21 years and counting.

deleted_user 09/05/2013

Speckled-Is there any chance you are anywhere near Hershey PA?I just saw that hyster sisters listed one of the doctors here at Hershey Medical Center as an endo specialist!!It's also a teaching hospital...maybe they would have an idea?Not sure if this helps at all.I wish doctors could just realize there is money in fixing this disease...or at least believing that it exists:( I will try and find the doctors name again if you want.

SpeckledPup 09/05/2013

Thanks, Mellissa...
I'm wa-a-ay down south, but I appreciate the thought. Hope you are reasonably well today!

VallyWillis27 09/05/2013

You know I keep reading on another site I belong to that the center for endometriosis in Atlanta Georgia run by Dr. Albee & Dr. Sinervo will do a free consult. I am also positive that the woman I told you about had her surgery here 22 years after her original hysterectomy. Maybe they would be able to offer you some help if you emailed them your records for a consult. Here is their website :-)

http://www.centerforendo.com/

Join the Conversation