Reply to "endometriosis or pouch"

Hi Lovelife,

My husband and I did IVf treatments and the pelvic pain started about 6 months afterwards. At first, it was only mild after sex, then with periods and finally evolved to all the time and the pain intensity went through the roof.  I finally saw a good OBGYN who diagnosed the endometriosis but it took FOREVER. "it's just your pouch", "it's just your scars" etc. Everything gets blamed on our Jpouch surgery like a scapegoat. I really had to push that something was wrong. Like you, I had  numerous trips to the ER with pain so bad I was throwing up that lasted for weeks at a time. I had about a year where all I did was go to work and lay on the couch. It really sabotaged my life.  My gyno would not do ANY surgery, and still won't, unless I agree to all the risks, and rally strongly said it was a bad idea unless I am desperate due to the risks to  the J pouch. I appreciate him being honest about this instead of ruining another part of my health (my j pouch has been very good to me). Instead, I am on a crazy drug called Lupron that puts you into meno pause. It has helped a ton-- not perfect, but my pain is so much more managed so I chose quality of life with the potential long-term risks. No one can live in chronic pain like that indefinitely. My understanding is that endometriosis takes 10-15 years for diagnosis since it can only be confirmed with laparoscopy or a positive response to the drugs that treat it. Can you try progesterone and see if you respond? My gone said if you respond to the drugs, you can use that to confirm the diagnosis as there is no other reason they would work.  The other thing you might want to check is pelvic physical therapy. I developed all kinds of muscle/ligament issues from the J pouch/chronic pelvic pain/hip arthritis that then becomes it's own pain--you tense up your abdomen forever from pain and then the tight muscles create a new kind of pain cycle that wouldn't correspond with your periods. I was really surprised how much pain this could cause. You don't need a doctor referral to see a pelvic physiotherapist and it has really improved my life a lot. I hope that helps you on your journey and hope you get the answers you need. 

 

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