endometriosis or pouch

Hi all,


I've had a J pouch for 16 years with no problems at all (yay!). But the past year, I've had terrible pelvic pain and gynaecologist thinks it is endometriosis. Initially I did really well on hormonal treatments for this, but now  I have stopped responding to these and pain is back and worse than before. I'm being sent back to colorectal surgeon to see if there is something structural in the pouch that could be causing my pelvic pain as it is unusual for the hormones not to help if it is endo.  Has anyone ever had any "shifting" in the pouch, like a prolapse, that needed surgical correction for pain? Also, has anyone had a laproscopy for endometriosis with your J pouch? It sounds like it is very risky for us pouch girls to have one so I am worried, but equally don't have ay other options right now other than narcotic pain killers until I hit menopause which really isn't an option.... thanks for your thoughts.

Original Post

Hi Duck,

So sorry for all of the pain...

My situation was a bit different and a long time ago plus I have a k pouch...but...I started having intense pelvic pain on the right side...first they thought endo, then they found cysts around the right ovary and inflammation in the tube (salpangitis), after a HSG (hyst√©rographie ) they put me on massive doses of antibiotics  but ended up operating (open surgery )... my pouch sits on the abdominal wall so I was terrified. 

The surgeon did a fantastic job (general surgeon with my obs/gyn in the o.r.) and cleaned up a big mess of infection, cysts, adhesions etc and even 'opacified' my tube hoping for it to heal up normally for fertility reasons. 

They put me on progesterone for 3 years to allow the region to heal and prevent reccurance...it/they never came back.

You need to speak openly to them about your fears, have your C/R surgeon present and ready to dive in if needed.

Good luck and I hope that they get this all straitened  out for you.



Hi Duck11,

please tell me how your story has evolved. I began having pelvic pains a few months ago and two days ago I ended up in the emergency room at the hospital with crazy pains. Yesterday I went to the gynecologist who said they did not find anything and had no explanation as to what caused the horrible pain. Because the pain did not occur when I have my period they say it cannot be endometriosis.

Please let me know what happens with you


Just because they didn't find anything does not need that there is nothing there.

Sometimes it takes different types of tests to discover what is going on. If it never happens again, then fine but if it comes back then there is Something there...stand up for yourself, your health and your body...


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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