Ugh, i feel your pain and sorry to hear your experience. I had 3 open j-pouch surgeries too 18 years ago and loads of scar tissue. I started having gyno-issues a few years ago and had a similar experience. One of which was a bladder prolapsed (not uterus like yours), but similar challenges. The entire area just feels squished together. I wish they had a better way to evaluate our altered anatomy! My gyro recommended going to a pelvic floor physiotherapist and it helped a lot though not perfect. It took 6-8 months to really feel a difference, and I still struggle with it. I also was basically told surgery isn't an option because it is too risky with our altered anatomies.

I also found this article which is interesting how many of us have Pelvic floor disfunction: https://www.ncbi.nlm.nih.gov/pubmed/28259741

The j pouch could cause the pelvic floor disfunction, and the PFD causes prolapses. This article was in a gastroenterology journal, so many gynecologists might not even know how common it is for us.

Hope that helps and good luck. I've found being female with a j pouch particularly frustrating, as anything "pelvic" is extra complicated. I was bounced around to specialists for 4 years before finally getting some answers.

Thank you so much for this!  I've printed the article and will mention a pelvic floor physiotherapist; hopefully one or the other will get me some help.  

Good luck to you also!  I hope your PFD continues to improve.  

@genreina posted:

Hi everyone!  I had phase 1 of my j-pouch surgery 14 years ago this month, when I was 21.  Everything went well overall, and I've had very few issues.  About a year ago however, I started having severe pelvic pain while trying to run, and was soon after diagnosed with uterine prolapse.

I've been asked by the doctors I've gone to, and my answers are all: I have not had any children (in fact, unexplained infertility after 5 years of all kinds of treatments and lots of doctors); I don't lift anything heavy regularly, just an occasional 50-pound box at work (once a week-ish); and I don't struggle to have a bowel movement (but do have several a day).  These doctors have told me that my j-pouch surgery couldn't have anything to do with the prolapse, but otherwise can't explain why it happened (and one even acted suspicious that there was something I wasn't telling him (?)).

My surgery was not done laparoscopically; they started performing surgeries that way very shortly after I had mine.  So I do have a significant amount of scar tissue. 

Previous doctors tried every possible pessary, but they all put pressure on my j-pouch and made bowel movements nearly impossible.  Another told me the only other option was surgery, but didn't want to because I'm "too young," and told me to just wait it out until I can't take it anymore.  Off and on, I am very uncomfortable, and I'm not able to exercise like I want.

I will be seeing a new doctor next week, and I'm wondering if there is anything I should mention to them.  Has anyone else had similar issues?  Any advice on what to say to the doctor?  I'm afraid I'll just get the same answers as before. :-/

Hi there! I was wondering whatever happened with your prolapse? Do you still have it or did you have surgery? I have had my jpouch for almost two years but one year out from surgery I developed a bladder prolapse out of nowhere. I had been straining some and I think that’s why it happened. It bothers me so much bc I have difficult defecation with my jpouch. It is hard for my to empty out. I take miralax 2 times a day to have a bm. Now I almost feel like the bladder prolapse is in the way of my jpouch. Sometimes I have to manually push against my prolapse to empty my jpouch out. I don’t know what to do!! I’ve tried a pessary but like you, it blocks my jpouch from emptying. Totally sucks that we never had any prolapse problems until jpouch surgery!

Hi!  I'm so sorry you're dealing with this.   I ended up having several appointments with physical therapists, which did help (insurance was a problem, but eventually got that taken care of).  Part of my problem seemed to be that I had virtually no core strength, which also led to lower back issues.  But also, the article linked in @duck11's post was very helpful, both for me and the physical therapist, to understanding what was happening.  Learning exercises to get those muscles to relax, and to increase core strength, has been very helpful.  It also hit a point, before I started seeing a physical therapist, where it just stopped getting any worse for me.  I *hope* that's permanent, but I don't know.  I still haven't gotten brave enough to try running again, but long walks have been fine.  Sometimes I still have some discomfort, which seems to follow my cycle, but honestly I've gotten used to it. 

I don't know if that's super helpful, but I would definitely recommend trying to see a physical therapist if you can.