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I have been battling issues for about 9 months where whenever I have my menstrual cycle or ovulate, I have issues with my pouch ( frequency and not being able to go much, the consistency changes and pain). After 6 months of pouch endoscopies and rectal dilatations almost every 3 weeks and meds to calm, we discovered, through ultrasound and then MRI, that I have a peritoneal inclusion cyst on one of my ovaries ( darn near 10cm x 8cm).

I'm asking for advice from women who've had hysterectomies with pouches and wondering how they did?

The GYN surgeon is highly suggesting nothing or trying to drain it and hope it will relieve some of the issues.  I have noticed that my periods have definitely changed also- very heavy and painful and exhausting. I often have pain ( uncomfortableness) with sex.  Or He suggested a hysterectomy as a last resort, but has referred me back to my GI surgeon for his recommendation. The GI surgeon had originally said that sometimes he has seen over the years that the uterus and the pouch are so closely related in space that during menstruation and ovulation, the uterus causes issues in the space for the pouch.  He sometimes have them remove the uterus to give space for the pouch to properly function.... because it has to.

Any input on experience with any of this is greatly appreciated!

Thank you

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I had my J pouch surgeries in 1991. I had my daughter via C section in 2002. Not quite a year after, developed a huge mucoid cyst on my left ovary.

Doc had to go in and remove it. My pouch was fine (didn't have a hysterectomy). Per the gyne surgeon, my lady stuff is entrapped in scar tissue, and he was amazed I conceived naturally.

I have horrendous mittleschmirz pain (ovulation) that requires birth control to suppress it. It was so bad that I, too, had vacillating pouch issues with it. The suppression of the cycle helps so much.

Sorry it's not an *exact* answer back, but wanted to let you know someone feels your pain.

If possible maybe you can keep one ovary. I had a hysterectomy, when 40, and they only removed my uterus so I wouldn't be thrown into menopause. Years later they ran lab tests and my old ovaries had shut down.  


The only thing my ovaries could do for me was give me ovarian cancer - so I had my surgeon remove them along with my colon.  The point I'm trying to make is to keep at least one ovary if possible.  I had a much easier time with menopause because I still had them.  Sorry if TMI. one of the surgeons said I had nasty cysts and it was a good thing I had them removed voluntarily.

Take care 






I had a hysterectomy for cervical cancer three weeks ago and my pouch is fine. The pouch and uterus were adhered and my op took longer because of that- I also had a pouch surgeon present during surgery and they did a longitudinal abdominal incision so they could really see what they were doing- I have a 10 inch scar. Hysterectomy IS more complicated with a pouch, but my gynae surgeons were great, got my original pouch surgery notes and as I said haD a pouch surgeon present during the op to give my pouch the best chance.

I had a hysterectomy 6weeks ago for abnormal bleeding while on tamoxifen (a drug used to treact my breast cancer )  They did find endometrial cancer so I Am glad it is out.

I had the hysterectomy at the same hospital as my j pouch ( Cleveland Clinic)  When I was told I would need a hysterectomy I contacted my j pouch surgeon who is no longer at Cleveland Clinic and he said that a hysterectomy would be no problem but I would need a colo rectal surgeon who does jpouch surgeries in the OR.

There was some scar tissue between the uterus and a portion of the small intestine and I was able to have both ovaries, tubes, uterus and cervix removed laparoscopic leaving me with a one inch incision and three 1/2 inch incisions. I was discharged the day after surgery.  My pouch acted up a bit post op but has settled down.

The colorectal surgeon did explain that depending on how things looked in the OR with scar tissue she might have had to take out the jpouch and give me a temporary ostomy While remaking a new pouch.  I had to consent to that as a possibility and we would not know until they were in the OR.  Luckily that did not have to happen

At 3 weeks post op I was walking 2 miles a day and at 6 weeks I am back to work fill time.

I don't have any input into menopause because I was already in it.

Good Luck

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