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Reply to "Hysterectomy recommended with Pouch removal ?"

Well, I thought I'd share my experience. I had jpouch done in one surgery in 1997. Other than one tiny bout of pouchitis 6 months afterward, I had no issues with my pouch. Now let's fast forward to mid-year 2016. I was 43 and experiencing a lot of constipation, cramps that hurt worse than normal during menstrual cycle, and heavy periods. I went to my annual gyno checkup and he put me on progesterone to help lighten the periods. Since I had a history of migraines, he didn't want to put me on any estrogen based birth control pill. Anyhow, after trying progesterone for another 6 months, my symptoms did not get any better. So, I went back in and he ended up doing a vaginal ultrasound. It revealed a cyst on my right ovary. He wanted to monitor it, so I had vaginal ultrasounds every 10 weeks. But, the ovary grew to 9cm. I had my right ovary removed in June 2017. But, not 3 months later, I had even more pain, went back to gyno, this time when he did an ultrasound, he saw that I now had a cyst on my left ovary and then a fibroid had grown (which had no previously been there). He suggested we stay the course with progesterone to see if the fibroid or cyst would shrink within the next few months. When I went back in Nov. 2017, not only had my left ovarian cyst grown, there were now two, and the fibroid also grew larger than a mango...oh, and by the way, my right ovary had left over cells that they didn't get when they removed it previously, so it began to regenerate itself. I never knew they could grow back with rogue cells! I went back to him in December after mulling over my options (IUD, total hysterectomy, ablasion, blah, blah, blah), and told him I wanted to go through with a total hysterectomy because I was nervous that my fibroid was going to attach itself or wrap around my jpouch. Somehow, I felt as though the fibroid was causing my constipation because I also felt pressure there and shooting nerve pains down my legs. He referred me to a gyno oncologist due to all of the adhesions I had with prior surgeries. The gyno oncologist said that my total hysterectomy would be challenging, and that they were going to do it open abdominal instead of robotically so that they could more easily repair my pouch if something were amiss during the operation. I had total hysterectomy on Feb 5th, 2018. It's only been about 2-1/2 weeks since surgery, but boy am I glad I had it done. Turns out, my large fibroid DID attach itself to my j-pouch. Fibroids can keep growing, so I am so glad that I went through this. 

You have this alternative to do it all at once, and it is a very personal decision. So, I can't tell you what you should do. However, if you choose to move forward with it, my advice is to definitely make sure a gastro-enterologist with j-pouch experience is in the operating room with your gynecologist. Although the recovery is lengthier, I also would highly recommend total abdominal vs robotics. The outcomes are the same for both, but robotics is a lot more expensive.

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