Hysterectomy recommended with Pouch removal ?

I’d look for a better surgeon. It’s one thing to warn you that it might be necessary to do more extensive surgery, if it proves impossible to safely separate the organs. It’s a very different thing, IMO, to decide in advance not to try to do only the necessary procedure. Surgical menopause is very abrupt.

I didn't do this all at once but have a few thoughts. Before my UC got so bad I had just my uterus removed but my ovaries were retained as I was 40 and they retained my ovaries in order to not throw me into early menopause. At that time they said at around 45 was when they recommended taking the ovaries at the same time. The feeling was that was close enough to menopause and the potential for future ovarian cancer outweighed the need to keep them.  That was over 20 years ago.

I elected to have my ovaries removed when my colon was removed, I was almost 55.   They were no longer working - through blood testing. They ended up being in pretty bad shape with cysts - but that was only apparent when they opened me up.

If you don't have gynecological problems now I see your apprehension. 

My j-pouch failed and it was removed 2 yrs ago and my surgeon had to deal with hours of adhesion lysing.  I had 2 surgeries.  First to be diverted to a permanent ileo.  She spent 3 hours lysing adhesions during this lapro procedure.  During the j-pouch removal, 6 months later, she spent 5 hours lysing adhesions.  The removal surgery has to be done open.  My adhesions were from the open hysterectomy and open colonectomy surgeries and were the source of a great deal of pain. 

I don't know if you've had open abdominal surgeries in the past but you can see how they can be the source of painful adhesions. You have a lot to consider.  I can see it from the surgeon's perspective as there will be scarring affecting any future surgeries.  I see why you don't want to have it all removed.  

Thanks for your replies Scott and Marie, 

If I had more confidence around what was the cause of my chronic pelvic pain it might make it easier  to make a decision about the hysterectomy..i.e. if it was gynaecological I'd be more convinced about a hysterectomy. 

Also if they could guarantee they could retain an ovary I would be more confident about it, but I expect they wont know until they open up. 

.. i've had chronic pelvic pain for 3yrs+ now, and so far I just have  list of possible causes and no definitive answer..It feels quite like period pain to me... so I am hoping to test for endometriosis.. but am also concerned  about creating more scar tissue from laparoscopy. 

The pelvic pain may also be attributed to adhesions, endometrial polyp or fibroids which I also have. I also have a fistula, cuffitis, and diversion pouchitis... but don't think these are the source of this pain....?

Saff, that’s at least a better reason than it sounded like for the surgeon to suggest the more comprehensive procedure: that it *might* get you out of pain. Perhaps they could check for endometriosis during the pouch removal procedure, instead of a separate laparoscopy?

What is the opinion of your GYN on this? Fibroids and polyps may contribute to pelvic pain, but it is not a given. If your GYN considers a hysterectomy reasonable at the time of pouch removal, if your are headed in that direction ultimately, That would help me be more on board. I am all in favor of making use of anesthesia and “being in the area,” but only if it is indicated. To be sure, doing both at once would be much more simplified. Adhesions may even be so advanced that there may be bo choice other than including a hysterctomy. I do recall that I was told a hysterectomy might be needed during pouch construction if there were large fibroids making the uterus impossible to work around.

You can go on HRT if at least one ovary cannot be salvaged. You do not need both.

Jan

Thanks Jan and Scott for you added replies, yes I am seeing the gyno next week.. so hopefully give me more clarity again on it all.. I will add your thoughts to my growing list of questions  for him .THanks  

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.

HI Mchi, sorry for my late reply - I only just saw you had responded. This is really useful advice. Yes I think am coming around to doing it all at once - I have  a number of gynae issues  which are possible causes for ongoing pelvic pain - so now I am just getting familiar with the options around hysterectomy. So much to process for these big surgeries. 

This reply may come a little late, but my story may help with your decision if you haven’t already made it.  After all of my surgeries, my uterus literally fell. I was told that some of the connective tissue that attached my colon also held my uterus. Inevitably my gynecologist suggested I have my uterus removed because I was no longer using it, and it dropping was causing me issues. I did keep my ovaries however.

Ok thanks for sharing your experience Jody, that wasnt something I had on my radar at all!