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11 replies

Hysterectomy and worry

L lhh65Member
Hi ~

I have posted a couple times about the problems I was having with fibroids and that a hysterectomy was likely. During the summer, my problem got worse, and the fibroid that is the size of a large grapefruit started to show some necrosis (so big it's outliving its blood supply), and my pain went through the roof. After visiting the ER one Sunday and then seeing my gyno and my colorectal surgeon and trying to see if I was a candidate for a less-invasive procedure to take care of these, I'm left with only one choice: a full hysterectomy. For many reasons, it's the only choice. Thankfully, the surgery will be done by a gyno-oncologist who is at the same medical center as the colorectal surgeon who did my J-pouch surgeries (colectomy was 2011), and he will also be in on the surgery. It's will be on Oct. 22.

I am very nervous about this, as this is my 4th abdo surgery in 2 years, and I have had big complications with my last 2 surgeries: the takedown and an incisional hernia repair, both in 2012. My colorectal surgeon had told me to explore all options before having more abdominal surgery, and I have. Because I had ileus the last two times, it would not be a surprise to have it happen again. Surgeon warned me. Plus, this one fibroid is so big and in a bad place (top of uterus), and I'm so concerned about damage to my small intestine. The last couple weeks I have had some days with such pain and vomiting because of the pressure it's putting on my intestine.

I know hysterectomies can be a bit of a problem/more risky for those with J-pouches, and I'm also concerned about my J-pouch after...if incontinence will become a problem -- which to this point it has, thankfully, not been.

So if anyone has any words of encouragement, I will happily take them. Otherwise, think good thoughts, please -- as there is also some concern that this might be more than a simple fibroid.

Thanks for listening,
Laurie
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C CeeeeCeeeeMember
A little over a year ago I had a complete hysterectomy because I seemed to be growing cysts on one ovary. I got second and third opinions and all agreed it was a necessary surgery. I, too, had a gyn/oncologist perform the surgery. He was "hell bent" on doing it laparoscopically. My colorectal surgeon said I had too many adhesions to do it this way and it should be performed "open". I told the surgeon. He didn't seem to take this as a problem. When I was in the pre-op area on the day of the surgery, my gyn-surgeon told me he was going to try to do it laparoscopically. I told him I would not hold it against him at all if he needed to open me up. It just so happened my colorectal surgeon was in the pre-op area with another patient. I asked a nurse to tell him I'd love to speak to him for a minute. When he came into my pre-op area I shared my concerns. I asked if he would speak to my gyn-surgeon. I never found out if he did. What I do know is that the gyn-surgeon tried to do it laparoscopically (I had the little puncture marks as proof) but ended up opening me along the same scar line as my proctocolectomy scar. It healed quickly and my surgery was a breeze! Almost no discomfort and my J-pouch resumed its function within hours. I, too, had great fears of having an accidental injury while under surgery. No problem whatsoever. I felt great from the get-go! It sounds like you are under great care. I hope you have the same outcome I had. Oh, I had this surgery when I was 72 years old. Age wasn't a factor, apparently! Best wishes!
TE MarieTE MarieMember
I had hysterectomy 14 years before my j-pouch surgeries and let the fibroids get so large they had to do it open. It was a breeze compared to the j-pouch surgeries as they don't have to go very far in to take it out. I also had a whole host of adhesions from the hysterectomy noted by my surgeon so all of my surgeries have been open. BTW, I didn't have my ovaries removed until my colonectomy. They'd finally quit working so as long as he was in there I had him take them out too. No ovarian cancer worries in the future.

Things could be worse if your female parts have shifted since your j-pouch surgeries. I hope they have done CT scans or some kind of imaging tests to see if that is the case. Having your C/R surgeon in the operating room is the best choice. Good Luck.
L lhh65Member
Hello again ~
Thank you for the replies, the encouragement, the information. Yes, my gyno surgeon is planning/hoping to do it with DaVinci robot lap. but I, too, have reservations and have told him, if he needs to do open, not to hesitate. I don't care about the scars, though I realize of course that recovery is harder. But the one fibroid is really big and my uterus has shifted to the left in a big way. The symptoms I have been having are scary.
I will let you know how it goes.

Sometimes I get so darn scared about what I will be told when I wake up; getting through this next week will be tough, but with so much to do to get my family/house ready, I'm sure it will go quickly. I am a bit incredulous that I'm heading into OR again but, as I always say, I'm so lucky in so many ways (good doctors, good insurance, supportive family)...and better me than one of my kids!

Take care and thanks,
Laurie
Scott FScott FMember
I had DaVinci/laparoscopic surgery a few years ago. It was a different procedure, though more complicated than a hysterectomy. The surgeon said he had to work around some adhesions from my pouch surgery, but everything went fine, and I went home the following morning. If you're confident that you chose a good surgeon, then I'd just recommend bringing a positive attitude to the hospital with you. Getting rid of those fibroids should bring a lot of relief.
L lhh65Member
Hello ~ I said I would check back in after my surgery, which was two weeks ago. The surgery went OK but recovery has not been without complications...which continue and now my pouch seems to be involved.

Anyway, the surgery was OK, though they were in there for 4 hours, versus the 2.5 hours expected. Things were a mess. The largest fibroid weighed 1.2 pounds. And despite it being done laparoscopically, first few post-surgery days were horrific with pain. I have 6 small incisions....my abdomen looks like target practice, though I honestly don't care about that. But they removed my very large uterus and everything else vaginally and that has caused some problems. I ended up in ER 4 a.m. Saturday because of severe bleeding. But I won't go into that.

Onto the pouch stuff. I was in hospital four days (pretty short stay for me) because things took a while to wake up -- but fortunately not full-blown ileus this time. By the time I finally made the "passed gas" milestone on day 4 I was in awful pain. But then when I got home the next it was worse again: nausea, vomiting, pain. Ended up back getting fluids and electrolytes on that Monday.

But NOW since after this severe bleeding episode, blamed on an external hematoma(not convinced about that), I have been having severe pangs of mid to lower back pain that seems to be related to pouch -- though it's not the normal gas-related lower back pain. I am concerned maybe I have an internal hematoma or that something from surgery is now affecting my pouch. The vaginal delivery of the uterus, etc., was traumatic and did damage externally, so I'm wondering if there is trauma inside, too. Not sure.
I see my gyno surgeon tomorrow; I'm thinking he is going to order a CT scan or something along those lines.

Anyway, that's where things stand right now....

Thanks, Laurie
Jan DollarJan DollarModerator, RN, retired
Seems like things are never simple or easy with us, Laurie. Sorry you are having a tough time post op. I also had a lot of pain with lapro surgery. The only difference I noticed was the smaller incisions, and no big wound infection. No matter hw net and tidy it is on the outside, it is what goes on inside that really matters. You had some big fibroids!

I agree that a CT may be in order to see what is causing your new pain. Hopefully it is not another hematoma, as they can take a long while to resolve and get absorbed.

Hope you get feeling better soon.

Jan Smiler

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