Hi,

I recently saw a gynecologist to discuss having a hysterectomy because I have a large uterine fibroid as well as hellish periods from the fibriod as well as menopause. The doctor told me the surgery was too complicated. It may compromise my pouch etc. I do not want to risk any mistakes that would result in a permanent ostomy. Has anyone out there had a hysterectomy? I would like to know of other women's experiences.

I have never had a hysterectomy but have issues similar to yours (fibroids, heavy periods, entering menopause, enlarged uterus). I even had a gyno surgeon consult prior to surgery and insisted he be on board the day of surgery for my jpouch as my uterus is so enlarged I was concerned I would need a hysterectomy for the pouch or a removal of the fibroid at the same time in order to have enough room for the pouch (silly as that may sound), but I needed neither.

I firmly recall with many of my colorectal surgeon visits, not one of them wanted to entertain the removal of my uterus etc. as part of the jpouch surgery because the jpouch surgery is complex enough and they were concerned about fistulas forming as a result etc. The only surgeon that brought in a gyno was the one I went with as he felt if I needed fibroid removal surgery that this could have been done at the same time and the gyno surgeon was in the room the day of surgery in case it was needed.

If I could suggest anything, it would be to try and hold off on this if you could. The fibroids may shrink during menopause and maybe hormones/birth control/D and C can help with the menstrual bleeding while you are going through this.

If I could avoid the hysterectomy, I would because I would not have an additional invasive surgery like a hysterectomy with a jpouch in. I just think it is too risky and too many things can go wrong, but just my personal opinion. I am sure others on the board have gone through this can can better comment on it.

Thanks so much for your input. I agree that another invasive surgery is probably not a great idea. I do want to clarify that my j-pouch surgery was in 1998. I do not need the surgeries to be done concurrently. Overall my pouch is functioning pretty well as in I am finally over 10 years of solid pouchitis. I have just recently moved to New Zealand and the stress of the move has kicked up some problems. The menopuase and periods are just making me more miserable. Any other insight to this situation would be so appreciated as I want to address my problems as a whole.

Barty,
I had ovarian cysts and fibroms (is it the same thing?) but my surgeon did not want to remove my uterus...they did work on the filopian tube (salpangitis) but stuck to hormonal treatments to treat the cysts and fibroms...it worked wonders...they put me on progesterone for 3yrs post op and it did the trick...it got rid of the cysts and fibroms and stopped my period in its tracks...without messy surgery. When my period came back the cysts didn't.
If not, I think that Ceeeceee had a hysterectomy done with no problem and no complications...you might want to PM her.
Sharon

I am currently looking forward (sarcasm intended) to having my ovary and tube removed due to a cyst that has been monitored for about 2 years and is now changing enough to cause concern. I made sure I got a doc recommend from my j-pouch doctor, but am still nervous. The doc who will do the surgery said they would stay away from the uterus as it is too close to the pouch. I am scared, but am more scared of the potential for cancer, so I will do the surgery.

I had hellish bleeding too - it was pretty non-stop spotting. Sometimes the spotting was heavier than at other times. Then I started having flooding - and I mean flooding. I had a D&C with ablation and was one of the lucky ones because I have not bled since. That was 2 years ago. The surgery was as easy as a surgery can be. I felt great the day of and by the next day was back at the gym.

If you have to get surgery, find the most experienced person you can find and definitely consult with you j-pouch doc 1st.

Good luck.

Do you know Charis? She runs http://fullfrontalostomy.com/ I am almost certain she had a hysterectomy with her j-pouch surgery. Or she had it with one of her ostomy surgeries. I forget, but I know she had both. She no longer has her j-pouch as it gave her issues, so she has a permanent ostomy now. You may want to get in touch with her to ask her questions. She is super nice and helpful.

I had a complete hysterectomy (removal of uterus and both ovaries) on Dec. 15, 2011. My gyn surgeon wanted to do the procedure laparascopically but my colo-rectal surgeon told me to make sure he knew I had a j-pouch and a history of bowel obstructions (one about nine years ago) and adhesions. I told him but he still hoped to do things laparascopically. I can't tell you how frightened I was going into the surgery. First thing I did when I came out in recovery was feel for a "bag"! When I didn't find one I gave a sigh of relief. The surgeon told me he had to do the surgery "open" because adhesions wouldn't allow him to do it laparascopically. He had tried. So, I have a new scar on top of the original proctocolectomy scar running from my navak to my pubis. It has healed very quickly and my overall healing has been very fast! Pretty good for a 71 year old woman! I have since read the surgical report and learned that there were many adhesions connecting my small intestine to my abdominal wall and my urinary bladder, as well. Also, there were adhesions from my uterus to my J-pouch. The surgeon had to release those adhesions in order to remove the uterus and ovaries. Fortunately, he is a real pro. Today, I see him for my final post op exam. My J-pouch continues to function perfectly.....this after 10+ years. Best wishes!

My colo surgeon told me the large fibroid I had(size of a 4 month pregnancy), would be in his way when he tried to create the j-pouch.

Since I was hospitalized at the time, receiving blood transfusions due to blood loss from hellish periods and UC, I didn't put up much of a fight, because he told me if I'd need a hysterectomy later in life due to cancer or whatever, the pouch would be at high risk.

So, the gyno doc performed a hysterectomy first thing in the am and the colo doc took over from there. Had it all done at once.

If you need to have one done, I'd go with CeeeeCeeee's doc!

-Roni*

Hi,
So I've had my pouch for 13 years now and am currently 6 days post op from an abdominal hysterectomy due to endometriosis. I don.t know much about it as I am only a few days out but so far here is what I have learned:
This hysterectomy is one of the hardest to recover from of all my surgeries so far including the 2 caesareans I have had. Now this may be due to many things including my age (only 32 but not a teenager anymore, or because of the other scar tissue.). My gyno put me on a solid duet way too quickly and I am dealing with that now. I found my gyno to slightly clueless about the whole j-pouch thing. I've learnt to trust my instincts with all my medical things and this seems especially true with this one. Since eeturning home 3 days ago I have taken my diet back done to full fluid basically as I find any pressure from the j pouch brings pain. I also have this stran thing called constipation...which is rare for us I believe!!! Lol. So it's just a matter of time and patience for now. I have little to no appetite but it could be in my head cause I know a gas bubble for example tight now will bring me to my knees. Also, you need constant support for at least 2-3 weeks! I had a shower this morning and was so winded that I just woke up from a 4 hour nap! Please let me know if I can help in any way of if you just need a sounding board. Doctors are very helpful but there is Ning better than talking to someone who really gets it!
P.s. - still on painkillers. Ignore all typos

MelB...I'm sorry you have been having such a rough time. I'm 71 and this hysterectomy was the easiest procedure I've ever had! Even easier than having a tooth filled! I had no appetite for about a week or two and just ate/drank small amounts at a time. Also, gas was more present than when I went into surgery. I forced myself to walk several times a day and that relieved the gas. I, too, took naps and just laid low for awhile. The other day I asked my surgeon how big the uterus and two ovaries were. His answer: "As big as a hamburger patty." I can no longer look at a hamburger without almost gagging! Thanks, Doc! I hope you feel better very soon!

CeeeeCeeee - who was your doc and where?

My gynocological surgeon was Mark Rettenmaier, M.D. He is affiliated with an oncology gyn group of surgeons and I went to him upon recommendation from my own ObGyn who doesn't take my insurance. I did not have cancer. He is located in Newport Beach, California right across the street from Hoag Hospital, where I had my surgery. I am very impressed with his skill as a surgeon and with the entire office staff. My friends have used other doctors in his group with equally wonderful outcomes! Let me know if anyone wants and address/phone number.

Hi! I just had surgery - plan was to do hysterectomy b/c I developed ovarian cysts after jpouch surgery as well as the ovarian entrapment syndrome. My left ovary was trapped behind my uterus and pouch. The ob/gyn onc surgeon worked with my colo/rectal surgeon in the OR together b/c NO ONE is going anywhere near my pouch without it's maker on hand. They couldn't take the uterus b/c it had adhered to the pouch. So now I am 41 and days away from menopause hitting. I had been having issues ever since surgery #2 ( i had three stage process) and my c/r surgeon had been noting the growth of the cyst. I had several hospitalization around the time of ovulation and suffered at home quite a bit around the same time of the month. I had an issue in Nov 2011 and now two months later the cyst had grown double in size.

You are not that far from where I live. Suggestion: Make an appointment with my ObGyn surgeon who completed a hysterectomy on me on Dec. 15. Because of adhesions he had to do it open rather than lapro but he was very successful in separating everything that was adhering. He removed my uterus and both ovaries. Recovery was easy for me. Four days in the hospital and then home. No pain! No need for pain meds when I went home. I had ovarian cysts. No cancer. My J- pouch continued/continues to work perfectly! His name is Mark Rettenmaier, MD. He is in Newport Beach and operates out of Hoag Hospital...across the street from his office. Best wishes!

I agree that another invasive surgery is probably not a great idea. I do want to clarify that my j-pouch surgery was in 1998. I made sure I got a doc recommend from my j-pouch doctor, but am still nervous. The doc who will do the surgery said they would stay away from the uterus as it is too close to the pouch. The surgery was as easy as a http://www.theodoreenfield.com surgery can be. I felt great the day of and by the next day was back at the gym.