I do know that just having a J pouch decreases a woman's fertility.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860095/

I was able to conceive one child.

9 months after she was born, I had a large mucinous cyst form on my left ovary. The pain was shocking with it. It did at first start out as a very dull pain, then it worsened to a sharp pain that doubled me over at work.

It had to be surgically removed. No chance for laparoscopic surgery for me; too much scar tissue.

A very good gyne fertility physician and surgeon removed it and 1/2 of my ovary. They had a colorectal surgeon on board "in case," but didn't need them, and the pouch was fine. I'd also had a C section the previous year that didn't hurt my pouch. C sections are considered safer for pouch patients, though there are women who deliver vaginally with them; I didn't want the risk to tearing into the pouch or higher levels of incontinence associated with that, so I took the C section surgical risk over it.

After my surgery, the surgeon came out, asked if my daughter was my naturally born daughter (yes). Said my kid was "an act of divine intervention" and that "she has so much scar tissue, she shouldn't be able to have kids." Told me later that he freed up my left ovary from the scar tissue, after removing the cyst (it had been looped and entrapped around my bowels), but that he left my right ovary alone, because it was so caught up in my scar tissue. He told me I was a good candidate for IVF, being as I'd carried a child successfully, but that I'd likely never naturally conceive again; he was right. Also said I was at a high risk for ectopic pregnancies, related to the scar tissue.

Not that I have a lot of medical advice to give you but that you really need those cysts out. I couldn't function with mine, it was so painful. Have they said they'd have to take the ovaries out? My doc only took part of mine out, and my cyst was very large, too. Could you not freeze your eggs, to give you the option of IVF in the future?

You're from PA. I was originally from the Pittsburgh area. Do you go to UPMC? I still see my surgeon there; he's working up to retiring, though. My cyst surgery was done at WVUH with the fertility specialist known as "the baby maker," because of his track record.

All that pain you are having is likely the cysts, and with them gone, I'm sure you would feel much, much better.

I saw Dr. Comerci (gyneoncologist)at UPMC Passavant and Magee.
When the cysts were 'only'~9x8cm he consulted with a colorectal
surgeon on staff and they collectively agreed to 'wait and see'.
Now that they have doubled in size and are becoming more
painful, I'm fairly certain that they will push for
surgery. Every Dr that I see seems terrified of me and my freakish anatomy.
At the time of my last consult 06/2012, the doctor
was concerned not only for the integrity of the pouch but also the
preservation of fertility. He seemed convinced that the Right ovary would need
complete removal but couldn't be sure about the Left. I suppose the
chances of opening me up and just peeking around is unlikely. I always
feel like all of my surgeries have been a roll of the
dice. I guess this one will be no exception. If nothing else
it's consistent...

I am so sorry to hear of your struggles with cysts. I've only had one and it was small compared to yours, but the pain was horrible. And many of us can relate to your feeling that your body is betraying you; I'm so sorry.

As to the medical community reacting as though you are freakish, this sounds really bad! Is there any chance of you switching treatment centers to one more accustomed to working with Pouchers, or even getting an appointment at the Cleveland Clinic? The one thing that has really helped me hold together through many rounds of awful surgeries, experimental treatments, and disappointments has been my doctors and surgical team who are so empathetic and professional. It really makes a difference.

Sorry I can't offer any "real" help or insight; but know that you are very much heard.

Gin

Annie,
I had a lot of problems with ovarian cysts in my 30's...they didn't want to touch me until I ended up with Salpangitis and they rolled me into O.R. fast.
The surgeon saved my ovaries, removed the cysts and cleaned out the tube...hoping to return me to fertility.
It sort of worked.
What he did next was to put me on progesterone on a continous basis for 3yrs to stop my periods (counter productive if you are trying to get pregnant, I know but maybe they could do a shorter run)...it stopped the cysts from forming or returning.
Most surgeons would have thrown it all in the garbage but my surgeon was great and refused to limit my options.
A good, understanding surgeon should do their best to salvage everything possible.
Look into the prolonged use of progesterone instead of surgery if at all possible...it helps to shrink the cysts although yours may be way too far gone for that.
Sharon

My initial surgeon who created my J pouch, Dr. Schraut, is still on staff at UPMC, and he was excellent. I still see him. Perhaps you could consult with him? I know quite a few people who have gone to him, who like him well.

I'm surprised they think of you as "freakish," because the J pouch surgery is done at UPMC (Dr. Schraut came to UPMC in 1990 from the Chicago Clinic, and was the reason I didn't have to go to Cleveland for the surgery back then in 1991).

The GI I'm seeing is also at UPMC, but I'm new to him... But he takes on a lot of Dr. Schraut's patients - his name is Reguiero... I like him so far; he's doing my scopes tomorrow.

Thank you ALL for your responses! They are helpful especially in that they make me feel less alone in all this. DH is a champ and is
very empathetic and attentive, but he is also afraid for me, and is struggling to understand the whole thing.
I should have been more clear when saying the that the doctors that make me feel like a freak are not GI or colorectal surgeons. They are PCP's, Gyn's, and ER doctors. Everyone that I've had contact with in GI at Jefferson U, UPMC, and Cleveland Clinic have been exceptional.
I was in the ER for the cyst pain Friday night and I started to cry when the Dr asked if I still had my appendix?!?! He also gave me a disbelieving look about the severity of the cyst pain before he saw the MRI. He said that unless they're more than 2cm, they're generally not that painful. Well, I wouldn't know otherwise because they're 8-9 x's that size. Fortunately upon seeing the MRI, he changed his tune and became incredibly sympathetic and actively tried to manage my pain.
I have wondered about Progesterone therapy and why it hasn't been recommended to me. I will have to do a little independent research on that.
We're being faced with the same 'decision' as in the past with my colectomy, 'you can plan for surgery in a controlled, well-planned environment, or you can wait until it's a life threatening emergency and have a random general surgeon go in chopping like top chef'. Either way it's not much of a choice.

Annie,
you have to be your own best advocat and fight for your body, health and fertility...no one is going to fight for you (or rarely so)...tell them that the options that they are offering are unacceptable and that you want other choices (if and when possible)...as long as you life and you health are not being damaged (not counting the pain) then fight for the other options...Surgeons are there to cut, that is their job...so you may need to speak with a fertility specialist or an obs-gyn who believes in treatments other than surgical.
Don't give up the good fight...
Sharon

annie as a pittsburgh person myself... I might suggest that you go to Cleveland and at least get a consult. The colorectal surgery jpouch specialists ARE in Cleveland and they seem to work very well with their colleagues in other areas.. like gyn. and urogyn, etc.. In fact I have had a urogyn and cr surgeon together in the operating room for one of the many surgeries I had at CC.

The reason I ended up at CC was because of prior cr surgery problems done by some pittsburgh cr surgeons... both of which surgeons are now the primary CR surgeons at UPMC. I know others who experienced similar situations and have ended up at CC due to problems created locally.

As for IBD GI docs... rachel.. Dr. REguerio is FABULOUS. He was my first doc to care for me when I got UC... and I recently switched back to him for my local GI care. I don't know how much jpouch problem knowledge he has, but he does know the pre-surgery IBD stuff. And he has amazing bedside manner. He does tend to toss people to others for nutrition etc.. things.. but seems they all do nowadays.

So Annie.. my "medical advice" to you is to be a strong demanding advocate and seek the best care possible. And in particular care where teams of different experts WORK well together.

Reguiero seems to be in the know with pouches. In fact, in some online searches, his name was tagged to some pouch research. I feel pretty ok with him; he seems awfully thorough.

I have an appointment scheduled in Cleveland Clinic with Dr. Mona Orady. Anyone know her or of her?