Hi there
I am 29 years old with an internal pouch due to UC. I also have three fistulas, one of which is a pouch-vaginal fistula. Here in the UK, we have been seen by an NHS (non-private) specialist hospital re. IVF. After 9 long months of trekking there and back they have now decided it would be too dangerous for me to undergo IVF due to the egg collection. I have had three operations on my abdomen and they are concerned about the amount of adhesions, along with the pouch vaginal fistula which they think means the pouch is stuck to the vagina. Their major worry is that they could perforate the bowel with the egg collection needle. They also have secondary worries about infection from the pouch vaginal fistula being passed up into the ovaries by the egg collection needle. They haven't scanned me recently but have said they don't want to take the risk. As you can guess, this was devastating news to us as we thought we were almost there. We are seeking a second opinion from a private clinic. The NHS consultant has also said he would be very worried if we went private as to whether they would have our best interests at heart.

Have any other women had this problem with worry by a consultant about egg collection and if so, did you go ahead anyway - was it a good outcome? I hope I'm not the only pouch woman with adhesions and a pouch vaginal fistula who's wanted to have IVF

Thanks!

This message has been edited. Last edited by: Sarahbp55,

Hi Sarah
I have a j-pouch, which ive had for about 14 years, I had 5 major ops and as a result lots of adhesions. I have had egg collection for IVF twice now with no problems, there is always a risk of bowel perforation and probably increased risk for us but it is still very low. I have had a rectovaginal fistula too but it was very small and has healed i was very lucky. My first IVF didnt work but my frozen cycle worked, I was very blessed with a daughter. We had a go since to try for a second child but it didnt work, we will have one more go this year. Its worth getting a private opinoin, i don't think they would do it for the money if they thought it was that much of a risk to you. Don't know where you live but we went to a clinic in London called Lister.hope this helps you.
Nikki

The Lister is where we are going in two weeks time. This makes me a little more hopeful, thanks Nikki!

Good luck, let me know what advice the lister give you and if you plan to go ahead.

Hi Nicki, we're probably going to find out Lister's decision today as our consultant James is going to the team meeting. Trying to stay positive but somehow I don't ink our chances are good.....do you remember the name of your consultant there? X

This message has been edited. Last edited by: Sarahbp55,

Good luck, is it mainly due to the fistula that they are worried about??
I saw most of the dr's at the lister, mr Abdulla who is the top man we had our consultations with him, he is very good. Also saw Marie Wren.
We are just about to start another round of IVF nearer to where we live in Epsom, this will be our 3rd and last cycle. We would love a sibling for our daughter.
Let me know what advice lister give you.
Nikki

They got a letter from my consultant ibd surgeon and Lister had a meeting today. James, my doctor has emailed me to say come off the nasal spray as there are too many questions needing answering. He wants to write to my consultant again and alsohasn't had a response from Obstetrics at Hammersmith. We are gutted, we thought we were nearly there. This is 2 years down the line now and atill no ivf, even private. He wrote in his email that he is concerned about whether the NhS would be happy picking up the bill to fix me if the egg collection goes wrong etc. it's been a bad day unfortunately. I seem to be the only pouch lady to have been rejected for ivf due to medical reasons - i'm only 29

I know this is yet another can of worms, but if this goes completely sideways, have you considered surrogacy? I know, not the same, but still....

Jan

Hi Jan,

We have been offered a cycle of ivf by Hammersmith if we use a donor egg. Problem is we don't have a donor, and I still have a smidge of hope we might still be able to do ivf with my eggs. What is so upsetting for me is knowing that I have fine eggs, they're just proving challenging to get!

I did not have the fistula issues, so I cannot speak to the risks there.

However, I had four abdominal surgeries prior to IVF - 2 step j-pouch, disconnect of j-pouch and j-pouch removal. While my clinic did have standard language about bowel perforation in the paperwork everyone got, they had no additional concerns about me. I happen to live in a very populous area with a huge medical community (Boston, MA) and the clinic had treated many other pouch and ostomy patients.

I was a bit freaked out about the bowel language in the paperwork but after discussion with my high risk OB (who I chose before I got pregnant) and my surgeon, we all agreed it was ok to try. I did two fresh cycles so had two egg retrievals without any issues.

Like I said, I didn't have as complex a situation as you do, but at least from the surgical perspective, no additional questions were raised here.

Good luck - I hope you can get some answers soon.

Hi Sarah
So sorry to hear your news, must be so frustrating for you.
Nikki

I know that this won't help and it happened 30yrs ago but after the HSG showed blocked tubes the IVF specialist refused me flat out saying that he had better chances of being able to fly out the window than I would ever have of concieving...(hubby jumped over his desk and hit him... )
After all attempts and tries at everything from herbs to massages etc I gave up.
30 yrs later I am the proud step-grandmother of 2 beautiful grand kids and step mom to 2 daughters..we each do what we have to do to fill the hole in our souls. I never adopted because of my medical & financial situation but often fostered other people's 'lost' kids...
I also proved the son-of-a-B-tch wrong. I managed to get pregnant 6xs. My own personal biology made me miscarry all of them but the kind people here did say to me that at least for the time of those pregnancies, I was a mom.
We take our consolations where we can get them.
Sharon

Just to say the Lister have agreed to treat us!!!! I started DR spray 2 days ago so it's na wait and see now. I have a really careful patient plan in place (possibly too careful) so every stage of the IVF will be reviewed before proceeding by my consultant James. So excited.

Nikki, have you started your consultation yet?

Tbh, if I hadn't had the active fistula problem, I think I would have easily been treated on the NHS so can't see you having any difficulty, especially as you have had egg collection before. At least you can be reassured knowing that if you do have problems, you could return to the Lister again?
x