Living with a fistula is hell

[VVF]

I have a vesicovaginal fistula and have had it for the last 3 years.  A vaginal repair was attempted and failed.  I have been walking around with a Foley for the past 3 years.  I am not sure how much longer I am willing to continue with this but I don't see too many solutions.  I have been looking for some sort of peer support.  The only thing I keep coming up with is that I should have sympathy for our poor fistula sisters in Africa.  I live 10 minutes from NYC.  If fistulas cause isolation and shunning in third world countries try living in NYC.  I have become a prisoner of my body, I can't go to anyone's home for fear of leaking, I am only comfortable going out if I can take my mobility scooter because then I don't have to stand up to move around.  

My urogynecologist isn't giving me very good odds for the success of another surgery.  What they are thinking about is a hystorectomy and a "multiflap" repair reducing the size of the bladder done robotically.  There is one other major factor working against me.  I am very obese.  I have lost about 150 lbs since the first surgery. Almost everyone except my urogynecologist and hematologist aren't thrilled about my trying another procedure.  My husband is dead set against it.  Is there any other solution that you can suggest?  Adult diapers and supplementary incontinence pads are not keeping things under control for me.  I never know how or when I am going to leak.

My questions are two-fold, is there any kind of peer support group that you could recommend and is there anything that you know of besides the robotic surgery that is being proposed without great odds.  Please help! I need to improve the quality of my life!!

[Bruce S. Crawford, MD]

So sorry to hear about your situation.  I have a fair bit of experience with vesicovaginal fistula repair in the US and in West Africa.  I would strongly encourage you to seek an additional opinion regarding a second attempt at repair.  I would suggest you contact Dr. Charles Ascher-Walsh.  He is a very experienced Urogynecologist at Mt Sini  who I have had the good fortune to work with in Niger several times over the last few years.  His phone number is 212 241-7952 or you can reach his assistant at 212 241-7809.  Good luck and let me know what transpires.  Also you can check out www.nigerfistula.org to see what the International Orginization for Women and Developement is doing about obstetric fistula in Africa

[VVF]

Thank you both for your kind words.  I am very familar with Dr. Ascher-Walsh he and my Urogynacologist Michael Vardy have been asssociates for many years.  As a matter of fact Dr. Ascher-Walsh did my first surgery.  Unfortunately I presented to him at that time with every disadvantage and difficulty imagineable or possible.  At that time in my life I was around 400 lbs., the fistula is located very high in my bladder, I was very anemic and incapable of healing properly.  With all of those obstacles it is totally understandable that the first attempt was unsuccessful.
Now, three years later, I have reached the point where I am at the end of my patience and my ability to cope with this fistula.  This time I will be presenting weighing 150 lbs less than at the first surgery.  I am still not skinny but certainly a great improvement, My anemia and ability to heal are under better control thanks to my wonderful hemotologist Dr. Giuseppe Condemi.  Technology has given us a newer method for the repair with DaVinci Robotic Surgery.
Friday when I spoke with Dr. Ascher-Walsh I mentioned your vote of confidence to him.  He appreciated your comments suggesting that he was THE doctor of choice for my situation.
I have JUST dicided to go ahead and let Drs.Vardy & Ascher-Walsh do the surgery again abdominally with the DaVinci Robotic apparatus.  I will be calling my team of doctors tomorrow to let them all know that I have finally decided to go ahead and let them do the procedure again.  I will keep you all posted as to the progress of my decision and our successes.  

[JackieRose383]

I'm sorry you have to deal with this. I don't know exactly what you are going through but I do understand how medical conditions can be very isolating. Hopefully the doctor mentioned above can help you, and maybe connecting with other women, even online, will help you feel less isolated.