recto-vaginal fistula due to childbirth with continuing issues after 9 years

Hi everybody, i'm glad i'm not the only one going through a rvf. I've had one for 15 years also. I too have been poked and prodded throughout the years. At first it was like some of you said, the size of a pin head. You can tell by the sound of the air coming out. But after 15 years it has grown. The air is free flowing and the sound is pronounced. I have been socially stigmatized, since I can't be in close proximity to people because of the gas sound and smell. My quality of life has gone way down as I can't be in quiet settings due to the air. In the beginning when the tear first occurred it was maybe several years after my child was born.

I used to wear those hard OB tampons which i think pushed through an already weak area due to tearing at child birth. I didn't even know what it was for years. I thought it was just vaginal air. Doctors have not been able to find the tear so far and some have told me to just "live with it". terrible to have doctors who won't help. I have no insurance, so i need to find out just how much the procedure and hospital stay will cost. I am sad a lot and cry and am embarrassed by this malady. I can't even look for a job because of the rvf. I can't remember what it was like not to have air and some fecal matter coming out of my vagina. It wears the mind down. So, I'm gonna call yet another hospital, and see if they can help.

I want to be normal again. I've never written a post before but I had to add my voice to this conversation. Thanks for listening.

:-( I too have had a RVF which originally occured 20 years ago with the birth of my first child. It was repaired 18 months later, with no complcations. Now 18 1/2 years later it was reopened. Had it repaired in September 2010 with plug, which failed almost immediately. During the time I was waiting for the second repair to be done it opened about 4 times larger than it was before. In November 2010 I underwent another repair using mesh like allograft. It also failed within a week. Now they want to do another surgery involving ileostomy, before trying another repair. I am much worse than before. Constant pain, I know I stink, I am constantly doing sitz bathes or showers. Both surgeries were done in Lexington Ky by two different surgeons who are collegues. I am trying to find a good colorectal surgeon in Louisville KY. Please if anyone has any information on any good surgeon there do not hesitate to contact me. I am about to just give up!! I can not take much more of this. Out of money, had to resign my job, don't know if I even qualify for disability or not. I have tried to find a support group, so that I can talk to someone who understands me. I am a prisoner in my own body and home. I can't go anywhere, because I am constantly in a mess. This does not only affect your body, but it also takes a toll on your mind. Thanks for allowing me to vent.

I too am dealing with an rvf from childbirth. I have my initial apt with a colorectal surgeon in a few weeks. What types of surgeries did u ladies have? What was recovery like? To the previous poster, do they know why ur initial repair reopened? Any input would be helpful, im pretty nervous and have only heard negatives about this. Thanks!

I have no idea why after 18 1/2 years that it reopened. The only thing that I have been told is that scar tissue is extremely thin and that perhaps having a hysterectomy in my early thirties and going through an early menopause might have caused the tissue to have become thinner. I have read stories of other peoples reopening after years of being closed. They checked me for crohns disease but thank God I don't have it. I do however have IBS. Perhaps that too has helped, by keeping it irritated and caused it to thin at a faster rate. All I know is that I am facing more surgeries, including an iloestomy and then another repair. This condition has definately taken its toll on my emotional health, not to mention the phyical problems. Good luck with your decision.

Hi everyone! I too am an RVF sufferer for almost 3 years. 1 week after my adorable 6.7 baby's birth I experienced the "oh so embarrassing" symptoms of RVF. At first my fistula was big, but 3 month later when I saw the specialist for pelvic floor dysfunction it shrank to a pin-size. I had a repair 1 year later that failed, and then a second failed repair with laser via colonoscopy (NEVER TRY THAT! SOME INEXPERIENCED GASTROENTEROLOGIST THAT WAS SUPPOSED TO TEST ME FOR CROHNS DESEASE DECIDED THAT IT'S AN EFFECTIVE WAY TO REPAIR A FISTULA. AND NOW MY FISTULA DOUBLED ITS SIZE AFTER REOPENING). my fistula is now a little bigger than a pin head size. And I need your opinion: I'm now expecting a baby. Did anyone with an unrepaired fistula have a successful natural delivery? I know that after a successful repair you need a C-section so not to cause the fistula to reopen. But if the fistula is still open, is there a chance that it will not get bigger? The reason I have such high hopes is that I've seen a top doctor at MT Sinai Medical Center (hopefully after the delivery of this baby he will repair my fistula) He told me that my fistula has a 90% chance of of not getting bigger with a natural delivery, though he would still recommend c-section. Am I out of my mind if I try natural? Has anyone ever done that?

I have had rvf for 26 years had it repaired in oct of 2010 it was a successfull surgery as of right now. my rvf came when I had the first child I lived with it for 26 years. I had 3 more children after that vaginally it did seem as if each birth made the fistula just alittle bit bigger not a drastic change but a little bit bigger. I wish I would have went much sooner to have the repair done. I have learned a few things.
only see a colorectal surgeon period. plan on taking time off from work about 1-2 months you really cant sit comfortable for a period of time after surgery ( my surgery was called the martius graft ) do not lift anything heavy - I mean no more than 5-10 lbs anything that causes pressure in that area can be detimental. do not get constipated but do not get explosive diareaha either. make sure you are not anemic your body cant heal very well if you are. if your fistula is injury related vs disease related the odds are pretty good it will be a success. and I had some air and stool come through for almost 3 weeks post op befor my healing completed. this is a embarrassing problem but take care of while you are young and healthy. I hpe this info can help somebody out there

I received a RVF in October 2009 after delivering my gorgeous son in New Zealand. I had a private obstrecian whom i paid for myself and this still happened!! It was disgusting!!!!!!! I understand completely what everyone is saying about how they felt. i had 2 surgeries to repair it which both failed due to the surgeon not realizing the anal sphincter was in fact torn and damged to a third of the sphincter. I have had 2 more surgeries since under a different surgeon. 4 surgeries in total, a colostomy and months of disgust, financial struggle, times missing out on ym son i am now healed. I hope everyone out there is finding a solution too. Take care all.
:-D

I have a 4th degree median laceration and after a week my suture give way already. I found out that I have RVF and fecal incontinence as well. Having RVF, do you think is there any malpractice or our doctor does not take the proper care that we need during our delivery?

Hello - I was going to go that route as well 2 yrs ago - no lawyer would call back. I left emails and voicemails.
From what I gather the doctors stick together and would be VERY hard to sue. :0(

Hi - well not to be a bummer - but I've had a rv fistula for 25 years . liveable.I 've always understood that it would be impossible to completely rid of, since it is a new route that my body wants to use now. after a first, sad year I had it repaired - not well. the new md (not the obstetrician) said he couldnt even see it. said I should have another child and he could repair it better then. he delivered my second child, and denied ever saying such a thing. said that, I said, I wasn;t going to have a second child. makes it hard to trust a doctor.
had a nervous breakdown. went to the big city, for the second repair - she was demeaning and derogatory after the surgery - I gather she didn;t do a good job - said after, that she told me she would just irritate the area and stretch it out and it would heal better. said she did not promise to repair it.

it did heal better and I lived with it for about another 19 years. once or twice after diarrhea then constipation w/antibiotics for other events,, and /or intercourse. it broke through, but always repaired itself. I manage the whole scenario with no meds, especially no antibiotics or pain killers for any reason. I empty my bowels, courtesy of diet and getting up 1 & 1/2 hrs before leaving the house. I work full time.

I found Jesus in 1996. Certainly this long term health concern contributed to my search for truth.

recently, in Jan 2011 I had a bad cold and sneezed about a hundred times one day. the next day the fistula had torn through and it's not closing this time. the problem is, I'm genuinely afraid to have intercourse with my husband of 28 years, for fear of it ripping further. so naturally, he is now concerned and urging and supporting me in better surgery. our kids are now 21 and 25 and out of the house. he'd like sex again !

so that's that. it would be nice to be rid of it !! thanks for writing and reading ! You will all be in my prayers for help + healing ! NL

Hi everyone. I thought I was alone out here. But it looks like I'm not. I have had a fistula for 23 years after giving birth to twins. I don't pass a lot of gas or feces, but the odor is awful. It reminds me of the smell of tunafish. I knew I had a fistula within months of giving birth, but the doctor I saw said that if I were his daughter, he would advise me to do nothing. I will never take that advice again. Anyway, I have seen a colo-rectal surgeon who did find that the fistula was still there. I, in fact, have a "band" running through the fistula right now and am seeing this surgeon in a couple of weeks to talk about repairing the fistula.

Hi Everyone,
I want to add that I too had (as in past tense) an RVF back 2 yrs ago. It was avery very very bad birth with tearing to the billionth degree. I had a single repair done 5 weeks after I gave birth to my baby and I fine now. The surgery recovery was far worse than the recovery from having birth. Odd. But I wanted to give positive feedback. I was fixed. They did the "flap" approach which worked incredibly well. I do still have pain during intercourse & sometimes I have a twinge now and then...I swear my rectum is in a different location...strange, I know but I'll take that over having further issues.
The Boston area has the best specialists. I read on here all the time of people flying in and out of places. I a month ago put the doctors name and I think they stripped my post because of it.

My doctor had a hard time finding it as well but I refused to leave the exam until she did. I had multiple doctors called into the room as if I was a lepar...it was awfully embarrassing. I do recall those weeks being the worst weeks of my life. A new baby, I felt like a freak, my body was nowhere near what it used to be prior to the baby and now I had this freakish thing to deal with? I had post partum and I honestly didn't think I could live with it all. What a whirl wind.
I wish the best for you all here.
Please know there are others that are healed that do not come to this site to confirm this.
There is hope and keep positive.

Hi everyone...I'm so glad I found this site! I've been dealing with my RVF for almost 9 months now. Like many of you, it was caused by the birth of my child - they used the vacuum and basically tore me a now a##hole!

As a result, I was given a temporary ileostomy a week after the birth. It was deemed an emergency by then because I had such a bad infection from the stool passing through the fistula that I almost became septic. It took almost a week for me to figure out and convince myself that I was in fact passing stool through the wrong place and by then, I had a serious infection. I got into to see an OB the same week, who then sent me back to the hospital to have an emergency ileostomy. I was told that there was no way they could repair the tear with it in it's current state and to let it continue on like that would only make it worse. So I had the ileostomy and as much as it sucks, I'm glad I don't have to deal with constant infections and all the mess. I have to say, I am simply amazed and rather shocked that so many of you live with your fistulas and haven't had either an ileostomy or a colostomy to prevent infection! I thought I'd be seeing all kinds of people talking about how they had to have one or the other because of the fistula! I can't believe that anyone could function like that!

I have now had two surgeries to repair my RVF. The first was unsuccessful and I just had the second less than a week ago, so I'm not 100% sure if it's fixed yet because things are still swollen. In case anyone is wondering how I would know it was fixed, well, when you have an ostomy, your bowels are still active and produce mucous...so instead of stool, I pass that...and if it comes out the wrong place, I'll know the surgery wasn't successful. I've been told there are a number of ways to fix it and at this point I almost don't care what they have to do, just so long as they fix it.

If you have a RVF or think you might have one, it is absolutely essential that you see a colorectal specialist. I live in Ontario Canada and, though I don't know if this is standard or not, I was told that the OB wouldn't be the one doing any of the repair work. OB's often do do repair work, but I think in cases where it's all the way through, you need more than just an OB. I mean, when it crosses the boundary between vagina and bum, you're kinda leaving the OB's jurisdiction lol I have a fantastic doctor who has been doing his best to fix me up and make me feel better about things in between. Finding a good doctor is the first step on the road to recovery! I realize good doctors are hard to find, but it's so important to find someone who really knows what they're doing.

Wow, it is nice to find some people who have gone through this and who are talking about this. I too could only find information on fistulas in third world countries and how is "doesn't happen in places like the US".

I have a fistula too from my first child and it wasn't diagnosed until over 2 1/2 years later, when I was pregnant and horrified by the discovery of feces coming from you know where. I knew right away when I had occurred though because I had been suffering from a feeling of uncontrollable gas coming from my vagina, but thought that it was just a wreck down there and never would have guessed that it actually was coming from there. It has certainly not been easy, especially going through most of my pregnancy with such awful symptoms and then putting off surgery because it wasn't really realistic with a newborn.

Anyway, when finding out about all of this I was under the impression that it is extremely rare. I certainly wished that my OB would have saved me from so much humiliation and anguish in the first place, but wasn't sure if I should blame her or not. Recently I read that when women have severe tears, which I did, they are supposed to specifically check for a fistula. But this was not an official source of information. Does anyone know what the required procedures are? Can anyone tell me if their doctors diagnosed them right away or did you find out much later? By the way when my ob looked after I told her what was happening she still did not see it. When the rectal surgeon had a look he was really surprised that she didn't see it and said that it was quite large.

I developed a RVF within a week of the birth of my son in April 2008.  The surgeon I was referred to said to wait to see if it healed on it's own.  So we waited 6 months - it healed all but the size of a pencil eraser.  In Sept 2008 he performed surgery using a "plug" made of skin.  It seemed to take - my follow up appointments went well - but by Feb of 2009 the gas started again and when I had soft stool it passed through.  When I went back in all I was told is "that sometimes happens and we can try it again".  Now who wants to hear that after paying $10,000 in bills and feeling like I went through labor again.  My son is now 3.  I can probably count on both hands the number of times that my husband and I have had intercourse since this all started.  He is loosing patience with my lack of desire and mood swings.  He just doesn't seem to understand.  If sex actually felt good I might do it but it either has no feeling or hurts.  Last year at my annual my OB said that it wouldn't affect a future pregnancy but he would definately suggest a c-section.  He didn't think that they would be able to do another repair at that time - so that means 2 surgeries!  I think that I would like to have another child, but am terrified of the thought of going through all this again. I'm wondering if anyone else has had a repair then had a natural birth or c-section and did you have problems the 2nd time around.  I live in Central Illinois and am not very satisfied with the surgeon I went to the first time.  If you are from the Peoria-Bloomington area could you let me know who your doctor was.  The male doctors just don't seem to have a lot of sympathy or understanding.  I'm considering going to a female for a second opinion.