Wow so many posts since I posted last. I cannot believe so many women suffer from this.
I got mine repaired 2 years back through a Uro Gynecologist. I have gone through physical therapy 3 months after the surgery till now. Things seem to be going fine.Just wanted to give an update and share a positive story
I got mine repaired 2 years back through a Uro Gynecologist. I have gone through physical therapy 3 months after the surgery till now. Things seem to be going fine.Just wanted to give an update and share a positive story
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Hello Ladies-
I have had my fistula now for nearly 8 months. I have had 3 surgeries to repair it, with no success. My fistula was caused from surgery on my colon... I had diverticulitis and my colon ruptured (this is not when the problem started). When my surgeon attempted to reattach my colon after 2.5 months with a colostomy bag, something happened. Either an instrument or a staple or something pierced through my rectal-vaginal wall. I know I didn't have the fistula prior to the second surgery, because now that I have it, blood passes from my anus when I have my period... That never happened before. My surgeon told me it would be easy to fix. My fistula is high. It was about 9 mm at the start, and now after 3 surgeries, it is about 4 mm. At least my symptoms are better, but it is still there, and I cannot make love to my husband. It is frustrating, to say the very least. My career has been put on hold, along with a lot of other things in my life.
I have found very little information on this subject. The best and most helpful information is on this message board, and others like it. Information can be found on the internet, yes, but I have found very little other than exactly what an RVF is. Considering the small success rate of repair, I think we could all agree that something needs to be done.
I am considering writing a book on this subject. Would others be willing to share stories and experiences? If you are, please contact me at _[removed]_. This is just a thought at the moment, but it's been a thought for 6 months now. If you email, please let me know of your desire to share publicly (anonymously, of course), and we can start from there.
I wish everyone here the best of luck with everything. Please keep us posted as to surgeries and/or experiences, good or bad. The more knowledge the better. Of course, we love the good news!
Good health to everyone!
I have had my fistula now for nearly 8 months. I have had 3 surgeries to repair it, with no success. My fistula was caused from surgery on my colon... I had diverticulitis and my colon ruptured (this is not when the problem started). When my surgeon attempted to reattach my colon after 2.5 months with a colostomy bag, something happened. Either an instrument or a staple or something pierced through my rectal-vaginal wall. I know I didn't have the fistula prior to the second surgery, because now that I have it, blood passes from my anus when I have my period... That never happened before. My surgeon told me it would be easy to fix. My fistula is high. It was about 9 mm at the start, and now after 3 surgeries, it is about 4 mm. At least my symptoms are better, but it is still there, and I cannot make love to my husband. It is frustrating, to say the very least. My career has been put on hold, along with a lot of other things in my life.
I have found very little information on this subject. The best and most helpful information is on this message board, and others like it. Information can be found on the internet, yes, but I have found very little other than exactly what an RVF is. Considering the small success rate of repair, I think we could all agree that something needs to be done.
I am considering writing a book on this subject. Would others be willing to share stories and experiences? If you are, please contact me at _[removed]_. This is just a thought at the moment, but it's been a thought for 6 months now. If you email, please let me know of your desire to share publicly (anonymously, of course), and we can start from there.
I wish everyone here the best of luck with everything. Please keep us posted as to surgeries and/or experiences, good or bad. The more knowledge the better. Of course, we love the good news!
Good health to everyone!
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I am also waiting to have my fistula heal. I had a sphincteroplasty a year ago and never really started moving my bowels normally when on the 9th day or so loose stool started to come through my wound and vagina. It's been a year with an ileostomy and many hospitalizations and tests later and now I'm waiting to see a Gynocologist who will try to close it from the vaginal side. I am hopeful but with all this time passing it can be hard to keep positive. It's great reading your stories of success. It's comforting to know you're not alone in this difficult journey to health. Key in my search for a better outcome was a switch of doctors. My first was completely uncaring with a matching office. The switch to my present MD has made a major difference. What keeps you all going? I have support from my husband, sister and work has been understanding. These posts have helped me be a bit more patient. Good luck to all of us!!
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I had a RVF due to childbirth in Nov 03. The Dr. that delivered caused this due to my son's head turned to the left and she kept turn in the correct position and him turning his head back to the left, so she decided to pull him out with forceps resulting and my RVF. I had her to two correction procedures that failed. Then I went to UAB hospital in Birmingham, AL and had two more procedures that failed. After the forth one failed I was referred to Dr. Kilgore(Oncology OBGYN Dr.) in Birmingham and cut through the sphinter muscle and repaired the RVF and put me in the hospital for 4 days on IV antiboitics and that last repair was a success, The last repair was done Nov 10, 2004. The first four procedures were done outpatient and I knew immediately that they failed. I think the four days in the hospital resting help with the healing process.
In Feb. 07 I gave birth to my daughter by c-section, I did not want to risk reopening the RVF. If I had known then what I know now I would have had an elected c-section with my son, due to all the surgeries and recovery time I missed alot of my son's first year that I can't get back. That has really been the hardest part.
In Feb. 07 I gave birth to my daughter by c-section, I did not want to risk reopening the RVF. If I had known then what I know now I would have had an elected c-section with my son, due to all the surgeries and recovery time I missed alot of my son's first year that I can't get back. That has really been the hardest part.
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To Guest,
I can't believe you went through 4 procedures and none of them helped. I'm glad that your final one worked for you but I would hate to have another sphincteroplasty to solve a problem that was caused by my last sphincteroplasty. Yikes. I'm waiting for my second procedure. It's taking forever to get an appointment with an OBGYN in town and I've had this ileostomy for over a year now. It does feel that there should be more available for people with this problem. It's a big deal with big repercussions. I'm glad things have gone well for you with the birth of your next baby. You've been through a lot and come out on the other side with 2 beautiful babies.
I can't believe you went through 4 procedures and none of them helped. I'm glad that your final one worked for you but I would hate to have another sphincteroplasty to solve a problem that was caused by my last sphincteroplasty. Yikes. I'm waiting for my second procedure. It's taking forever to get an appointment with an OBGYN in town and I've had this ileostomy for over a year now. It does feel that there should be more available for people with this problem. It's a big deal with big repercussions. I'm glad things have gone well for you with the birth of your next baby. You've been through a lot and come out on the other side with 2 beautiful babies.
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Hi everyone, I just had a baby 9 weeks ago and had a small hole where I tore. There was membrane coming out through it so the ob cut it out and left the very tiny hole to heal. I went back last week and he said it looked good. Just the other day I started passing gas through my vagina and so I called the nurse and she says it sounds like a fistula. I am really looking for a positive story where someone had good results. So far all I have is the minor gas issue..but I am really scared. Please someone tell me that they had success getting this fixed.
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Hello everyone
First, I would like to recommend this award winning documentary film that was aired on pbs. It is titled “a walk to beautiful”. I’m sure a lot of you may have seen it already but in case if anyone missed it... I haven’t personally experienced this problem but I am from Ethiopia and know a thing or two about how devastating this can be. This may not make much sense to you until you watch that film. It is online at http://www.pbs.org/wgbh/nova/beautiful/program.html . I found it during a research for a paper. It may help show some people that this is a problem that even overwhelmed and relatively underequipped doctors in third world countries are fixing. There is the right kind of help out there if you know where to look. The foundation is also doing a great work in assisting fistula patients. I believe the western world needs to wake up and realize how many women this actually affects and take some serious actions to minimize the risks. That takes me to my second point. I am still working on the paper and I would really appreciate it if any of you would be willing do an interview (completely anonymously) or contribute in any other way. Once I am done with this I plan to make the paper available to anyone who wants it but your real name or any way of identification won’t be on it. It surprises me how under represented this is of all women’s health issues. I think we need to talk about it a lot more so it will no longer be one of the best kept secrets of the shortcomings of the medical field. What’s happening is downright wrong and so unfair.
First, I would like to recommend this award winning documentary film that was aired on pbs. It is titled “a walk to beautiful”. I’m sure a lot of you may have seen it already but in case if anyone missed it... I haven’t personally experienced this problem but I am from Ethiopia and know a thing or two about how devastating this can be. This may not make much sense to you until you watch that film. It is online at http://www.pbs.org/wgbh/nova/beautiful/program.html . I found it during a research for a paper. It may help show some people that this is a problem that even overwhelmed and relatively underequipped doctors in third world countries are fixing. There is the right kind of help out there if you know where to look. The foundation is also doing a great work in assisting fistula patients. I believe the western world needs to wake up and realize how many women this actually affects and take some serious actions to minimize the risks. That takes me to my second point. I am still working on the paper and I would really appreciate it if any of you would be willing do an interview (completely anonymously) or contribute in any other way. Once I am done with this I plan to make the paper available to anyone who wants it but your real name or any way of identification won’t be on it. It surprises me how under represented this is of all women’s health issues. I think we need to talk about it a lot more so it will no longer be one of the best kept secrets of the shortcomings of the medical field. What’s happening is downright wrong and so unfair.
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Hi Lauren,
I have heard some positive news that some fistulas do get fixed. Mostly I think they are a struggle and require patience and a good surgeon. I'm going to a second try at the end of this month and am hoping that's it. I've waited a year with a ostomy so am really looking forward to have it all go away. Some do heal on their own but I think that is uncommon. Good luck to you.
Penny 70
I have heard some positive news that some fistulas do get fixed. Mostly I think they are a struggle and require patience and a good surgeon. I'm going to a second try at the end of this month and am hoping that's it. I've waited a year with a ostomy so am really looking forward to have it all go away. Some do heal on their own but I think that is uncommon. Good luck to you.
Penny 70
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I had a baby in March with a fouth degree tear which resulted in a rectovaginal fistula and a perianal fistula. Thankfully the perianal fistula healed, because before it did I was extremely traumatized with gas and feces coming out of my vagina and perineum (the space between the anus and vagina). Now I just have a tiny bit of air that gets through to my vagina every once in a while.
It has been 7 months now since my babies birth, but I am still afraid to have any surgery to try to repair the rectovaginal fistula because I am afraid of it getting bigger. I have heard of some women having theirs fixed with silver nitrate applied to the fistula from the vaginal side which causes the cells protecting the fistula to be removed thus allowing a small fistula to close and heal. Has anyone had this done?
Please, anyone with RVF email me to chat. _[removed]_
It has been 7 months now since my babies birth, but I am still afraid to have any surgery to try to repair the rectovaginal fistula because I am afraid of it getting bigger. I have heard of some women having theirs fixed with silver nitrate applied to the fistula from the vaginal side which causes the cells protecting the fistula to be removed thus allowing a small fistula to close and heal. Has anyone had this done?
Please, anyone with RVF email me to chat. _[removed]_
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Hi Ladies,
From reading all this, I am sure I have a very small recto vaginal fistula. i had a baby 5.5 mos ago with a 3rd degree episiotomy. Ever since then, when I am sitting in a chair a certain way, when I pass gas, some air seeps through the vagina. I haven't noticed any feces passing through the vagina and I haven't gotten any bacteria infections, urine infections, or yeast infections.
Should I fix this? It seems like the fixing it might be worse than just dealing with it. Unless of course it gets bigger. What is the downside, if any, to just leaving it as is and dealing with it? Is there any other side affects I should know about with not fixing a very small recto vaginal fistula?
Thanks!
From reading all this, I am sure I have a very small recto vaginal fistula. i had a baby 5.5 mos ago with a 3rd degree episiotomy. Ever since then, when I am sitting in a chair a certain way, when I pass gas, some air seeps through the vagina. I haven't noticed any feces passing through the vagina and I haven't gotten any bacteria infections, urine infections, or yeast infections.
Should I fix this? It seems like the fixing it might be worse than just dealing with it. Unless of course it gets bigger. What is the downside, if any, to just leaving it as is and dealing with it? Is there any other side affects I should know about with not fixing a very small recto vaginal fistula?
Thanks!
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Hi Guests!
I'm reading your posts and just wanted to share that it feels like your questions could best be answered by a physician that knows your situation. I've heard that cauterizing is not a good thing but I know doctors who do it. Not sure if that's like silver nitrate. I had my RVF post sphincteroplasty, then a try at a repair rectally and in January they'll try vaginally. i don't think the first one did any damage, perhaps made it smaller. I'm not clear on scar tissue and how it might have been involved. At least if it's not a big inconvenience, you can live your life without pain, etc. I don't think you have to decide right away. You could get a few MD opinions and then decide, or not! Good luck to you with whatever you decide.
Penny
I'm reading your posts and just wanted to share that it feels like your questions could best be answered by a physician that knows your situation. I've heard that cauterizing is not a good thing but I know doctors who do it. Not sure if that's like silver nitrate. I had my RVF post sphincteroplasty, then a try at a repair rectally and in January they'll try vaginally. i don't think the first one did any damage, perhaps made it smaller. I'm not clear on scar tissue and how it might have been involved. At least if it's not a big inconvenience, you can live your life without pain, etc. I don't think you have to decide right away. You could get a few MD opinions and then decide, or not! Good luck to you with whatever you decide.
Penny
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Hi Everyone,
Well I'm back. I posted on page nine, and I've been posting since the previous thread was still active. I had my 10th procedure, a complete sphincterplasty (2nd), on March 17, 2008...and just last night, I found out for sure that it has failed...It has healed over once again with a perianal fistula. I'm not sure what's going on or why I can't move past this and get it taken care of. I am so frustrated. I feel like it is taking over my life. It's been 4 years now since I had my daughter and I don't know what else to do. I've had every procedure possible, more than twice, from noninvasive no complete reconstructs and flaps...and it keeps reoccuring. I'm going to go back in for an exam under anestesia, but I don't know what I will do next. I cannot afford to keep going for surgery that doesn't work.
I told myself after the 3rd reconstruct that I would NEVER go through that again, then I found a new doctor, and she had a high success rate and was so confident, so I put myself through it again... further weakening my sphincter muscle, thinking that "hey if it makes me better" I would go through it one last time...and now I'm back where I started again...
I cannot explain how devastating this is...and I can't talk about it with anyone because no-one knows what I'm going through...not one bit...no matter how much I try to explain to them what's going on.
There has to be a reason for all this pain and suffering...I just cannot figure it out yet. Please, if you have any questions, concerns...feel free to email me...atleast I can help others if I can't help myself.
Well I'm back. I posted on page nine, and I've been posting since the previous thread was still active. I had my 10th procedure, a complete sphincterplasty (2nd), on March 17, 2008...and just last night, I found out for sure that it has failed...It has healed over once again with a perianal fistula. I'm not sure what's going on or why I can't move past this and get it taken care of. I am so frustrated. I feel like it is taking over my life. It's been 4 years now since I had my daughter and I don't know what else to do. I've had every procedure possible, more than twice, from noninvasive no complete reconstructs and flaps...and it keeps reoccuring. I'm going to go back in for an exam under anestesia, but I don't know what I will do next. I cannot afford to keep going for surgery that doesn't work.
I told myself after the 3rd reconstruct that I would NEVER go through that again, then I found a new doctor, and she had a high success rate and was so confident, so I put myself through it again... further weakening my sphincter muscle, thinking that "hey if it makes me better" I would go through it one last time...and now I'm back where I started again...
I cannot explain how devastating this is...and I can't talk about it with anyone because no-one knows what I'm going through...not one bit...no matter how much I try to explain to them what's going on.
There has to be a reason for all this pain and suffering...I just cannot figure it out yet. Please, if you have any questions, concerns...feel free to email me...atleast I can help others if I can't help myself.
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Hi Shellsue,
I just read your post and can't believe that you have had to go through so much. I'm just working on a second fistula repair and am complaining about the pain, loss of work, etc. How are you able to hold up after so much? Can you go out and do things or are you stuck near a bathroom? I have an ostomy which I hate (thought i was on the road to acceptance til I wrote that) but it let's me lead a fairly normal life. I, too, have found a new surgeon with better success rates but with 2 previous surgeons you can't help but feel somewhat pessimistic. I talk to my husband, sister and a coworker who has been very attentive. It helps that i work in the mental health field so I get to vent with at least a couple of people that don't mind listening. I'd say come here and vent anytime. You deserve it!
Penny
I just read your post and can't believe that you have had to go through so much. I'm just working on a second fistula repair and am complaining about the pain, loss of work, etc. How are you able to hold up after so much? Can you go out and do things or are you stuck near a bathroom? I have an ostomy which I hate (thought i was on the road to acceptance til I wrote that) but it let's me lead a fairly normal life. I, too, have found a new surgeon with better success rates but with 2 previous surgeons you can't help but feel somewhat pessimistic. I talk to my husband, sister and a coworker who has been very attentive. It helps that i work in the mental health field so I get to vent with at least a couple of people that don't mind listening. I'd say come here and vent anytime. You deserve it!
Penny
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Thanks Penny,
I work a full time job in Human Services...but I've only been there a few months so I don't talk to anyone there about this except for one really good friend I've known for a long time that works with me.
My sisters and mom are very attentive...but always just have lots of questions...I know they care though and are trying to understand. My husband has a hard time listening to me talk about it, and I feel bad talking to him about it since it kinda grosses it out...plus I need to feel a little sexy...
I do get to go out too...actually I'm pretty active, I'm in a bowling league, and I hang out a few nights a week with a pool league. I take four immodium every day to make sure I don't get diahrea, b/c at that point, I have little to no control. My system is pretty messed up from all the medication so if I don't take it, it definately will turn to that...I think about it every day, where am I going to be, when will I have to go, will I make it. It's really stressful.
My dr. did tell me that the next option would be to have another reconstruct with a colostomy bag...but there is absolutely no way I can do that with a new job and a 4 year old...plus, they have been through my muscle so many times I don't want to risk weakening it any further...I wish I hadn't this last time, since now I have to deal with the same problem anyway.
Anyway, I've scheduled my next procedure...the exam under anestesia...for Tuesday, November 25th...so I'll have to come post how that goes...
Thanks again.
I work a full time job in Human Services...but I've only been there a few months so I don't talk to anyone there about this except for one really good friend I've known for a long time that works with me.
My sisters and mom are very attentive...but always just have lots of questions...I know they care though and are trying to understand. My husband has a hard time listening to me talk about it, and I feel bad talking to him about it since it kinda grosses it out...plus I need to feel a little sexy...
I do get to go out too...actually I'm pretty active, I'm in a bowling league, and I hang out a few nights a week with a pool league. I take four immodium every day to make sure I don't get diahrea, b/c at that point, I have little to no control. My system is pretty messed up from all the medication so if I don't take it, it definately will turn to that...I think about it every day, where am I going to be, when will I have to go, will I make it. It's really stressful.
My dr. did tell me that the next option would be to have another reconstruct with a colostomy bag...but there is absolutely no way I can do that with a new job and a 4 year old...plus, they have been through my muscle so many times I don't want to risk weakening it any further...I wish I hadn't this last time, since now I have to deal with the same problem anyway.
Anyway, I've scheduled my next procedure...the exam under anestesia...for Tuesday, November 25th...so I'll have to come post how that goes...
Thanks again.
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hey Penny,
I am getting an ileostomy and second repair for my rvf--I am very nervous, of course. My first surgery failed and the fistula got bigger. What procedure are they going to do for you? B
I am getting an ileostomy and second repair for my rvf--I am very nervous, of course. My first surgery failed and the fistula got bigger. What procedure are they going to do for you? B
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