Hi there,
I have just read your story, i had a very long labour in 2004 and ended up with a misdiognosed 4th degree tear , when i returned home with my little girl i could feel air passing through my front and then stool a couple of days later. It appears that i had a rectalvaginal fistula but that wasnt told to me from the hospital i found that out for myself. I ended up having a colostomy 6 weeks after my daughter was born that followed more complications. I am taking the hospital to court as i feel that i was left in labour for far to long and this is why i substained such injuries, however i completely know how you must be feeling right now. If you can i would try and get a second opinion but as they all say rectal vaginal fistulas do not happen here in the uk from childbirth and that this only happens in third world countries.I find it sad and very frustrating to think that there are other women out there in the UK or in developing countries that have endured such injuries due to childbirth and it is just pure negligence. No women in this day and age should endure such injuries whereever it is in the world. All i can say is be persistant and if you can afford it get a private examination by a good obstertrician. Dont give up because what you have is not right keep pushing for answers, there are proper tests that can be carried out for this problem, but i would stay well away from the trust that has been dealing with you and seek somebody that has no dealings with the trust at all but has experiance with rectal vaginal fistulas, i have felt through my experiance that the hospital will not say to much about this problem as again this problem was apparently eradicated many years ago, so they will appear not to seem concerned with your problem as they do not want to raise awareness to this. There are many campaigns going on around the world to support the poor women who also have endured such injuries and many of them have sadly lost there child but although i feel the work people are doing is fantastic i cant help feeling that we are the forgotton ones. I am totally thinking of you, take care and keep strong x
penny
I have just read your story, i had a very long labour in 2004 and ended up with a misdiognosed 4th degree tear , when i returned home with my little girl i could feel air passing through my front and then stool a couple of days later. It appears that i had a rectalvaginal fistula but that wasnt told to me from the hospital i found that out for myself. I ended up having a colostomy 6 weeks after my daughter was born that followed more complications. I am taking the hospital to court as i feel that i was left in labour for far to long and this is why i substained such injuries, however i completely know how you must be feeling right now. If you can i would try and get a second opinion but as they all say rectal vaginal fistulas do not happen here in the uk from childbirth and that this only happens in third world countries.I find it sad and very frustrating to think that there are other women out there in the UK or in developing countries that have endured such injuries due to childbirth and it is just pure negligence. No women in this day and age should endure such injuries whereever it is in the world. All i can say is be persistant and if you can afford it get a private examination by a good obstertrician. Dont give up because what you have is not right keep pushing for answers, there are proper tests that can be carried out for this problem, but i would stay well away from the trust that has been dealing with you and seek somebody that has no dealings with the trust at all but has experiance with rectal vaginal fistulas, i have felt through my experiance that the hospital will not say to much about this problem as again this problem was apparently eradicated many years ago, so they will appear not to seem concerned with your problem as they do not want to raise awareness to this. There are many campaigns going on around the world to support the poor women who also have endured such injuries and many of them have sadly lost there child but although i feel the work people are doing is fantastic i cant help feeling that we are the forgotton ones. I am totally thinking of you, take care and keep strong x
penny
How are the various fistula tracts indentified? I am concerned that not all the tracts will be found.
hi, i am so happy to have found this site. i thought i was alone all these years. after having my son 11 years ago. a month after i started having diarea from the vagina, had moved by then frm calif. to idaho. i called a doctor, the hospital, they said it was not a bigdeal, it was a cosmetic thing. i just learned to live with it. finally a week ago, i went in to have it repaired. thinking it was just a couple of stitches. after a 3 hour surgery, when i got back to my room, the doctor came in and said it was a big mess in there. muscle had been cut throuh and left, they had to reconstruct, now a week after surgery, it is comingout the front again. plus air. its kind of mucasy but brown, i called the doctor, he said i still have to heal, im so scared, could it be true? that what is coming out is just draining out from surgery? and that once i heal it will stop? or is this a failed surgery? also, i read somewhere in here that i should not be using wipes to clean after going to the bathroom, could someone tell me why that is? ive been using them. and if the leakage could just be drainage?? some one please help me please
I am so glad to have found this site also.....
I to have been dealing with a recurring recto vaginal fistula that I have had for the last 10 1/2 years. It started with the birth of my first son. I swelled up very badly after they had to use the forceps to remove him, so when she was sewing me up apparently she had a hard time. (I know this because when I got up to the recovery room all of the nurses were saying, "You're the one that swelled up so bad." I didn't really notice at first that something was wrong, I had a bartholin's glad cyst that had been draining constantly for about 2 to 3 years prior to giving birth and stopped during the last trimester, so I just thought that was happening again, well it wasn't.
I always would have some discharge, but was informed that it was just a bacterial infection and giving antibiotics. I did not know that it was actually an RVF until my son was about 3. I moved to a new state, got married, and started seeing a wonderful OBGYN that diagnosed me. He told me that if it wasn't bothering me, I could leave it alone, or I could have reconstrucive surgery. I opted to leave it alone, since I wanted to have other children and a vaginal delivery, until Sept. 2001 when it really started hurting. I then scheduled surgery with my OBGYN. I went though the normal pre op stuff, golightly and antibiotics that made me so sick that the night before I had dry heaves so bad the doctor had to call me in a prescription for Phenergan and the nurses had a hard time giving me an IV the next day.
After the surgery I was in a great deal of pain. I had asked if I needed antibiotics for more than the 1 day that I was in the hospital (post op) and was told no. Well the repair seemed to have worked, but the pain got worse. I called the office and was told to take the sitz baths more often. After 4 days the pain became unbearable and I started to pass gas again as I did with the RVF. Well I went in and found out that I had an infection prior to the surgery (due to the type that it was) that had gotten into the incision when they operated. So this surgery failed.
Three months after the first surgery I found out that I was pregnant with my second child. My OBGYN and I talked about the RVF and the possibility of repairing it when my second child was born. At the last visit prior to the birth, the doctor evaluated me and decided that it was best to not attempt to fix the RVF due to the possible blood loss that could occur (I had some very large protruding veins that he was concerned about). Well, the baby had other plans. My son was 9 lbs 6 1/2 oz. I was cut for the episiotmy, but ripped right into the fistula. The doctor spent an hour and a half after the baby was born attempting to fix the fistula. He gave the nurses strict instructions on my medication as far as stool softeners and other things, which were not followed. The repair only lasted 2 days that time before the fistula reocurred.
I then decided to wait again. I did not want it to fail again. I was having problems in my marriage by this point. The emotional stress of that plus my body not being right was horrible. My husband called me "rotten crotch" and other things relating to my RVF when he got mad at me. There was nothing that I could do. I kept wishing that I could just have the surgery again and that it would work.
I spoke to my OBGYN again about this. He did not want to attempt another repair himself, but wanted to refer me to another doctor that was a GYN that specialized in cancer. So, I went to meet him. He seemed very nice. He stated that he would do the same type of repair as the first repair attempt, total reconstruction. Which we did. This time I was confined to the bed for 24hours of lying down after surgery. I had liquids for 2 days, and at my first bowl movement, I noticed the surgery had not worked. I feel that this was from the doctors lack of planning. He found one hole and fixed it, not realizing that the fistula can track through with many different openings on both sides (it is not just a one way in an out deal).
At this my husband said "I told you so" as he never beleived that it would work. Just what I needed at the time, another failed surgery and an uncaring husband.
My husband and I got a divorce last year :-D
I met a great new guy that I began dating, and it was so hard to tell him what happened, but you have to. Somehow passing stool and gas through your vaginal opening is something that you just can't keep hidden. I thought that would scare him away, but it didn't. So, last March my OBGYN and I had a discussion again. He told me that he would make some calls and see if he could find another surgeon that could help. He gave me the name of a doctor in a town 2 hours away (I would go a world away if this would just be gone). I met with the doctor and really liked him. He explained that I would have to have another reconstruction, that the surgery would take about 4 hours as he would make sure that he tracked down and repaired every tract of the RVF and that I would be in the hospital post op for about 5 days. So I planned the surgery for July 07 and started the planning, well I still have not had that surgery. In the mean time I ended up with a broken disc in my back and had back surgery in July. Got married again in October and here we are in January.
I know that lots of you have dealt with more and longer problems than I. I just wish that there was a guarantee that the surgery would work if I have it again. My new husband and I want to have baby together within the next years, but if I have the RVF repaired before then, I will have to have a C section. I am 33 years old at this point and feel that I will always have this problem.
Does anyone know of a really good surgeon to repair this. At this point, I am willing to go to almost the ends of the earth to find someone that has repaired many of these sucessfully. PLEASE...if you know one. Let me know.
I don't think that anyone should have to deal with the kind of personal pain both physically and emotionally that this type of aflection puts us though.
May GOD bless all of you and help you through your struggles with RVF and all of life.
I to have been dealing with a recurring recto vaginal fistula that I have had for the last 10 1/2 years. It started with the birth of my first son. I swelled up very badly after they had to use the forceps to remove him, so when she was sewing me up apparently she had a hard time. (I know this because when I got up to the recovery room all of the nurses were saying, "You're the one that swelled up so bad." I didn't really notice at first that something was wrong, I had a bartholin's glad cyst that had been draining constantly for about 2 to 3 years prior to giving birth and stopped during the last trimester, so I just thought that was happening again, well it wasn't.
I always would have some discharge, but was informed that it was just a bacterial infection and giving antibiotics. I did not know that it was actually an RVF until my son was about 3. I moved to a new state, got married, and started seeing a wonderful OBGYN that diagnosed me. He told me that if it wasn't bothering me, I could leave it alone, or I could have reconstrucive surgery. I opted to leave it alone, since I wanted to have other children and a vaginal delivery, until Sept. 2001 when it really started hurting. I then scheduled surgery with my OBGYN. I went though the normal pre op stuff, golightly and antibiotics that made me so sick that the night before I had dry heaves so bad the doctor had to call me in a prescription for Phenergan and the nurses had a hard time giving me an IV the next day.
After the surgery I was in a great deal of pain. I had asked if I needed antibiotics for more than the 1 day that I was in the hospital (post op) and was told no. Well the repair seemed to have worked, but the pain got worse. I called the office and was told to take the sitz baths more often. After 4 days the pain became unbearable and I started to pass gas again as I did with the RVF. Well I went in and found out that I had an infection prior to the surgery (due to the type that it was) that had gotten into the incision when they operated. So this surgery failed.
Three months after the first surgery I found out that I was pregnant with my second child. My OBGYN and I talked about the RVF and the possibility of repairing it when my second child was born. At the last visit prior to the birth, the doctor evaluated me and decided that it was best to not attempt to fix the RVF due to the possible blood loss that could occur (I had some very large protruding veins that he was concerned about). Well, the baby had other plans. My son was 9 lbs 6 1/2 oz. I was cut for the episiotmy, but ripped right into the fistula. The doctor spent an hour and a half after the baby was born attempting to fix the fistula. He gave the nurses strict instructions on my medication as far as stool softeners and other things, which were not followed. The repair only lasted 2 days that time before the fistula reocurred.
I then decided to wait again. I did not want it to fail again. I was having problems in my marriage by this point. The emotional stress of that plus my body not being right was horrible. My husband called me "rotten crotch" and other things relating to my RVF when he got mad at me. There was nothing that I could do. I kept wishing that I could just have the surgery again and that it would work.
I spoke to my OBGYN again about this. He did not want to attempt another repair himself, but wanted to refer me to another doctor that was a GYN that specialized in cancer. So, I went to meet him. He seemed very nice. He stated that he would do the same type of repair as the first repair attempt, total reconstruction. Which we did. This time I was confined to the bed for 24hours of lying down after surgery. I had liquids for 2 days, and at my first bowl movement, I noticed the surgery had not worked. I feel that this was from the doctors lack of planning. He found one hole and fixed it, not realizing that the fistula can track through with many different openings on both sides (it is not just a one way in an out deal).
At this my husband said "I told you so" as he never beleived that it would work. Just what I needed at the time, another failed surgery and an uncaring husband.
My husband and I got a divorce last year :-D
I met a great new guy that I began dating, and it was so hard to tell him what happened, but you have to. Somehow passing stool and gas through your vaginal opening is something that you just can't keep hidden. I thought that would scare him away, but it didn't. So, last March my OBGYN and I had a discussion again. He told me that he would make some calls and see if he could find another surgeon that could help. He gave me the name of a doctor in a town 2 hours away (I would go a world away if this would just be gone). I met with the doctor and really liked him. He explained that I would have to have another reconstruction, that the surgery would take about 4 hours as he would make sure that he tracked down and repaired every tract of the RVF and that I would be in the hospital post op for about 5 days. So I planned the surgery for July 07 and started the planning, well I still have not had that surgery. In the mean time I ended up with a broken disc in my back and had back surgery in July. Got married again in October and here we are in January.
I know that lots of you have dealt with more and longer problems than I. I just wish that there was a guarantee that the surgery would work if I have it again. My new husband and I want to have baby together within the next years, but if I have the RVF repaired before then, I will have to have a C section. I am 33 years old at this point and feel that I will always have this problem.
Does anyone know of a really good surgeon to repair this. At this point, I am willing to go to almost the ends of the earth to find someone that has repaired many of these sucessfully. PLEASE...if you know one. Let me know.
I don't think that anyone should have to deal with the kind of personal pain both physically and emotionally that this type of aflection puts us though.
May GOD bless all of you and help you through your struggles with RVF and all of life.
Poohbear27...if you read through my previous posts, you'll see my history...but I have a pretty long one, including 8 surgeries to repair fistula after fistula...to no end. I've had 2 reconstructs, 1 advancement flap, a few plugs, a bunch of setons in between...and now on March 17th I will go in for another full reconstruct with an advancement flap with a brand new Dr. in Portland, OR. She did some (Anal Rectal Testing) ART prior to diagnosing anything so she would know for sure just what was going on in there. That tested nerve and muscle control and also did an ultrasound to see exactly where the fistula tract went to and from.
It turns out if goes right through my sphincter muscle so she can't repair it without cutting through the muscle, and in this case, reconstructing the entire area again. She thinks I have about a 70-80% chance of a full recovery...I'm just praying it works this time. It is a miserable procedure...she has me doing a 3 day prep...and I'll be in the hospital for 2 days post surgery...and liquids for a few days...
My first surgeon ADMITTED to me that he should have done an ultrasound before the first surgery so he would have known what was in there...so I would recommend before anything else is done, get some testing done!!
Good luck! Let me know if you have any other questions!
Richelle
It turns out if goes right through my sphincter muscle so she can't repair it without cutting through the muscle, and in this case, reconstructing the entire area again. She thinks I have about a 70-80% chance of a full recovery...I'm just praying it works this time. It is a miserable procedure...she has me doing a 3 day prep...and I'll be in the hospital for 2 days post surgery...and liquids for a few days...
My first surgeon ADMITTED to me that he should have done an ultrasound before the first surgery so he would have known what was in there...so I would recommend before anything else is done, get some testing done!!
Good luck! Let me know if you have any other questions!
Richelle
Lauren,
I have a perianal fistula that has absessed before, althought right now it's not...but still, everytime I have a BM it gets extremely irritated and painful....and not just on the outside, but throughout my whole tract. And yes, it's debilitating...I sit on the couch or in bed all the time in pain...it's a very sensitive area and extremely hard to keep clean and settled down. The seton should help since it's keeping the tract open, it should give thei nfection somewhere to go, but if you start to have really bad pain, swelling, redness, nausea, vomitting, fever...I would get it checked out because there could be a trapped infection or another absess inside that can't escape...and left alone with nowhere to go, will spread to your bloodstream.
If you don't trust your dr and don't think they listen to your concers, I would definately find a different one!
I have a perianal fistula that has absessed before, althought right now it's not...but still, everytime I have a BM it gets extremely irritated and painful....and not just on the outside, but throughout my whole tract. And yes, it's debilitating...I sit on the couch or in bed all the time in pain...it's a very sensitive area and extremely hard to keep clean and settled down. The seton should help since it's keeping the tract open, it should give thei nfection somewhere to go, but if you start to have really bad pain, swelling, redness, nausea, vomitting, fever...I would get it checked out because there could be a trapped infection or another absess inside that can't escape...and left alone with nowhere to go, will spread to your bloodstream.
If you don't trust your dr and don't think they listen to your concers, I would definately find a different one!
SERIOUSLY????? I could kick all these drs who tell us "that's just what it feels like" or "you just think that's what's happening" WE KNOW OUR BODIES...if you know something is wrong...which definately sounds like there is...I would get a second opinion.
When I had my RVF, I was told for a YEAR that there was no hole...and that the gas passing through was not really happening and that's "just what it feels like"...Bull Sh*T...man that makes me mad.
Finally after not being able to sit for a year, I went back in knowing something was really wrong b/c it was absessing...that's when they finally diagnosed it...and it should NOT have taken that long...but the midwife that delivered me did not want to say it was possible.
I was 24 when I had my baby...it's been 3 years and I'm still dealing with all this!
I would definately get a second opinion.
When I had my RVF, I was told for a YEAR that there was no hole...and that the gas passing through was not really happening and that's "just what it feels like"...Bull Sh*T...man that makes me mad.
Finally after not being able to sit for a year, I went back in knowing something was really wrong b/c it was absessing...that's when they finally diagnosed it...and it should NOT have taken that long...but the midwife that delivered me did not want to say it was possible.
I was 24 when I had my baby...it's been 3 years and I'm still dealing with all this!
I would definately get a second opinion.
my story is similar to all of yours. I've had my RVF for 5 years... also giving birth(normal) to a 9 lbs 14oz baby... I've had 2 repairs , one by an OBGYN and the other by a colorectal surgon. The last surgery was in Feburary of 2005 and I am still suffering from constant pain in the area. I recently revisited my doctor who performed my second surgery and told me that a third surgery would only give me 50% of healing. I don't want to risk getting a third surgery done and not being able to heal corrently and going back to square one. Before reading everyone's stories, I really thought I was the only woman with a RVF. Now, for 5 years I have delt with leaking in the vagina from the rectum, odor that never goes away, pain when I have intercourse with my husband etc... Reading your stories really helped. I now know that I am not alone in this planet, dealing with a RVF. My prayers to all of you.
Would like advice on what clinic and doctor to see for a 2nd rvf or perineal fistula repair and possible sphincterplasty. Most doctors do very little of this type of surgery, I am looking for someone with experience and an excellent reputation. Mayo is rated very good also Cleveland Clinic. Which location for either of these is the best for this problem? Any success stories or cautionary comments?
Like I mentioned to someone else, I would definately have whichever dr you decide to go with do some Anal Rectal Testing to make sure they know exactly what is going on in there before starting any work. If they don't do a sphincterplasty, how are they going to repair the fistula? I would NOT recommend a surgisis plug...believe it or not they are like 20-25% successful. I've had 2 fail.
I have had a mucosal advancement flap to repair my RVF, and if it hadn't been for my sphincter muscle coming apart and failing to work, that may have been all it took to repair me...so that might be a good not so invasive starting procedure, and if it fails, then try the more invasive sphincterplasty.
What did you have done for the first repair?
Good luck to you...
Sorry to say I don't have any success stories yet, but if this new Dr. makes me right in a few months, I will definately be recommending her to others!
I have had a mucosal advancement flap to repair my RVF, and if it hadn't been for my sphincter muscle coming apart and failing to work, that may have been all it took to repair me...so that might be a good not so invasive starting procedure, and if it fails, then try the more invasive sphincterplasty.
What did you have done for the first repair?
Good luck to you...
Sorry to say I don't have any success stories yet, but if this new Dr. makes me right in a few months, I will definately be recommending her to others!
hi, i posted earlier, right after i had my first surgery, it failed, the stitches came out. he hd cut out the track, and now the hole in my vaginal rectol wall is bigger, i am now passing big stool through vagina, before surgery,it was mainly only when i had diarea. i wish i would have left it alone, i had lived with it 11 years. now i cant see how ican do that. can anyone tell me what i can do to make it harder to come out that way? should i harden my stools? i also wanted to know what i can do before sex, so that it wont be there when i have sex. also ways to stop the burning rawness all outside my vagina from the feces being there. please help me someone. im so scared, i dont know what to do, i dont want to try another surgery, it could make it worse.
Michelle, that's terrible. I'm sorry I don't know what to tell you if you don't want to try another surgery...that is your only option for a repair.
hi There,
I have an RVF. Not sure if its from childbirth or too much poking around when I had my ovaries out (as a precaution - mum had ovarian cancer). I had one failed advancement flap repair in July last year and have had a colostomy since August. I go for another repair on March 3rd and they plan to put some collagen in to help fill the hole. Has anyone else had this done??
I am Ok with the colostomy - sure beats poo coming out the wrong way, plus I irrigate the colostomy once a day - so empty bag almost all of the time. however, I would like to be fixed and reversed!!!
I have an RVF. Not sure if its from childbirth or too much poking around when I had my ovaries out (as a precaution - mum had ovarian cancer). I had one failed advancement flap repair in July last year and have had a colostomy since August. I go for another repair on March 3rd and they plan to put some collagen in to help fill the hole. Has anyone else had this done??
I am Ok with the colostomy - sure beats poo coming out the wrong way, plus I irrigate the colostomy once a day - so empty bag almost all of the time. however, I would like to be fixed and reversed!!!
My first repair was a basic obstetric repair by an ob/gyn. The remaining fistula is much smaller and I'm not sure if it is a rv or a perineal fistula.
Since it is hard to identify visually I really want some other tests before undergoing another surgery. Hope thing go well for you.
Since it is hard to identify visually I really want some other tests before undergoing another surgery. Hope thing go well for you.
shellsue42 wrote:
my ob/gyn thought a perineal reconstruction might fix it, he has concerns that a sphincterplasty could fail and make for more incontinence. I'm learning, so I can make the best decision for a good outcome. Hope everything goes well for you!!!
ssmith wrote:
Would like advice on what clinic and doctor to see for a 2nd rvf or perineal fistula repair and possible sphincterplasty. Most doctors do very little of this type of surgery, I am looking for someone with experience and an excellent reputation. Mayo is rated very good also Cleveland Clinic. Which location for either of these is the best for this problem? Any success stories or cautionary comments?
Like I mentioned to someone else, I would definately have whichever dr you decide to go with do some Anal Rectal Testing to make sure they know exactly what is going on in there before starting any work. If they don't do a sphincterplasty, how are they going to repair the fistula? I would NOT recommend a surgisis plug...believe it or not they are like 20-25% successful. I've had 2 fail.
I have had a mucosal advancement flap to repair my RVF, and if it hadn't been for my sphincter muscle coming apart and failing to work, that may have been all it took to repair me...so that might be a good not so invasive starting procedure, and if it fails, then try the more invasive sphincterplasty.
What did you have done for the first repair?
Good luck to you...
Sorry to say I don't have any success stories yet, but if this new Dr. makes me right in a few months, I will definately be recommending her to others!
my ob/gyn thought a perineal reconstruction might fix it, he has concerns that a sphincterplasty could fail and make for more incontinence. I'm learning, so I can make the best decision for a good outcome. Hope everything goes well for you!!!