this was me ^^ i figured i might as well make an account!!
Anyways, the OB didn't go into too much detail when I saw him about this over a month ago. He wanted to wait and see if it would heal on its own before we crossed that bridge. I am assuming he would be the one to fix this. I'm not sure if a "repeat episiotomy" would be the right term, he said something about opening and re-closing the layers? I see him monday so i'll know more then.
When he did examine me last month, he said it looked like i had an infection because there was a "discontinuity" of my vaginal membranes. Like the stitches had dissolved, but I hadn't fully healed. lovely...
At the time I could feel when the gas leaked into my vagina, like it was coming through a tiny pinhole. But i dont feel that anymore. BUT there is gas coming out.
Sorry if this is TMI...Sometimes I wonder if there is something else going on because I finally got the courage to have a peek down there. I understand that some of what im seeing just takes time to tighten/heal up. But, the opening of my vagina where the episiotomy started looks off center a bit, and my perineum looks weird. instead of a smooth flat piece of skin it sort of goes in towards the incision site. like a valley haha (i dont know if that makes any sense.) Anyways, sometimes when i pass gas from my rectum, i feel it go over that and up to my vulva. So i don't know if it's possible the gas is just making it's way into my vagina because things are still a bit stretched out? or maybe i'm getting my hopes up hahaha
arg. i'm a bit confused about what's going on!
My insurance will only cover me about to the end of this month because I am on denali kid care, which is essentially medicaid for pregnant women. :/
thanks for replying to my post!
Anyways, the OB didn't go into too much detail when I saw him about this over a month ago. He wanted to wait and see if it would heal on its own before we crossed that bridge. I am assuming he would be the one to fix this. I'm not sure if a "repeat episiotomy" would be the right term, he said something about opening and re-closing the layers? I see him monday so i'll know more then.
When he did examine me last month, he said it looked like i had an infection because there was a "discontinuity" of my vaginal membranes. Like the stitches had dissolved, but I hadn't fully healed. lovely...
At the time I could feel when the gas leaked into my vagina, like it was coming through a tiny pinhole. But i dont feel that anymore. BUT there is gas coming out.
Sorry if this is TMI...Sometimes I wonder if there is something else going on because I finally got the courage to have a peek down there. I understand that some of what im seeing just takes time to tighten/heal up. But, the opening of my vagina where the episiotomy started looks off center a bit, and my perineum looks weird. instead of a smooth flat piece of skin it sort of goes in towards the incision site. like a valley haha (i dont know if that makes any sense.) Anyways, sometimes when i pass gas from my rectum, i feel it go over that and up to my vulva. So i don't know if it's possible the gas is just making it's way into my vagina because things are still a bit stretched out? or maybe i'm getting my hopes up hahaha
arg. i'm a bit confused about what's going on!
My insurance will only cover me about to the end of this month because I am on denali kid care, which is essentially medicaid for pregnant women. :/
thanks for replying to my post!
Flower and others: Thanks for your responses. Been very down. Flower you've had two failed repairs before your colostomy. Were the failures due to infections post surgery? What type of repair did you have done for your third repair after the colostomy? When was was colostomy done and when was your third repair done? I wish you much success in the take down. We all know you deserve it! God bless.
Hi I left a message as a guest about a week ago. I saw the gynae a few days ago and while most people would be relieved to hear that they cant see anything, I have been left feeling very down. Especailly as last night I again passed faeces through my vagina. The doctor told me that i have a very short perineum and thats why i think it's coming out of my vagina. I did explain that I cna also feel wind travelling through my vagina, it's not something that I am making up. They did agree to send me to a dr that specialises in perineum tears but more from an incontinence point of view rather than for a potential fistula. Do any of you think its possible she could have missed something, or can everything be seen with a speculum and light. She also pushed against my vaginal wall through my rectum and looked inside that way and said other than obvioulsy a lot of scar tissue she couldnt see anything to worry about. Of course I hope that she is right, but I also know what i can feel. This may sound completely disgusting, but when I first started to suspect something, I cleaned the area and used a cotton bud to kind of swab and I could see some soiling on it. You dont get faeces right up your vagina from opening your bowels.
I dont particularly have much confidence in doctors as for years I was told I was a hypochondriac and being ignored and told that i was just soft and that there was nothing wrong with. Now they know that I have fibromyalgia and hypermobility syndrome and facet joint arthritis.
Sorry for the long post and the rant. Was just wondering how much all of you went through to get a diagnosis
Thanks
Simone
I dont particularly have much confidence in doctors as for years I was told I was a hypochondriac and being ignored and told that i was just soft and that there was nothing wrong with. Now they know that I have fibromyalgia and hypermobility syndrome and facet joint arthritis.
Sorry for the long post and the rant. Was just wondering how much all of you went through to get a diagnosis
Thanks
Simone
Just wanted to add to my above post. The leakage through the vagina is worse after intercourse ( which I suppose would make sense)
Hello !! Well today is the day of reckoning.....Off to Cleveland Clinic I go to have a water enema test done to check the repaired spchinters AND to see if the fistulas is closed off as I have had 2 doctors tell me it is....I'm nervous....I want blue dye added to the water and I will take my own along just in case..I am not messing around anymore !
Kitty, I had 2 failures to repair the fistula and yes, the failure I feel and my CRS has come around finally due to the fact that stool was passing by the stitches thus preventing healing, think about it...it's not a very clean site to begin with, so after dinking around with a RVF for 7 months, I went in to have a gen surgeon here in my hometown, who is also a friend, check out the healing after the second one and he right away said...colostomy and a cut end one at that, I was in such agony and pain, I didn't argue, went in, had it, felt better almost immediately, waited a few months (3), went back to CLE and dr there said the fistula was healed and I required no more repairs.....well....In Dec I went back to my Gen surgeon, had him check it too and he said the same..time for a take down when I was ready. Again, I am so afraid I am acting too hastily so I scheduled this test in CLE to be the final one to guide me to making the big decision to do the reversal. I never had the 3rd repair, was told I didn't need it, so we will see, the RVF healed up on it's own because THERE WAS NO STOOL PASSING BY THE SURGERICAL SITE....that is what I was saying all along to the docs when they were so perplexed as to why the repairs were not a success. Surprisingly sometimes us little patients do know our bodies pretty good. I say. go with your gut feeling. Bea, Beegirl, Penny...how are you all doing? Everyone else, it's a haul, but we will be healed !!
Flower
Kitty, I had 2 failures to repair the fistula and yes, the failure I feel and my CRS has come around finally due to the fact that stool was passing by the stitches thus preventing healing, think about it...it's not a very clean site to begin with, so after dinking around with a RVF for 7 months, I went in to have a gen surgeon here in my hometown, who is also a friend, check out the healing after the second one and he right away said...colostomy and a cut end one at that, I was in such agony and pain, I didn't argue, went in, had it, felt better almost immediately, waited a few months (3), went back to CLE and dr there said the fistula was healed and I required no more repairs.....well....In Dec I went back to my Gen surgeon, had him check it too and he said the same..time for a take down when I was ready. Again, I am so afraid I am acting too hastily so I scheduled this test in CLE to be the final one to guide me to making the big decision to do the reversal. I never had the 3rd repair, was told I didn't need it, so we will see, the RVF healed up on it's own because THERE WAS NO STOOL PASSING BY THE SURGERICAL SITE....that is what I was saying all along to the docs when they were so perplexed as to why the repairs were not a success. Surprisingly sometimes us little patients do know our bodies pretty good. I say. go with your gut feeling. Bea, Beegirl, Penny...how are you all doing? Everyone else, it's a haul, but we will be healed !!
Flower
just wanted to update you all. My OB said everything is healing excellent. based on what i told him, he agreed that some gas is just making its way up there because things are still a little open from childbirth. WHEW! so i am feeling very fortunate.
Sillyoldbear- i would stay persistent. just because your gyno doesnt see it doesnt mean it's not there. my OB told me that even with the pinhole fistulas that can't be seen, you still get some visible feces passing. so it is VERY possible that she just missed it. i would go to the specialist and explain what you're feeling. i know that i had one at some point because like you i could feel the gas passing from my rectum to my vagina. if the gyno you are seeing is not being open to what you are feeling, i would seriously recommend going to another doctor. perhaps even seeing a colorectal surgeon. it's YOUR body and only you know what you are feeling. i am lucky that my OB didn't second guess what i was feeling, and also that it went away on its own.
i didn't see your original post, so was this from childbirth? how long have you been having symptoms?
Sillyoldbear- i would stay persistent. just because your gyno doesnt see it doesnt mean it's not there. my OB told me that even with the pinhole fistulas that can't be seen, you still get some visible feces passing. so it is VERY possible that she just missed it. i would go to the specialist and explain what you're feeling. i know that i had one at some point because like you i could feel the gas passing from my rectum to my vagina. if the gyno you are seeing is not being open to what you are feeling, i would seriously recommend going to another doctor. perhaps even seeing a colorectal surgeon. it's YOUR body and only you know what you are feeling. i am lucky that my OB didn't second guess what i was feeling, and also that it went away on its own.
i didn't see your original post, so was this from childbirth? how long have you been having symptoms?
Simone- i just went back and read your original post. According to my OB if things don't go away 3-6 months postpartum, they won't likely get better on their own. i would probably go see a colorectal specialist instead of a gyno because of the incontinence. a CR surgeon would be more likely to be able to address the incontinence as well as the fistula. from the medical literature i've read, the type of repair they choose is largely based on the patients ability to control their bowels.
Flower--After your second repair, you had a colostomy because of pain? Was the repair site infected or just painful so you had your colo done? How soon after your second surgery did you have the colo surgery? I thought you had to have a colo because the second repair broke down. It is so confusing trying to figure this out. I'd really like to learn from you and others who've been through this so I can figure out what my next step should be. Do you still have vag infections every now and then? How did your dr. manage your current or prior vag infections if there was an abscess? Do any of you have a seton via your fistula. Please tell me how yours is working and how long you may have had it. So many questions!! Thanks to anyone who can answer some of these concerns. I could use some information from those who have experienced this to be more knowledgeable myself.
Hello everyone,
Flower, good luck to you with the water test. By now you must have had it done. I'm feeling confident things went well for you. You hung in for so long, and with such good attitude, you are an example for us all! Let us know what your next step is, I'm hoping for a quick reversal. When mine came along it almost felt too fast, I hadn't gotten my head around it yet that my fistula was gone! Keep us posted!
Sillyoldbear, I agree with verasmommy. If you see what you do and you've seen it multiple times, I say, keep looking for an MD that will listen to you. I left my first surgeion half way through the process cause he didn't care whether or not it was still there. What a relief when you find someone that cares. I think there are a lot of good MD's out there, you just have to find them.
Penny
Flower, good luck to you with the water test. By now you must have had it done. I'm feeling confident things went well for you. You hung in for so long, and with such good attitude, you are an example for us all! Let us know what your next step is, I'm hoping for a quick reversal. When mine came along it almost felt too fast, I hadn't gotten my head around it yet that my fistula was gone! Keep us posted!
Sillyoldbear, I agree with verasmommy. If you see what you do and you've seen it multiple times, I say, keep looking for an MD that will listen to you. I left my first surgeion half way through the process cause he didn't care whether or not it was still there. What a relief when you find someone that cares. I think there are a lot of good MD's out there, you just have to find them.
Penny
Hey guys--just checking in-Bea and Penny how are you guys??? I hope well...all is ok here, starting to get back to my old self-the rvf is still there, I can feel gas every so often and maybe a tiny bit of stool if I have bad diarhea...but good god, I am so happy to be through all of the heck...for you new to the board-I had a rvf, after child birth, one repair that made it huge then an ileostomy and a second repair then finally a take down of the ostomy.... after two years I am getting there-justy want to come back, check up and also tell you ladies that things get better, maybe not always perfect, but they can get better-Remember most people who get better look ahead and want to forget the hardships....thinking of all of you. beegirl
Hi all,
I've not posted for a while - not much to report. I managed to fall down some steps anf fracture my elbow before Xmas so that kept me a bit quiet. I have been referred to St Marks here for a second opinion, Flower this is the hospital your MD recommended. I am hoping to see the new consultant soon.
Flower Beegirl rvlmom and Penny hope you are OK - I've been thinking of you and reading the posts on and off. I just can't always face it all the time and need to try and get on with thinking about other things sometimes.
I have to report that my fistula is the worse it has ever been now after the 4th repair. I get formed stool coming out of the hole like a fat shoestring - and this is even with a temporary colostomy. I sometimes wish I'd never had surgery but I don't want to give up yet. Just writing what I have just written makes feel upset but it is the reality of what has happened to me.
To the new people - I hope you find this site useful - the support is wonderful. Just don't listen to my story because it isn't always as bad as it has been for me.
Bea
I've not posted for a while - not much to report. I managed to fall down some steps anf fracture my elbow before Xmas so that kept me a bit quiet. I have been referred to St Marks here for a second opinion, Flower this is the hospital your MD recommended. I am hoping to see the new consultant soon.
Flower Beegirl rvlmom and Penny hope you are OK - I've been thinking of you and reading the posts on and off. I just can't always face it all the time and need to try and get on with thinking about other things sometimes.
I have to report that my fistula is the worse it has ever been now after the 4th repair. I get formed stool coming out of the hole like a fat shoestring - and this is even with a temporary colostomy. I sometimes wish I'd never had surgery but I don't want to give up yet. Just writing what I have just written makes feel upset but it is the reality of what has happened to me.
To the new people - I hope you find this site useful - the support is wonderful. Just don't listen to my story because it isn't always as bad as it has been for me.
Bea
Hi Bea,
It is good to hear from you again. I know we all think of you and are hoping things improve for you. I do hear hope in your post and am glad you continue to seek out help. I too feel that sometimes you have to stay away from these forums just to refocus on your life and go about living it. We are not just the sum of our parts and certainly not just our rvf's. I'm sure you'll find the correct procedure and the right surgeon to perform it.
Penny
It is good to hear from you again. I know we all think of you and are hoping things improve for you. I do hear hope in your post and am glad you continue to seek out help. I too feel that sometimes you have to stay away from these forums just to refocus on your life and go about living it. We are not just the sum of our parts and certainly not just our rvf's. I'm sure you'll find the correct procedure and the right surgeon to perform it.
Penny
Hi Bea...Good Luck at St Marks, I sure hope they can do something for you, please hang in there, don't get too down.
Penny, Yes I went and had my water test, I insisted on a blue dye to be added...it was a discussion, but like I said, I insisted...
anyhoo...had the test. good news is the spchinters held, in fact they felt weird after not having them working properly for 20 years.....I used a tampon and after I evacuated, wiped...pulled out tampy and there was only a bit of blue color on the end near the string, and nothing showed up on it as it came out. Doc then rechecked me, said all was looking good and he is 99% sure I am healed. The dye on the end was transfer....ok so I made appt to see Gen Surgon to get reversal on Feb 9 and he is going to do a much more lookee see once I am "under" before he takes down the colostomy, as the CRS also suggested. We are trying to leave no stone left unturned here and to be as sure as we can.
Now today, I had to go potty and pooped out mucus and afterwards, I dabbed from force of habit and fear up in the vag and there was some mucus that showed up on the tissue......What to think..? actually I said WTF? I am trying not to freak out, I need to just wait and see what transpires on Feb 9.....I really don't want to wake up with the colostomy still attached to me....I am so sick of this horsecrap, I just want it to end...we all do. I am trying to keep the faith and believe waht the docs say....IT IS HEALED...
ktty10...I had the colostomy because the surgerical site after #2 wasn't healing and there was another tiny fistula forming totally unrelated to the original one. Yes I was in pain, sitting was not an option, losing weight, getting dehydrated and throwing up alot. #2 was done June 10, colostomy done July 15....less than a month in between. no abcess, but had a couple of vag infections, took meds and ate alot of yogurt and take pre(pro) biotics....I had a seton for a fistula back in 1992...very painful, sneezing was a b***h...made doc take it out, thus I healed improperly. If I were you, I would read up as much as you can, get a good CRS and do not be intimidated by them...insist on what you want done and how...
Beegirl...you give me hope knowing you are doing better, if I can just NOT have diarhhea, I may be ok.
well gotta run..work
all of you ..be strong and I am so glad I found this site.
Flower
Penny, Yes I went and had my water test, I insisted on a blue dye to be added...it was a discussion, but like I said, I insisted...
anyhoo...had the test. good news is the spchinters held, in fact they felt weird after not having them working properly for 20 years.....I used a tampon and after I evacuated, wiped...pulled out tampy and there was only a bit of blue color on the end near the string, and nothing showed up on it as it came out. Doc then rechecked me, said all was looking good and he is 99% sure I am healed. The dye on the end was transfer....ok so I made appt to see Gen Surgon to get reversal on Feb 9 and he is going to do a much more lookee see once I am "under" before he takes down the colostomy, as the CRS also suggested. We are trying to leave no stone left unturned here and to be as sure as we can.
Now today, I had to go potty and pooped out mucus and afterwards, I dabbed from force of habit and fear up in the vag and there was some mucus that showed up on the tissue......What to think..? actually I said WTF? I am trying not to freak out, I need to just wait and see what transpires on Feb 9.....I really don't want to wake up with the colostomy still attached to me....I am so sick of this horsecrap, I just want it to end...we all do. I am trying to keep the faith and believe waht the docs say....IT IS HEALED...
ktty10...I had the colostomy because the surgerical site after #2 wasn't healing and there was another tiny fistula forming totally unrelated to the original one. Yes I was in pain, sitting was not an option, losing weight, getting dehydrated and throwing up alot. #2 was done June 10, colostomy done July 15....less than a month in between. no abcess, but had a couple of vag infections, took meds and ate alot of yogurt and take pre(pro) biotics....I had a seton for a fistula back in 1992...very painful, sneezing was a b***h...made doc take it out, thus I healed improperly. If I were you, I would read up as much as you can, get a good CRS and do not be intimidated by them...insist on what you want done and how...
Beegirl...you give me hope knowing you are doing better, if I can just NOT have diarhhea, I may be ok.
well gotta run..work
all of you ..be strong and I am so glad I found this site.
Flower
Hi all. Nice to hear from others. I've read some of the prior posts and it's good to hear success stories like yours Penny. You are so positive all the time like Flower. Flower's good luck next month on your removal.....I think things will be good because you are so positive like Penny. Bea-- sorry to hear about your recent fall and latest unsuccessful repair. Could you share with me what types of rvf repairs you have had so far. I don't know what I should do next and am concerned. I would appreciate hearing your thoughts about handling an ostomy, etc. CJ--how are things with you? Hope all is well. Let me know how you all are doing.
B-- Sounds like yours is also a success story too. You had an ileo, surgery, reversal and healed. These successes give me hope for my future and I hope we will all be writing about our success stories once we're done with all this rvf (healed and all good) so others can know these actually heal! That's my goal....if this ever goes away for me (I pray every day!), I want to support all those who ever have to endure this ordeal. Since I am a newbie to this rvf ordeal, I am having a hard time in the positive thoughts department. I have so many questions that I hope you all can share with me to help me learn what you already understand and know. I have been researching the topic and the info is quite overwhelming right now. Thank you all for your positive posted comments for those of us struggling along.
B-- Sounds like yours is also a success story too. You had an ileo, surgery, reversal and healed. These successes give me hope for my future and I hope we will all be writing about our success stories once we're done with all this rvf (healed and all good) so others can know these actually heal! That's my goal....if this ever goes away for me (I pray every day!), I want to support all those who ever have to endure this ordeal. Since I am a newbie to this rvf ordeal, I am having a hard time in the positive thoughts department. I have so many questions that I hope you all can share with me to help me learn what you already understand and know. I have been researching the topic and the info is quite overwhelming right now. Thank you all for your positive posted comments for those of us struggling along.
Kitty,
I am doing okay! I don't know how much of my story you remember.... but I got an RVF from the birth of my first child (it will be 7 years this coming May). I had another baby about 3 years later and the doctor tried to repair my fistula at delivery. It was unsuccessful! The good news is that during all this time I only had gas symptoms. I didnt' even realize something was wrong with me until I had a horrible stomach virus with horrible diarhea when I got pregnant with my second child. That's when I noticed stool for sure was coming out the wrong place. UGH!
When my second child turned 3 I decided to get this RVF repaired by a colon rectal surgeon. So I did that this past summer. I had a flap repair done and 2 weeks later it failed. I immediately went to my doctor who couldn't believe this had happened and he had me back in surgery. He tried to restitch the repair. A week or so after that I passed gas and knew things weren't right.
Six months have now gone by, and i have been hoping that it would just heal. My symptoms are mainly occasional gas. I only pass stool if I have diarrhea which hardly ever happens. I try not to get upset too much because that sometimes brings on loose stools for me.
So, I am just trying to decide if I should just live like this for now.... or possibly try a plug repair. My doctor said that would be the next repair he would reocommed for me since it is no cutting.
I am a teacher and can only have surgery in the summer when I am off. I don't know if I am up for another repair this summer. I think I am leaning towards just living with it and possibley fixing it in the future.
It's a tough decision because you hear so many unsuccessful stories! I am happy to have found this site and know that I am not the only one that has this problem.
Write back if you have more questions about anything.
CJ
I am doing okay! I don't know how much of my story you remember.... but I got an RVF from the birth of my first child (it will be 7 years this coming May). I had another baby about 3 years later and the doctor tried to repair my fistula at delivery. It was unsuccessful! The good news is that during all this time I only had gas symptoms. I didnt' even realize something was wrong with me until I had a horrible stomach virus with horrible diarhea when I got pregnant with my second child. That's when I noticed stool for sure was coming out the wrong place. UGH!
When my second child turned 3 I decided to get this RVF repaired by a colon rectal surgeon. So I did that this past summer. I had a flap repair done and 2 weeks later it failed. I immediately went to my doctor who couldn't believe this had happened and he had me back in surgery. He tried to restitch the repair. A week or so after that I passed gas and knew things weren't right.
Six months have now gone by, and i have been hoping that it would just heal. My symptoms are mainly occasional gas. I only pass stool if I have diarrhea which hardly ever happens. I try not to get upset too much because that sometimes brings on loose stools for me.
So, I am just trying to decide if I should just live like this for now.... or possibly try a plug repair. My doctor said that would be the next repair he would reocommed for me since it is no cutting.
I am a teacher and can only have surgery in the summer when I am off. I don't know if I am up for another repair this summer. I think I am leaning towards just living with it and possibley fixing it in the future.
It's a tough decision because you hear so many unsuccessful stories! I am happy to have found this site and know that I am not the only one that has this problem.
Write back if you have more questions about anything.
CJ