I'm not sure who was the guest on page 4 who asked about boil like developments on your epesiotomy...but from personal experience, those sound like absesses. That's how I finally got diagnosed with my RVF...it was about a year after delivering and I still couldn't sit right and then I got this blister thing that hurt really bad...I went to get checked and the new dr. knew right away what the problem was...yes, it was infected inside and absessing. FYI, I'm 27 now, and have lived with these fistulas for about 3 years now...it's miserable and hope you don't have to go through it!
Postmonkey - it sounds like you will have a very easy and successful repair. Do you know what procedure they are planning on doing for you? It doesn't sound like the fistula goes through the muscle so that's great news to start with, really!!
I'm sure I've mentioned this elsewhere, but I would recommend getting a rectal ultrasound prior to any repairs being done, so the doctors know for sure where the fistula is and where is runs. Mine is above my sphincter on the rectal side, goes through the muscle and out to my perineum...it used to go all the way through to my vagina, but I got that repaired...then this one developed. Anyway, the ultrasound will show them exactly where the tract is, and if there are any additional ones in there anywhere. It can also tell them if you have any defects to your sphincter muscles.
The blue dye test is great to confirm that there is a connection, but that still won't tell them where the tract is in between...
I have been through 8 surgeries and have had probably every procedure out there done on me, so please feel free to ask any questions you might have...I really want to help others out there with this so they don't have to go through what I have...
Postmonkey - it sounds like you will have a very easy and successful repair. Do you know what procedure they are planning on doing for you? It doesn't sound like the fistula goes through the muscle so that's great news to start with, really!!
I'm sure I've mentioned this elsewhere, but I would recommend getting a rectal ultrasound prior to any repairs being done, so the doctors know for sure where the fistula is and where is runs. Mine is above my sphincter on the rectal side, goes through the muscle and out to my perineum...it used to go all the way through to my vagina, but I got that repaired...then this one developed. Anyway, the ultrasound will show them exactly where the tract is, and if there are any additional ones in there anywhere. It can also tell them if you have any defects to your sphincter muscles.
The blue dye test is great to confirm that there is a connection, but that still won't tell them where the tract is in between...
I have been through 8 surgeries and have had probably every procedure out there done on me, so please feel free to ask any questions you might have...I really want to help others out there with this so they don't have to go through what I have...
Hi Shellsue42- as of now the specialist mentioned the transvaginal inversion repair....did you have that one?
Also, I do have some problems with rectal incontinence with soft stool. It leaks out the back end...not a lot...but just enough to cause some skin irritation. Did you have this with your fistula? I'm hoping that doesn't mean my fistula involves the muscle and they just don't know it yet....
I hope I do have a easy and successful repair. I am praying for that everyday. Thanks for you input. I am sure going to request that rectal ultrasound so that they know for sure where the fistula is coming out.
Also...shellsue42....since you had your first fistula repaired from the vagina....where is your new fistula draining? Did you have the transvaginal repair done? Do they know why it caused a new fistula to form? Good luck with future treatment. Take care.
Also, I do have some problems with rectal incontinence with soft stool. It leaks out the back end...not a lot...but just enough to cause some skin irritation. Did you have this with your fistula? I'm hoping that doesn't mean my fistula involves the muscle and they just don't know it yet....
I hope I do have a easy and successful repair. I am praying for that everyday. Thanks for you input. I am sure going to request that rectal ultrasound so that they know for sure where the fistula is coming out.
Also...shellsue42....since you had your first fistula repaired from the vagina....where is your new fistula draining? Did you have the transvaginal repair done? Do they know why it caused a new fistula to form? Good luck with future treatment. Take care.
Hi fistulaposter....
I have not heard that obstetrical fistulas are harder to repair. I am hoping not. ;-)
I also have not had any nerve damage in my legs or heard of that associated with fistulas. Are you having some pain into your legs?
I am sorry to hear that you have seen four docs and still no answers. That is horrible. What area are you in? If it happens to be the seattle area I could give you the name of the doc I saw.
Good luck.....my little man was worth it....but this sure does suck!
I have not heard that obstetrical fistulas are harder to repair. I am hoping not. ;-)
I also have not had any nerve damage in my legs or heard of that associated with fistulas. Are you having some pain into your legs?
I am sorry to hear that you have seen four docs and still no answers. That is horrible. What area are you in? If it happens to be the seattle area I could give you the name of the doc I saw.
Good luck.....my little man was worth it....but this sure does suck!
I didn't have any repairs done from the vaginal side, it's all been from the back end from a colorectal surgeon.
The first thing they did to repair my RVF was a Mucosal Advancement Flap from the rectal side...they cut a flap from my colon or something and pulled it down over the fistula. Here's what I found on it:
Quote:
I believe this to be the better option rather than from the vaginal side as the pressure from the rectum, through the fistula opening, will put pressure on the flap in the vaginal side and could push it open, as opposed to having the pressure on the rectal flap to help hold it closed. I don't know if that makes any sense to you...my dr. had to draw me pictures! :)
What my dr didn't know was that my sphincter was defective, so even though this may have repaired the fistula, it didn't and I also lost most of my control with soft stool...both my inner and outer sphincter rings were disconnected. He admitted to me that he wished he had done the ultrasound first so he knew that...
After that, I had an overlapping sphincterplasty...basically they cut all the way through again...overlapped and reconstructed...this by far was the worst experience of my life...and no, they don't know why another fistula developed, but in the healing process of the other procedure, this one developed. It currently drains to my perineum...in between my 2 holes...from my rectum. I've tried 2-3 surgisis plugs but they have a very low success rate and fell out within 2-3 days...that sucked and was very discouraging!!
I've started seeing a new doctor who did the ultrasound and can see that my sphincter is still defective and that my fistula goes right through the muscle, so in 2 weeks, I'm going in for another complete reconstruct of my entire sphincter and perineum. She thinks I have a pretty high success possibility...I'm really trusting her because I don't think I can handle another failure with this huge of a surgery.
It kinda sounds like maybe you have slight defect to your outer/lower sphincter ring, because your fistula is low...but you would have to do that ultrasound to know for sure. That would explain your slight incontinence, or it's possibly just from the fistula...I know I can hold it for a long time, but when it gets to a certain point, there is just nothing I can do about it! And yes I did and still do have it happen! What's nice is that now my daughter is potty training, so it makes her feel a bit better that mommy has "accidents" too. :)
Is your doctor an OB/GYN or a colorectal? I would recommend, just for your sake and information, to maybe consult with a colorectal specialist and get his/her input on what they would do to repair this problem. This is an extremely sensitive area, and even more sensitive for women to have to go through at all.
'm glad you found this site and I hope I was a bit more helpful. Good luck and keep us posted!
The first thing they did to repair my RVF was a Mucosal Advancement Flap from the rectal side...they cut a flap from my colon or something and pulled it down over the fistula. Here's what I found on it:
Quote:
The flap is raised, consisting of mucosa and submucosa; some surgeons include circular muscle as well. Meticulous hemostasis is imperative. The fistula tract is curetted gently. Circular muscle is closed over the fistula. The tip of the flap, which includes the fistula opening, is excised. The flap is sutured in place with simple interrupted absorbable sutures, effectively closing the rectal opening of the fistula. The vaginal side of the fistula is left open for drainage. This approach separates the suture line from the fistula site and interposes healthy muscle between the rectal and vaginal walls. Proponents point out that the relatively high pressure within the rectum serves to buttress the repair in contrast to a transvaginal repair, in which the intrarectal pressure is more prone to disrupt the repair. If indicated, sphincteroplasty can also be performed concomitantly.
I believe this to be the better option rather than from the vaginal side as the pressure from the rectum, through the fistula opening, will put pressure on the flap in the vaginal side and could push it open, as opposed to having the pressure on the rectal flap to help hold it closed. I don't know if that makes any sense to you...my dr. had to draw me pictures! :)
What my dr didn't know was that my sphincter was defective, so even though this may have repaired the fistula, it didn't and I also lost most of my control with soft stool...both my inner and outer sphincter rings were disconnected. He admitted to me that he wished he had done the ultrasound first so he knew that...
After that, I had an overlapping sphincterplasty...basically they cut all the way through again...overlapped and reconstructed...this by far was the worst experience of my life...and no, they don't know why another fistula developed, but in the healing process of the other procedure, this one developed. It currently drains to my perineum...in between my 2 holes...from my rectum. I've tried 2-3 surgisis plugs but they have a very low success rate and fell out within 2-3 days...that sucked and was very discouraging!!
I've started seeing a new doctor who did the ultrasound and can see that my sphincter is still defective and that my fistula goes right through the muscle, so in 2 weeks, I'm going in for another complete reconstruct of my entire sphincter and perineum. She thinks I have a pretty high success possibility...I'm really trusting her because I don't think I can handle another failure with this huge of a surgery.
It kinda sounds like maybe you have slight defect to your outer/lower sphincter ring, because your fistula is low...but you would have to do that ultrasound to know for sure. That would explain your slight incontinence, or it's possibly just from the fistula...I know I can hold it for a long time, but when it gets to a certain point, there is just nothing I can do about it! And yes I did and still do have it happen! What's nice is that now my daughter is potty training, so it makes her feel a bit better that mommy has "accidents" too. :)
Is your doctor an OB/GYN or a colorectal? I would recommend, just for your sake and information, to maybe consult with a colorectal specialist and get his/her input on what they would do to repair this problem. This is an extremely sensitive area, and even more sensitive for women to have to go through at all.
'm glad you found this site and I hope I was a bit more helpful. Good luck and keep us posted!
Oh and Fistulaposter!! Yes, I did have a bit of nerve damage to my legs, but not until after the first few procedures...and it was possibly the medication I was on...I would get pain and tingling down to my knee on the inside on my left thigh! Really weird and the dr couldn't explain it. Thankfully it went away.
Here is a bit more information on the different options for flap repairs from emedecine:
Quote:
Quote:
Transanal advancement flap repair: This approach is very safe. Results are good to excellent, with success reported in 77-100% of patients in various series. More recent reports note the importance of preoperative assessment of anal sphincter integrity. Sphincter repair is easily performed simultaneously and increases the success rate of RVF repair. Vaginal childbirth after RVF repair is not associated with increased risk of RVF recurrence. However, if a sphincter repair is performed along with the RVF repair, many surgeons recommend cesarean delivery for subsequent pregnancies in order to avoid disruption of the sphincteroplasty.
Transvaginal inversion repair and conversion to complete perineal laceration with layer closure: Results with these approaches can be acceptable in selected cases, as noted in the section on surgical approaches. The author's preference is to proceed with transanal advancement flap repair at the first repair attempt.
Thanks for all the info. I am going to ask my doc to also send me to a colorectal specialist and get his/her opinion. I will ask for the ultrasound and make sure they know where the fistula is on both ends.
I am very scared to have this repaired....but at the same time...I'm very scared to live with it the way it is. I am going to do everything I can to make sure it is done right...but there is a point where you just have to trust your docs.
XD
I am very scared to have this repaired....but at the same time...I'm very scared to live with it the way it is. I am going to do everything I can to make sure it is done right...but there is a point where you just have to trust your docs.
XD
Hi everyone. I just found this website and its nice to know that i am not going through this alone. I had my daughter last August and had a 4th degree tear and now have a RVF. I am getting it repaired on April 7th. I have a few questions about getting pregnant again. My doctor said I have to wait 6 weeks to have sex again - is it ok to try and get pregnant again that soon? Did anyone have any complications from the surgery while being pregnant? I will for sure have a C-section next time. Good luck to everyone - my heart goes out to you all.
hi everyone. i have been reading this site for a while but this is my first time posting. I beleive i have an RVF but after 5 doctors and a lot of tests, no one can seem to find it. i have doctors constantly asking me if i'm "sure" that the air is coming from the vagina and not the rectum. um YEAH i'm sure.
It started around thanksgiving time with severe external irritation and air in vagina, gyno prescribed me cream after cream, didnt find any infections or anything in urine. sometimes i have pain after urination as well ( i beleive it to be part of the whole irritation thing). saw urologist, he did cystoscopy and kidney u/s (both normal). started seeing a gasteroenterologist, he did a barium enema (with gastrograffin), colonoscopy and a small bowel follow through (with both barium and gastrograffin). still can find nothing.
Saw a new Gyno this week and she tried to push iodine gel with her fingers thru a possible fistula, but could not, so then she states to me that its her opinion that the irritation and air are two seperate things. I said, well, i disagree, b/c i can FEEL the air burning/irritating me. she then refers me to colorectal surgeon, who i saw yesterday. he is going to do a sigmoidoscopy (yea! more colon cleansing) but no appt for three weeks. In meantime he wants gyno to do a hysterogram but they havent called me back yet.
I am CONVINCED i have this problem, b/c of the non stop irritating air from my vagina. it is not however, big gushes of air, rather bubbling like air. My question is, how do i get someone to find it? for those of you that it took months or years to find yours, how did you finally find it?? How do you get them to take you seriously that yes, this IS coming from your vagina, not your rectum and that you are not stupid?
what about u/s, MRI and CT scan? if these tests can diagnose fistula, why have i not had one doctor suggest it? do i demand one at this point? would they even be effective in such a small fistula?
At this point, I am getting depressed, gaining weight, and having a hard time sleeping. I want to have surgery and move on with my life, I am currently the only caregiver to three young children (my husband is recently deployed for a year) with not much family support. I do not feel I can do a good job at this if i am not feeling well on a daily basis.
Oh i should also mention that i had a c-section in 2000 and a 4th degree tear in 2005 with the birth of my son.
oh also, the only time i feel better is during my period.. does anyone else have a relief of symptoms during their period? of course i stll have air at this time but the irritation is much less.. not sure why that is.? lubrication?
It started around thanksgiving time with severe external irritation and air in vagina, gyno prescribed me cream after cream, didnt find any infections or anything in urine. sometimes i have pain after urination as well ( i beleive it to be part of the whole irritation thing). saw urologist, he did cystoscopy and kidney u/s (both normal). started seeing a gasteroenterologist, he did a barium enema (with gastrograffin), colonoscopy and a small bowel follow through (with both barium and gastrograffin). still can find nothing.
Saw a new Gyno this week and she tried to push iodine gel with her fingers thru a possible fistula, but could not, so then she states to me that its her opinion that the irritation and air are two seperate things. I said, well, i disagree, b/c i can FEEL the air burning/irritating me. she then refers me to colorectal surgeon, who i saw yesterday. he is going to do a sigmoidoscopy (yea! more colon cleansing) but no appt for three weeks. In meantime he wants gyno to do a hysterogram but they havent called me back yet.
I am CONVINCED i have this problem, b/c of the non stop irritating air from my vagina. it is not however, big gushes of air, rather bubbling like air. My question is, how do i get someone to find it? for those of you that it took months or years to find yours, how did you finally find it?? How do you get them to take you seriously that yes, this IS coming from your vagina, not your rectum and that you are not stupid?
what about u/s, MRI and CT scan? if these tests can diagnose fistula, why have i not had one doctor suggest it? do i demand one at this point? would they even be effective in such a small fistula?
At this point, I am getting depressed, gaining weight, and having a hard time sleeping. I want to have surgery and move on with my life, I am currently the only caregiver to three young children (my husband is recently deployed for a year) with not much family support. I do not feel I can do a good job at this if i am not feeling well on a daily basis.
Oh i should also mention that i had a c-section in 2000 and a 4th degree tear in 2005 with the birth of my son.
oh also, the only time i feel better is during my period.. does anyone else have a relief of symptoms during their period? of course i stll have air at this time but the irritation is much less.. not sure why that is.? lubrication?
one more question.. is it at ALL possible for air bubbles in vagina (that are exremely irritating) to be cause by any type of URINARY fistula? i've already had a cystoscopy.. but at this point i will consider any options if they cannot find my problem. from what i've looked up online i dont see a connection but i thought i'd ask any experts out there.. thanks :-)
Scottsdalemomma--Hi! Yes, you are not alone! I felt like I was totally alone with this special fistula besides, like someone else mentioned, women in third world countries! I am not totally sure about getting pregnant after the surgery, but I do not see how it could be a problem if your body has healed well from the surgery. I do not have a date set for my surgery yet, but I want to get pregnant soon after the surgery too! Do you live in Scottsdale AZ? I am in Utah! I am glad to have found this messageboard. I have found very little helpful information on RVF. Now that I think about it, if you are in AZ it seems like I read something on a doctor in AZ that has lots of experience with RVF. I will look for his name and post it!
Mina---Don't you just love having to explain to the doctors that you REALLY do feel the air and that you are not making that up? It is my very favorite when a doctor asks me "Are you positive the gas is coming through your vagina?" I always tell them I this is the last condition I would like to have and I am not making it up:) Sorry they are having trouble finding yours. It seems like you have been through a lot of testing without answers. That is so difficult. I have not had very many tests besides the blue dye test and exams, but they can't find mine either! I cannot answer your questions, but I hope you can get help soon:)
Mina---Don't you just love having to explain to the doctors that you REALLY do feel the air and that you are not making that up? It is my very favorite when a doctor asks me "Are you positive the gas is coming through your vagina?" I always tell them I this is the last condition I would like to have and I am not making it up:) Sorry they are having trouble finding yours. It seems like you have been through a lot of testing without answers. That is so difficult. I have not had very many tests besides the blue dye test and exams, but they can't find mine either! I cannot answer your questions, but I hope you can get help soon:)
shellsue---Nerve damage is no fun:( I actually got nerve damage during the delivery of my daughter (the same time I got the RVF). I have nerve damage to both of my legs (bilateral femoral nerve damage). According to the endfistula website, there is a connection between nerve damage and fistulas during delivery....but none of my doctors have been able to tell me why. I would love to find out why though. Sorry to hear about your nerve damage and i am glad it went away!
FistulaPoster - thanks for replying so fast!! Yes, I live in Scottsdale, AZ. I have been up to Lake Powell in Utah - beautiful!! I would love to see more of the state one day though. I posted somewhere on this website again this morning - I didn't know that this one posted b/c I didn't have a username yet.....anyway......someone told me that I may have a hard time getting pregnant again (not sure why b/c the surgery is up a different hole:-) ) and that I may have to be on bed rest to prevent lots of pressure being down there. Has anyone heard this before?
I read some of your old posts - and find a new doctor!! The first doctor I went to (a male) told me that I was imagining the problem and said if it was really bothering me to wear a tampon everyday. I found a new doctor right away (female). I told her my symptoms and she diagnosed me right away and set up a surgery date. what tests have they done on you to look for the fistula? My doctor just looked and saw it right away, but she said if she couldn't see it, they would do a dye test with a tampon. it is so sad to read all these stories on here about how poorly the doctors are treating you all.
I read some of your old posts - and find a new doctor!! The first doctor I went to (a male) told me that I was imagining the problem and said if it was really bothering me to wear a tampon everyday. I found a new doctor right away (female). I told her my symptoms and she diagnosed me right away and set up a surgery date. what tests have they done on you to look for the fistula? My doctor just looked and saw it right away, but she said if she couldn't see it, they would do a dye test with a tampon. it is so sad to read all these stories on here about how poorly the doctors are treating you all.
I looove Lake Powell! We used to have our family reunions there every summer:) Beautiful place!
I have never heard that about the pressure during pregnancy and needing to be on bedrest, but it kind of makes sense to me. I have actually tried to google about future pregnancies and any risks involved and I have found nothing. I also have been shocked of the lack of "groups" online for women with RVF...maybe I should take an initative and start one!:-) Although, this is a great place too!
Finding a good doctor for unusual problems is so hard! Its not like you can go ask your friends and family because more than likely they don't have RVF....lucky us:) So, I am choosing to visit a lot of doctors until I find one that I feel comfortable with and they know and have dealt with RVF patients. Your surgery and coming up soon! I wish mine was...I'm tired of living like this.
I have never heard that about the pressure during pregnancy and needing to be on bedrest, but it kind of makes sense to me. I have actually tried to google about future pregnancies and any risks involved and I have found nothing. I also have been shocked of the lack of "groups" online for women with RVF...maybe I should take an initative and start one!:-) Although, this is a great place too!
Finding a good doctor for unusual problems is so hard! Its not like you can go ask your friends and family because more than likely they don't have RVF....lucky us:) So, I am choosing to visit a lot of doctors until I find one that I feel comfortable with and they know and have dealt with RVF patients. Your surgery and coming up soon! I wish mine was...I'm tired of living like this.
yeah I tried googling everything - and there is like no info at all. well if u start a group let me know! Did you have a boy or a girl? I had a girl on August 9th. I really want to try and get pregnant again this summer and a c-section sounds great!! After all the problems I have had I would recommend one to everyone:-) On tuesday I go to the hospital for an hour appointment and they are going to go over the whole surgery and recovery for me and answer questions so I'm going to ask about get pregnant again. On Thursday I have to go to some horrible appointment to test the strength of my sphincter muscle. They stick a balloon up your butt!!!! such embarassing and horrible appointments XD I guess it is not connected or something - but I am going to wait on getting it fixed and see a physical therapist for it instead - who knew that they have PTs for this!!!
Are you feeling better down there? Any new symptoms? Any new doctor appointments?
Have you been to AZ before?
Are you feeling better down there? Any new symptoms? Any new doctor appointments?
Have you been to AZ before?