I have wondered if I have an rv fistula for about a year. I was initially assured that it was a bartholin cyst which was successfully treated with antibiotics. It returned and was again given antibiotics and a referral to a gynecologist. He said there was no bartholin cyst present but there was a sinus visible. He doesn't believe it goes anywhere. However, I have ongoing redness and irritation in the vagina around the opening of the sinus. I don't see any discharge however. There is air coming from vagina when I empty the pouch.There is a lump which sometimes, not always, has a white head. I find it really burns and stings when the pouch is full or when I'm emptying.  I could live with the irritation if it didn't prevent sexual intercourse - it's much too painful (topical estrogen has helped the vaginal tissue but this one particular area is not helped by it).  I have had negative biopsies and cultures. An MRI is scheduled four months from now. Any thoughts of what else it might be? I am feeling pretty down about it. 

A long post to read, I know...sorry.

Original Post

Hmmm, that does sound nasty. The air escaping is suspicious. Does that only happen when you empty the pouch or at other times as well? Don't know if that makes a difference, diagnostically, just wondering.

 

I will say that I had several tests which could not definitively detect the point of my R/V fistula at first, and what finally worked was a contrast test where they pushed dye-water in through my rectum. When I felt it leaking out the vagina they pushed me into the machine and took pictures -- that was the only time they were able to pinpoint the blasted thing and accurately trace the path.

 

Don't be discouraged if the different tests take a bit to get a clear picture; sometimes they do, but it is important to get an accurate diagnosis.

 

Best,

Gin

Thanks so much for your reply. I only notice the air when emptying. Did you also have an MRI? How did they treat your fistula? Successful? (So many questions...) If it didn't interfere with sexual intercourse I could live with the burning and stinging. I'm still hoping it might be something else. There is definitely a little lump where it's irritated. 

Where exactly does the bump appear?

 

It's that part that sounds suspicious to me about it being a fistula; the symptoms just sound "off" although the air leakage does sound like a fistula. But if you are only leaking air, the burning and stinging don't make sense, either.

 

I've had several MRIs, CAT scans, the works. Always so much fun!  But they are good tools for determining what is going on.

 

Did the Gyno have no other advice? It really doesn't sound like anything I've heard of before -- which may mean there is a good chance of it not being an R/V fistula (crossing fingers).

 

Gin

It's all very confusing and frustrating. The gynocologist has not really suggested a reason although he doesn't think the sinus leads anywhere. The 'lump' is growing by the day again but the gyno is really hard to get into. I have an appointment with my GP but not for a few weeks. She too is tough to get into see. I can't wait til Oct (MRI) to figure this out. It really impacts my quality of life. 

Rachelraven how long did you have seton drain? Were you in pain?  I just got seton on Thursday and I'm in so much pain just wondering when I begin to feel some relief. I also had mri's, barium X-ray, pouchoscopy etc to find fistula which they couldn't find until exam under anesthesia on Thursday. Thank you

Hi JHendrix,

I had a fistula in the area between the rectum and the vagina, but more on the anal side. It was very difficult for me to get a diagnosis. I was bounced back and forth between my primary care doctor, the gynecologist and the gastro. It took 4 years for them to figure out what was going on and by that point it was pretty obvious what it was because the lump got so big that it actually started draining puss through to the vaginal side. I had a CT scan and MRI and neither definitively showed the fistula. It wasn't until my colorectal surgeon did surgery that he was able to tell what was going on. 

I too had burning and stinging and since mine was more on the anal side it was difficult for me to pass stool because the anal opening was so small (TMI - I know!). I also suffered from vaginal infections and pain with intercourse. I found that doing a sitz bath with plain epsom salts helped relieve some of the pain and helped the lump go down a bit. (I ordered the sitz bath online from Walgreens.)

I would definitely suggest talking to a colorectal surgeon because sometimes the fistula can't be seen with an MRI. 

Maey2462, 

Are you feeling better now from your seton surgery? It took about 2 weeks for me to feel back to normal after my first seton surgery. One thing that really bothered me was all the extra clean up from the drain. I recommend getting a plastic squeeze bottle and fill it with some warm water to use after bowel movements. It will help get the seton completely cleaned off. You can also put some A&D ointment on the seton itself so that stool doesn't stay on the drain. I also found that putting some gauze pads around the seton kept it from digging into my skin.

I had my first seton put in for about 8 weeks, then had it removed. Within 48 hours, my fistula returned and I had a seton put back in because I felt so much better with it in. I kept that one in for about 4 months then decided to have a more aggressive surgery to actually repair the fisula. I had my 3rd surgery a year ago and I am still doing good.   

Hope this helps! 

Thanks for the input Sweetie 1234 (love the name). I had an MRI about a month ago which showed two tracts - one from the connection to the vagina and the other is  a tract that does not appear to go all the way through. I saw the surgeon yesterday and the plan is to admit me in January to explore  to see exactly what we're dealing with (pouchogram, probe under sedation and another MRI to rule out Crones (which I don't think is the case). It will depend on the findings but it appears the first course of action is likely a flap advancement (ya, I talk like I know what I'm talking about!). He did say that he would likely start there and hopefully it's successful. If not, he spoke about a pouch revision which would require going to Toronto. I had always thought that going back to an ileostomy bag would be a last choice but would end the symptoms if need be.It appears that it would not. It is obvious the discharge is mucous and not stool and, therefore, the mucous would still be there even with the bowel detached. I am hoping for the best. 

Hi JHendrix, 

Sounds like you're making some progress and getting answers. That is great news that the tract doesn't go all the way through. That's exactly how mine was because I had the mucous, but thankfully not the stool passing through. After the 2 seton surgeries I had the flap surgery and all went well. It's been a year and still symptom free. My surgeon also talked about using muscle from my leg to fill in the hole, but mine wasn't too bad so he decided the flap would work. I think surgeons always talk about doing the pouch reversal because to them it's the easier way out and they won't have to deal with us any longer. Although, that is not an option for me. I will avoid the reversal at all costs! 

I should mention that the recovery time for the flap surgery was about 3 weeks. It was much longer recovery than when I had the seton surgery. I don't want to scare you, but should warn you that the recovery from the flap surgery is long and painful! Be prepared to take some extra time to heal. On the bright side, once you do heal and the pain subsides it is all worth it. Your quality of life can go back to normal and your intimacy can go back to the way it was before the fistula! You no longer have to worry about the mucous, the burning or the pain! 

Good luck with your upcoming appt. I hope all goes well  

I  find your response comforting and hopeful. Initially when you referred to having had three surgeries with the only the third one making a difference, I felt disheartened. But the fact that the flap worked for you is positive for me as I believe that is my surgeon's first choice for the tract that drains into the vagina and likely no treatment for the one that doesn't go all the way through. He didn't mention setons at all. I am prepared to put up with the pain and healing etc. if it means, as you seem to have been able to, get back to a normal quality of life and intimacy.Thank you for sharing your experience with me. As I said, I do feel more hopeful after reading it. 

Sometimes I find these posts kind of just quit and I'm left hanging...what happened? how did this situation work out? So in case anyone is doing a search re rv fistulas and come across this, I'll provide an update. Its now 8 months later. I had the flap advancement surgery in early June 2016. Almost immediately there was air and then stool in the vagina. The plan was then to do a diverting loop ileostomy to give the fistula a chance to heal without 'activity down there'. I had the  ileostomy surgery at the beginning of July. Unfortunately the surgeon had a momentary lapse of clarity and mixed the two openings up. The inactive mucus opening sat nicely in the center of a beautiful stoma while the active, stool spewing opening was flush against the skin at the bottom of the stoma. The result was that it was impossible to get that bottom one sealed and I had constant stool on my skin. Very painful and frustrating. It took a while to see what was actually going on but finally a doc saw it while active. I had revision surgery in early August. The plan was to recover, get strong, do another MRI to see if another flap was in order. The recovering healing getting strong part has not yet worked as I've now been diagnosed with pyodermal gangenosum which apparently is a rare (what makes me so damn special?) an autoimmune response on the skin causing ulcerations. Excruciatingly painful. The weepy sores have made a seal impossible. I'm about to start on topical steroids today and, if not successful, oral I guess. So that's where its at. In the middle of hell as far as I can tell. I have been having conversations with my immune system...it needs to learn to settle down a little. To sit on its hands, bite its tongue for a bit before going into hyper vigilant over reaction. Will keep this updated in the event it resonates with any others' experiences. I would sure love to hear other's experiences that are similar to know what I might expect. (This is way too long post I know)

Hi JHendrix-

I am so sorry to hear of your rv fistula and all the associated problems.  I can identify, but you have hit the extreme with your 'botched' surgery, new diagnosis and painful skin symptoms.  I also had an rv fistula with flap surgery, plug surgery, seton placement and finally, an ileostomy coupled with biologics to heal the fistula.  It did not work for me. I had my jpouch removed first.  Then a urogynecologist did a different sort of flap repair and a colorectal surgeon did the mucosectemy.  It seems to have worked as far as I know.  But at this point it doesn't matter since my jpouch is gone.  I was so tired of dealing with the rv fistula and having stool pass through areas it shouldn't, I opted for the ileostomy knowing deep down it was probably going to be permanent.  But that was a choice I made without seeking further surgical repairs and continued biologics.  For me, I was tired of it.

I truly hope you can heal and continue to gain strength.  Your post is extremely helpful for anyone that has an rv fistula seeking treatment options.  Healing thoughts sent your way! Please keep posting!      

As an update, I had a couple of stoma revisions and stayed with the diverting ileostomy for a year and 8 months. Investigation under anesthetic showed the r v fistula had healed and  the j pouch was reattached 10 days ago. So for so good in terms of no rv fistula symptoms. 

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