Rectovaginal Fistula: The Crohn's Symptom No One Talks About
Have you ever heard of an RV fistula? “RV” stands for “rectovaginal,” and an RV fistula is a potential symptom of Crohn’s disease in women.
You know that simply having IBD (inflammatory bowel disease) as a woman can be extremely difficult. You may feel as though you’ve lost a part of your femininity because, as the world has told us, women don’t poop. Or fart. They certainly don’t have stool leaking out of their vaginas.
But we know better.
I spoke with a friend who has Crohn’s and has dealt with RV fistulas for 15 years. In sharing her insights, my hope is to spread awareness and include RV fistulas in the Crohn's conversation.
An RV fistula is an abnormal connection between a part of the bowel and the vagina. This connection causes gas and stool to come out of your vagina without warning. RV fistulas occur most often in women with Crohn’s.
Symptoms of an RV fistula include:
Passage of gas, stool, or pus from the vagina
Foul-smelling discharge from the vagina
Recurrent vaginal or urinary-tract infections
Irritation or pain in the vulva, vagina, and the area between the vagina and the anus (called the perineum)
Pain during sex
All super-sexy stuff — am I right, ladies?
When to talk to a doctor
My Crohnie friend's story went like this: With her first RV fistula, she had excruciating joint pain that went on for weeks. Then, a lump appeared at the base of her vagina. Within a few days, the lump burst, releasing a brownish discharge. She immediately went to the doctor.
It’s important to know that not all RV fistulas are alike, and the symptoms can range from joint pain and itching to burning. If you start seeing a brownish or foul-smelling discharge, let your GI know.
What treatment looks like
My friend has gone through many different treatments to try and heal her RV fistulas. She shared a few of the procedures she’s gone through:
Mesh. A surgeon placed a surgical mesh over both ends of her fistula tract. This method worked for a few days, but ultimately didn’t hold.
Seton. My friend has had this procedure a few times. A seton is a thin, small rubber band that’s looped through the fistula tract and tied at the end. This keeps the fistula tract open and draining, preventing abscessing. While a seton can’t fully heal an RV fistula, it can help shrink the tract and prevent infection.
Fistula plug repair. My friend’s surgeon also tried inserting a cone-shaped device made out of biomaterial that grafts to the body through the fistula tract.
Graciloplasty. The surgeon removed a piece of my friend’s gracilis muscle from her thigh, then placed it on top of her fistula tract. This is similar to the mesh procedure, but is usually more successful. The hardest part of the recovery for my friend was the pain in her leg where the muscle was removed.
Advanced flap repair. The surgeon took out the fistula tract, and stitched the tract back down. My friend was cut from her vagina straight through to her sphincter muscle. This type of repair required wound packing, for three months, where the wound would be cleaned, and then wound packing material would be applied to the wound to help it heal cleanly.
Feeling like a woman
I could sugar-coat it and say that having RV fistulas won’t impact your sex life as long as you have a positive attitude. Unfortunately, RV fistulas can affect your sex life.
For my friend, sex became nonexistent during healing periods. Her confidence was shaken and her feelings of femininity kind of went out the door. But now she focuses on moving forward and finding the best treatment to get her sex life back.
Currently, she has setons, which means she can still have sex and sexual encounters. Her advice? Just use some wipes beforehand. Sometimes, she says, she has a split second of panic in the moment, but she tries to clean herself up to the best of her ability and hopes that her partner doesn’t notice and that nothing goes awry.
For the most part, nothing truly devastating has happened during sex for her.
So know your treatment options, talk to your doctor, and explain things to your partner, if you have one. It always helps to have a partner who is understanding and can still make you feel sexy in spite of it all.