I have been living with a recto-vaginal fistula for the past 7-years

I am a 26-year-old single mother of a healthy and handsome nine-year-old boy. I graduated from The University of California, Santa Cruz in June of 2013. I had been living with what is known as a Recto-vaginal fistula (Obstetric fistula) for seven years. I had a “pin-sized” hole located between the walls of my vagina and rectum. As a result, I passed air and fecal matter through my vagina uncontrollably.  The sound of air passing through my vagina was noisy and passing fecal matter, as you may think, is unhealthy and unsanitary and can cause numerous infections. It also makes a foul smell and I frequently itched.

When I was 16 years old, a junior in high school I learned that I was pregnant. Because I was uninsured, I applied for general assistance and government insurance Medi-Cal. I was 2 weeks past my due date when I was induced on July 17th, 2004 at 6:30 AM. I delivered my child at 2:00 PM that same day. I pushed for an hour total and Julian was brought into this world weighing a total of 8 Lbs, 10 Oz, and 21 inches long. Due to his large body size, I had fourth degree tears. The doctor had to make an episiotomy in order to keep me from tearing even more then I already had. After the delivery, the doctor sewed me back together and I was sent home the following day. So, what went wrong? That’s the question I had.

I believe I had this condition due to a combination of such things: giving birth to a large baby (8 pounds, 10 ounces), considering how small I was (120 pounds), and at such a young age (16 years old), in which my body may not yet have been fully developed. Along with this, I had a prolonged pregnancy (two weeks late) and I had a rushed delivery due to an induced labor. Lastly, I had government health insurance, which could possibly be a factor to all this but, unable to prove it. Thus, all these factors put me at high risk for a Rectovaginal Fistula. Not to mention, I should have had a c-section rather then a vaginal delivery due to the size of the fetus compared to my body size.

During the time that I was living with a fistula, I was not as active as I used to be because I was always afraid I would pass gas loudly. The air that passes through is extremely loud and unpredictable and the fecal matter comes in a liquid form with occasional small bits, usually after a soft stool.  I have to clean myself more thoroughly then an average woman would. I use wet wipes after every stool and clean inside my vagina area with my pointer finger to make sure all the fecal matter has been removed. It takes me five minutes to wipe myself clean, but when my stool is soft, cleaning inside my vagina is not sufficient enough. After soft bowel movements, I tend to leak leftover stool from my vagina for the rest of the day. Because of this, I must wear a panti-liner at all times throughout the day.  I have to use the bathroom often throughout the day so that I can continue to remove and clean the remainder of the fecal matter that continues to leak during the day.

After speaking with my gynocologist in 2011 (in Santa Cruz, 7 years later), I was referred to Dr. Brian Waddle, a colorectal surgeon. Upon our consultation appointment, we scheduled a surgery for June 24th, 2011. The procedure was called a Vaginal Advancement Flap, in which the doctor sews the hole together with overlapping skin. The first week I felt normal again and thought that my life was back, until the second week of recovery. The symptoms that I was experiencing previously had reoccurred, but this time it was worse. To the doctor’s knowledge, the fistula acquired an abscess, which in turn caused a tract to form; thus creating additional holes; causing for more air and fecal matter to pass.  I was in the middle of a summer class when I found out the surgery failed. Unfortunately, I had to withdraw from the class, as I was unable to focus academically. This first surgery put a damper in my studies, as you may know the cost of attending a University in California is pricey.  Because Santa Cruz was convenient and because I felt that the doctor already knew my body, and the fact that I didn’t know of any other doctor who could help me at the time, I decided to go back to him for a second try. We scheduled the surgery for August 26th, 2011, one-month later. The second surgery had to be the one, so I thought. I made sure I did absolutely NOTHING that could possibly reduce my chances of healing and making this one successful. But the same thing happened again, a week later, the symptoms came back. The doctor told me he could not do anymore for me and said it would be best to see a colorectal surgeon at Stanford University in Palo Alto. So he referred me over, apologized for his failure and wished me good luck. I had to wait several weeks to obtain an insurance authorization to see the doctor in Stanford.  Once the visit was approved, I waited several weeks until my appointment. While waiting, I noticed that the air and fecal matter passing through my vagina were more exaggerated then before having the two surgeries, believing that not only did the surgeries not work in my favor, but that the surgeries may have made the matters worse. I now pass air and fecal matter more then before seeking treatment.

On October 10th, 2011 I finally had a consultation visit with Dr. Kirilcuk, a colorectal surgeon who has had two-years of experience. Because this will be my third surgery, she believed we must take every bit of precaution so that the third time would be successful. In reality, this condition is rare, and being that I had two failed surgeries prior to the appointment, makes things a bit more complicated. She did, however, explain to me the process of healing a fistula, along with the success rate. She also explained to me that she would have her colleague, who is more experienced in this procedure; help her in the operating room. Although the doctor is confident, being that I have had two past, failed surgeries, my chances for success are much lower.  Dr Kirilcuk felt that in order to make this third surgery as successful as possible, making things more complicated due to the prior failed surgeries, an excess of precautions is the way to go.

Her suggestions are followed:

1st: There will be a scheduled EUA (Exam Under Anesthesia). This is where I will be put under anesthesia so they may look more in depth to see if the scar tissue (prior surgery area) is ready to be worked on again. The tissue must be soft and be able to stretch for the next surgery. This exam will be the determining factor as to whether or not I get a surgery now or if I have to wait.

2nd: An ileostomy bag will be put in place. This will redirect my colon so that my area will have a chance to heal without fecal matter passing through it and putting pressure on the wound. That means I will carry around a bag connected to the colon, which will be on my lower abdomen. This ileostomy bag will be put in place for a minimum of three months in order for the area to successfully heal. Depending on when and if the area heals, the bag will then be removed.

3rd:  A gracilis tissue will be removed from my inner thigh and placed over my problem area. A plastic surgeon would be needed for this procedure as he will remove this form of tissue from my inner thigh and place it in between the walls of my vagina and rectum to keep the holes from reopening and making the walls much stronger.

MY THOUGHTS ON THIS????? After thinking hard about the suggestions, I decided to seek further into this condition and lay out all my options on the table. HELL NO!

I would have the worst time accepting the place of the ileostomy bag. I know it would affect me socially, as I would have to carry around a bag connected to my abdomen. The ileostomy is known to make noises when a person has gas and it may smell when a bowel movement is being executed. I am a college student and sitting in a small classroom with a room full of my peers is not something I would feel comfortable doing.

Also, I would  have to take more time off from school. This means my expected year to graduate will be extended, which means I will have to take out extra loans to stay in school another year. I would have to plan to find employment now so that I can start saving for the rent that will be due but this economy does not make it promising. I would have to end up taking out more loans to help me with rent and bills.

The recovery time would take much longer then the priors. I would be healing from three different areas: the problem area, my inner thigh, and my lower abdomen. I would be placed in the hospital for at least 2 days. My problem area would take up to three months to fully and accurately heal.  Since the ileostomy would be in place for a minimum of 3 months, I would have mandatory check-ups at Stanford University every two weeks. After 3 months or more, and after all signs show that I am healed in the problem area, the ileostomy would be diverted. This process is supposed to be the easiest, but I have doubts. How would my colon react after such a long period of no passage? I would also have a large scar on my inner thigh that may affect my lifestyle. I am young and I enjoy wearing shorts and skirts.  If I am correct, this scar will be visible.

With all the thinking I had done, I finally decided to search further.

For a few months, I continued my research, hoping that I would find a doctor who could help. Any doctor I found online, I tried to call and schedule a visit only to find out that they did not accept my medical insurance. In the process of doing my research, I was able to find a lot of information about my condition and I ultimately became familiar with what I had. A lot of the information was based on research that was either really really back dated or based in underdeveloped countries such as Africa. A lot of what I found that had to do with America was minimal and rare. What I found was that either fistulas “do not exist” in America or if they do the failure rate of repair is high.

WHERE MY LIFE STARTED AGAIN…

I decided to write a letter to the Dr’s Show (a reality TV talk show). I explained to them my condition and how I had a hard time dealing with the news given to me by a Stanford surgeon about a temporary colostomy and a gracilis graft procedure in order to correct my condition. I asked if they could help me in finding a surgeon who is overwhelmed with experience in the condition I have.

I received a call back from the show 2-weeks ago. They asked if I could come to the studio and share my story (L.A.). So I did. I flew into Los Angeles on Monday, April 9th and came back the following morning. The morning I flew in to LA, I was taken to Paramount Studios where I was interviewed by a producer, in which he filmed it. I was then taken to Dr. Lisa’s office in Santa Monica, where she practices as a gynecologist. Without cameras, she examined me and consulted with me about my condition. She was very personal and was interested in my issue. She began to explain that, in her opinion, the temp. colostomy is not the way to go and that less invasive procedures can be done. We then filmed a reenactment of the consultation in the patient room. At the end of the film, she surprised me with information about how they found a surgeon in my area, who has done hundreds of thousands of these surgeries and travels to Africa every year, and that is willing to meet me, talk about my options, and possibly do the surgery pro bono! She had explained her desire to do the surgery herself, but because the aftercare of this sort of surgery is crucial to the recovery process, being closer to home is my best option and will result in absolute recovery.
Just for clarification, the whole process was paid for by the Dr’s Show. The flight, transportation, hotel, and food was taken care of so that my experience could be as relaxed as possible. After a long day of shooting and running around with the producers, I had enough time to tour around Hollywood and buy a souvenir for Julian and I. They placed me at the Renaissance Hotel, which is connected to the mall located in the heart of Hollywood. I had the best experience and I am so glad I chose to reach out, despite how personal this issue is. This will forever change my life!
A day after I returned home, Chelsea, the producer’s assistant, whom I have had the pleasure to meet and closely get to know, promptly emailed me with an appointment date and time with Dr. Tom Margolis, the surgeon they found in Burlingame. I would be consulting with him on Friday, April 13th, at 3:30pm. Please click on the following link to view his website.   http://www.bapelvicsurgery.com/index.html
 I was the only patient for the day, as it was his surgery day. We spent over an hour in the patient exam room discussing the issue. I had 28 questions written out for him and he answered every one of them. He did not rush the appointment what so ever. He was very kind and I felt very comfortable.
Dr. Margolis expressed to me that he is more then willing and confident to do the surgery. He drew me a picture of exactly where and how he will be doing the procedure. He has been doing these surgeries for 20+ years. The procedure is different from the previous two that I had done. He told me he has done 500+ surgeries just like this one and all but just a few have failed, and those that failed were due to things such as age and smoking. He says we have a 95% chance that it will succeed this time.
He believes that I may have just had a few bad run-ins with the “wrong” doctors and was thankful I didn’t go through with the Stanford doctors recommendations until further second and third opinions.
Dr. Margolis travels to Uganda every year with Medlend, in which he is the director of the organization. He performs these same surgeries and he also teaches Ugandan doctors how to do them. They save the most complicated cases for Dr. Margolis.
I underwent my third and last procedure on Thursday, April 26th at Valley Care Hospital in Pleasanton. No ileostomy and no gracilis flap was needed. Just a simple transvaginal fistula repair. Dr. Margolis spoke with the CEO of the hospital and when he heard my story, he allowed Dr. Margolis to do the procedure at his hospital gratis.
The Dr’s Show was there too and they filmed it all!

HOW THIS HAS AFFECTED MY LIFE:

This has affected me socially, educationally, and financially:

This issue has been affecting me socially for the past seven years, as I am afraid of being in small, quiet areas where the passing of air through my vagina can be easily heard. I can’t begin any kind of intimate relationship. How would I be able to explain my condition to him and how would he feel about it? I always have to carry panti-liners, wipes, and tampons in my purse and hope that there is a bathroom wherever I go. I am often itchy after a soft bowel movement and I am unable to relieve my itch in public.

This process has been a huge financial burden on me. I am a single mother and I am a student. I do not work. I receive money from the remaining financial aid that I am awarded for the quarter and I also receive government cash aid. With this aid, I am able to just get by with paying rent and bills. I don’t have enough money for extra expenses, including medical expenses and transportation to out of town medical offices. I spend much more money on gas, as I have to drive an hour to get to Stanford University from where I live.  I live alone with my child and my mother is employed full-time and lives two hours away from me. She is least likely to take time off of work, as she is afraid to lose her job. My son is in grade school and I take him and pick him up from school everyday. During my hospital stay and recovery time at home, I will need to find a live-in nanny to help provide for my child so that I can recover successfully. I cannot afford to pay for a nanny so this will be a huge challenge for me.

My main goal is to raise awareness to everyone, including gynecologists! I want the issue of a RVF recognized and try to prevent this from happening.

We need to look at what is causing RVF and prevent that from happening but also set clear a definite procedure in repairing a fistula, so women are not having 3 – 6 failed surgeries by 3 different, unexperienced surgeons.

I tried to contact the doctor who delivered my baby back in 2004. Come to find out, he died from a heart attack sometime in 2010. I did obtain a copy of my labor and delivery medical notes, which showed in fact that I did tear and an episiotomy was done.

Awareness is prevention!

Most of all, I want to let any women out there that has a RVF to not be scared, embarrassed, insecure and come forth because they matter and their health matters!

In the near future, I would like to speak out to at-risk youth girls who think about having a baby or to those who do have kids. I want to share my experience about not only the battles I had to go through as a young teen mom but also the risks that come with having a baby at such a young age. My condition has a lot to do with issues that arise due to teenage pregnancies.  I would like to share my story to the world and put a voice on this gender-specific condition. How many women have this and keep silent because of how much stigma is placed on such an unnatural condition? Most importantly, I want to inform teen mothers that just because they had a baby, life isn’t over, in fact it has just began. I am raising my child and attending a University in California. I have dreams and goals that I am pursuing. I want to share my experience and advise young mothers that they can, too, follow their dreams.

 

UPDATE:

01/26/14

It has been 1 year and 8 months since my third and final surgery.

I am so very proud to say that I have been fistula free since then. I have had NO SYMPTOMS OF A FISTULA!!

I am amazed at how much my life has changed since meeting my hero (Dr. Margolis).
I was given my life back and it was all due to my persistence and tenacity. I am so thankful.

169 thoughts on “I have been living with a recto-vaginal fistula for the past 7-years

  1. Wow sarah! All I have to say is your such a strong woman to have to go through all this and your a wonderful mom that is doing everything to make yours and julians life better by going to school! I’m sure your an inspiration to a lot of woman, and thank you for sharing your story! I will be keeping up with your posts!

    1. Thank you Sara for giving me hope. I have been living with a rectovaginal fistula my life has been hell and there has not been any Dr. That would help me I live in las vegas nv. And Drs. Are horrible I have been wanting to die as I’m not able to have any Dr. To want to help me as a result of my condition I get o lot of urine infections and the Drs. Here just have been giving me antibiotics that don’t work anymore for taking them for so many years so I continue with itching and burning I can’t handle it anymore.
      but thanks to you I have hope and I’ll try to contact the Dr that help you. Thank you

  2. I had the gracilis repair done in November 2012. I am currently awaiting the reversal/take down of my colostomy. My biggest fear is that the repair was not successful. I am 7 weeks out from my reversal and I can’t make myself happy about it because of the fear.

    1. Hi Nikki,

      How are you feeling? Where do you live and where did you have this surgery done? I wonder how important it was for you to get the gracilis flap and colostomy?? Are you on the Facebook group “Living with Obstetric Fistula”? It is a great group of women who are going through the same you and I are going through. I def recommend you get in touch with the group. Talk to you soon, xoxox

      1. I live in Eastern North Carolina and I had the surgery in Greenville, NC. I will check out the Facebook group. I have an appt at the end of this month and I’m going to voice all of my concerns to my doctors. Thanks 🙂

      2. My GYN had tried to close it but failed. Then I went to the Colorectal Surgeon and he wanted to try a plug but my insurance wouldn’t cover it so we did a traditional flap repair. That surgery also failed and the left the gracilis repair.

      3. Hey, so I was trying to find that facebook group “Living with Obstetric Fistula” and it isn’t showing up. 😦 can you help me? I developed a RVF in December of 2014. I have been trying to find support and information and I can’t find anything!

        Thank you.

        P.s. Your story was inspiring. Thank you for sharing it.

      4. Hi Sarah your story was so reliving to read thankyou so much for sharing!
        Unfortunately I am in Australia so wouldn’t be able to see same surgeon wish I could though but thanks again for sharing would love to chat more private 😊

  3. Hi Sarah,

    I feel like I am in your boat right now. I have a rectovaginal fistula and had 2 advancement flap surgeries by a colorectal surgeon here in NJ. My story is alittle different though, I had my daughter in August 2010 and she was a big baby (9lbs even) my obgyn scheduled me for induction a few days after my 40 week check up because they thought she was going to be over 10lbs, so induction failed after 2 hours of pushing her head would not come down so off to the OR I went, where they had to bring in a special doctor to push up through my vagina my daughters head because she was stuck in my pelvis. So, now in November 2011 I had pain in my perianal region and didn’t know what was going on, I waited a few days and it only got worse, ended up being a perianal abscess, which turned into a perianal fistula which my doctor believes was caused by ‘trauma to the area’ from when I was in labor with my daughter, that a ‘weakness’ must of be created and I must of been constipated and it created a abscess. I had seton placement January 2012 and wound up getting pregnant again February 2012 so now I have the seton in my entire pregnancy. October 2012 I had my son via c-section and everything was fine. Now January 2013 has come and i had the advancement flap surgery to fix that fistula. One week later, I sneezed and felt something come out of my vagina not knowing what it was until I went into the bathroom, then I started noticing gas coming from my vagina and after I would go #2 the feces comes out of my vagina. I’m completely devestated at this point and tell my colorectal surgeon, she goes and looks and says the hole is so ‘pin point small’ that she can barely see it, now this doesnt make sense to me after seeing the amount of feces coming from my vagina but I listened to her.. She placed a seton in my now NEW rectovaginal fistula, which she believe was caused by an infection from loose stools from the previous surgery. So May 2013, I’m excited i’m going to have surgery and finally be fixed and go to the bathroom and pass gas from the correct hole, well 5 days after the 2nd advancement flap surgery I felt like i had to pass gas and when it came out of the wrong hole, again, I was devestated. So now they both failed and my option is to have the temp colostomy. I am 28 years old with 2 young children and I really do NOT want to go this route. I found your story on the Doctors website and it gave me hope and now I am going to seek another opinion from a Pelvic Surgeon near here in NJ or NYC or even PA. I just want this nightmare to be over, I can’t believe you lived with it for 7 years, it is so upsetting every night going to sleep knowing I’m going to have to get up again the next day and deal with the annoyance of this rectovaginal fistula everyday. I wish I lived in CA because I would love to go to your surgeon to get fixed. How are you feeling, everything is ok since the procedure?

      1. I’m actually having surgery on Monday transvaginally with a pelvic floor surgeon, fingers crossed this is it.. What a nightmare it’s been!!

  4. Hi, Sarah.. I came upon your blog entry in my search for info because of my personal experience. In 2006, I had a very terrible experience that has caused me to have a rectovaginal fistula. It began as an undiagnosed abscess that found it’s way out of my body the only way it could, and I have since discovered in the years following that the treatment and follow-up was not enough to prevent further issues – which are the same as your symptoms but maybe not quite as extreme. I am now pregnant with my first baby and have been advised to delivery via C-section because the risks of making the fistula worse outweigh the risks of a C-section. (Because of the care I received when first acquiring this condition, I have since changed my health coverage and health system. My new doctors have been very helpful sending me to specialists and such to be sure I have all of the information I need to feel like I’m making an educated decision.) My colorectal surgeon has advised having all the kids I want to have and then getting the repair procedure after since pregnancy will change my body anyways. So, here I am. Pregnant with a little girl due October 12, 2013!
    Thankfully, I have been able to be honest with my husband since even before he was my husband. He has been very supportive and matter-of-fact about the condition. He’s also a physical therapist, so he has a professional curiosity about all things medical. He sees things scientifically when I often take the emotional route to processing my thoughts.
    Finding this blog of yours has suddenly given me an ally in a very personal struggle. Your story is heart-breaking… and I sympathize if you have feelings of being dismissed by the medical field for something that is so very important (not to put words in your mouth, though). I admire your tenacity and appreciate your honesty on the matter. And I am so happy for you finding the path to the quality help you have finally been getting.
    Thank you for your bravery and honesty. Cheers…

    1. Hi Natalie,

      I am sorry to hear about your fistula. Congratulations on your pregnancy. Will this be your first baby? That is great that you have a husband who is caring and understanding. I am so happy you came across my blog. I would like to recommend you to a facebook group (if you have one yourself). The group is called “living with a obstetric fistula”. It is a group of over 100 women all over the world who have this condition. You will have to request to become friends. I will let them know that you may be requesting. It is a place where you can relate, ask, answer to, and just know that you are not alone. Where are you from?? Talk to you soon.

      1. Hi iris, it’s been over 3 months now (sorry for the late response, I just saw this today) and I am fine! Knock on wood, I’m still paranoid to go to the bathroom everyday but everything is coming out the correct areas! My surgeons name was Dr. Thad Denehy, he is in West Orange, NJ… I’m so greatful to have found a great surgeon to actually fix me, I was paranoid I was ruined for life for awhile. How are you feeling?

      2. I’m glad you are doing great! I’m 8 months post op and everything is holding up. I’m still suffering from overgranulation tho so it hurts at times and bleeds.

      3. Kim & Iris,
        How are you both now? Any sign of Fistulas? I have a fistula for over two years due to a 4th degree tear. I just had a transitional flap surgery 6 days ago and it seems to have failed (gas and feces coming out though vagina again) I’m now thinking of now going to a urogynecologist. I live in NYC do you both still recommend those doctors?

      4. I have been fistula free since October 2013, I thank god everyday I found the doctors I did… I highly recommend them, dr. Denehy is in Livingston NJ which isn’t far from NYC, maybe 30 mins

    2. Hi Natalie! I had been suffering with a perianal fistula for the last 5 years and got a fistulectomy done two months back.The wound has completely healed however recently I have noticed that I pass gas through my vagina and last week I felt a little bit of liquid stool like discharge leak out of my vagina. Though I had the leakage only once I feel it could be a recto vaginal fistula. I was hoping to plan for a baby post the successful fistulectomy but with this new issue I am wondering if i need to rethink my decision or I can go ahead and plan a baby. Please let me know if you had any issues conceiving a baby or having a physical relation while you were suffering from a rectovaginal fistula. Your response means a lot. Thanks D

    3. Hi Natalie, I had a fistulectomy for my perianal fistula 2 months back and the wound has completely healed; however a week back I realised has passing through my vagina and I also felt a liquid stool like discharge (only once) it did not have any foul smell. I was planning to try for a baby once the fistulectomy would be successful but with the new issue I am wondering if I need to rethink my decision. Could you please help me understand if there are any problems to try for a baby in case a person is suffering from a recto vaginal fistula? Also can there be any problem in physical intimacy?

      1. Hi there,

        This is Sarah, the blogger. There is no issue with having a child while suffering with a fistula. I would recommend refraining from any type of fistula repair until you are done having children. This is because you do not want to have a repaired fistula and possibly risk re-opening due to pregnancy.

  5. Hi Sarah, I was wondering how you are doing now? I have just been diagnosed with an RVF and have also been recommended to have advancement flap, which I refuse to do. I was wondering how long you were off of work to recover? I am looking into seeing if I am able to have same procedure that you have had with Dr. Margolis or colleague of his. I live in upstate New York. Any advice or comments would be helpful. Thanks!

    1. Hi. I am doing GREAT! I am so sorry to hear that, Maur. I was actually a full time student working on my 4 year degree. I had to take a few weeks off each time i had the surgery. Dr Margolis is wonderful!!!!!! Let me know what you decide to do!!!!! I will be around. I would love to be there to support you

      1. Maur, please look into Dr. Ascher-Walsh or Dr. Brodman in NYC. They are both experienced urogyn surgeons who repair this type of fistulas.

      2. Hi sarah…
        I may i ask what procedure did ur surgeon take..that made u out of that dark phase of life..i m going through the same…wondering if i can ever be intimate eith my husband…

      3. Hi Jinni,

        I had what Dr. M called a simple tranvsvaginal fistula repair. No special term that you can find in the medical journals. You will get your life back once you find the right Dr. to help you. Do you live in California????

        Talk with you soon,
        Sarah

      4. Hey Sarah.my name is Britaya its november 8 2015. I pray im not to late .i had my beautiful bby girl on sept 24th 2015. She was only 6ibs 5 ounces 19inches.i weighed 150ibs. Im 21. She split me to the 4th degree(pass my anus) . i delivered her at northside in atl ga. After being repaired it was ok. Until two weeks into my recovery. A Hemrroid came out , OMG! Very painful feeling i had NEVER knew was even possible. I was out of my epifoam.this was medicine that soothe the area down below. (It cost $100) so i couldnt afford it . anyway i called my docter.they said its NOTHINGthey can do about this hemrroid that had been out for hours.i was crying and couldnt get comfortable. So i heard you can push them back up.i was just afraid.i end up pushing it with much force to get it over with , oh how i made a Huge mistake:'( i heard sumthing pop and felt warm liquid run down my leg.i scream because of the pain. My mom rushed in my room. The warm feeling was my blood.the pop noise was my stitches and i had Done major damage to my anus and rectum! My rectum had split open , i had not split my rectum in labor. I made matters worse. My mom was so afraid and called my docter. They told me to come in right away. Due to the pain it took me four hours to get in the car and be omw to my docter.the car ride was horrible.every ditch or bump , i would hurt worse! Finally, i was on the table being looked at. My Dr eyes grew big, she said she saw my stitches blood and stool everywhere when i opened my legs. She thought i had sex .thats how bad the tear was.i explained to her wat happened.They couldnt do a surgery right away. Because of how knew the wound was. I end up having a panic attack right there because of the bad news.I couldnt get surgery to fix this until six to eight weeks. I went home with pain medicine and numbing creme. The meds i was on made me constipated. So passing a stool was difficult, painful as well as tramatizing. When i pass a stool they were the size of my fist and hard as a rock. I would be afraid to use the bathroom due to the hemrroids. I went threw a feeling of a knife coming out of my anus throughout the day and stool coming out uncontrollably, ON ITS OWN.i couldnt do none about it for two weeks.i called my docter crying saying i need the surgery now its no way i can go on this way. They told me the possibilities of thevsurgery so soon.which was the stitches could fall apart and open back up within two days because my tissue is so tender down there.i said i will take my chances, walk by faith and do the surgery. I was scheduled to go in 5am the next morning. I got there sleepy so they assumed i was meds already.i insited i was NOT, i had been up with my new born and its 5am. They put me to sleep i woke up after the thirty min procedure in exscrutiating pain. They didnt give me meds during it because they assumed i was on some already.smh.and kept saying “your pain is not that bad” i was furious !!! I was on so much meds i couldnt take care of my baby.:,( i felt less of a mom. But i had help and support from my grandma mother, my family and baby father . i thank God for them all. But three days later my stitch split i felt a burning sensation in between my vagina hole and anus. It was open ! So for weeks wen i would pass a stool it would come out of my anus and from the hole in between the vagina and anus due to the broken stitches. It was burning as i would use the bathroom. Worst feeling ever. I wanted to give up but my child needs me. Over time it healed. No not 100% . The pain was barable for the time being, i would use the rest room and clean my wound listening to gospel music because it would calm my anxiety .if i didnt listen to it i would cry loud & breath hard and make matters worse. I thought things were getting better . until i woke up and felt very moist down below. I went to the rest room and found liquid stool all over my pad. I thought not again, i wiped to find the stool flowing from my vagina hole! WHAT THE F !!!!!! I start having a panic attack . my mom brought my meds for it. And helped me breath. I called my dr. They said come in asap. But i had no ride because in the midst of this my aunt passed away .so that specific day my family was busy to and fro the funeral home making arrangements. I got seen three days later.the dr told me it was a chance this could happen. I kept asking myself why hadnt they told me. Any way my doc told me i cant get a surgery to fix my recto vaginal fistula until twelve weeks from my 2nd surgery. Thats a long time. I had stopped passing stool from my vagina after several weeks. I was happy. But then Yesterday i was on the toilet i heard a pop .when i wiped it was blood coming from my anus . later on i was at the family pajama party when i had gas it came out my vagina and it smelled HORRIBLE like before i went to the bathrm and of course stool was coming from my vaGINA! Ugh i was ready to leave . but they never judge, and i had a winderful night. Still feel disgusting . i am only 4weeks into my 12Weeks to get my surgery. I have to get some yellow tissue debribed off my wounds down there.due to an infection that formed, in january, heal six weeks and then get the surgery to fix the fistula and my anus and stitches. I wish i could fast foward time. Any advice?

    2. Hi, Maur. I just happened upon Sarah’s blog today. I am currently scheduled to have the other surgery option Sarah was given before finding Dr. Margolis, and am not looking forward to it for all the same reasons. I also live in Upstate NY (really CNY), and was wondering if you were able to find someone locally to perform the procedure Sarah had done. My insurance will only cover surgeries locally.

    1. Hi Kathern,

      His name is Dr. Michael Margolis FACS, FACOG (Urogynocology). He is based out of Burlingame and Los Gatos, California’s Bay Area near San Francisco. Tel: 650-375-1644 and 408-370-9098. Visit his website at bapelvicsurgery.com.

      Hope you can see him! He is amazing!

      All the best,
      Sarah

  6. Hi I am so glad I came across your blog!
    I have had a baby boy 3 weeks ago 7lb 14oz and he was delivered by forceps I got 4th degree tear that they tried to repair but has now turned into fistula (1 inch I heard them say!) They said they will fit a stoma bag in after 4 weeks, to give time for mu uterus to shrink back down, then do reconstructive surgery after 3 months healing time. I did not realise how rare this condition was! I haven’t asked if my surgeon has done this operation before but he seemed confident however after reading about so many failed attempts in other peoples stories I would really like to be seen by someone with experience.
    I live in the UK or I would try contacting your surgeon. We do have a tv show called embarrassing bodies were they help people find surgeons do you think it worth me contacting them?

    1. Hi Caroline,

      I am happy you found my blog. I’m sorry that this happend to you. Like I did, I strongly recommend you get a second opinion and reach out to any resources that you know are available like that embarrassing bodies. I know it is hard to be open about your condition but it is more important that you are fixed the right way. Depending on your personal condition and prior conditions, I feel that stomas are just to invasive for this type of medical issue. Please get second and even third opinions. Remember, it is your body and you want the best care with the best results. Good luck to you! Please keep me posted. Also, get a hold of the Facebook group that I listed on my blog. A few women on their are from the UK and can possibly help you! The group is called living with a rectovaginal fistula. You have to be able to receive messages from non-friends to get accepted into the group.

    2. I’m not sure why I just came across this but I had my daughter at 23 and suffered a 4th degree and my only ended up with a fistula but it was determined my sphincter tore.
      It took me 3 surgeries. Dr. Richter at The Kirkland clinic at UAB finally helped me. Her background is similiae to your Dr. She is also my hero! She is a urogynocologist and these dr can often times perform this procedure as well as colorectal.

  7. Hi Everyone,

    Firstly I would like to thank Sarah for sharing her story and creating this blog for everyone who is going through all this frustrating condition. All you people are so brave to share ur experiences. I, myself know and understand how difficult it is to live with this.
    So my introduction, I am a female 31 yr old. After my first delivery which was in ROYAL OLDHAM HOSP in UK I had a 3rd Degree Tear. My baby was 6.10 pound nearly 7 pound but doc said for me it was big. Since that day I had problems with my back passage then fissures, then bartholin gland infection. In short, in 2012, I was finally diagnosed with rectovaginal fistula. And yes none of GPs, nurses, Consultants and surgeons were ready to say that I have rectovaginal fistula until a private hospital doctor requested for my MRI scan. Every person who examined me was not keen on listening to wat im trying to say. Their only reply was ” This can’t happen , very unlikely, shouldn’t happen.”
    So now I had 3 failed attempts by three different gynaecologist, colorectal surgeons. Now im under a different colorectal sugeon in Wythenshawe hosp in Manchester. He has placed a seton in fistula and will see me in 2 months time to remove seton and do further sugery.
    Im still v hopeless. All docs hv passed me here and there like rolling ball. But I cant do any thing as I dont hv any options.
    If any one of u in UK had sucessfull story and surgeon. Please tell me and every one pray for me.

  8. Hi sarah, I seem to have the same problem (vaginal fistula). It makes me feel uncomfortable when in public. I do not know where to start. I’m ashamed of this situation but am seeking help.
    I am in South Africa and do not know if there are that kind of doctors here.

  9. Hi Sarah,

    I actually posted a comment a while ago, but somehow it got lost…

    I was crying the first time I read your blog.

    I am 29 and have had a recto-vaginal fistula for about 5 years now.

    Mine was more like a freak accident (but this is not something I would like to discuss so openly on your blog). Anyway, I was dating this real, for lack of better word deuche of a guy and he did not stand by me at all. I was in a new town when I learned there was something wrong with me and had to book myself in for an operation. I had to go to the state hospital and underwent the operation by myself. I will never forget they gave me a ( I think it is called an enema)the night before the operation, which is so ridiculous, cause I had NO control over my bowel movements! I remember running to the toilet the night before ( I had to sleep over in the hospital) with poop running down my leg with the nurses standing laughing at me. It was so horrible. Also, because it was a state hospital I had about 6 doctors to be standing in my room at any given time and had to re-explain every time how I got my fistula. It was the worst time of my life.

    After the operation I was discharged with no medication, I was just told to rest. I was extremely constipated after the operation (I don’t know why they didn’t advise me to drink some laxatives) as I couldn’t apply any pressure to the wound. I remember the exact day that I knew my fistula went open again. I was struggling to pass a stool and remember it started bleeding again.

    When I went back to the hospital the doctor informed me of what I already knew, the operation failed… I didn’t have the courage to tell my boyfriend of the time. As it was, he didn’t want to touch me because of my condition, and I didn’t want to ruin our relationship even further (please don’t worry, we are no longer together)!!!

    The doctor wanted to do a “stoma” to which I refused. I was so young and couldn’t walk around with a “poop bag” attached to my stomach!!!

    So, I lied to my boyfriend and started living off loperamide. Every now and again my stomach is still runny, but I quickly fix that with loperamide. Obviously I have no control over passing gas, and pray every day that no one hears me farting in front of them!

    I am now engaged to an amazing man and he knows about my problem and supports me so much.

    I do want to fix it, but I definitely do not want a “stoma”. Also, I don’t have medical aid, and in our country it is impossible to get a booking for an operation before having to go to all the doctors etc. I don’t think I want to go through all of that again. Also, I would have to take off from work.

    I cry about this so often, and sometimes believe I am being punished for all the bad things I have done in my life.

    I cannot eat anything “whole-wheat” or chilli’s or anything that could upset my stomach.

    It is really not living…

    My plan is to wait until I get pregnant and maybe they can give me the operation when I give birth?

    I am actually just glad to know I am not the only one with this problem…

    Kind Regards,
    L

  10. Hi Sarah,

    Finding your blog has been so reassuring that hope is out there.
    I had surgery last week, I am post op day 9. I too went to a Urogyn doctor.
    I have recently been concerned about possible failure in repair and I am hoping you are able to shed some light on this from your past experiences. In the past few days I feel as though I have small ‘bubbles’ coming from my vagina. I am unable to say that it is for sure coming from the repaired fistula, as it is not obvious ‘gas’ like I would feel before surgery. No stool at this time. Sometimes I think it is merely ‘air’. I guess my question for you is did you know for certain when your first two surgeries failed, was it obvious?
    I know right now I am ultra-paranoid and that this may just be trapped air between my labia.
    Any advice is helpful.

    1. Hi heather I had my fistula repair surgery …I’m 3 weeks post op.while pee when I apart my leg I feel small bubbles but I think it’s trapped air between my labia.
      So I just want to know how r you now?was your surgery sucessful?

  11. Hi Sarah, my name is veronica I had my first baby march 21st, he was a big baby 9lbs 8oz and I am a petite girl 5 feet tall and before I had my baby I was 115 lbs . And well what was the happiest experience any women could go through soon turned into a nightmare right after I notice what looked and smelled like feces… But I never knew that could be possible I asked and they would tell me that it was part of everything that was left from the pregnancy but in my heart I knew it wasn’t that.. Well I don’t want to make this long but I self diagnosed my self after reading on the internet that’s how I found out about RVF… Since then my life has been a living hell I’ve been depressed, sad I felt I had no hope the doctors could find the fistula I thought I was going crazy until thank God they found it I was super happy I was going to get fix I was going to have my life back.. Well I had my first surgery but 5 days after I saw the symptom again I felt awful I was devestated!!! I then prayed I prayed like I had never prayed and asked God to guide me and put the right people doctor that could help me then I started reading again and he answered fast because I came across your blog as before all the stories that I would come across were horror stories never one giving hope.. But there it was yours then I knew that there is hope for me and for that Thank you and God bless you… Now I’m on the search for a great doctor that is going to give me my life back!!! I was wondering if you know how I can find a great doctor in the Los Angeles area? I wish I could have your do my surgery but he is far from LA this has brought so much pain I can’t even enjoy my baby I’m trying to live normal but it’s hard when you feel gas coming and you have to run away from people because it might smell!!! I just want my life back!! I really hope I can meet you some day and thank you personally for bringing awarness to this matter and for bringing hope when I thought there wasn’t. I also one day would want to be that person that brings hope to someone going through this. Again thanks Sarah for sharing your story:)

  12. Hi Sarah,

    Your blog was very moving, I have had so many similar experiences. I’d love to speak with you via email. Mine is attached. Hope to hear from you!

    Thanks

  13. Hi Sarah.
    I remember watching the episode of the Doctors that you were on. I was relieved that finally this issue was being discussed I am so glad that you were able to have your problem resolved. I can’t understand how in the 21st century in the United States we have to go through so much before we can get it resolved. Here is my story:
    I have been suffering from the passing of gas and fecal matter through my vagina since the birth of my son in 1995. He was 8lbs.14oz. and 21 1/1inches. I pushed for hours until the Dr. used vacuum suction to help get him out. I did tear and should have had a c-section.
    It took years to find a doctor to diagnose the reason why I was experiencing this. In 2012, I found a doctor who corrected my episiotomy and a rectocele. While performing the surgery a small hole in my rectum was found. The doctor performed a trans-vaginal repair. Post-op the doctor stated that this is why fecal matter and gas was passing through my vagina. I was relieved and thought my ordeal had finally been resolved. After having my first bowel movement after surgery, the symptoms resumed. I was devastated. I reported by condition to the doctor. I was referred to a colorectal surgeon. Initially, he could not locate the rectal vaginal fistula. An exploratory procedure was performed, it was identified and a Seton was placed. As my symptoms persisted, I continued working with doctors in both the uro-gynecology and colorectal departments. An additional fistula was identified and marked with a thread. In 2013 I underwent a joint procedure by both doctors. A trans-vaginal repair and the LIFT procedure. Again days after surgery I was passing gas and fecal matter through the vagina. My medical team could not explain how this occurred. 6 weeks post-op I developed an abscess accompanied by a fever and overall discomfort in the lower entrance to my vagina. The abscess drained on its own however, fecal matter was also coming out. My colorectal doctor placed another Seton to continue draining it. The persistence of my symptoms puzzled my medical team. I was told my case would be presented at the monthly pelvic floor conference. Unfortunately, 10 months went by and this never happened. Since 2012 I have had 3 surgeries and 2 Setons. As my frustration level peaked I sought a 2nd opinion from a colorectal surgeon recommended by a friend. This surgeon assured me that he has resolved many rectal vaginal fistulas and he could correct mine as well. I underwent endorectal flap surgery on October 30, 2014. The day after surgery I was passing gas through my vagina. 2 days later fecal matter started passing through. (I was on a clear liquid diet for 3 days and then a low residue diet.) I had a bowel movement 6 days after surgery. The amount of fecal matter passing through my vagina was all day long and at quantities never experienced before. At my one week follow-up the surgeon indicated that the repair did not take and that it fell apart. He indicated that I needed to complete the recovery process and then see where we go from there.

    I feel helpless and do not know where to turn to next. After my divorce in 2012, my ex-husband shared that he saw fecal matter on a condom after being intimate with me and was repulsed and turned off by it. I am 44years old. I cannot imagine a lifetime of fecal matter passing through my vagina. I have been fortunate enough to meet an amazing man who is extremely patient and understanding, but that doesn’t take away from how our physical relationship is impacted by this.

    I am now seeking the opinion of a Gynecologic Oncologist who specializes in pelvic floor reconstruction, but I see conflicting things online regarding having a doctor other than a colorectal surgeon make the repair. I am confused an do not know what direction to go in. Any advice is greatly appreciated.

    1. Janie, my doctor was a gynocologic obstetrian that fixed my RVF… Im glad I went with him being now i am fixed for a year and 3 months… (Knock on wood)… Good luck!!

  14. Hi Sarah
    I had a hysterectomy 7 years ago few weeks after surgery I was passing gas through my vagina with severe itching
    Vaginal discomfort it felt like stabbing pains that would come and go and recurring urine infections I went to see a different Dr. And he send me to have a test with an enema but they could not find any fistula so he just gave me hormone creams and antibiotics as he said I had a vaginal infection and a urine infection after taking antibiotics I felt better but I continue passing gas and few weeks later my urine infections came back and the itching and vagina burning this has been on going thing
    for 7 years not having my issue resolve I would seek the help of different Doctors but they all have just give me antibiotics and hormone creams but my symptoms persist and my UTIS continue I have taken so many antibiotics that almost all of them don’t work on me any more because that’s all the doctors do for me. I just went to another Dr. And she told me that I might have a fistula but it might be too small and because
    I’m not passing gas it would be hard to find
    and she said the she would give me a hormone ring. To see if that would help
    But there is nothing else that she could do for me. So desperate I have been searching on line about my condition
    And saw your blog and I admired you for sharing what you have gone through I made an app with Dr. Margolis for january I’m flying from nevada to sanfrancisco. It won’t be easy as I’m also a single mother and financially it’s very hard, my life has been a living hell
    and I don’t know if I will ever be able to
    have sex again. Prior of seen your blog
    I have been very deppessed wanting to die but I have to be well for my son.
    I thank you for giving me hope
    I will let you know how my visit with Dr. Margolis go.

  15. Also once the surgery is done is the reoccurrence rate 5% or is that just failure of the surgery. Now that you are I’m guessing two years fistula free does the dr think you are free from worrying now

  16. While reading this I could only ask myself one single question: who would live 7(!) years with a RVF in a western country without seeking medical attention?! Sorry, but I seriously don’t this.

    1. I know this reply is a bit late but never the less I need to comment. 10 years ago I had a repair that failed. I went through severe disappointment and had to wait a year to have the surgery again in order to allow my tissue to regrow & heal. I had a small child and by the time the year came around I was scared to go through with it, not wanting the heartbreak again. On March 21, 2016 I had the surgery once again. My daughter is 12 now. It has been 6 & 1/2 weeks since my surgery and everything was healing fine.Until yesterday, The Dr. Examined me and I think popped a stitch open. Now I have stool passing through all over again. THIS is agonizing! Going through the same disappointment all over again! I can say with out a doubt the pre surgery, the enema, the actual stress of surgery, the hospital stay, the 6 weeks of being on eggshells and trying everything in your power to not ruin it and then being so close and having it ruined and the heartbreak, I WILL NEVER have this done to me again. I don’t think my heart could take it. So that’s who would live 7 + years with that a a western civilization.

  17. Hi. Thank you for sharing your story. I believe I may be going through something similar. Just recently I had diarrhea and noticed when I was on toilet that it was leaking a bit out of my Vagina. I got so scared and started calling Dr.s , when I look back now I think this may have started two years ago. Sometimes when I would pee I would notice discharge but I have had a full hysterectomy so no discharge should be coming out. It went away until recently. My anxiety is at an all time high. It is nice to know it’s not just me. I did contact the Dr. You went to and made an appt.

  18. Thank you so much for your inspirational story. I am currently going to have the EUA to try and locate my RVF as so far i have had the symptoms for almost 2 years but no one can find it. I spent a year being told it was all in my head by my OBGYN until I was finally sent to a colorectal surgeon. I hope I can finally get some answers. 🙂

  19. Sarah,
    Hope you continue to do well. I started out with Dr. Michael Abel in San Francisco at the California Pacific Medical Center. Which is 2 hours south of us. I was referred to him to repair a reoccurring rectocele and rectal prolapse with success. Although, I developed an abcess which ended up causing a fistula which resulted in a temporary ileostomy. Since I have had three ileostomies, been on TPN 5 times,
    five Doctors there and 11 failed fistula repairs ranging from, the simple RVF procedure to plugs to flaps and glue not to mention the lovely procedure with the flap of muscle from my leg. I finally saw the head of the Colal Rectal Surgical department who tried a different approach. It was to buy time with bulking up my stools with a fiber allowing them to pass by the fistula and give it time to heal. It worked mostly. He found the fistula had reduced in size and felt it could be closed simply with an endoscopy procedure by another Doctor. The first of which I had a month ago then a few days later, nope. Another week later he tried the endoscopic procedure differently and now the results are worse than they’ve ever been. I have gone back to the Dr. Chiu that started me on the fiber and my original Dr. The two most acclaimed Doctors in the area.
    The plan is that they will get together to insert a piece of biomesh between the wall. They believe my tissue down there is to weak to hold stiches clips etc. This is to reinforce the tissue while the fistula heals on its on.
    It is coming up soon, all I can do is pray. If it fails, at least I have your Doctor in the same general area to contact. Thank so much.
    Greta

  20. Hi sarah,
    Its been 2 and half months since i had my surgery. And still feacal matter and pus discharge comes out of my vagina and anus both. I am unmarried and would get married soon. I am very scared if it will ever cure or not
    What is the expected time for the wound to heal after a surgery?

  21. It is so great to know I’m not the only one who has ever went through this. I’m on my 2nd surgery to fix it and, fingers crossed, its been 4 weeks post op and so far so good. Unfortunately, I did go with the ileostomy bag. At 24, it definitely not ideal but it hopefully has worked in my favor. Although after this last repair, even though it’s still in tact, I ended up with an infection. After taking care of that, we still noticed some drainage and hoping it’s an abscess working it way out and not the tissue breaking down. I will go back in 6 weeks to get another check up, and if all is well, I can schedule a date for reversing this ileostomy. If all is not well, then I may be calling a Dr.Margolis!!!

      1. Hi! I got a fistulectomy done 2 months back for a perianal fistula and the wound has recovered now… however I have recently noticed that I pass gas through my vagina regularly, yesterday I wiped myself with a tissue and saw some yellowish discharge with no foul smell. Stool was soft yesterday. However today there was no discharge as such. Do you think it could be Rectovaginal Fistula?

  22. So pleased I just found this. I’ve just been diagnosed with a fistula 7 years after having my son. I’ve been telling the doctors this whole time about my symptoms and even told them I’m convinced I have a fistula! But every time they told me I’m immagining it. Thankfully one doctor has believed me after all this time x

      1. Hi Sarah I have been experiencing the same symptoms after I gave birth to my son 2 weeks ago, can you please give me some suggestions…

  23. Hello, thank you so much for posting This! I am currently living with this and I am not 100 percent sure my surgery has been successful! I am currently only 3 weeks post op on my first surgery. Where is this doctor that you speak of? Oh how I would love to be able to see him! This has been horrible trying to take care of 3 kids and live with this! 😦

    Do you have any information on the doctor that you saw and where he is located? I am loosing my mind day by day and this is so hard! I need to know there is hope!

  24. Hi Sarah
    Reading your story has shed some light on me. Can you please provide me your personal email. I just want to ask you questions about ur experiences. I have had my surgery last week.

  25. Hello Sarah, my name is Desiree and I have been dealing with this issue now for 8 years. it has affected every aspect of my life and many people have no idea what you are going through. I was so excited about your blog. We need to let everyone know they do not have to suffer on their own. As for me, I just had a advanced anal flap , this being surgery number 4 and am now still passing stool from the very back of my front area. I am so frustrated I want this to stop. I also wrote to the Dr’s show but they did not respond. I might try again to see if I can find a different doctor in the Florida area. My doctor has been nice but I need it fixed! I have not been able to work and function. If you know of any doctors here please let me know. I am a cancer survivor and I can tell you the pain I have endured with this has been greater, though I never want to hear cancer again. I have an amazing faith that God will help me through and I feel finding you is the first step.

    Please advise.
    Boynton beach, Florida

    1. Hi Desiree, Its great you went to see both Dr Margolis and Dr Ascher. I also notice from an earlier post that there is also a Dr Denehy in New Jersey – they all seem to have similar experience and carry out work in Africa. If you don’t mind me asking, how old are you? Did both Drs say they could help you? I live in the caribbean so it would be easier to see someone on the East Coast as I could fly direct to NY, however, I am willing to travel to Dr M to get fixed – I am 53 years old and been living with this for 5 years, firstly anal fistula (failed repair then a sucessful repair) and now a RVF (one recently failed surgery) – 20 years ago had a traumatic delivery with tears, episiotomy and forceps and Drs seem to think this is the underlying cause.

      Thanks

      1. I am 44 years old. They are both great options. Mine not 100% sure but they think it came from a traumatic hemorrhoidectomy ,fissure or undiagnosed inflammatory disease. Where in the Caribbean. My parents are from the Dominican Republic

      2. Live in the Cayman Islands. We have direct flights to/from Cayman to Florida, NY, Texas, Atlanta, Charlotte. It is horrible living with this – I am lucky my husband is so supportive and loving but I just want us to have our life back!!

      3. I am in prayer about it but am leaning me towards dr. Margolis. Feel the most peach when I think about the surgery I need to do.

      4. Hi ladies, I’m healing from surgery with Dr. Margolis and I was truly inspired by him and Sarah. Both are great people who want to help others. The hospital staff was supportive and caring as well. I’m in the healing phase I have two weeks and a half more weeks and I’m optimistic. Obviously I need some social and emotional coaching but physically I’m praying and believing to have a great recovery outcome! P.s.- stop in Napa Valley for the serene atmosphere prepping for surgery it’s a breathtakingly beautiful place!

      5. Hey Lauren what was your surgery? I am trying to work on June, like I stated before. Napa is my favorite place. Perfect place to heal!

      6. Lauren, that’s great news. Are you from California or did you travel? Have you had previous surgeries before?

      7. I’m on the East Coast so I flew across country because I did have an advancement flap from a colorectal who was nationally recognized and so I knew I had to seek another option and I found my answer when my husband googled The Doctors Show and found Sarah. I was skeptical and than last year during my third pregnancy I had an idea to see if there was a results show and once I knew Sarah was successful I knew I had to find Dr. Margolis! He’s a wonderful man/Doctor.

      8. He allowed me to do a phone consultation once he had all of my records. It’s an hour of his time. You can ask him anything and he’ll take as much time answering you. He made me feel comfortable and is a confident yet humble Doctor. He goes yearly to Africa to fix these kinds of issues and he has an understanding of how anxious we are. His staff was great with any questions I had before flying out. The Hospital staff was great. From all aspects it was a fulfilling experience. I had a panic attack in the hospital the night of recovery because I was so scared and in such pain plus my husband and kids stayed home while I went My parents came but didn’t stay at the hospital and I felt alone. The nurses and nurse assistants were so understanding and comforting.

      9. I’m sure there’s plenty of places to stay. I was nervous not knowing CA and my parents and I stayed at The Los Gatos Hotel and Spa. They wheel chaired me to and from the car to my room and I bought broth from a whole foods near by and the kitchen heated it and brought it up. The staff was sympathetic and also allowed early check in so I could start my prep It was not even ten minutes from the Los Gatos office and hospital. Burlingame for post op was about 45 minutes if I can recall

      10. Lauren, when did you have the surgery with Dr Margolis? How long are you staying on the West Coast?

      11. So I’m 4 weeks post surgery. I flew out on a Monday. Monday-Wednesday we saw some beautiful places in San Fran/Sausilito/Napa Valley. Thursday morning I met Dr. Margolis and he did the exam and I started my prep in the afternoon. Friday was surgery and I saw him in his office Monday and flew back Wednesday night. So I was out there for ten days and my local obgyn did my 3 week post op and still will do my 6 week post op in two and a half weeks 🙏🏼🌟

      1. Hi! It’s Lauren (it only allowed me to reply here). I’m 7 and a half weeks post op! I just got cleared last week to get back to ALL activities and my local Obgyn is very pleased and so am I with the healing process. Aside from naturally Being hypersensitive to “air” sensations I am back to feeling like my old self with being able to work and socialize without it overtaking my everyday life! I still feel like pinching myself because I didn’t think I’d be able to live fistula free! Dr. Margolis is my Godsend 😇

  26. Hello my name is Angela, I had my daughter April of 2015- I had a forth degree tear cuased from 1. the nurses pushing on my belly after an episiotomy was performed, 2. A long extended labor of pushing at 10 centimeters. As a result my daughter came out too quickly and I received a 4th degree tear . The doctors sewed the tear, sadly however the tear didn’t heal and I formed a retro vaginal fistula 3 days after coming home from the hospital. I’m in the process of talking to a lawyer to see what my options are for compensation of negligence and pain and suffering. May I ask if you did that as well? Did you try and seek any compensation?

    In addition I still have not had my repair done, I live in Southern California- I am looking for a doctor near me that can do the surgery. I find it difficult to find a doctor that has had a lot of experience one doctor told me she’s only performed 13 surgeries ever and said she only comes across two cases a year. I was not comfortable with her performing my surgery . Can you give me any suggestions of where to look or where he might start thank you so much!!!

  27. Hi Sarah,
    Not sure you are still on this. Thanks for sharing your journey. I am 54 years old and I am quite sure I have a fistula. I still haven’t had the CT scan to prove it. Mostly my drs act like it is not a serious issue. Around the time of menopause (maybe before) I had a huge increase in flatulence. Then it seemed to be coming out of my vagina as well. Now I know it is for sure. No other symptoms, but it is embarrassing enough as is! I have a small frame and had 3 large babies all vaginally. The first resulted in 4th degree lacerations. I am thinking there is a link there. Thanks for any input you might have.

  28. After living with my RVF for at least 5 years now, I am very relieved to have found your article. Unfortunately due to embarrassment, failed/uneducated OB appts, money issues, stubbornness not to do deep research… its taken me until I am 28 weeks pregnant to look into what I should do.
    My husband isnt even aware of it. Ive managed to keep it a secret for quite sometime and with much dedication to hygiene. Mine I know is a result of a severe barthalon cyst I had 8 years ago. The site took months to heal and it reappeared once. Not soon after the second flare and healing….the RVF appeared. I was devestated to find it, research it, and get help. Unfortunately the ob I went to at the time never heard of it and even tried to convince me I was confusing period blood with the stool. *sigh* of course after poking and proding he figured out I was in fact correct and suggested researching diseases. *sigh* anyhow…I tried to do something about it a year ago but even after my insurance, I was going to have to fork up 5k just to have the surgery in a hospital. *sigh*
    So anyway, here I am…starting this gut wrenching journey again…but this time Im in an even bigger oops as Im in another country, pregnant, with no money , or insurance and wanting an all natural at home birth.
    Thank you for sharing your story, links, and wisdom. I really hope I can figure this out. Ive been dealing with this secret for far too long and this fear of what’s going to happen when I give birth is getting greater by the day.

      1. Hi Sarah, yes kinda! I joined the facebook group after reading this blog. The group has helped me in ways to get help. Still have yet to see a doctor about it, and I am about 100% certain that when I show my OB the RVF in a week, he will want to schedule a c-section. Ive basically been thinking long and hard, and I’m afraid doing an unassisted natural homebirth is not the way to go due to this pesky rvf.

    1. I will find out when I see him next. I will have to point out the rvf to him. Im certain since mine is not fixed, he will want to do a c-section.

  29. I had surgery with Dr. M on March 16, 2016 I live Reno NV. Dr M did the repair in Pleasanton CA. I had one failed repair prior to that by a colorectal doctor in Nov 2015 then they wanted to to do an emergency olostomy because I hemorrhaged for weeks after the repair. The repair failed within the 1st 24 hours. My repair with Dr M has been successful! It will be 4 weeks on Wednesday. I’m so grateful to have found him thru this blog. I called his office 24 hours prior to my emergency surgery and was told me not to have the surgery and Dr M saw me 2 days later. I still cannot sit for extended periods of time without pain but I’m so grateful th surgery has been a success. I go for my post op on the 26th. How long did it take you to heal Sarah and be pain free?

  30. I had a low rectovaginal fistula flap repair on Feb. 24. I have been in constant pain ever since. I still have air and liquid passing through. I have swelling and pain in my vagina and pain in my rectum. My dr is stumped. He has put me on antibiotics 3 times thinking an infection is causing the pain and swelling. Nothing is working. I now feel that he has no idea what is causing my pain. He keeps saying he may need to put me under and do a scope, but never does. Instead he gives me another round of antibiotics. Anyone else have pain and swelling months after surgery? Is it time for a second opinion? Any advise would be helpful.

  31. Hi Sarah iam so happy that I found your blog
    I just had my baby a month ago .i ended with forcep delivery and 4th degree tear.after 5 days of my delivery I found out stool coming from front .i called my dr and she said it is rectovaginal fistula and she perform my surgery immediately.im now three weeks post op …I don’t have any symptom till now. In how many days fistula repair surgery likely to fail? I’m confident that my repair surgery has worked …My dr told me to be on low fibre diet for 6 weeks …how long you were on low fibre diet after surgery? Can we go for walk or do we need to bed rest for full 6 weeks?
    I had my pubic bone separated after delivery and I need to do physical therapy for that but iam afraid to do it now if my repair surgery will fail? How many days it will take to dissolve stitch after surgery ?what do you think do I need to rest or I can carry my physical therapy?

    1. Hi, I am sorry to hear your fistula failed. I noticed my fistula failed within 3-5 days. I did the fiber diet for about 3 weeks. I waited to do anything at all until after 5 weeks. I don’t know how long it takes for the stitches to dissolve. You won’t feel them. I would recommend you ask the doctor the last question. I am not a medical doctor so I don’t want to give you the wrong answer.

  32. Hi Sarah,

    I found your blog a few years ago after my third failed recto-vaginal fistula surgery. Our stories were almost identical and I was elated and excited to hear about Dr. Margolis. After a year of planning and getting funding together to do surgery with Dr. Margolis I went down and had surgery with him this March 2016. I am Canadian and drove all the way from British Columbia to San Francisco for this surgery with high hopes that it would be my last one after living with a fistula for over 10 years now. I had two very promising weeks of recovery. It was surreal to go to the bathroom and feel the normalcy of going without fistula symptoms. Shortly after two weeks I started to notice subtle fistula symptoms, I prayed that I was just imagining them… they progressively got worse. I have just been examined by my Dr. who has confirmed that there is a 1cm fistula. I am devastated. Symptoms are now worse then before surgery. I am writing this on this blog in hopes that maybe someone will have advice for me. I don’t know what to do at this point. I have no idea why my surgery failed. I can’t imagine living like this for the rest of my life, I am only 31… I have no money to go back to see Dr. Margolis. The thought that I might have to get a colostomy to fix this horrifies me to no end. Please, if anyone has any sage advice I would really appreciate it. I don’t know where to turn and I am trying to get some counselling to deal with this.

    1. Hello,

      I will be seeing Dr. margolis in July an dam terrified of a failed repair as well. Did you call his office or talk to him about this. Did he recommend a colostomy prior to your surgery? Oh no I am so sorry. I will pray that he is able to help you further.

      1. The illiosotomy is kicking my booty. Have lost 12 pounds. Have only started to be able to keep anything down. Not to sure why, doctor says it’s different for everyone. I got my fistula from trauma of a hemorrhoidectomy, which is really not cool. I have transperineal for 29th so have to regain my weight and strength somehow.

    2. Hi, I just wanted to let you know that I am fistula free for 10 months now. I was diagnosed with a rectovaginal fistula in 2014 when I delivered my daughter. My first surgery to correct it busted back open 2 weeks post-op. I then went and seen another, amazing, surgeon and ge suggested a temporary ileostomy bag. I know, everyone keeps saying that they would never. Well let me tell you 9 months with an ileostomy to ha e the rest of my life back was well worth it. Im only 25, I go to school full time and I done it!!! Some women who are lucky enough to have a small fistula may not need it but my fistula was big and the ileostomy allowed for the surgery to be successful and heal properly! I seen one girl who had this problem and she was in her 20’s as well and refused to get an ileostomy and said she would just live with the fistula forever before being embarrassed with a temporary ostomy. I just cant wrap my mind around that. O would rather live with something temporary to have something, to me the fistula was way more embarrassing, for the rest of my life. So dont let someones opinion alter yours. That temporary ostomy is what made me fixable! Best of luck to you, I know how horrible it is!

      1. Hi Amanda,

        I just read about your successful story with rectovaginal fistula repair and I am soooo happy for you.
        Let me tell you that I am going through this right now. I have had two failed surgeries: one in 2015 and another in 2016. I am living with this nightmare for a long time already and do not know what to do. I am so disappointed of all doctors I have met so far. Could you, please, advise in what part of the country your doctor is located that your final and successful surgery? Would appreciate much if you could share the name (also contacts, if available) of your doctor, so that I could get in touch with him/her and make an appointment for consultancy.
        Looking forward to hearing from you soon. Many thanks in advance!
        Naira

  33. Hi Desiree and Amanda,

    Amanda, thank you for shedding some light on a very scary topic – the dreaded colostomy. Although Dr. Margolis had told me I would not need one, I am unsure at this point whether I will need one for the next surgery. It is terrifying to think but like you, I would be willing to have that temporarily then to suffer with this fistula for the rest of my life. I am determined that I will have this repaired and I will stop at nothing to do that. Any woman suffering from this horrible condition must keep the hope alive and the determination to continue on. I have great respect for what Dr. Margolis does. I truly hope that he can still help me.

    1. That would be amazing if you end up not having an ostomy! My fistula was unfortunately too big and because of prior surgery to fix it (the more repairs, the less percentage of success because of the scar tissue etc), an ostomy was best for me. I have heard great things about him, so hopefully everything works out well for you! But know that while an ostomy was depressing for a short time, I wouldn’t have had it any other way because I am now fistula free. So if it ends up that being best, just embrace it and know the out come could be great!! Best of luck to you!!!!

  34. I will say it isn’t as scary as you think to have one, just keep positive. It isn’t forever! The initial placement of the ostomy was simple and not a very painful (your intestines have no nerve endings =no pain)! But on the contrary, the reversal was the worst for me! But knowing I was fistula free, I would have went through that pain over and over. So don’t be afraid if it comes down to having one, the horror stories you hear are people being dramatic!

    1. Thank you so much. I know it has been great to hear the truth from the fistula gals! Can I ask why the reversal was worse? Also did your eating change. Gain or lose weight. ..etc

      1. The reversal was worse because the time that you have the ostomy your colon isnt working so when you get it reversed you colon has to figure out what to do etc. My colon was in a “coma” so to speak for 6 days, which means I could pass gas or have a bowel movement because my colon wasn’t working and pushing anything down. So the air they pump you up with for the surgery (they do for all abdominal surgeries) was just setting there and there was so much pressure from it. Almost like having a baby again, that kind of pressure. They do give you great meds though to help with the pain and a pill to help wake those intestines up. Like I said it took until day 6 for mine to start working again and it was great lol to finally pass gas and stool from the right area! So it was again, worth it. The benefits out weighing the pain for sure. Other than that everything was good. Staying positive helped more than you know, everything is mindset!! So, with all the other surgeries, including the ostomy placement, you will stay in the hospital 2 or 3 days but the reversal is where I stayed a week. It isn’t to scare you of the pain, it wasn’t killer pain but it was worse than the others just because you have all that trapped air that won’t go any where and of course the abdominal pain from the surgery. But It was all manageable. I hope I have answered some questions or cleared some concerns you have had. You can adk anything you like and I will try and tell you about it. Because I had no one to give me information when I went through mine, because all the fistula ladies were too scared to get the ostomy.

      2. About gaining or losing weight, that all depends on you! There are people who live with one every day and are runners/fitness pros and you would never know they had one. And I guess if you let it take over your life and eat all the time and do nothing then of course you will gain weight. You just cant lift hevy things, that all.rrally after the 6 weeks postop recovery you can continue your every day life. I didnt gain or lose, I stayed the same, but I didnt exercise either cause I had a newborn and trying to figure everything out on top of that.

  35. Hi ladies, I have been inspired by Sarah’s blog to start my own (hope that’s ok that I leave a link on here Sarah so that others can access my wordpress). If you would like to read about my story please go there: mylifewithafistula.wordpress.com

  36. Your eating will change, not a lot of leafy foods vecause your body wont have time to break it down and will cause a blockage ( you will learn about all that). I eventually learned how to push a blockage out ( you will learn how to do that too)and so I still continued to eat my salads lol. There are times now that I kind of miss it, like on those long road trips when everyone has to stop after eating! Not me 🙂 you never feel the urge! Lol

    1. To funny. My goal is to stay positive knowing I will have overcome this stupid fistula. God family and friends all the way.😊 did you have a transperineal as well?

      1. That what I done as well, focus on God and family! No I didn’t have a transperineal. Did you obtain this fistula during childbirth?

  37. Hi Sarah,

    Thank you so much for this article. I’ve been dealing with this issue for 3 months now and have felt really alone during this time. It’s been so difficult. just wanted to thank you for your courage in sharing this info.

  38. My sister, Karen had rectal & vaginal fistula surgery on June 1, 2016 at East Jefferson General Hospital in Metarie, La She has been in & out of ICU. They are giving her Gattex injections for short bowel syndrome. I am at my wits end & don’t know what to do next. I feel like a he is fading away before my eyes & I fon’t know what to do. Can you help me please. I am thinking about taking her to Mayo clinic in Minnesoto.

  39. My sister Karen now has Mrsa, Staph and infection in my blood. Please help. She is giving up. With the ileostomy & urostomy bags & they say they at not reversible she has given up. Please help if you have any suggestions because I think she is beyond help f r om Dr. Margolis. Thank you Janet

    1. Hi Janet,

      I’m sorry to hear about your sister. I would def seek another doctor. That is absurd. I hope you find help. I am not familiar with the area so I can’t really help you find someone else. Dr Margolis is in California. Try a mayo clinic. I heard about them before. Not sure what they can do but it’s worth a try. Good luck. Please keep me posted.

    2. I would definitely find another place/2nd opinion! I had my recto vaginal vistula for over a year, I had an ileostomy for 11 months, 2 corrective sirgeries, and an ostomy reversal and never had any sort of infection. She should be on continuous antibiotics to prevent infections from taking place. Do a google search for your area and start calling specialist etc. I hope all ends well!!

  40. Thank you so much for the effort it took to put this website together. I read comments above that the surgeon described the procedure while patient was not yet awake. That is what happened to me. I got very little information from the doctor about what they did to me. All of a sudden I have this seton to deal with and not knowing what it was doing, how to care for it, etc. A few weeks later, another absess and an office procedure where the surgeon gave me local and cut a hole on the side of my vagina. I have a j-pouch so I know pain. This procedure was the most pain I have ever experienced. And for a week after I had no idea how to care for myself. Luckily, I have a supportive husband. Long story short, I have a followup appointment with that same doctor in a few weeks and have been thinking that it’s a mistake to go back there. That maybe I was on the wrong path.Thank you for shedding light on this. This is not necessarily a colorectal problem. After looking at Dr. Margolis’s website, I made an appointment with a Urogynecology doctor at a major hospital in Boston. Bless you for this. I’ve been very anxious and losing sleep. Hopefully he will be able to help.

  41. Hello Sarah, So glad you were finally fix. My story a little different. I had stage 2 rectum colon cancer . I Took Chemo pills every day for six weeks and radiation Monday through Friday for the same six weeks. HAD surgery and got a ileostomy bag.Then had Iv chemo for a month. After 4 months I had a reversal and about three months I was feeling really good . CANCER FREE!!!!!! Then went to my Son’s house feel hard on their sidewalk, broke my knee cap and that’s when I started leaking though my vagina…It’s been about one month, I see a doctor this Thursday 17 of November. .I started out not much, now there’s lot more….I am so worried. ..I just keep my hands in God’s hands…Maybe I’ll know more Thursday. …God Bless all of you sweet ladys!!

  42. I also diagnosed with Recto-Vaginal Fistual 20 days ago, after having my first child delivery. It was normal vaginal delivery but after few days I experienced gas and stool passing through my vagina. I reported immediately to my doctor shed said it is symptom of Fistula; she call me back after few days and diagnosed completely along with General Surgeon. They said I have Low Recto-vaginal Fistual size of 1.1cm; they said wait for 2-3 week we will see whether it going to reduce automatically or we need operation.

    Well, I am scared because I red several things online that refers high recurrence rate of Fistula surgery. I really do not know what should I do, you can understand my mental condition. Please guide me.

    1. Hi. I am so sorry this is happening to you. Are you in the area? I am not a medical doctor so I cannot give you that information. What I can tell you is that you should reach out to Dr. M if you feel comfortable and see what he says about it. How are you doing now?

      1. hi sarah my wife has recto vaginal fistula..can i ask if what is your diet or medication after your surgery?

    2. Hey rachana how r you? Did you underwent surgery or it’s still pending? I also had the same problem as yours now I’m fistula free so keep faith..Where do you live?

  43. she had surgery but after 3days when she poop post surgery poop yellowish dicharge like poop but no bd smell. is it normal that after surgery ther still poop and it will heal afterwards?

  44. Sarah, I can’t thank you enough for posting your story! I have an appointment in March with Dr. Margolis. I’m 56 and have had my rectal/vaginal fistula for 1 yr, do to ovarian cancer surgery & chemo. I had the exact same surgery you had on your 1st surgery. It was done this passed Aug (which failed), & now they are suggesting the next surgery to be done just like what was suggested to you. I also said that I have to think about this & I was not ready for another go around at this time. I’m doing well now, except for dealing with the fistula. I’m having a hard time controlling my diarrhea & I’m experiencing some bleeding from the fistula. Did you experience diarrhea & bleeding? I am SOOOOOO happy that you found Dr Margolis, and that you can now live a normal life. I wish you all the BEST!
    Cindy

  45. Thanks for taking the time to write about your long road to recovery. After reading about your experience I finally made an appointment with a gynecologist. I have yet to be diagnosed but I’m having the symptoms you had. Thank you for your straight forward and generous story. You’re my hero!

  46. hi, I am surprised with how many women are going through this same condition. at first I thought it was really rare. but now it doesnt seem this way. the most frustrating part is doctors not knowing how to help you and treating you like a social experiment. this is not my field. not my area… I was diagnosed with RVF recently. it has been very stressful process, very demotivating, and the worst part is not being able to find easy treatment. i was told that RVFs have a 20-40% chance of healing on their own. can anyone from this blog confirm this? if yes, recommend what you did in order to avoid surgery? thank you

  47. I am very sorry for what you pass through, but i thank God for you, now I am having these same problem 2yrs now ,it started after having laparatomy for the second time for correction of adhesion and removal of overian cyst.lam 39 yrs old, mother of one of 9yrs old, had him through CS , it was after the CS all the problem started, the more l seek for medical solution the more problem increases.please l don’t want to live with it anymore advise me on what to do

    1. Hi Jacinta,

      I am sorry to hear about this. How are things going now? I suggest that who ever you find you ask as many questions as you need to feel comfortable in going through another surgery. You need to feel confident in the doctor. Ask the doctor how much experience he or she has in fistula surgeries but most importantly how many of them have been successful versus failures.

      Sarah

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