My Obstetric Fistula (Part 1)

Hello there! Today is not your average birth story. It’s a story about a fistula that developed after my second vaginal birth.

I’m sharing my story today because this has been one of the loneliest, disheartening, disappointing and difficult roads I have ever walked. In looking for support, counseling, advice and wisdom I found there wasn’t much to find. Which made everything even more lonely. So in sharing my journey, I hope someone else can find what I wasn’t able to find in many hours of reading and searching the internet.

Disclaimer: There are some pictures of stool on peripads that may be disturbing to some people throughout this post. The pictures are here to provide education to those that haven’t seen or learned about fistulas in their practice.

Part 1: How I got an obstetric fistula

The birth of my second son was quick (read his birth story here…I like to think of this as part 2 of his birth story!). I went from 8-9cm in a standing tub to feeling the urge to push within minutes. By the time I was standing the baby’s head was crowning and a contraction later he was here! You can read about my birth story here, but the main points I want to readdress here are this: when my baby was crowning, my provider just stood silently in her gown and gloves at the bathroom door, then when my baby’s head crowned, I wasn’t sure if he was out and asked “Is the baby out?!” to anyone in the room – to which the nurse replied, “The head is out.” I could feel the provider pulling on the baby’s head but again, she didn’t say anything. I pushed again and the baby was delivered onto floor because the provider failed to catch the baby. Our babe was totally fine, but I share this part because I think the provider’s mortification for dropping a baby during birth was key to the next part of my story.

Once in the bed, the provider assessed my perineum and told me you have “a small second degree.” This was great news because I had a second degree with my first daughter and a smaller one meant a little less tearing through the perineal muscles. She gave me lidocaine for the repair and started sewing. Almost at the end of her repair, I felt a shooting pain into my back and my butt as she threw a stitch. I said out loud “Oh my gosh, I think you just sewed through my rectum.” At the time, it seemed dramatic – who says that other than a birthing provider? But that’s what my instinct was.

My provider at this point was still distraught that she had dropped a fellow provider’s baby during birth and she finished the repair. After the repair she performed a rectal exam not once, but twice. And although I made that comment during suturing and she did the exam, she didn’t say a single word to myself or my spouse about anything, and she left the room.

My instinct is that I had an unintentional stitch placed through the wall of the sphincter during my repair. It’s possible that I also had an extension of the tear through the sphincter because of the precipitous birth and because my rectovaginal septum (the wall of tissue between your vagina and rectum) is on the thinner side (only 6mm). But I think this is unlikely based on my experience as a midwife. Typically, a woman doesn’t have a vaginal laceration that is worse than a prior laceration unless the delivery was uncontrolled or a small newborn elbow was involved. I think it was most likely a perfect storm of circumstances and I won’t ever know the actual cause.

Part 2: How I figured out I had a fistula

Right after my son’s birth, I had a lot of what I thought was “queefing” with position changes. Mainly when I would go from sitting to standing, I would have air pass out the vagina and make a noise similar to farting or passing gas. My son was almost 9 pounds so I attributed this to poor pelvic floor tone. I didn’t think anything else of it. I asked for a pelvic floor therapy consult at my 8 week postpartum visit (a visit where the provider didn’t even do a heart/lung/thyroid/pelvic exam) and started pelvic floor therapy approximately 12 weeks postpartum. My pelvic floor therapist was amazing. She diagnosed me with a grade 2 cystocele (bladder prolapse) and I spent the next 4 months going to pelvic floor therapy. The goal to discharge from therapy was no queefing. And slowly, I was able to do Kegels to prevent any noise out of the vagina during movement. Although I still continued to have this same noise at home and noticed this mostly when standing up after playing with my kids on the floor. The idea of a fistula had never crossed my mind.

Fast forward to fall 2019, about 8-9 months after the birth of my son, I continued to have queefing with position changes but I also noticed a different yellow to brown discharge from my vagina that was different than my normal discharge. It took me a while to notice this because half of my underwear is black in color. On days I didn’t have black underwear, it was apparent something had changed. I was still exclusively breastfeeding my baby and hadn’t had my period return. I really didn’t think much of it other than something was a little different.

Fast forward to spring 2020, we became pregnant with baby #3! Shortly after becoming pregnant, the discharge started to have bread seeds in it. And I was positive these were coming from my vagina. We had changed breads at costco to a 9-grain bread and I was seeing all of the grains. At this point, I realized I had a fistula but I was in denial for another few months. I got to know my fistula a little more during this denial time. I was more in tune with what activities caused passing gas and when there would be stool in my vagina. In mid summer, around 20 weeks pregnant, I finally confided in a fellow OB/GYN that I worked with and declared “I think I have a rectovaginal fistula.” After hearing my story and showing her pictures on my phone, we both agreed that was the diagnosis. She hadn’t seen one before and we consulted a more seasoned OB/GYN on my team.

Seeds from our bread passing through the vagina

They weren’t able to visualize the fistula track while I was pregnant – the anatomy gets a little distorted from all the blood flow and pressure. They recommended I see a URO/GYN surgeon off base and placed the referral. I ended up delivering my son before seeing her but in hindsight, the referral would have been more of a consultation than anything else since operating during pregnancy was out of the question.

Part 3: My journey to find a surgeon…

About 8 weeks postpartum, I finally got in to see the URO/GYN. The office had rescheduled my appointment twice so I was eager to see her by the time the appointment day arrived. The URO/GYN was quickly able to assess the location of the fistula by a rectal exam. When she pushed upward from the rectal exam, the fistula discharged stool that she was able to see in the vagina. She recommended a referral to colorectal surgery because the fistula was actually anorectal instead of rectovaginal. All this means is that the opening on the rectal side is in the sphincter complex and not the rectum. The URO/GYN recommended a “dual surgery” between the two of them because I had a thinner rectovaginal septum than the average woman and she would be able to “build up” the tissue in the septum during the surgery. When I asked her if she had performed many rectovaginal repairs she replied “we don’t see many of these in Alaska, but I work with that area of tissue all the time.”

Alas, I was happy to have finally seen a surgeon – but I had my doubts about her plan of care. Why did my septum need to be rebuilt? I had had three babies vaginally. Putting more stitches into an already thin anatomical area seemed counterintuitive to long term healing with the least amount of scarring.

I had to wait another month to see the colorectal surgeon. And the wait was worth it. My experiences were night and day. First, the colorectal surgeon immediately dismissed the idea to “build up” that area of the body as it could cause more scarring and long term issues. He also didn’t see the need to have both specialities in the surgery. He said that his team of colorectal surgeons cares for fistulas “all the time.” Of anything, this was the most reassuring thing he offered. With a rectal exam, he was able to see the fistula’s location and with my history, didn’t recommend a dye test or manometry. The pictures on my phone were diagnostic of the fistula’s presence. The manometry wouldn’t change whether he did the surgery or not. He did recommend an ultrasound to assess the integrity of the muscles before the surgery. The ultrasound was scheduled the week before surgery but cancelled a few days prior because the ultrasound probe broke and the office didn’t know when one would be replaced. My surgeon agreed to still do the surgery. The main benefit of the ultrasound was that it offered baseline data for the integrity of the muscles.

I asked him so many questions. And he patiently answered all of them with expert knowledge. The big takeaway was this: the location of the fistula was a really difficult place to operate when compared to a rectovaginal fistula. There were a few options but he recommended starting out with the more conservative approaches so there would be options in the future. I appreciated this honesty. His biggest concern was easy to see: incontinence in a 34 year old woman can be a life long problem.

He reviewed a mucousal advancement flap, a biomedical plug (made by Cook), the LIFT procedure and a fistulotomy as surgical options. He spent 20 minutes drawing all of these options out on paper so I could understand the anatomy and the intervention with each procedure. As a visual learner, I greatly appreciated this. Something else that he was very realistic about is the success rate of the surgeries. Based on the surgeon’s expertise, the nature of the fistula, and the method chosen, the success rates vary greatly. Additionally, almost all of the evidence cites broad ranges of success (think 30 to 90%). A range that broad makes counseling really difficult.

At the end of the visit, I told him I had decided to have surgery via the combined method of the advanced mucosal flap and the plug, and he took me to the pre-op nurse to get scheduled.

Part 4: Why I decided to have surgery…

This has been the most difficult thing to write in hindsight (I’ve already had the surgery), but it’s helping me to remember why I chose to try and fix the fistula. There is a lot of joy in playing with your kids – on the floor, running outside, going to their karate classes. But when you are emitting uncontrollable gas noises during jumping jacks in karate class or walking up and down the stairs with laundry or sitting at the dinner table, it starts to take a toll on your mental health. Also, as any mother knows, whenever you have to poop, your little people immediately migrate from the far corners of the house to whatever toilet you may be using to watch you use the bathroom. Having to discreetly sweep poop out of your vagina with littles staring at you or running around is also tiresome – mentally and physically.

Ultimately, it’s a quality of life thing and I wanted to give myself the best shot at a little improvement after living with the fistula for two years.

I also really liked my colorectal surgeon. I didn’t know this at the time, but finding an experienced surgeon and one that you trust can be difficult. I also had an opportune window of time before we left Alaska to have surgery while still having daycare to help care for our three little babes through the 8 week recovery time. My work was able to give me 6 weeks of paid time off and my spouse was able to take 10 days off work. There wasn’t another window with so many structures of support anywhere on the horizon.

Part 5: Day of surgery

The day of surgery actually started the night before when I had dinner and then became NPO until my surgery was over the next morning. Two days prior I had a COVID test which was negative and I was all cleared for surgery. My surgery was scheduled at 1100 at a day surgery center. In total truth, I got up at 0500 to have a cup of black coffee. More than anything I did this because it’s my morning habit and ritual and this helped calm my nerves. And I also knew that liquids 6 hours from general anesthesia was safe.

The worst part of the day was after my coffee. My pre-op instructions were to administer two fleet enemas to myself two hours prior to surgery. This was exactly the terrible experience it sounds like. It’s fairly easy to give yourself an enema, but the pain that follows from the cramping of your intestine afterwards is intense. And after that bowel movement experience is over you get to do it one more time.

My kids all went to day care and the husband and I left in late morning to go to the surgery center. I checked in and gave my husband a kiss until later. He would have to wait in the waiting room until the surgery was done. I had two very nice nurses check me in and complete my pre-op IV and assessment. I had brought my breast pump and planned to about 10 minutes prior to the surgery. I has researched the ABM (Academy of Breastfeeding Medicine) Clinical Protocol #15: Analgesia and Anesthesia for the Breastfeeding Mother and wanted to have the boobs as empty as possible before going back to the operating room.

I saw the anesthesiologist and the surgeon next. The anesthesiologist completed the worst informed consent I have ever experienced in my life. I kid you not, he said “Do you have any questions?” and then gave me an electronic pad to sign my name. I didn’t even see or read a consent. My surgeon was much better. In the time since our initial appointment, which was about 2 weeks, I had read the clinical practice guidelines (The Treatment of Anal Fistula: Second ACPGBI Position Statement (2018) and the Clinical Practice Guideline for the Management of Anorectal Abscess, Fistula-in-Ano, and Rectovaginal Fistula (2016) for colorectal surgeons on fistula management. At this point, my surgeon knew I was a certified nurse-midwife and I was going to bring all the questions.

I was mainly concerned about recurrence and surgical options. He recommended again starting with the combination surgery as it was a more conservative approach with lower risk of incontinence. Ultimately, we wouldn’t know if the surgery worked until 6 weeks post-op or even longer.

With all my questions answered, the anesthesiologist returned and pushed 1mg of Versed in my IV. I quickly felt woozy and the last thing I remember was telling the operating room nurse that I have an obstetric fistula to which she replied “I didn’t even know that could happen.” I don’t remember anything else in the operating room other than waking up and trying to rub my eyes because they itched.

I was taken to the post-op suite and asked the nurse there for something to eat. As mama breastfeeding a newborn who hadn’t eaten in almost 24 hours, I was starving. My post-op nurse nicely reminded me everyone has to start with water and all they had were Saltines. I said thank you for the water and crackers while thinking: “Thank you ma’am, but clearly you’ve never breastfed another human and don’t understand the hunger I’m feeling.”

My husband came back to see me and the surgeon gave me a few bits of education: “Nothing in the vagina for 6 weeks and no sitz baths for 2 weeks.” I left post-op after about 1 hour and went back home with the husband. I was groggy and tried to rest in bed but went in and out of light sleep. It wasn’t until about 9pm at night that I finally fell into a deep sleep for a few hours before getting up to nurse the baby.

I hope you enjoyed the story – this was only the first half. The second half of the story was as much of a roller coaster as the first past – maybe more! If you learned something from my story, please share it with someone else – especially birth workers.

I’m happy to answer any questions about anything fistula related. Send me an email or a DM on the insta.

Interested in part 2? Check it out here.

Hugs,

Jamie

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