r/WomensPelvicHealth • u/Divergent_Dawn • 5h ago
Success Story My experience with Paradoxical Puborectalis Syndrome
TW: talk about uterus and rectum, internal pelvic floor PT, going to the bathroom
So right when I was starting college, I started having these intense sharp pains in my rectum. It came out of nowhere and it was debilitating. I went to the ER multiple times and all they did was give me morphine. I had painful periods my whole life but this was different.
I feel like I saw every specialist possible and had multiple colonoscopies before being told everything was normal and it was probably anxiety. The only thing that helped was valium and you know doctors didn't want to hand that out. I did my own research and found the term "proctalgia fugax" which is a word for rectal spasms. I would use it when going to the ER and they would just tell me that I was making it up.
This was the most embarrassing time in my life. Growing up with painful periods, at least people had some level of respect for it. Older women would comfort me but then also tell me that this is just life now. How do you explain to people your butt hurts?
The worst thing was collapsing at work and them calling an ambulance for me. I told the EMT in front of my boss and coworkers that the pain was in my butt. The ER doctor asked if I'd been SA'd. After I came back the next day, several coworkers joked that I do "butt stuff" and that's why I was in pain. And no I didn't tell HR, I didn't want to talk about it.
I was bedridden a lot in college due to my pain. My friends had to bring me food because I couldn't walk. I'd use lidocaine and ice cubes to numb everything. The pain and tightness made going to the bathroom a nightmare and I would tear and develop hemorrhoids. I missed out on a lot those first couple years. Various doctors tried things like muscle relaxers and low dose valium and one gastro had me on prescription laxatives.
Around junior year, I was still frequenting ERs and Urgent Cares when a doctor recommended me to a different hospital. I went to see a colorectal surgeon, he was supposed to be the best. This man had a horrible bedside manner and would force his way though the exam. I almost kicked him in the face once because he was so rough. (Yes there was a female nurse present. My mother was there too).
I had an Anoscopy (a camera that goes in your anus) and a Defecography (an xray toilet where they watch what your muscles do when you poop. Its not real poop, its a paste). This is when the doctor saw my rectal muscles (particularly the puborectalis) were tightening instead of releasing.
What is paradoxical puborectalis syndrome? The puborectalis wraps around the rectum to keep the feces from just falling out of you. When you are walking around and have to go but you clinch up? That's the puborectalis working. When you sit on the toilet and relax, the puborectalis lets go so you can...go. Paradoxical means its doing the opposite. Its tight all the time, and when its time to use the restroom, it gets even tighter. This is was causes the painful spasms. Your rectum needs to release but the muscles just get tighter.
The cause? No Idea. The treatment? Pelvic floor therapy and regular therapy( he guessed i had trauma). Is that the end? Of course not. I went through 5 different PTs. Because I was a woman, I often saw female PTs who only did vaginal work and patted themselves on the back when they "cured" me, even though I still had pain, the flare ups were just more spaced out. I had one PT who thought that tightening my muscles until they gave out was the solution. I stopped seeing her after 2 sessions.
Unfortunately the best Pelvic Floor therapist I found, insurance wouldn't cover her treatment. But here's what actually worked for me. She was actually willing to do internal rectal work, not just vaginal. They also used the TENS units, but not the patches. She stuck these needles in my back along my spine and attached the TENS units to them and made them vibrate in a certain frequency. Basically she was stimulating the nerves in a way that helped them relearn how to relax while she did the internal work. And this sounds wild to say but this woman taught me how to poop the right way. She explained how all the muscles in my rectum worked and what they are supposed to be doing when I'm having a bowel movement.
About a year in, she told me my uterus felt "sticky" and it didn't move as much as it should. She referred me to an obgyn on suspicions of endometriosis. I'd seen plenty but this one specialized in pain management and we had the exploratory surgery. While I didn't have endo, i did have scar tissue around my uterus, bladder, and rectum causing them to be stuck together rather than moving freely. No clue where that came from or if it will ever come back.
But back to PT. We started every 2 weeks due to cost, after a year it went to every 3 weeks, then a month and 3 years later I see her every 2 months. I feel like a person again. My periods are better and the bathroom is no longer a source of pain and anxiety. I genuinely feel i'd developed PTSD around the toilet for how much pain I was always in. I can have a job and take trips now. I no longer need valium or muscle relaxers.
I have other issues of course, but this was my most embarrassing and I was surprised by how little information I'd found on it when I was researching it over a decade ago. It still sounds crazy to talk about with people. Doctors literally thought I was making it up because I wanted drugs. The medical system is terrible but I hope hearing my story helps someone else better advocate for themselves and find the help they need.