How I Got To Pelvic Floor Physical Therapy For Endo

I have endometriosis, and there’s a lot I want to say about that. To start, I want to share some of my experiences with pelvic floor physical therapy (PT). This is a topic that’s getting an exciting amount of attention among doctors and people with endo, and I want to add my story to help anyone who might be considering whether this is a good choice for themselves.

Pelvic floor PT is becoming an increasingly common recommendation for people with endo, but many doctors don’t explain why it’s a good idea or provide any guidance for how to find a pelvic floor physical therapist, or what to expect once you get there.

And I want to reiterate: my experiences are my own, and what has worked for me may or may not work for you. Part of navigating a chronic disease we don’t know much about is reading about other people’s trials and errors. So here are some of my own trials, errors, and successes to help inform you as you make your own roadmap to treating your endo.

Why Does the Pelvic Floor Need Physical Therapy?

I first heard about pelvic floor PT about ten years ago when I was working as a full time Pilates instructor. We had a pelvic floor PT visit to do an educational seminar, and she explained that the pelvic floor is made up of several different muscles working in conjunction with our abs, glutes, and back muscles to support our movement and our organs. 

The muscles that make up our pelvic floor can become dysfunctional due to injury, disease, surgery, pain (that’s right – pain itself can cause dysfunction), or patterns of over/underuse. Dysfunctional muscles may either be overly tight or spasmodic and therefore weak, or they might not engage well and be weak. Muscle dysfunction is rarely isolated to one muscle; even if it starts in one place, the dysfunction will spread to other muscles around that joint or body part as they try to compensate for the original weakness.

When it comes to the pelvic floor, the relationships between these muscles, pain, the gut, the brain, and how dysfunctional pelvic floor muscles impact the rest of our movement is complicated. As a result, the symptoms of pelvic floor dysfunction are often mistaken for other conditions – which, in some cases, are caused by (or are related to) the pelvic floor dysfunction to begin with! 

Pelvic floor dysfunction can send doctors on wild goose chases around our anatomy. Symptoms of pelvic floor dysfunction can include pelvic pain, back pain, rib pain, sciatic pain, pain during intercourse, and pain while urinating or bowel movements. The PT who was presenting the seminar said that pelvic floor dysfunction can present itself anywhere between the ribs and the knees.

There is a high occurrence of pelvic floor dysfunction among people with endo, but the nature of that relationship is unclear. It’s not known if one causes the other, but treating the dysfunctional pelvic floor muscles can be a way to treat and manage pelvic floor pain related to endo.

Which brings me to my story with pelvic floor PT. It’s a long one, so go ahead and grab snacks.

After the Laproscopy, Then What?

I had my first (and so far, only) laparoscopy with ablation in October of 2017. At my post op appointment, my gynecologist recommended either birth control or Lupron, neither of which I’m interested in. (I am in no way knocking the decision to try one of these options, they just don’t feel right for me – another blog post). I asked my gynecologist if pelvic floor PT might help, and she said no.

After my lap, my symptoms got worse. As the months went on, I noticed that not only were my periods getting worse, I was now getting similarly intense pain during ovulation and sex. I was also experiencing pain in my thoracic spine and sternum so intense I couldn’t get out of bed on some days. 

The thoracic pain is what escalated out of control. It felt like being constantly stabbed in the back, just to the right of my spine right at where my shoulder blades sit. My sternum felt locked, and the stabbing pain in my chest that accompanied any movement seemed to say, “Try it, and something breaks.” I could barely breathe or lay down without agonizing pain.

After a not at all fun trip to the ER, I went to my primary care doctor who prescribed a muscle relaxer, which honestly did help, even more than the tramadol he also sent me home with. The relief I felt from the muscle relaxers made me think that maybe there was a musculoskeletal component to my pain that wasn’t being addressed. I requested physical therapy, and I got a referral.

Back to Back PT

At this point, I was going to the physical therapist for my thoracic pain. While my pelvic pain was continuing to escalate, it didn’t seem like much could be done for that. I decided to focus on my back, which was so bad I could barely wash my hair or lift a glass of water to my mouth.

The first PT I went to was not a great experience. Along with endometriosis, I also have Complex PTSD as a result of childhood trauma and abuse. I’m sure all the traumatic experiences I’ve had with doctors haven’t helped. Even though I have a lot of experience with manual therapy, the lack of consideration for my medical history combined with the amount of physical touching and so much of his weight on my body made me extremely uncomfortable. I didn’t go back.

The next PT I saw for several months. His general take on my condition was that I needed to learn how to relax. Like so many doctors, this one over attributed my pain to my trauma. Once he heard childhood abuse, I could almost see the connection he made in his brain: Another anxiety case.

I kept going to those appointments mostly out of spite. I could feel that I wasn’t making improvement, but I was determined to go through the steps. I kept trying to bring up my pelvic pain, but the PT would say to see my gynecologist. I also kept going because I felt bad about ditching the first PT. I wasn’t sure if I could just pull up stakes and head to yet another office.

After seven months or so of not getting much further than, “you need to learn how to relax,” I decided to change my approach. It was an excruciating seven months, though. Physically, the manipulations and scraping he did along my spine and ribs would be sore for days, but also it was also mentally and emotionally painful to be made to think that I was the cause of my own pain. I stuck it out as long as I could, and probably for too long.

In my research on trauma, I had uncovered a technique called “biofeedback”. 

I found a PT that was not quite two hours from my home who offered this service. The focus again was on my back, so during a typical session, I sat in a comfortable chair while my PT placed sticky pads on my neck and upper back and a heart rate monitor on my finger. These pads were connected to a laptop that would show a measurement of how much activity was happening in my neck and back muscles.

The idea was that I would be able to use this visual information as feedback. I could see where my baseline of muscle activity was, and then the PT would talk me through meditation exercises to bring down the level of activity.

As it turns out, I’m really good at that. I can take deep breaths and bring down my heart rate and muscle activity. The evidence was right there on the screen. My back pain was unfazed. Maybe, my pain wasn’t because I couldn’t relax after all. 

This PT was also doing some manual therapy on my back, and in one session, I asked her to look at some recurring pain in my right knee. As she poked around she observed that my quads were extremely tight. When she got to my adductors (inner thigh muscles), her eyes widened. “This is hypertonic,” she said. (Hypertonic refers to a muscle that is too tight and/or unable to relax.)

I nodded and told her that’s how my inner thighs always feel, and also my pelvic floor muscles. I asked her if she thought pelvic floor physical therapy might help. She said it absolutely would, and she got me a list of referrals.

From Back to Pelvis

It had now been about a year since I first went to a PT for my back, and I was starting to understand that I’d been barking up the wrong tree. I went through the list of pelvic floor specialists and found one that accepted my insurance.

At this point, I’d been in pain long enough and I was frustrated enough with the process that I wanted to see the best damn physical therapist I could find. I decided to go with a practice in Beverly Hills, which was about a three and a half hour drive from my home. 

When I called to make the appointment, I insisted on seeing the therapist who is the head of the practice. It was a little pushy of me, yes, but I figured I’ve gone too far to see someone who is anything less than an expert in this type of care.

In my first appointment, the PT did a thorough assessment of my posture, movement, and muscle function. The internal work wasn’t as terrible as I thought it would be. It felt like having a trigger point massage done on the inside of my vagina.

I transitioned to a different therapist after a few sessions who turned out to be absolutely wonderful. I saw her once a week for the next several months. She identified that I also have scoliosis, and we alternated sessions between working on my pelvic floor and my thoracic spine. She discovered which of my pelvic floor muscles are too tight (I’m looking at you, right side obturator internus), and her manual therapy plus the at-home stretching and exercises brought a lot of balance to my pelvic floor.

A typical session would start with a quick assessment. From there, my PT would see if my SI joint needed any mobilizing and she would do whatever external work my glutes were needing. If we were doing internal work, she would leave the room while I took off my leggings and got under a sheet.

I would lay on my back with a pillow under my knees and my legs slightly spread. She would sit next to me and with lots of lubrication, use a finger to massage and manipulate my pelvic floor muscles from inside my vagina. Occasionally I would have to do something like press my right knee into her other hand while she palpated internally. But mostly we would have light chit chat in between her asking me how things were feeling.

As my pelvic floor and glute muscles got the stretching and strengthening they needed, my thoracic spine finally started to hurt less. Our pelvic floor is kind of like the foundation to a house. If our foundation gets out of whack, that imbalance will reverberate up and down through our muscles and skeleton. I don’t think even another five years of PT on my back would have been successful if it weren’t for the pelvic floor work.

My progress was slow but steady. I was keeping track of my symptoms, and noticed all sorts of things improving. I wasn’t needing to urinate as often; bowel movements were more regular and far less painful; sex was less painful; my posture was improving; and my back was hurting less.

The biggest surprise for me was just how much pain reduction happened when I addressed my pelvic floor muscles. I had thought for sure that at least some of the burning, stabbing, ripping, pulling, and electricity like pains I had around my pelvis, vagina, and anus were outside the scope of a PT. No way in heck is manual therapy going to make it not hurt when I pee.

I was mistaken. In my case, there was all sorts of pain that became far more manageable when my pelvic floor muscles got some attention. I don’t want to oversell anything, though.

Stuff still hurts. It hurts less, though, and it’s far more manageable. I can have sex most of the time without pain. My bowel movements almost never make me sweat and throw up anymore, except on the worst day of my period. I can generally exercise without my back screaming in pain or my sternum getting locked in place. 

All things considered, for me, PT was totally worth it, and I enthusiastically recommend it to others. That’s saying a lot because it was a huge pain in the ass to get to that step (almost as much as the literal pain I had in my ass). I have more I want to share about this topic, but I’ll leave it there for now. If you’re considering pelvic floor PT for yourself, I hope reading about my experience helps you make the choice that’s right for you.

Resources:

Read more about pelvic floor dysfunction here: https://www.healthline.com/health/pelvic-floor-dysfunction#diagnosis

Read more about pelvic floor dysfunction and endo here: https://centerforendo.com/the-significance-of-pelvic-floor-muscle-dysfunction

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