What Many People Don't Know About Endometriosis and Pelvic Floor Dysfunction

Having endometriosis can be hard enough, but what a lot of people don’t know or realize is how endometriosis impacts your pelvic floor muscles and can cause pelvic floor dysfunction, which can also be a separate pain generator.

I wanted to share my experience with these two conditions because I don’t think it’s talked about enough (likely because it deals with muscles “down there”). It’s such a common condition that accompanies endometriosis and we need to start talking about it.

That being said, let’s get to it!

What Is Pelvic Floor Dysfunction?

Pelvic floor dysfunction breaks down into the inability to correctly tighten and/or relax the pelvic floor muscles. Your pelvic floor muscles support organs that rest on them, along with controlling the ability to use the bathroom or “holding it” until we can make it happen. Sometimes people cannot tighten their muscles, whereas others struggle to relax their muscles.

This can also cause urinary issues (such as the urge to urinate or painful urination), constipation or bowel strains, lower back pain, pain in the pelvic region/genitals/rectum, discomfort or painful sex for women, pressure in the pelvic region or rectum, along with muscle spasms in the pelvis.

Every case is different, much like endometriosis.

I loved the way my pelvic floor physical therapist explained how endometriosis can cause pelvic floor dysfunction, so here’s her version that really helped me understand the correlation between these two conditions and why it likely transpired:

“Your pelvic floor muscles are naturally relaxed, but when they feel something that can cause distress (such as pain, high levels of stress or even anxiety) they can tighten up and go into a ‘Guard Dog Mode’. They only do this because they think they need to protect you from the distress signal.

With endometriosis, and from your history, it sounds like you were dealing with pain chronically so naturally, your pelvic floor muscles were tightening to react and protect you from that pain being signaled in your body.

Since you had excision surgery, that portion of pain is gone now, but your pelvic floor is so used to protecting you for all that time, it’s almost like they forget how to come down from it and don’t know how to go back into their natural and relaxed state so they’re essentially stuck in ‘Guard Dog Mode.’”

And that’s where pelvic floor physical therapy comes into play and can help.

Pelvic floor physical therapists can improve your specific pelvic floor dysfunction issues during weekly or bi-weekly physical therapy sessions over a set timeline. They will use a range of treatment measures, which may include breathing techniques, biofeedback, manual therapy, trigger point muscle manipulation, exercises to strengthen muscles, stretches to relax the muscles, and vaginal dilator training (often done at home in privacy).

Keep in mind, the physical therapist will create a unique treatment plan with any of the above methods as they see fit for your muscles and issues. They will often have you come in for an initial consult, where they will do an external and internal exam. From there, they will create your treatment plan and can send in the required documents to your health insurance to coordinate the duration of physical therapy, as well as how many visits you can receive.

Again, this will vary from patient to patient.

I had three months of pelvic floor physical therapy before getting excision surgery for my endometriosis. Some progress was made, but it wasn’t where I wanted it to be by the time I finished. My pelvic floor dysfunction pain was different compared to the endometriosis pain I felt, along with often being on a pain level of 3-4 daily. During endo flare-ups though, my pelvic floor pain would heighten, and some days would even reach a 6-7 on the pain scale — and that was just my pelvic floor pain being that high, not including it in combination with my endo pain (which would be on a whole other scale).

However, after having my excision surgery, my chronic endometriosis pain significantly decreased and I daresay it felt like it completely vanished. This is not the case for everyone, and I know I still have endo since it cannot be cured, but to be able to eliminate that chronic pain I dealt with for months on end gave me my life back.

During my excision surgery recovery, I still noticed the pelvic floor pain though, so I let my surgeon know and we decided together that it was probably a good idea for me to go back and do more pelvic floor physical therapy for a second round.

This time around, I found a different pelvic floor physical therapist using the website Pelvic Rehab. It was the best decision I made, and I am so thankful my first pelvic floor physical therapist recommended it to me when we wrapped up my first round of therapy (as they suspected I would need more after my excision surgery).

I loved my second pelvic floor physical therapist. She was amazing, kind and very understanding from our first consult. Since the excision surgery was successful, my muscles were much easier to manipulate and relax. That chronic pain was gone, leaving my pelvic floor no logical reason to stay in “Guard Dog Mode” after they were worked on.

My second round of physical therapy was much more successful — even on my bad days, I rarely had pain over a 3 or 4 on the pain scale for my pelvic floor, which was incredible. Today, I hardly ever have pelvic floor pain that goes over a 2 (even during a flare-up) which is huge progress. I am so grateful that I pushed myself to do more physical therapy after my excision surgery because the difference is night and day. The other great news is that now when I feel that pelvic floor pain, I know what I can do to help make it better on my own because I have the right knowledge, thanks to my amazing physical therapist.

Pelvic floor dysfunction is something I think all women with endometriosis should investigate further with their care providers and determine if pelvic floor physical therapy may be worth trying. I wasn’t even aware I had any form of pelvic dysfunction until I saw my endometriosis excision specialist and he explained it to me based on how my pelvic muscles responded/spasmed during a pelvic exam.

No one else on my healthcare team picked up on this issue for well over a year, so I am very grateful my excision specialist did as the longer something goes untreated, the worse it can get. This is another reason why I wanted to bring awareness to these two conditions.

What They Don’t Tell You About Pelvic Floor Physical Therapy

One thing I want to talk about regarding pelvic floor physical therapy is the emotional toll it may take on you. This is something I didn’t know about or expect, but I found out firsthand during my first and even more so during my second round of physical therapy.

First, pelvic floor physical therapy is very invasive. You’re basically letting a stranger touch and manipulate your body, usually externally and internally. Those who have experienced sexual abuse in their past can have a really hard time with this treatment, which makes sense. If you find yourself in that situation, please let your physical therapist know as they can try to do as much as they can externally, along with understanding that the pace and approach may need to be different for you versus other patients (and there is nothing wrong with that).

Let me clear the air here quickly; no, this was not applicable to me, but they do ask you about it during your first visit because there are other approaches they can use that are less invasive, so they can still help you make progress in a more comfortable way. I encourage you to be 100 percent honest and not let that keep you from getting the relief you and your body deserve.

You deserve to live a less painful or pain-free life. We all do.

The next thing I want to talk about is the emotional roller coaster you’re probably going to experience. There are days you’ll leave your session feeling like a champion. You endured your visit and even feel some pain relief, it’s a great feeling, and you feel like things are finally going right for a change! These moments are awesome, but honestly, I didn’t have too many of these moments during either of my rounds of physical therapy.

Instead, I would often cry in my car on the way home from my sessions. Not because of the pain, but because of how I felt inside — I felt completely broken as a woman.

As a woman, our bodies are meant to stretch, relax, tighten and more for so many things, such as using the bathroom, having sex or having a baby. Every time after one of my sessions, I would get in my car and take a deep breath and congratulate myself for making it through another session, but then my mind would always circle back to that same damn question, “Why do you even need these sessions?”

Then I would remember why I needed them.

My body was in so much pain, for so long, that my pelvic floor couldn’t even relax now that the pain had drastically decreased from excision surgery. It made me feel less like a woman all around. I do not have a child yet, and I used to want one, but after my endo pain and symptoms onset, along with the severe pelvic floor dysfunction that was brought on, this is a big and emotionally triggered question now.

I don’t know if my body could handle it and I’m very worried the trauma of childbirth could potentially send my pelvic floor muscles right back into “Guard Dog Mode” and I would have to do more physical therapy again. Two times is hard enough, I don’t want to go back again unless I really must go back, which I might one day and that’s a hard truth.

During my ride home from sessions, I would also fixate on the problems with my body down there and how they made me feel like less of a woman. The negative thoughts would keep rolling in, such as how I couldn’t just relax and control my own body to calm down, how the pain interferes with so many aspects of my life, that I might not be enough for my boyfriend — even though he has never made me feel like it and has been the most amazing man throughout everything I endured and continue to live with. I think about how I might be too afraid to try to have a baby if we wanted to make that decision, that a potential baby couldn’t even happen if I couldn’t tolerate or have sex, and that my chances of having a baby are already skewed because of having endometriosis.

The thoughts would go on and on — it was tough.

My second round of physical therapy made me realize I needed to go back to seeing my psychotherapist through online sessions. I needed someone to listen to me and help me navigate through these thoughts logically versus having them consume me in a downward spiral every time I went to physical therapy. Slowly, I started to be more accepting of those negative thoughts and was able to recognize them clearly to counter them.

One important thing I took away from my psychotherapy sessions was this advice. Just because I’m a woman, it doesn’t mean I have to be a mother to be considered valuable, or that my life will never be complete or worthwhile without having a child. I can still find ways to feel like I am enough for my boyfriend, and I need to be open about my concerns and fears if we decide to try to conceive, along with being realistic given my health conditions. Additionally, I don’t need to feel pressured by anyone, explain why I don’t have kids at my age, or why I need to go to physical therapy so much and for so long at such a young age.

Please know, I’m not saying this to scare you or make you worried about going to see a physical therapist for any pelvic floor dysfunction issues you might have. I firmly believe in pelvic floor physical therapy and can attest to how much of a difference it has made for me and my body, so if anything, I’m an advocate. I just don’t want you to go in unprepared and feel like you’re overreacting when you go through this as I did.

This form of physical therapy is emotional as much as it is physical. It can be so easy to bring yourself down, but if you’re aware of what might happen before going in, I believe you will be one step ahead to stay on top of your emotional wellbeing and more prepared to start this new chapter in your health journey.

Trust me, I believe you can do this, and it will be worth it in the end.

The Bottom Line

I didn’t choose to have endometriosis, just like my body didn’t choose to have pelvic floor dysfunction, but that’s life. It happens and all we can do is recognize the problem and do our very best to find ways to make things better for us moving forward.

I hope this helped connect the dots for you if you have endometriosis and still experience a different source of pelvic pain. If you do, please talk to your doctor about having your pelvic floor muscles checked and consider pelvic floor physical therapy as your primary treatment plan.

As always, take it one day at a time, in the best way you know how.