This is one of those posts that has taken me FOR.EVER. to want to write. I did a lot of soul searching and realized why. This is me currently. This isn’t my medical history… which is easily summarized… this is the active, messy journey that I’m on. I have anxiety about being criticized, being wrong, being criticized for being wrong… etc.
This part of my journey also opens me up to the many moving pieces in my healing process. It wasn’t and isn’t a one-size-fits-all approach. I don’t do one thing to heal, I am currently doing many. And this makes it difficult to explain in one post without having 20 back-up posts on the things I will be talking about.
Rest assured, I will get to comprehensively cover the tools I use to heal from vulvodynia… but (as always) it may take a while.
We left off the last Medical Journey post with a feeling of hopelessness. But, gratefully, I was born with a researcher’s heart. After a few Google searches, and reaching out to my Vulvodynia Facebook Group, I found a Pelvic Floor PT and a new GYN who specializes in vaginal pain. It was such an amazing feeling going from dejected to informed and hopeful.
I’ll start with… PT. I found two pelvic floor physical therapists online that accepted my insurance. One had a long wait time, so I went with the second. In my first appointment, we discussed my vulvodynia and vaginal pain. We discussed other issues as well, such as my constantly tight back/shoulders and my knee pain that resulted from bed rest. This PT encouraged me to first heal the outer pains before we moved to the pelvic pain. I got orthotics to support my ridiculously high arch. I went weekly to realign my hips and ease my muscles to relax in my back. After about 4 months, I asked my PTA (I had been switched from the PT to one of her assistants) when we were going to start working on my pelvic pain. She had seen pelvic pain on my chart, but was never told that it was the main issue that I wanted to fix. She started some assessments and she determined that my inner thigh muscles were the tightest she had ever seen! We worked for a few more weeks to stretch and relieve that tension.
After about 5 months total with that clinic, I was finally told that they do not treat pelvic pain/vuvlodynia.
I freaking kid you not. I found them online because they wrote on their site that they treat vulvodynia. However, apparently the PT who had that training had moved years ago and they never removed the claim. Even when I had my initial consultation, the clinic PT told me that she could help me and that they do treat vulvodynia. I felt hoodwinked. And frustrated. Yes, I had worked on other parts of my body… but I could have done that in conjunction with pelvic floor PT!
This added to my frustration with doctors. To have my medical goals not only ignored but to be lied to about it made me furious. I felt like I had wasted 5 months and that I was never going to find someone to trust.
Then enter the other Pelvic Floor PT clinic I had found online months before (you can view the Utah clinic website here). I called, and by a miracle, I got in to be seen in just a few short weeks. Because I had seen what pelvic floor PT is NOT, it was easy to recognize it in it’s true form. The women who treated me were phenomenal (I ended up being seen by all 3 PTs, as a result of my crazy schedule and location changes… but I settled in with the clinic’s head PT, Valerie Schwalbe).
I was taught about how my tight muscles and constant tension were a major factor in my pain. Since I had previously had the surgery to remove the painful nerves, this part of my healing focused on releasing the emotional and physical trauma that held me captive. I focused on full-body muscle relaxing. I focused on visualization. I had a safe space where I could talk with someone who really understood what I was going through because she saw it every day. I came to love Pelvic Floor PT. It was so healing for me.
The first thing I learned was that I didn’t know how to pee.
I’m not joking! In my first sessions, my PT guided me through how during our sessions, a relaxed pelvic floor felt almost as if you were about to pee. She encouraged me to do PT exercises at home and to try to find that sensation. I realized, with practice and sincere concentration, that I didn’t relax when I peed… I pushed the urine out!
Instantly, I was transported back to being a child. I had accidents a lot as a child. We have some theories as to why I dealt with incontinence, but there was no “this is the answer, and this is the solution” fix.
What we did determine was that I became so anxious about having an accident as a child, I learned to constantly have a tight (re: incredibly tight!) pelvic floor. I clench my pelvic floor so much that it has been the hidden culprit behind my constant back and neck pain. In fact, even still sometimes I have anxiety when I focus on relaxing my pelvic floor. I am so conditioned that relaxation = accidents = embarrassment/trauma.
There is so much more to write about in regards to my pelvic floor PT journey, but this post is getting long. So I am going to take a break here. Thanks!