Disclaimer: This post represents a paid partnership with the brand Soul Source.
Thank you so much to Soul Source for sponsoring Endo Strong!
When I first suspected I might have endometriosis, I expected to be told I needed surgery. I had done enough research to know that the only way to definitively diagnose endometriosis is by diagnostic laparoscopy. But what I didn’t expect was to hear that my pelvic floor muscles had become dysfunctional. Now, I was going to need to do internal work with a pelvic floor physical therapist in order to retrain my body to release its muscles and relieve its pain. I’m pretty sure my first thought was, Um, what?!
Beginning pelvic floor physical therapy shook my world, in more ways than one. In case the experience of a stranger poking around my most intimate body parts was not jarring enough, I quickly discovered how painfully slow the process of pelvic floor physical therapy can be. It’s important not to progress through the exercises too quickly, as moving forward before you’re ready can actually make things worse. And, if pelvic floor PT wasn’t slow enough already, the coronavirus quickly put a stopper in my plans for pelvic floor physical therapy.
If I’m being honest, it didn’t take me long to fall behind on my at-home exercises. During the first months of the coronavirus, I spent more time grieving for my missed appointments and canceled surgery than actually working toward my recovery. And that’s okay — I needed that time to feel sorry for myself. I think we all did at that point. Between canceled surgeries, weddings, graduations, sports tournaments…there’s not a single person I know who hasn’t lost something to this pandemic.
But now, as cities begin to reopen, it’s no longer time to feel sorry for myself. It’s time to get back on the pelvic floor PT bandwagon! Admittedly, after not doing it for so long, pelvic floor PT feels hard. In some ways, it feels just as difficult as when I started. But then I remember how frightened and uncertain I felt when I first got started. Not only did that shift my perspective, but it also inspired me to write this article.
If I felt that scared and unsure when I was being guided by a pelvic floor physical therapist, I can’t imagine how people must feel when they are starting their pelvic pain journeys in the middle of a global pandemic. Sure, now that states are reopening, some of us, like me, are willing and able to risk ourselves to visit a physical therapist in person. Yet I recognize that it is a privilege to be able to do so.
That brings me to the purpose of today’s post. Today, I’m teaming up with Soul Source — yep, the original silicone dilator company! — to share a comprehensive resource for all my endo friends who are getting started with pelvic floor PT at home. To be honest, I’m a little starstruck about this collaboration, since Soul Source was one of the first resources I found on my pelvic floor PT journey. I’ve been keeping it quiet for about a month now, and I’m so glad to finally be able to share it with you all!
Why Pelvic Floor Physical Therapy?
As an endo patient, you may have already heard of pelvic floor PT. However, it’s important to note that pelvic floor PT addresses a specific type of pain caused by a disorder known as pelvic floor dysfunction (PFD), rather than pain directly caused by endometriosis.
Chronically tight pelvic floor muscles cause a type of pelvic pain called myofascial pain, which is just one form of PFD. This pain can cause areas of tenderness in the abdomen, pelvis, and vagina, called trigger points.
Over time, pelvic floor physical therapy can promote myofascial release through gentle trigger point massage. For people with vaginas, this usually means your physical therapist will perform internal work — which is why it’s crucial to find a physical therapist you feel comfortable with.
Endometriosis does not directly cause PFD, but PFD often develops in patients with endometriosis. When we experience pain, our body’s instinct is to protect itself by contracting the muscles surrounding that painful area. As a result, people with chronic pelvic pain (like endo patients) may develop tight pelvic floor muscles.
While it’s true that laparoscopic excision surgery is the only viable treatment for endometriosis, many patients continue to experience pain after surgery. As my pelvic pain specialist back in Cleveland stressed to me, surgery can fix the pain caused by your endo, but it will not fix the added pain caused by your tight pelvic floor muscles.
Unfortunately, PFD does not go away when the endometriosis pain does, so removing endometriosis lesions will not cure PFD. The only way to fix PFD is to retrain your muscles through physical therapy.
Getting Started with Pelvic Floor Physical Therapy
To help you feel less overwhelmed, I’ll break getting started with pelvic floor physical therapy into three easy steps:
- Finding a pelvic floor physical therapist near you.
- Learning about pelvic floor physical therapy.
- Stocking up on pelvic floor PT essentials.
Step One: Finding a Pelvic Floor Physical Therapist
Oftentimes, reaching out to a pelvic floor physical therapist is scarier than starting the PT itself. As a sexual assault survivor, I definitely found this to be true. I knew if I was going to have internal massage done, I wanted my PT to be someone I could trust — but it’s difficult to know who you can trust simply by reading someone’s biography on a website.
You can approach finding a pelvic floor physical therapist in one of two ways. Your pelvic pain specialist or endometriosis expert might recommend a colleague who is a pelvic floor physical therapist. Or, you can search for a pelvic floor physical therapist on your own.
If it’s possible for you, I recommend, at the very least, visiting your endo doc before starting pelvic floor PT. Pelvic floor PT won’t help if your problem isn’t actually PFD, and your doctor can confirm the diagnosis of PFD through a pelvic exam.
You should always look for a pelvic floor physical therapist who is board-certified. There are a few types of board certification you might come across in your search for the right PT. All the abbreviations that are thrown around can make physical therapy seem like a foreign language — so allow me to translate two of the most common certifications you’ll see:
- Women’s Clinical Specialist (WCS). The American Physical Therapy Association (APTA) represents more than 100,000 physical therapists in the United States. APTA delegates the supervision of its Women’s Clinical Specialist (WCS) board certification to the American Board of Physical Therapy Specialties (ABPTS). This means ABPTS administers the certification exam and governs who is eligible for certification. In order to call themself a WCS, a physical therapist must be licensed to practice PT in the United States, have completed at least 2,000 hours of direct patient care in the women’s health specialty, and submit an application for certification that includes a case reflection. After their application is accepted, they must sit for the certification exam. PTs can only use the WCS credential once they pass this exam.
- Pelvic Rehabilitation Practitioner Certification (PRPC). The Pelvic Rehabilitation Practitioner Certification (PRPC) is overseen by Herman & Wallace Pelvic Rehabilitation Institute. The Institute primarily provides continuing education courses for current PTs, but also offers the PRPC. PRPC applicants do not need to be PTs to earn this certification; they may also be doctors of osteopathic medicine (DOs), physical therapist assistants (PTAs), registered nurses (RNs), and other medical practitioners with a valid U.S. license. In order to sit for the PRPC exam, professionals must document 2,000 hours of clinical experience in the women’s health specialty, but only 500 of those hours need to include direct patient care.
Search engines can help you locate a pelvic floor physical therapist, but they aren’t always reliable. Google won’t always tell you whether or not a pelvic floor PT has the right credentials or what those credentials mean. I recommend turning to sources like the International Pelvic Pain Society (IPPS), which has its own search engine to help you find a trustworthy provider specializing in pelvic pain. Other recommended sources include:
- APTA Pelvic Health Academy, the APTA’s membership community of pelvic and abdominal physical therapists.
- Global Pelvic Health Alliance, a global directory dedicated to helping you find pelvic health professionals.
- Herman and Wallace, a continuing education resource in pelvic floor PT for physical therapists, whose website includes a directory of pelvic floor PTs.
Step Two: Learning About Pelvic Floor PT
Making an appointment with a pelvic floor PT is an important first step that should be celebrated, but you might be itching to get started right away — I felt the same way! After all, when you’ve already waited 10 years for an endometriosis diagnosis, waiting a month for an initial PT appointment can feel like the straw that broke the camel’s back.
In the meantime, one of the most important things you can do, both for your physical health and your mental health, is to learn everything you can about the pelvic floor. Educating yourself through reading will help you understand your treatment plan better, converse more clearly with your pelvic floor PT, and become a more active participant in your PT experience.
There are so many great books and resources out there that have been recommended to me by doctors and patients alike. Here are a few of my favorites:
- Heal Pelvic Pain by Amy Stein, DPT was the first chronic pelvic pain book ever recommended to me. I recommend buying your own copy of this book rather than borrowing it from the library, because you’ll definitely want to look back on it during your pelvic pain journey. It contains a week-by-week stretching and strengthening program for PFD and directions for performing internal massage at home.
- The Chronic Pain Research Alliance offers a comprehensive patient guide to chronic overlapping pain conditions (COPCs), which include endometriosis, vulvodynia, and interstitial cystitis. As you may already know from reading my blog, many of these disorders go hand-in-hand — hence the term “overlapping.” The CPRA patient guide explains the mechanisms behind chronic pain, as well as things you can do at home to relieve the symptoms of COPCs.
- The V Hive women’s health podcast, hosted by Hannah Matluck (a pelvic pain patient), is amazing on so many levels. In addition to covering everything from nutrition for endometriosis to the importance of periods in girls’ global access to education, the V Hive has tons of episodes related to chronic pelvic pain. Try listening to episode #57, Diagnosing and Treating Pelvic Pain, or episode #66, Why Our Pelvis is the Core of Our Well-Being.
Step Three: Stocking Up On Pelvic Floor PT Essentials
At some point in your pelvic floor PT journey, your provider is probably going to ask you to perform maintenance exercises between appointments, including internal trigger point massage. While doing exercises on your own can be intimidating at first, it definitely helps if you already have the right tools for the job.
Enter Soul Source. I first discovered Soul Source at the recommendation of my own pelvic floor PT, and quickly fell in love. I mean, there’s a lot of things to love about this company: their products are made in the United States, they were designed by a sex therapist and a gynecologist, and Soul Source performs global outreach to help women all over the world, to name just a few.
Soul Source makes and sells both rigid and silicone vaginal dilators, including the only vaginal dilators specific for transgender anatomy. Personally, I use their silicone dilators — in particular, the size #4 — to perform internal massage at home. (Please note that I exclusively use my Soul Source dilators under the guidance of my PT. Soul Source recommends that you consult a pelvic pain practitioner before use in order to get the most benefit from their products!)
The silicone dilators are especially great for people like me who suffer from vulvodynia in addition to PFD. Because I suffer from vulvodynia at the vestibule, penetration with a rigid dilator would be much more painful than using the silicone ones from Soul Source. I also know that their silicone dilators are often recommended to patients with vaginismus, a different sexual pain disorder characterized by painful contractions of the vaginal wall upon attempted penetration. Soul Source also makes rigid dilators that are recommended for trigger point release by many pelvic floor physical therapists.
All of Soul Source’s vaginal dilators are body-safe and easy to clean. They are widely used by the medical community (including my own doctors!), so you can trust that their products are legit. As someone with vulvodynia and chronic vaginal infections, it’s definitely important to me to be conscious of what I put into my body. I’ve never felt any hesitation about using Soul Source’s products — and if you prefer an extra layer of protection, they are condom-compatible.
While browsing the dilators at Soul Source, you can also stock up on other pelvic floor PT essentials. A quality lubricant is a must-have for internal work. I swear by Good Clean Love’s BioNude lubricant, which was formulated especially for extra-sensitive skin.
You can find this lube at Soul Source, as well as one of my other favorite pelvic pain buddies: the Ohnut! The Ohnut is a set of four flexible silicone rings worn on the penis to help partners explore comfortable penetration depths. If you don’t want to compromise intimacy as you work toward pain-free sex in PT (and if your provider gives it the okay), then the Ohnut is for you.