Opening the Door to a Recovered Pelvic Floor: Your Guide to Getting Care for PFD

When you’re in pain, all you can think about is getting out of it, but if you have pelvic floor dysfunction, that’s going to take a lot of work. You have to get a diagnosis, research the right clinician and/or therapist, commit to months (or sometimes years) of therapy, and do all the “homework” your therapist assigns. Oh, and let’s not forget the emotional work as you learn to be patient while your body becomes a more functional and less painful place to exist. The good news? The process can be a lot easier when you have the right plan in place.

First, let’s talk about getting a proper diagnosis because without that, you can’t receive proper treatment. Even if an internist or gynecologist is familiar with pelvic floor dysfunction, that doesn’t mean you’ll be immediately (or ever) receiving that diagnosis. As I say in my book The Inside Story, misdiagnosis happens because pelvic floor dysfunction may not be at the top of your doctor’s mind. He or she might want to run diagnostics or perform further testing. If you do, in fact, have PFD, these tests will be negative, because they do not detect pelvic floor muscle overactivity. Your doctor may be wonderful and well-intentioned, however many of them simply do not know about PFD from their medical school training. (Shout out to Tight Lipped, a wonderful organization that is working on fixing that problem! Learn more about it here.) You will likely have better luck with a urogynecologist, whose specialty is the pelvic floor, or an internist or gynecologist who has a history of recognizing pelvic floor disorders. But even if you get the right diagnosis, you may find a clinician who doesn’t have a good understanding of how pelvic floor dysfunction needs to be treated.

If your doctor can’t relatively quickly determine your pain driver, or primary source of pain, then you might have to advocate for yourself. In America, we have direct access. This means you can go ahead and schedule an appointment with a pelvic floor physical therapist without a referral. (Keep in mind that not all states allow for the same level of direct access, so make sure you know the rules in your state before seeing a therapist.) 

In the same way you should ask for a recommendation for a good doctor, you should do the same for a pelvic floor physical therapist. You may feel like you are the only one experiencing your symptoms, but I promise you that is not the case. Don’t be surprised if you find out your aunt or friend had the same problem and knows of a skilled provider. The internet can also be a good starting point for research. In the USA, you should search the American Physical Therapy Association’s website for a trusted therapist in your area.

Make sure your therapist has at least six months of experience. Sometimes this information will be found on their website or LinkedIn, but don’t be afraid to ask. 

Also ask how many continuing education classes your therapist has taken and which ones. Personally speaking, I like the Herman & Wallace Pelvic Rehabilitation Institute. Their courses and teachers are amazing!

Finding a therapist who solely treats pelvic floor dysfunction may be tough, but at least half of his or her patients should be experiencing PFD. 

Inquire about your therapist’s credentialing. The letters you see may be confusing, so let me help you break the code! WCS is very good. This stands for the ​​Board Certified Women’s Health Clinical Specialist from the American Physical Therapy Association, the gold standard within the physical therapy community for being considered an expert in pelvic health. (To put it in perspective, I am pretty sure I studied longer and harder for my WCS than for my licensing examination!) There are other letters you may want to look for. BCB-PMD means that one is board certified in biofeedback for pelvic muscle dysfunction. PRPC means that the clinician has Pelvic Rehabilitation Practitioner Certification through Herman & Wallace. CLT is a Certified Lymphedema Therapist. 

Now, evaluate your choice. Interviewing your pelvic floor physical therapist might seem like a tough thing to do, but it is vital. Do a trial visit. Consider how you feel. Is your therapist caring or dismissive? Is the staff friendly, and helpful with insurance or payment plans? Are you given homework? Has your therapist outlined your goals? A therapist may be great at what he or she does, but it’s important that you feel comfortable. As you will notice on my website, I allow potential patients the opportunity to receive a free phone consultation before making an appointment with me. 

Having pelvic floor dysfunction can be a scary and frustrating experience, but it’s less so when you are well-informed about your options and when you are empowered to best take care of your body. Whether you choose to seek care with Revitalize Physical Therapy or another respected healthcare provider, I hope this guide allows you to be your own best advocate. To your health! 

When They Don’t Have Time for Your Pain

Doctors are supposed to treat all patients equally, but sadly, sometimes they don’t. In fact, if you are a woman, you may actually receive worse treatment for your pain than if you are a man. If being in pain isn’t hard enough— add a doctor who won’t listen, and you can end up depressed, frustrated, and distrustful of the entire medical profession. 

What kind of inconsistencies are happening exactly? Let’s take a closer look. 

  • In a study of almost 1000 patients published in the Academic Emergency Medicine journal, it took women with abdominal pain in an urban emergency department 16 minutes longer than men to be treated. Women were also not as likely to be prescribed opiates. The study concluded that “gender bias is a possible explanation for oligoanalgesia in women who present to the ED with acute abdominal pain.” (Oligoanalegesia is just a fancy term for when pain is undertreated.) 
  • A 2022 article in The Washington Post looked at studies that explored the inferior medical treatment received by women experiencing pain compared to men. This included enduring a longer wait time to be seen for a potential heart attack, or being told they have a mental illness when they had heart disease symptoms. “Among middle-aged women,” that study said, “31.3% received a mental health condition as the most certain diagnosis, compared with 15.6% of their male counterparts.” 

And then there are personal accounts of women struggling for years to receive a proper diagnosis.

Broad City actress Ilana Glazer spoke of her battle to be taken seriously by doctors for pelvic pain. She went undiagnosed for two decades! “I remember being 15 years old and my mom and I sitting there and this doctor telling me that my problem was too problematic for him, and just feeling laughed at and so angry,” she said.  

Essayist Carli Cutchin had to wait 11 years to be told she had a compressed pelvic nerve. The reason? Medical professionals simply didn’t believe that her pain existed.  

Cartoonist Aubrey Hirsch created a comic about being told her ear pain was not significant enough to be problematic. However, when the male doctor looked closer, he discovered it was a ruptured eardrum with an infection. “Why didn’t you say you were in this much pain?” the doctor asked her at the end of the session, even though she had!

A few years ago, when Hillary Koplinka was feeling tired and achy, she was told to participate in yoga by her male doctor for what turned out to be Hashimoto’s disease! 

Maybe you’ve heard stories like these from your female friends and family?

So what can you do? Although the onus shouldn’t be on the patient to get her doctor to listen, there are steps you can take to advocate for yourself.

Zocdoc suggests being thorough in keeping notes about “when, where and how” your pain occurs so you can describe it. Having another person validate your story is also important, be they a friend or relative. It can also help to parrot back the information the doctor shares during the visit. 

Finally, don’t stop until you find a doctor with whom you are comfortable. 

 And if you are having pelvic floor dysfunction pain and live in New York or nearby, consider Revitalize Physical Therapy. You will receive top notch medical care from providers who know what you are going through! We will never dismiss your pain because we recognize that having the right team who takes you and your pain seriously can make all the difference.