Thanks for your patience with my reply, and I hope you’re recovering well from Covid, it’s the pits! I too tend to write super, super long posts and articles, as you’ve probably seen. This one is no exception, so you’re in good company.
Note: I don't think most of my hyperlinks worked in this post, so I'll try to figure that out in the next few days, and repost with the links here. Didn't want to keep you waiting any longer in the time being!
First of all, I wanted to thank you for sharing your story here on Scarleteen – as I mentioned, I hear stories like yours frequently in my line of work, but these are experiences that are less well known to folks in the general population. Sometimes just knowing that others are living with similar struggles can make such a difference!
It’s also fantastic to see how thoroughly you’ve been educating yourself on your symptoms and other issues related to the non-relaxing pelvic floor: you’re ten steps ahead of many other folks in similar situations, so kudos to you! You made a few specific comments in your first post that struck me as keenly observant, so let’s start by looking at those:
The pattern of hypervigilance that develops after traumatic experiences can manifest in the body.
1000%!! This is an incredibly common adaptation of the human body: it’s our nervous systems at work, trying their best to protect us. When we are placed in a stressful situation, our bodies and minds react instinctively, often in one of three ways: fight, flight, or freeze.
After a traumatic experience, it’s only natural that we would instinctively want to avoid a similar experience in the future. It seems logical that paying extra-close attention to the world around us could help us identify potential threats or warning signs of another negative experience.
We become a bit like a wild animal that’s being stalked by a predator: our eyes and ears are open wide, searching for threats. We tighten our muscles, preparing to spring away from danger at any moment (or spring into action to defend ourselves against the threat.) We maintain this tension, often unconsciously, until we are absolutely certain that the potential hazard has passed.
Now consider cases in which we are exposed to repeated traumas and/or threats. Our bodies rarely, if ever, get the opportunity to relax and unwind that stored tension. Eventually, this state of high alert and tension becomes the body’s default state – it forgets how to relax and unwind.
Pelvic floor tension seems connected/related to tension in other areas of the body.
Definitely! Our bodies are complicated, interconnected organisms – it’s nearly impossible to fully dissociate one body region from another. When working with patients, physical therapists often base our treatment choices on the concept of “regional interdependence”. This concept holds that impairments (aka problems) in one area of the body can contribute to and affect symptoms in seemingly unrelated body regions.
An excellent example of this is the growing body of research that shows a connection between the pelvic floor and the jaw. Compared to people without jaw issues, folks with dysfunction related to their jaw joints (the TMJ) are significantly more likely to also experience pelvic pain conditions.
I absolutely love this image that shows the anatomic similarities between the vocal cords and the vulva/vagina/pelvic floor. Even though the two regions are far apart in the body, they are like mirror images of one another: activity in one area affects the other, and vice versa. Long story short: it makes total sense that you also experience some jaw issues. It’s a bit of a chicken-or-the-egg dilemma—did the jaw problems come first, followed by the pelvic floor, or the other way around?
In the end, though, determining which came first doesn’t really matter: what matters is addressing tension throughout your whole system, because it’s all so closely linked! We’ll get there soon
Orgasm seems to temporarily improve your “hypercontinence” peeing problem.
What an amazing observation on your part! You’re recognizing a real-life example of a concept known to PTs as autogenic inhibition. This concept is part of a larger framework called proprioceptive neuromuscular facilitation, or PNF (how’s that for fun dinner party trivia?!?).
While it’s not necessary to intimately understand the finer points of PNF, rest assured that what you’re experiencing after orgasm is definitely A Thing. Basically, immediately after a strong muscle contraction, a muscle group is temporarily “weaker” (i.e., it can’t generate as much force and tension right after contracting).
The repeated contractions and relaxations of your pelvic floor muscles during orgasm can kickstart this reaction, causing your pelvic floor to essentially “forget” how to hold tension, as you say, at least for a little while. Yet another reason why orgasms are good for us!
All of this is a long way of saying: good on you! You’re obviously deeply observant of what is happening in your own body, and you’ve already intuited a lot of the important concepts of rehabilitation for people with hypertonicity and pelvic pain. So, what’s next? What else can be done to help? Let’s go there now!
Pain and the Patriarchy
Firstly, I’m really sorry to hear about these subpar experiences you’ve had when seeking medical help for your symptoms. I hear stories like this all too often, and I know how incredibly frustrating it can be to feel like you aren’t being heard or taken seriously. Even when a provider is listening well and truly trying to help (which is more often the case than it may seem!), they may simply lack the specific knowledge and training to manage conditions like yours.
I am by no means intending to throw my fellow healthcare professionals under the bus here: I firmly believe that the American healthcare system is failing all of us, patients and providers alike. If an OB-GYN seems rushed, it’s usually because they are: in many practices, they have patients scheduled every 15 minutes, quotas to meet for their managers and insurance companies, and a massive backlog of documentation to do (usually at home, long after the work day is done).
Additionally, American medical training does an abysmal job of training physicians in sexual health and medicine. Even urologists and gynecologists, who are supposed to be the experts in our sex organs, receive little-to-no training in human sexuality, beyond the most sterile clinical discussions.
Even as a pelvic PT who trained with a pretty progressive organization (shoutout to the Herman & Wallace Pelvic Rehabilitation Institute!), I’ve had to seek out specific education on the science behind arousal, desire, and pleasure on my own. In short, unless a medical provider is really internally motivated to learn more about sexual function and the conditions that affect it, they won’t get much information in their formal schooling.
You’re also 100% right about the male-centric bias of much of medical training. The reasons behind this bias are varied and complex—down with the patriarchy!—and generally beyond the scope of our discussion here. Suffice it say that female bodies have long been considered “too complicated”, “too delicate”, and/or “too sacred” to serve as research subjects. And of course, any bodies that fall outside of the typical gender binary have historically been completely erased, but that’s a whole other can of worms I won’t open right now.
All of this is a long way of saying that you’re right: getting good healthcare can be a complicated and exhausting process for people with vulvovaginal pain and hypertonicity. For this reason, I think that a “quality over quantity” approach is critical for folks like you.
So, what does a quality over quantity treatment approach look like? Knowing that your OB-GYN may simply lack the training and knowledge to address conditions like yours, where can you turn for help?
Seeking Help for Pelvic Pain & Hypertonicity
Let me start with the good news: there is definitely a lot that can be done to help folks with pelvic floor hypertonicity and its related symptoms. Taking a team approach to care, in which you and your trusted provider(s) are equally responsible for your outcomes, is often key to success in situations like yours.
I love that you are motivated to seek out self-care options for yourself! That type of internal motivation is absolutely key in the process of addressing pelvic floor hypertonicity – so you’re already one step ahead. You’re well prepared to be the driver of your own recovery journey, which I’ve found to be the number one determinant of success for patients. However, just because you’re driving, that doesn’t mean you can’t have a co-pilot in the passenger seat and a relief driver in the back for when you need a nap. Before we dive into resources you can use at home, let’s touch on your questions about pelvic PT and building a care team.
As a pelvic PT myself, you might say I’m a bit biased. However, my clinical experience has shown me, time and again, that a skilled pelvic PT can be a key contributor to the recovery of people with chronic pelvic pain and hypertonicity. It’s just what we do: we understand the movement system of the body intimately, and we have advanced training in the musculature of the pelvic floor (and all the other muscles that can impact it). Helping people with pelvic pain conditions is one of the most common parts of our jobs.
While biofeedback is a popular tool among many practitioners, pelvic PT is a lot more than just sensors and computer screens. Pelvic specialists have a large toolkit, with options ranging from therapeutic exercises to manual (hands-on) therapy to dry needling to pain neuroscience strategies, and beyond. After all, humans are complex machines that require a lot of different tools for maintenance!
Finding the right practitioner is the first step. As you already know, building a trusting, positive therapeutic alliance with your provider is perhaps the most important determinant of your success in rehab. It sounds like you have an awesome relationship already with the PT you’ve seen for other musculoskeletal concerns, and it appears that she and her practice are very conscientious about their new offerings, which is great to hear. However, given the complexity of your case, I think seeking out a PT who specializes in pelvic health above all is likely to give you the most bang for your buck.
Side note: most of the initial courses for PTs starting to specialize in pelvic health focus primarily on urinary incontinence – which is highly prevalent and important to treat! However, training on pelvic pain and hypertonicity usually doesn’t come until later in the post-professional training track – this is why seeking out a practitioner who has been specializing in pelvic health for a while is particularly important.
This isn’t to say that the therapist with the hot pink Wix website is your best or only option. As you know, personality matters when building a therapeutic relationship with your provider, so finding someone you connect with is key! (She may be a fantastic provider, but if you’re overwhelmed by pink décor and incense the moment you walk in the door, you’ll probably find it difficult to focus on anything else during a session.) If you decide you’d like to look for other options, the Pelvic Rehab website is an excellent resource: you can search by zip code to locate pelvic specialists in your area that you may not have found previously.
If you’re unable to find other in-person options near you, it’s also worth considering telehealth options. More and more pelvic health practices are offering virtual and hybrid (virtual + in-person) options to help those in underserved areas, and virtual care can be just as effective as in-person treatment! Many, like Origin, offer a free consultation to determine if their services are right for you before you commit to any paid appointments.
Paying Cash for Care
The “quality over quantity” mindset I mentioned earlier is a significant motivator for many PTs, particularly those who specialize in pelvic health, to move to a cash-based (no insurance) practice model. This practice model allows clinicians to spend more time 1-on-1 with each patient and perform the interventions that they truly believe will help the patient (rather than being restricted to the small list of treatments that insurance companies will cover).
Because they can focus on quality, cash-pay providers can often help their patients reach their goals in fewer visits than a traditional insurance-based practice. (Note: this isn’t saying that clinicians who practice in an insurance-based environment aren’t good providers – on the contrary, there are many spectacular professionals in those settings, much like the PT you’ve been seeing previously for other issues! I’ve spent most of my career in insurance-based settings, and I can attest to the fact that it simply takes longer to be effective when you only have a few minutes of facetime with each patient.)
All this to say: don’t necessarily write off a cash-based pelvic PT, even though the initial upfront investment feels like a lot. You may end up reaching your goals in fewer sessions because you’re getting more dedicated time with the therapist, and the PT has more flexibility to offer exactly the interventions that are right for you.
If you decide to consult with a cash-based PT, you can talk with them upfront about your financial situation and ask if they are willing to work with you to give you techniques you can work on at home. If you’re consistent with your “homework”, this may allow you to reduce the total number of clinic visits, and/or space them out considerably.
Additionally, you may be able to seek some reimbursement from your health insurance for out-of-network services with a cash-based PT: just ask your therapist for a superbill that you can submit to your insurance carrier. Some practices even offer sliding scales and payment plans to help improve access to care: it never hurts to ask!
Okay, Caitlyn, I get it…but how can I help myself?
I promise I’m getting off my pelvic PT soapbox now (mostly). I fully recognize that in-clinic professional care just isn’t feasible or realistic sometimes, so having some options to help yourself at home is key. Here are some suggestions for tangible things you can try on your own:
1. Keep working on the structures that surround your pelvic floor.
a. Stretching and relaxation exercises for your hips, glutes, and lower back can also encourage your pelvic floor to release and lengthen. We’ve already covered how distant structures like the jaw can affect your pelvic floor – the same holds true for its closer neighbors!
b. Vibrant Pelvic Health is an awesome resource for these types of activities, it’s great that you’ve already discovered that channel!
2. Educate yourself further on the neuroscience of pain.
a. I can’t overemphasize the value of pain neuroscience education (PNE) for people with persistent pain conditions. I absolutely love the book “Why Pelvic Pain Hurts” by Adriaan Louw, Sandra Hilton, and Carolyn Vandyken. This book introduces pain neuroscience concepts in friendly, approachable, lay language, and it offers practical strategies for managing persistent pelvic pain. Keep in mind that the book was deliberately written to be accessible for people with a wide range of reading abilities, so some of language is deliberately simplistic.
b. It’s important to remember this is neuroscience, not psychology. In no way
is this content suggesting that “it’s all in your head” or “you’re a headcase with make-believe pain”. PNE strives to help people understand how biological processes in our nervous systems contribute to the experience of pain, and how we can “hack” those processes to better manage pain and other symptoms.
3. If you’re feeling particularly motivated, you can work towards performing internal (intravaginal) treatment at home.
a. Some people with hypertonic pelvic floors find that they have very specific tense spots in certain muscles that contribute to their symptoms: we call these trigger points. A pelvic wand can be a useful tool for performing self-release of trigger points in your own pelvic floor muscles. This is a situation in which some initial guidance from a pelvic PT can be invaluable: they can help identify if you have trigger points and if so, how to best address them with a wand. Intimate Rose, a pelvic health supply company run by a pelvic PT, also has a ton of helpful information on their website about getting started with a wand.
b. There are many other manual (hands-on) techniques that a pelvic PT can teach you to perform at home. You can perform these by yourself or with the assistance of your boyfriend, if he’s comfortable helping. Some techniques employ tools like a pelvic wand, and others use hands instead. They can all help with reducing tension, tender points, and pain in the region. While many of them may feel like they are meant to stretch or “open” the vaginal tissues, they aren’t specifically designed to “pry oneself open” for P-in-V intercourse. (I personally hate that notion, and I find that focusing on penetration as the only goal can often be counterproductive.)
4. Keep educating yourself about pleasure and arousal and the many ways in which it can manifest.
a. I can’t recommend professional sex educator Emily Nagoski’s book, Come As You Are, enough. It’s a veritable encyclopedia of knowledge about sex, arousal, and pleasure, focused on women and other folks with vaginal anatomy. It depends on the community in which we were raised, but I find that Americans in general are woefully undereducated when it comes to sex in general and female pleasure in particular. Nagoski’s writing is approachable, nonjudgmental, and funny – it’s 1000% worth the read!
b. Nagoski also created an accompanying workbook for Come As You Are. It’s filled with practical exercises to learn more about your own arousal and desire patterns. It includes suggestions for ways to approach sex and intimacy differently depending on the issues you may be facing (i.e.- pain vs. low desire vs. anxiety about sex vs. difficulty reaching orgasm, etc.). It sounds like you and your boyfriend have already been experimenting and finding ways to be intimate well beyond the bounds of intercourse, so I think you might find her ideas an interesting adjunct to what you’ve already tried!
Phew! A ton of information here, I know – thanks for reading through my novella! In case you couldn’t tell, this is my passion, and I truly believe everyone deserves to have great, pain-free, joyful sex, however that manifests. I’m also a fierce advocate for the health and wellbeing of women and other vulva owners, and I believe that people with pelvic pain and hypertonicity deserve to be heard and helped, not brushed off.
I hope this information was helpful and empowering – and feel free to follow up with any outstanding questions that arise!