Scarleteen

Hello friends! It's been a while since I've been here. A lot has changed for the better in my life, but I'm back here for advice wondering whether anyone has any accessible/online/free resources for working with a non-relaxing/hypertonic/etc pelvic floor.

As is apparently the usual for me, this post is probably going to be super, *super* long as I try to get things straight in my head and written out. Thank you very much for your patience and help as always, and for giving me a place to do so!

Since I last posted here, I have stayed with the same lovely boyfriend, who has really gotten more educated, considerate, and willing to put in the effort I need. I was feeling really bad about that relationship this spring, but since then he's really stepped up, realized he wasn't putting in nearly enough effort, and actually changed that. We've been living together for a couple of months and things are really great. I am very, *very* happy that I got through to him and things are amazing now.

I had a long thread a couple years ago here about not expecting sexual desire or pleasure or arousal or orgasm. Since then, I've come around to accepting some things about myself I hadn't really felt I deserved to claim before (seeing a mental health professional for my lifelong major depression and OCD; going on bupropion which has been more of a game-changer than I can ever express when it comes to actually wanting to be alive; feeling okay with identifying as asexual; acknowledging that a *lot* of things about my upbringing and experiences should probably be described as traumatic).

I feel so much better about and less frustrated with myself on the sex and sexuality front. I am able to experience some pleasure with masturbation sometimes, and can get to orgasm by hand or with a vibrator (though I haven't yet by a partner's manipulation, but I'm not worried about it; it obviously takes my body a LONG time to learn these things and get comfortable with them, as learning to do it alone took months and months of practice, and it's not something that feels essential to my sex life).

I'm also becoming more and more convinced of my original conviction that my pelvic floor is a super-tight, never-relaxed mess. I grew up in an environment where I was very much constantly guarding myself against sudden, seemingly random physical and verbal outbursts of rage from my parents, and looking at that it makes sense that I've got tons of issues in by body all related to being hyper-vigilant and tense. My TMJ is really damaged, I have a screwed up shoulder, the list goes on. And then there's my pelvic floor.

I've also come to realize that, lack of pleasure aside, the pain I feel in my pelvic region is not normal the way I have always assumed.

(I actually suspect this is part of what informed my lifelong childhood terror of sex: when I heard people talking about it they always seemed to say it would hurt, and when they mentioned women screaming I thought they must be screaming in pain, and so on. It's a bit of a chicken and egg situation trying to parse expected and experienced pain, but I always thought of sex as something horrible that will inevitably happen *to* me to serve a man, that I don't really have a choice in the matter, and that it will be incredibly painful and violating.)

It seems silly, but I've only recently realized that intense pain on light contact with the vaginal vestibule, along with bright red visible inflammation, is not a normal thing for everyone, and is in fact a type of vulvodynia often called provoked vestibulodynia.

Also, this realization happened a bit earlier, but learning it isn't necessarily normal to have extreme difficulty getting things as small as tampons into the vagina, and PIV being entirely impossible, an extricating tears-in-eyes endeavor of something stuck in your incredibly painful-to-touch vestibule and hitting a wall preventing it from going any farther no matter how hard you pushed.

And this week I realized that I likely have a clitoral adhesion on one side (not a new one or a tendency towards forming them regularly; this has been here as long as I can remember) which is the cause of clitoral pain when I touch it at "wrong" angles, which I also just kinda thought was normal. Growing up I always felt a burning between my legs when riding a bike or sitting in tight pants and so on, and I recently made the connection from poking at that adhesion that that is, once again, not normal, and is the same sort of pins-and-needles or huh-that-is-weird burning pain as touching the clitoris there (rather than the raw, red, stinging pain of the vestibule, which is much worse).

I had actually tried to get a gynecologist to take a look at that adhesion when I first went to see one in summer of 2021 (and also generally take a look at my head-of-a-pin sized, absolutely miniscule clitoris) but she didn't point anything out or take a thorough look and instead it felt like she kind of made fun of me as if I thought I didn't have one. She also made a bunch of comments about how patient my poor boyfriend must be and her only comments about not experiencing any pleasure were to read an outdated book from the 70s and buy a vibrator. I've come to realize the average OBGYN or urologist has zero training on nuanced matters of sexuality or pleasure, and, after reading a recent NYT article, almost no experience performing a qualified exam of the clitoris, which is absolutely infuriating to me.

Self diagnosis can be tricky, dangerous, and unhelpful, but in this case I feel like it's just labeling exactly what's on the tin, since terms like vaginismus, vulvodynia, and adhesions aren't disease diagnoses in themselves, but fancy medical words for phenomena I can clearly observe are happening (muscles contracting too tightly to allow penetration, pain in the vulva, and a fold of skin I can clearly see sticking to my clitoris, respectively).

Putting aside the adhesion pain, I've read that vaginismus and in some cases vestibulodynia can be caused or worsened by a tight pelvic floor. Additionally, my lifelong experience of lots of difficulty experiencing any genital pleasure or orgasm, and the fact that my orgasms are still a strange, muted non-pleasurable shudder that usually feels like nothing or is even unpleasant, makes me think that, as an article on Scarleteen mentioned, my pelvic floor might be so tight all the time it can't create good strong contractions.

Also, this ebbs and flows, but over the last few years I've developed problems urinating. Not incontinence -- if anything I'm hyper-continent, and have a really hard time peeing sometimes even when I'm uncomfortably full of water and know I need to go. I always have to sit down for a minute and try really hard to relax and entice some involuntary muscle to "open" before anything starts coming out. It often feels like there's something uncomfortable stopping me from getting anything out, which seems to appear and disappear entirely involuntarily, leaving me peeing in a repeated stop-start fashion or sometimes in more tapered waves where the flow gets stronger, then very weak, then stronger, then weaker again.

I've noticed this goes away for a few days after I orgasm, so my theory is sending those contractions through my pelvic floor is a way to turn it off and on again, so to speak, and temporarily make my pelvic region hold less tension until it "remembers" the habit again.

Despite my lackluster OBGYN experiences and dread of an awkward, invalidating, and incredibly painful experience, I made an appointment a few weeks ago. I figured it would be nice to get the medical validation of a professional affirming what I see and providing and any potential direction on those issues, although I'm pessimistic about actually receiving those. But the first open appointment I could find with an OBGYN anywhere near me is in *April*. Over six months away from when I scheduled it.

In the meantime, I thought, maybe it's time I finally try pelvic floor PT. I have a PT I really like and have built trust with as she works on my shoulder and jaw, and she mentioned recently that she has started doing pelvic floor work and biofeedback. So I set a tentative appointment with her, still scared of the idea of pelvic floor PT but comfortable with her and determined to keep improving myself and find ways away from chronic pain and discomfort.

But today I got a call saying that my PT's pelvic floor biofeedback thing "isn't working very well" and they're taking some steps back to re-evaluate the program before opening back up to doing pelvic therapy. Which is great and honest and respectable of them. And leaves me out of an appointment.

They referred me to what seems to be the only other pelvic PT place around here, but it's... it's one of those private, no-insurance practices run by a white woman with a Sanskrit word in its name, a hot pink "designed with Wix" website, and a general vibe I'm skeptical of. Yes, she appears certified in some way or another and has positive reviews, but doesn't take insurance and the whole thing has a very ~holistic~ aura that makes me apprehensive.

Of course, she is also mostly booked, but has a few openings in November. I feel like maybe I should try it just to see, but I am a broke young adult who works like five jobs and is not keen on parting with $120 for a stranger to put me through the paces of an evaluation (which, to be fair, is 90 minutes, so at least it should be incredibly thorough and leave time for her to listen).

I'm also just apprehensive about pelvic PT for probably obvious reasons: expecting pain, the exhaustion of talking a stranger through your experiences and praying they listen and pay attention to you and that you don't forget anything, having someone poke around your vulva for a while and ultimately providing what might be nothing useful.

I also really hate how male-centered a lot of the discourse in the pelvic floor PT space is, especially regarding problems like vaginismus. Too much of the conversation seems to echo my OBGYN's oh-your-poor-boyfriend attitude, appalled that a man should be deprived of what they see as a man's right and a woman's obligation to perform PIV, and certain that your relationship must be falling apart and he must be miserable.

Of course, it's something I feel self-conscious and worried about myself, but my acceptance of it has gotten better with time. I know that PIV is genuinely not important to me or to my boyfriend, that this is not a strain that's going to break our relationship, that it isn't actually required of me and he doesn't want anything that will cause me pain. Our concept of what sex is has only gotten more nuanced, educated, and comfortable as time goes on. (Last night I heated up a bowl of frozen vegetables and seasoned them for him and he just looked at me and completely seriously said, "This is sex." And he was right! And he said the same a few nights ago when he just gently ran his fingers over my back and shoulders and I was somehow feeling way, WAY more present in my body and able to feel sensation than usual and cried because it felt so good. It's slow progress but we're learning.)

Still, it's tough to unlearn that societal shame and feeling of being not enough, defective, not offering a "feature" the average cis female partner is assumed to come with. And so I am really hesitant to plunge myself into any spaces or conversations that take the "shove these dilators in your vagina and winch yourself open for a man already" approach.

I just want to eliminate a source of chronic pain and discomfort in my body. I want to learn to feel less naturally apprehensive and terrified when it comes to touch down there. I want to feel safer and more comfortable and potentially experience more than the scraping few scraps of genital pleasure I've learned to be okay with. I want to be able to use tampons if I ever need to without pain or extreme discomfort (and maybe even be able to use the menstrual cup I got for free years ago but still haven't gotten near successfully putting in). I want to be less petrified of going in for a regular OBGYN exam.

Thank you so much for giving me a space to write this all out. It's been really helpful. I'm wondering whether anyone has resources for working on my pelvic floor for free at home that they can personally vouch for? I've been following some gentle stretches and exercise videos from Dr. Bri at Vibrant Pelvic Health, and observing things in the way I carry my body daily. I definitely used to suck in my stomach all the time, and don't think I do anymore, but I recently realized I'm a chronic butt and leg clencher, and seemingly don't know how to stand or move without habitually squeezing my glutes.

I've also read Betty Dodson's work on people who elicit genital pleasure via squeezing the pelvic floor versus rocking/humping type motions, and that the former often feels restrictive and potentially limits pleasure potential. Indeed, I'm guilty of being a squeezer, and squeezing hard through the pelvic floor, glutes, and legs. Sometimes so hard I can feel the burning lactic acid buildup eclipsing any pleasure, and doubtless due to a combination of habit, muscle tone, tensing trauma response, and a self-inflicted pressure to create any kind of genital pleasure and/or orgasm. It's like I'm desperately scraping at myself instead of acting in a sense of safety and lazy abundance, furiously trying to squeeze out a drop of good feeling, to "work on" getting better at this, to get the task done successfully.

While squeezing is fine if someone enjoys and is satisfied with it, I think it's an issue for me, so I'm trying to quit cold turkey and explore how it feels to receive touch from myself or my partner without habitually tensing everything up. It's really, really hard!! And, just like learning to masturbate first with a vibrator and then again without each took me months, I'm sure it will take me months and months of work to sort out how to orgasm without resorting to squeezing. Right now, I have no idea how it could be possible, but I've accomplished all sorts of things in my body the last few years that I never thought were remotely possible for me.

Thank you again for the place to write all this out. I'm curious whether anyone has any resources or personal tips or tricks or stories they're willing to share related to a non-relaxing pelvic floor and the other issues I've touched on here. Book recs, YouTube channels, or just notes about what worked for you are all really helpful and great. I realize the go-to answer to most of this should probably be "Go see a doctor," but I have six months between now and then and I'll gladly try any gentle at-home ideas in the meanwhile.

I'm going back and forth on whether I want to go to this private practice for an evaluation, and in any case I have another six months until I can see an actual doctor, so for now I'll gladly take any community suggestions for things to try and any words you may have for me. This stuff can get pretty frustrating and it would feel good to feel more understood and less alone, even if that just means someone here hears what I'm saying. And, of course, if anything I'm saying here sounds wrong or there's something in my thinking about this you want to challenge, I really appreciate that too! Thank you, Scarleteen <3

Hey there, sandpiper. It's nice to see you around.

We've been working with a pelvic PT here at Scarleteen over the last couple years, Caitlyn Tivy. If you put her name into the search function, you'll see her articles pop up, but here's the obvious one to start with to get a sense of her approach to things: https://www.scarleteen.com/article/bodi ... onrelaxing

I can't speak for her time or availability right now, but would you like me to see if she's open to looking at this post and pitching in for you?

Hi sandpiper,

I'm glad that being able to write all this out has been helpful for you, at the very least! And it's great to hear that things with your boyfriend are going well.

It's good that you have another OBGYN appointment scheduled, even though it's so far in the future. You may have done this already, but if you have some flexibility in terms of your schedule it may be worth asking if you could be put on a waitlist, in case that doctor has any cancellations before then. I really hope that this doctor will be more willing to listen to you and focus on your body and health, not what they assume your partner's feelings to be, during this appointment. If they do try and center your partner, it is 100% okay to push back on that and ask that they focus on YOU and your goals for the appointment and treatment. I know that isn't always easy to do (in all honesty, I'm rarely comfortable doing it!) but you absolutely have the right to redirect a doctor like that. Sometimes getting quality healthcare involves being pretty assertive; it shouldn't have to, but alas, sometimes it does.

I can definitely understand why you're hesitant about the other pelvic PT you found in your area. It's tough, because if she is effective, it would be great to get in to see someone sooner! But if she isn't, it's a lot of money and potential discomfort to invest in an initial appointment that winds up being disappointing. I think there's a decent argument to be made either way, honestly.

One thought I had about your existing PT: would it be helpful to ask her for help in relearning how to move without clenching your glutes and leg muscles as much? That isn't directly pelvic floor PT but might be helpful in allowing you to be more aware of how you're holding yourself in that general area and unlearning some of those clenching reflexes, if you're used to doing that very habitually.

Hi Heather and Mo, it's so nice to hear from both of you again!!

Heather, I read the article you linked by Caitlyn Tivy when I was writing this post and I really appreciated it. Obviously you cannot speak for her time, energy, and availability, but it would really mean a lot to me if you asked her if she has the space to give a few words of advice! Thank you so much for offering that and for your response.

Mo, thank you for empathizing. Those are some great ideas. Unfortunately I think I'm done seeing my current PT (I was supposed to have my final jaw appointment today, but woke up with an intense fever and what I really hope is just a cold or flu, so I canceled and they're comfortable simply discharging me to an at-home exercise program without seeing me again). But I'll definitely think about this and consider any opportunities to ask my old PT, especially if I come back to check in on the jaw or another issue.

It is so true that being assertive with doctors is really essential and really uncomfortable. I think I've gotten a lot better at it over the last couple of years, or at least I'm much more comfortable and confident in talking about my body in a sexual context and asserting what I know to be true. I had experience with a different issue I learned a lot from last year, when my ENT surgeon pulled the befuddling "I see the medication is working, great, that means we can take you off it" thing after a surgery and things got bad again fast, and I really had to fight to get her to listen to me and prescribe the low-risk medicine that was keeping me from dangerously regressing. It was a really frustrating experience, but I think I'm a lot better at advocating for what I know is happening in my body now. I just hope that holds true in medical settings, since it's easy to feel flustered and like things are going too fast and let a professional kind of talk over you.

I had ended up writing a letter and sending it to her and the other doctors I had seen documenting my experience, my request, notes from my appointments, and requesting the denial be marked in my chart. So, if nothing else, I know how to go back and make assertive statements after mulling things over, though it might still be tricky for me to keep up and do that in the moment, especially if it feels like an appointment is rushed. Is there anything you recommend saying or doing in a situation like that when an appointment feels like it's going super quick and you don't have time to process what is happening and say what you need to say?

I am leaning towards maybe trying to see the hot-pink-Wix-website-having holistic pelvic floor lady. She does have good reviews and has been in practice for a while, and if nothing else I'll know that I've at least tried some kind of formal pelvic floor PT, and hopefully gain some insight or exercises in that 90 minute visit. I think I'll call to consult with her about it as soon as I get over this flu.

When I was reflecting on this post, I found a blog post by a neurologist that had some things I really resonated with in it: https://mskneurology.com/chronic-muscle ... oe-to-you/

While it's just a blog post and not a formal medical article and I don't know that I am for-certain on board with everything he's saying, he describes something he calls Global Involuntary Clenching Strategy (not a real diagnosis, just his words for a phenomenon) that I really relate to. He describes people that seem to be perpetually bracing or tensing at least one part of their body, and often have to brace their entire body or an entire system of muscles to do targeted exercises.

(Anecdotally, he describes the personalities and lifestyles of many people he's seen that are this way, and those descriptions really resonate with me, too: constantly going fast and trying to work on tons of projects and deal with lots of responsibility, always talking in a fast, animated way and sort of jittering between tasks, trying to jump around frenetically to get it all done, history of trauma.)

The truth is while it's mostly my legs, glutes, and pelvic floor I have a tendency to clench both in a sexual context and constantly in my day to day life, if I just lie down and try to relax I feel like tension is bouncing around my body like that old DVD logo. If I notice it in my right arm and intentionally relax it, my left calf tenses up. If I intentionally relax that, my hand squeezes tighter. It's like a constant barrage of pings with random muscles involuntarily/habitually twitching into a tense state. I find that tensing just one muscle system, like the pelvis and legs, acts as a sort of "anchor" that keeps that game of whack-a-mole from happening, since the tension has made a home in that one place. Or sometimes an action like "cricket feet," rubbing my feet together or against the mattress at night acts as a similar anchor without the same tension.

I wonder whether there's something here to do with balance, overall strength, and the way I support myself generally in a physical sense, or if it's a weird trauma response habit thing (I've been reading The Body Keeps the Score and doing a lot of reflecting), or both, or something else. I'm an active person and think of myself as having good balance, flexibility, and so on, but then what is causing my muscle groups to be constantly pinging into action? Why does it feel so difficult to do something like bend and reach to make my bed without my glutes locking up? I'm trying to be more aware and relax whatever it is every few seconds -- just now, my right foot was weirdly flexed upwards -- but it just pops up elsewhere.

I realize that's more general than just the pelvic floor. Does anyone here relate to that sort of experience or have any ideas about how to work on it, besides just trying to be more aware and stop it when I notice? Thank you!!

Hi Sandpiper,

You've clearly been doing your research and taking the time to reflect and understand your body. I'm sorry it's taking so long for you to be able to find good professional support around this.

Since you're asking for personal experiences, I can relate to the tight jaw and shoulder - I hold my tension there too, and have some chronic injury that turns it into a bit of a negative feedback loop in times of stress. I don't have a magic bullet for preventing the tension build-up, but I do have a few strategies that sometimes help. The first bit, as you say, is NOTICING - sometimes it takes me a week to realise how much tension I'm holding, and then I have to remind myself that my shoulder at least is full of muscles I have voluntary control over, so I can consciously release them. And then 5 minutes later do it again. And again. Paying attention, breathing into it, warm baths all help, as does a gentle stretching routine, and when I can access it massage from someone with the skills.

To really sort out what's happening though, I have to deal with the cause of the tension, which means actively trying to regulate my nervous system. We can hold a lot of stress in our bodies, and sometimes we have to actively release it - Emily and Amelia Nagoski go into a lot more detail about this in their book Burnout but my mantra is Eat, Sleep, Exercise, See your friends. When I'm trying to release tension, I do these things while paying attention to the tension in my body and trying to let it go rather than papering over it with distractions - does that make sense?

Moving away from my personal experience and going back to your original question about a non-relaxing pelvic floor, the kinds of stretching techniques used to help with this can be divided into "global" and "local". A specialist will be able to help more with the local stuff, but some of the global things you can try are about letting go of the tension that you're holding in your glutes, thighs and hips. A simple exercise you can try is lying somewhere comfy like your bed, in comfortable clothing, bending your legs up towards you with your knees together and letting those bent knees flop apart, and repeat, paying attention to what you're feeling and what all your muscles are doing, and seeing if you can relax them more over time. What do you think?

Hey sandpiper,

This is Caitlyn - I'm the pelvic PT who writes the Pelvis Problems series and some other articles for Scarleteen. Heather shared this post with me, and gosh, does this sound familiar. I hear stories like yours so often in my profession, and every time, I get righteously frustrated by how poorly our healthcare system addresses sexual wellbeing, especially for vulva owners.

I'm happy to offer some feedback and suggestions here. I'd like to take a few days to formulate a thorough response, but I wanted to let you know I'm working on it and I'll get back to you asap! So that I can refer to you both properly, may I ask for your pronouns and your boyfriend's? Thanks!

Cheers,
Caitlyn (she/her)

Apologies for disappearing for a couple days- turns out I have COVID and that's been a lot to deal with, haha.

Siân- it's so good to hear from you!! Thank you so much for your insight and for being willing to share your own experiences. You have a lot of great advice. I've been taking some warm baths and slowing down generally this week since I'm sick, which I think has helped. I read Burnout a couple years ago and loved it! I think maybe I need to go back and revisit it in my new context where I understand myself better and I've gotten out of a lot of the exhausting situations I'd been in last time.

And that global and local language is really useful!! I've been doing that exercise you described this week and it feels really nice. It reminds me of another one I saw in a Dr. Bri video that involves lying on the ground with a yoga block or couple of thick books under your lower back and your knees bent, just resting like that for a few minutes, and then trying how it feels to bend the knees towards yourself gently and to bicycle the legs upwards one at a time. Thanks so much for all your ideas and tips!

Caitlyn- hi!!!! Thank you so much for taking the time to read and answer my question! It really means a lot. I've been really enjoying your articles. My pronouns are she/her, and my boyfriend's are he/him. Take all the time you need, and thank you again!

I'll add that since getting COVID I've been having a bit of a flare of the urinary symptoms and doing some more research (including reading some articles here!), and realizing I really relate to most of the listed symptoms around interstitial cystitis. I have a super slow crawl of a flow rate, frequent starting and stopping that feels out of my control and comes with a deeply uncomfortable sensation piercing upwards through my abdomen (not entirely sure whether it's severe discomfort and/or moderate pain, hard to tell, but it's somewhere in that range), difficulty getting myself to start and keep peeing, I always stop by "giving up" and don't feel like I've gotten it all out, and so on. I feel bloated and full of water all the time. It makes me feel self conscious and like I've gained uncomfortable weight looking at myself, but it's just water I can't get rid of, which I realize once the flare passes and i feel comfortable in my body again. I always try not to run to the bathroom a lot or "just in case" but I have been cognizant for a while that I go to the bathroom way more frequently than the average person, at least every hour (but I do also drink a ton of water).

I had my roughest flare yet in August while I was moving, and then it miraculously seemed barely there for a month or two, and now the past few weeks it's back, but not as bad as in August and some other episodes (I'm not waking up to pee, which in other flares was a 3 times a night sort of thing).

I know that IC, vulvodynia, and vaginismus often travel together, so this would make sense. I don't want to self diagnose, but I'll say conservatively in the absence of access to a doctor any time soon that my symptoms certainly line up with all those things strongly, such that following any at-home advice for them would be wise.

Do you all have any advice for managing these sorts of flare-ups? Does this extra detail change anything about what you'd advise in my situation? Is there something else I should do about this in addition to seeing that OBGYN in six months? Is urology something I should look into?

Thank you!!!!!

Hi sandpiper,

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!

Hi Caitlyn!!

Words cannot thank you enough for your incredibly thorough and thoughtful reply!!!! I write super long posts and always love it when other people do too, haha. Thank you so so much for all of your time and energy here. I really appreciate it.

That's a really good point that hopefully people see this thread and feel less alone. It's already racked up a surprising number of views for only being a month old, so I'm hoping that coming here is making some people feel less alone and that your advice is reaching many others lurking in the same boat.

That PNF thing is such a fun fact. It's so cool to know that's a real thing that I'm observing and to have fancy accurate words for it. That's really neat! I have let masturbation and orgasm as a practice fall to the wayside over the last two months due to a hellish (and to make the sexual dysfunction worse, religion-related, lol) freelance project consuming all my energy and then getting very sick. And I'd done the same with the previous flare due to having to be at my parents' for a few weeks and moving, which are all stressful enough as it is. So maybe those stresses and maybe also the lack of paying attention to working and releasing my pelvic floor is related to those respective flairs of "hyper-continence" immediately following.

I hear you about the American medical establishment really not serving people very well generally and especially in sexual health for people with vulvas. I am sympathetic to the fact that most professionals like OBGYNs, urologists, and general PTs simply were never trained in sexual health matters very much at all, or in how to examine certain parts of vulvar anatomy or look for certain things. From the patient's perspective, it just feels so exhausting to think about a whole world of professionals that know nothing about what you're going through and would probably write it off as not a real thing or say something that's really obviously wrong, you know? The amount one has to tiptoe around large swathes of the medical establishment and very carefully vet others just makes it feel so much like this stuff isn't a real thing and that I'm being a weird hypochondriac or something. Which I know isn't true but it's so easy to feel like you're wrong and these things actually aren't real and/or don't matter and you're making a big deal of nothing. (I was gaslit to an obscene degree growing up and have had some suboptimal being-listened-to experiences in medical settings and I'm sure those things don't help, haha.)

Thanks for easing my mind about cash-only pelvic floor work. It's reassuring and makes sense to know that that's common practice among specialists. I tried the Pelvic Rehab site recently after reading one of your articles and found two places near me: hot pink website lady, who is nearest, and then a second a little farther out. Ms. Hot Pink Website has a free phone consultation, so I think I will proceed with her and go from there. It did make me hopeful seeing her three offerings for appointments are a 1.5 hour intake, a 1 hour follow up, or a 30-minute follow up. That sounds like lots of time to get thorough work done and I'm hopeful I could squeeze (well, given the context, not squeeze... maybe ease into, haha!) the best bang for my buck out of an intake and then a couple follow ups instead of a dozen sessions. Getting a superbill is also a great idea that I'll be sure to ask about, thank you!

And thanks for the heads up about online services! I'll see how this one works out but might pursue those if it doesn't.

I've actually already read Come As You Are! I loved it and learned a lot. But I did read it about a year and a half ago and have learned and grown a lot since then. I was reading sections of your post out loud to my boyfriend and he said "I should read that book" so we might read it together, which would be really cool and make me feel super loved. I followed along with the exercises in my head when reading the first time but never fully sat down to take time and complete the workbook, so that could be a fun thing to do.

That pelvic pain neuroscience book sounds excellent and like something I should read right away! I've run into some interesting pelvic pain neuroscience stuff in my own researching these things lately, like how powerful things like placebo effect can be for vulvodynia even if people know it's a placebo. I also read a good article a little while ago about Pain Processing Therapy for chronic pain, and how effective in pain management it can be to drive home that this pain is not a danger to you, it is uncomfortable but cannot harm you, etc. That's something I've tried to be aware of through a variety of stuff lately, and I do think it helps a little.

I really appreciate your explanation of some of what intravaginal work can be good for, too. A lot of the online spaces for people with pelvic floor problems like subreddits for vaginismus and the like seem rife with passive-agressive husbands and absolutely miserable women just trying to force their way into making penetration work, and I've definitely gotten that sort of get-it-over-with advice before that really makes me bristle especially because it is so hard already not to lean into that tendency to push myself too hard because I have to serve others, you know? It's something I've been working really hard to pull back on, and then so much of the discourse about things like dilators and intravaginal work stops at "just get used to being stretched wide open, probably for sex purposes."

I've also come across a lot of stuff mentioning the pelvic floor and TMJ connection. So interesting. My TMJ has been royally screwed up and getting stuck open since I was a young teen, so that's definitely been going on a while. I really, really resonate with the idea of learning to be permanently tense everywhere from repeated trauma and now just not knowing how to relax anything.

Though the image didn't come through, I have seen a lot of pictures of both vocal cords and vulvas and have noted the extreme similarity. It's something that's a little terrifying to think about, honestly. Two years ago I was diagnosed with a rare disease that makes my airway grow shut with scar tissue (subglottic stenosis). I had a successful airway dilation surgery a year and a half ago and have been taking an inhaler that helps keep the chronic inflammation at bay (that was the medicine I had to fight tooth and claw with doctors to keep taking) and I'm noticing lately things like omega 3 supplements and following an anti-inflammatory diet help a lot too. But I've kind of got mystery chronic inflammation all over the place, including, if the redness and pain is any indicator, in the vaginal vestibule, as well as, obviously, my airway which seems like it's going to keep chronically wanting to be inflamed and grow shut.

So that is a little bit of a funny, and scary, connection, and one I've definitely made before, between my lifelong throat problems and pelvic pain and inflammation. There was probably a time when pictures of my vocal cords and vulva would have looked even more similar than most when I was breathing through a hole the size of a straw in a piece of scar tissue, lol. The disease is too rare for me to know of any correlations with pelvic issues (or know of much of anything, really) but it's such an interesting case study, isn't it?

Thank you again so, so very much for your novella and all of your insights and answers, Caitlyn. Your passion about this stuff is really reassuring and comforting and also infectious.

Honestly, working through all this stuff over the last couple years and becoming the friend in my circles who, comparatively speaking, knows all the pelvic health and sex ed stuff has really been making me think about ways I can give back and educate others someday. I love to teach and also feel really passionately about this stuff, though right now I'm still in a place where a lot of it is too personally sensitive and infuriating to enjoy talking about it every day (if my heart rate of like 100-120 while reading and writing these posts is any indicator, lol... although my heartrate seems perpetually to hang on the higher side of normal, which as a young, active, relatively healthy person who doesn't caffeinate or take any stimulants probably just speaks to the chronic physiological stress and activation level in my body all the time ahahaha. But I digress).

So thank you, thank you, thank you!! I hope you are well and having a great weekend.

Hey sandpiper,

I’m so happy to hear you find my reply helpful – thanks again for being patient! I think your plans for next steps are super smart, and I hope that consulting with a pelvic PT is a positive, empowering experience for you!

I totally know what you mean in regards to navigating the medical establishment – it can be exhausting and overwhelming indeed! Most folks don’t even know where to look for help, and then to arrive in the office of someone you think can help, only to learn that they know very little about your condition, can feel totally defeating.

My hope is that sites like Scarleteen can help people navigate the increasingly confusing world of healthcare with greater ease, so folks can end up exactly where they need to be sooner. So, thank you again for starting this thread – I hope it continues to be useful to you and to others in similar situations!

On that note, I wanted to include the links that didn’t come through the first time I posted my response over the weekend. You’ve clearly already encountered many of these, but I hope they’ll also help other folks dealing with similar concerns!

Citations (nerdy science stuff):
• Regional interdependence: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3649356/
• Connections between jaw and pelvic floor: https://feminapt.com/blog/the-jaw-bone- ... elvic-pain
• Overlap between other pain conditions and pelvic pain: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3475612/
• PNF definitions: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3588663/

Helpful Links:
• Image comparing vulvovaginal and throat anatomy (hopefully comes through below!): https://www.facebook.com/ArmoniaMama/ph ... 96/?type=3
• Herman & Wallace Pelvic Rehabilitation Institute: https://hermanwallace.com/
• Pelvic Rehab site: https://pelvicrehab.com/
• Origin pelvic rehab: https://www.theoriginway.com/
• Why Pelvic Pain Hurts book: https://www.goodreads.com/en/book/show/ ... ith-pelvic
• Intimate Rose pelvic wands: https://www.intimaterose.com/collections/pelvic-wands
• Guides to using pelvic wands: https://www.intimaterose.com/blogs/videos/wand-videos
• Come As You Are book: https://bookshop.org/p/books/come-as-yo ... wdEALw_wcB
• Come As You Are workbook: https://bookshop.org/p/books/the-come-a ... wlEALw_wcB

And here’s the image of the overlap between the throat and vulvovaginal anatomy for those who haven’t encountered it before:



Really interesting observations you made about your throat history: that certainly could play a role in what you’re dealing with! I saw your earlier post about IC-like patterns to your symptoms as well, and I wouldn’t be at all surprised if there is a component of that here too.

If you haven’t already heard of The Interstitial Cystitis Solution by Nicole and Jesse Cozean, it’s also worth checking out! Nicole is a pelvic PT and hugely respected in the field, and she offers a ton of really helpful education, tips, and practical strategies in the book. In particular, she offers no-nonsense strategies for managing pain/symptoms flare-ups, and advice on navigating the healthcare system as a person with persistent but “invisible” symptoms. Again, unfortunate that we have to do this in our medical system, but here we are…

Here's a link to the book: https://www.goodreads.com/en/book/show/ ... s-solution

And here’s a link to Dr. Cozean’s website, which is full of resources for people with IC (and other pelvic pain conditions): https://www.pelvicsanity.com/the-ic-solution

Love that you’ve already read Come As You Are – it’s one of my absolute favorites! And I agree: I followed a similar pattern to you (read the book on my Kindle and sort of thought about my responses to some of the exercises in the book). I’ve just recently gotten the workbook, though, and started working through it in honest (actually writing down my responses on paper, gasp!), and it’s been incredibly insightful. Revisiting the concepts and diving deeper into them is particularly powerful.

And finally, I respect 100% your point about all this being intense and sensitive to think about and discuss – that’s a totally normal reaction, especially when you’ve been through as much as you have already! So feel free to take all of my suggestions and links in stride: this thread will always be here, so if you need to step away to let your body and mind have a break, you can always come back later