“Do Fingers Count?” Vulvodynia, Medical Heteronormativity and Me

It’s 11:30 pm and my vagina hurts and I’m sobbing.

Picture the scene: Lying in bed, knees spread, towel wrapped like a diaper between my legs. My physical therapist said the towel could hold the dilator in; I’d never managed the trick, but I appreciate the veneer of modesty, even alone behind my closed door.

When I remember to do it regularly, using the dilator is annoying, inconvenient and a little bit gross. Now, I’m picking it back up after a few weeks of forgetting, and it hurts — a deep, sharp sting that’s all the more infuriating for how pointless it feels.

About a year ago, I was diagnosed with vulvodynia, chronic pain of the vulva. It’s one of those diagnoses that comes without any answers: doctors don’t know what causes it, and didn’t recognize it as a real disease until recently. (Isn’t it funny how often poorly understood, under-researched pain diseases primarily affect people with vaginas?)

The most common symptom is painful intercourse, and for some people it’s debilitating. But since I’ve never tried penetrative sex, my symptoms are barely noticeable: an expectation of pain at my annual gyno exam, a lifelong difficulty with tampons. If I hadn’t been seeking treatment for co-occurring pelvic pain, I might have never even noticed it.

Yet in the year since I’ve been diagnosed doctor after doctor has told me, with great conviction, that it’s a problem if I can’t and don’t have penetrative sex — which is how I’ve come to spend a couple nights a week with the world’s least sexy dildos. My doctors are convinced that, despite all my protests to the contrary, I may, someday, want to be able to be penetrated.

The implication — that I need to endure a painful, mortifying treatment regimen to make sure I’m ready if an interested phallus ever came along — makes me feel intensely ashamed in a way I’ve struggled to shake.

My physical therapist is a kind, older woman who likes to talk about movies while feeling around the muscles of my pelvic floor. When I asked her why I should bother with the dilators at all, she assured me it was worth it. Think how convenient to be able to use tampons, she enthused, and how pleasant to avoid excruciating pain with a speculum exam.

“I don’t think you need to go up to size large,” she said — the size that corresponded to a penis. It was more understanding than I’d gotten from any other doctor, but it seems like an extraordinary amount of effort and angst to avoid ten minutes of pain once a year. So I’m an inconsistent patient, doing it only occasionally, which, of course, makes it hurt more.

Intellectually, I get that the dilator helps relax the pelvic floor muscles around the vaginal opening, a genuinely useful function for managing chronic pelvic pain — though, weirdly, not one my doctors often discussed. They focus single-mindedly on sex, and it poisons the whole endeavor. What’s wrong with me, that I need to regularly stretch out my vagina? (That’s not what it’s doing, I remind you and also myself.) And who am I doing it for, since it doesn’t feel like it’s for me?

From the moment my mysterious chronic pelvic pain landed me in the ER, penetration and my ability to endure it was a theme. When the ER doctor sent me for a transvaginal ultrasound, I showed up braced for pain. Instead, the tech performed a regular, external ultrasound, then looked at the order again and asked: “Have you had sex?”

“Um.” It wasn’t a question I was ready for. “Yes, but I’m a lesbian, so…”

If I were a different person — bolder, or at least more blunt — I might have answered differently. “I’m pretty sure I don’t still have a hymen, if that’s what you mean.” Or, “Do fingers count?” But I’m awkward to my core, so I trailed off, leaving the tech looking somewhat alarmed.

“I just need to know if you’ve had intercourse. We can’t perform the test if you haven’t.”

Intercourse sounded heterosexual. “I haven’t,” I confirmed, and was released to put my clothes back on.

Later, I was annoyed — what if there had been an urgent problem, and I’d been denied the test I needed because fingers didn’t count? But at the time I was just relieved to have been spared another round of pain and embarrassment. I never got the ultrasound results.

After the ER visit, I was referred to a urogynecologist with a months-long wait. When I finally arrived at the appointment, it seemed like everything went wrong. The doctor ran an hour late, forcing a flurry of flustered Slack apologies to my boss. I was so anxious that when the nurse went to take my pulse, the machine thought I was having a heart attack. I sat for ages, taking deep breaths until they could get a less dire reading.

The doctor herself was brusque, asking a few cursory questions before putting me up in the stirrups. The room felt packed with people; one nurse smeared jelly on my pelvis for a bladder scan, while another stood by the computer, taking down the numbers the doctor called out as she conducted some sort of incomprehensible vagina-measuring.

“Does this hurt?” the doctor started asking, prodding a spot on my vulva. “How about this?”

There was a sharp prick of pain against the deeper burn of the speculum. I was still riding waves of panic, mortified, desperate to be done. I’d like to say I snapped, but it came out a watery whine: “Yes.”

“It shouldn’t. I’m just barely touching you with this.” The doctor held up the implement so I could see: A Q-tip.

“Do you have pain with sex?” she asked, showing real concern for the first time.

I didn’t, but I wasn’t quite sure what she would count as sex and was too embarrassed to broach the topic. I hedged. “Um, I’m not currently sexually active. And I’m a lesbian. So…”

Her brow furrowed. “But you could still do penetration.”

“I haven’t really, though.” I shrugged, silently praying she’d drop it.

“You might want to someday.” She was not dropping it.

“It doesn’t really interest me.”

She frowned and handed me a patient education pamphlet, a referral to physical therapy and a prescription for an expensive topical cream.

As a cis lesbian, I’m not the typical patient for this disease — and when my doctors don’t know what to do with me, I’ve had to figure some things out for myself. Vulvodynia is classified based on whether or not symptoms appear the first time a person has intercourse, meaning PIV, leaving me unsure where I fall. Treatment focuses on addressing pain with sex — a problem I don’t currently have.

When I appeared in my urogynecologist and physical therapist’s offices, yelping at a Q-tip, they made some assumptions about the direction my treatment should take. And their assumptions made me feel terrible. All the doctors agreed about what kind of sex I should want to have, and how much pain and inconvenience I should be willing to endure to have it. Their certainty made me feel that must be the one who was wrong about my own body and desire. As a queer person, that’s not an unfamiliar message: it’s just a phase, it’s a sin, it’s not real sex.

After about a year of appointments, angst, and sitting around with a dilator in, this is where I’ve landed: My treatment goals are “get through my annual gyno exam without crying.” At check-ups, my doctor has toned down the questions about my what kind of sex I’m having to a brief, “Still not sexually active?” — embarrassing, but an improvement. I graduated physical therapy with orders to keep using the dilator “two or three times a week,” a frequency I do not meet but vaguely aspire to. I dread the day I have to explain this routine to a new girlfriend, but that’s a bridge I’ll cross when I get there.

Because I’m not wrong about my own body. I decide what discomfort I tolerate, what symptoms I care about and what kind of sex I have, heteronormative bullshit be damned.

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51 Comments

  1. Ugh, I have so many gyno stories similar to these, and every queer woman I’ve met has one, too. Next time I have to get a pap smear, I’m going to bring my own educational pamphlets about queer sex. 🙂

  2. Waaaaah. The INTENSE empathy I feel reading this is almost painful. I cannot begin to tell the tales I have in relation to my vagina and visiting healthcare professionals.

    All I can say is that you are valid. We are all valid. We’re IMPORTANT.

    Oh god I have so many feels I can’t even with words at this.

    But thank you for formulating for me the words to encapsulate the shame, the frustration and the doubt I have carried and continue to carry in these situations.

    I hope to see more of this. Please continue to express yourself!

  3. hey anon, whoever you are, I can’t thank you enough for this piece!

    a couple week’s back I had a meltdown about this part of myself (I diagnosed myself with it as vaginismus because that episode from lady dynamite was the closest thing to seeing myself reflected—actually seeing doctors about this throws me into such a heteronormative orbit that we should not have to endure and I tend to just not endure it altogether)

    but your experience echoes in my heart more profoundly–the pain expected with pelvic exams–the excruciating pain from what doctors+others deem as unwarranted–the pressure of “needing” to be penetrated and working to be penetrated to please doctors/others. I just started voicing this to others in an effort to be more honest about all realms of life, but I haven’t shaken this feeling of being the sole queer who deals with this. your words today make me feel less alone in such a powerful way. moving through this monday muck knowing someone else understands this pain and the bullshit that comes with it–that is a saving force!

    …and if you would like to write about how to explain this to a partner I am INTERESTED by the way because I believe that is a block for me and I need to hear from more queer beings on this

    • Hi there, I’m a straight cis person who got directed to this article from my sister, who reads this site and comments regularly. Please feel free to tell me to fuck off, as I said further downthread.

      My boyfriend has been my first and only sexual partner. We were sexually active for two years before my gyno mentioned that she thought I might have some form of pelvic pain and directed me to a specialist. But for those two years I lied to my poor, sweet boyfriend. I told him I wasn’t interested as a side effect of my antidepressant, but really, I did everything to avoid the pain. We still had sex, just not PIV, and not regularly.

      When I learned that pelvic pain was a possibility, I told my boyfriend that PIV sex hurt, that I was going to go to a specialist, and that I wanted to work around the pain. He was upset to learn that he had been hurting me and would constantly check in with me during sex to make sure I’m okay (and still does, of course.) We started by having him stimulate the parts of my vulva that didn’t hurt (in my case, near my clitoris), slowly going in circles until he hit the bottom, where I experienced the most pain. After a few minutes, the pain was overridden by the sensation from stimulating the clitoris and we were able to have pain-free penetrative sex. When I went to a specialist, he was surprised that we had figured that out on our own. (It seems obvious to me, but okay. I should also note that I have pelvic floor dysfunction, which is more or less treatable through therapy, not vulvodynia or vaginisimus.)

      I guess that, as in all things to do with relationships, be honest. I’m not sure how to approach that with a partner you don’t know as well as I do my boyfriend, but presumably if someone cares enough about you, they’ll be happy to explore your bodies in other ways.

      • hey, thank you tremendously for this! It is always a helpful reminder that honesty is a key tool when it comes to relationships. For me, right now, I am approaching things casually but feel like vaginismus (and the fact that I am a person of size, so my fatness plays a role as well) act as barriers that prevent me from having sex (even though logically I know this is wildly untrue).

        remembering the value of honesty–remembering that I am worthy of sex and that sexual pleasure can come from many other sources–is a valuable reflection. thank you, thank you, thank you for being an outside voice in this–I did need to hear it!

        • You are beautiful and of course you deserve sex! If communication isn’t totally possible (maybe if you don’t know your partner that well?), I would suggest just focusing on whatever doesn’t hurt, hopefully that sensation can override any pain. Again, I want to add that I have pelvic floor dysfunction, where my pelvic muscles are constantly clenched, not vulvodynia or vaginisimus, so I can’t comment if that method will help you. Best of luck in your relationships!

  4. All the times I broached the topic of this pain and was met with blank stares and zero help, even at LGBTQ+ supportive clinics. I noticed a little while ago that I was finally getting search results in medical databases. I’m glad it’s now a “thing”, although the treatment is barbaric. And how you are being treated is a reminder that gynecology has just not moved forward. Why is that I wonder.

  5. Thank you for writing this. I do have sex with men, and therefore was interested in using the *ahem* larger size of dialator during my treatment plan, but so much of this piece reflects so so much of my own struggle with doctors during my treatment for vulvodynia/microperforate hymen a few years ago. The abyss of ignorance, even among doctors, about these conditions is so discouraging! I’m lucky enough that my treatment is mostly in the past, but it definitely left me with a lot of lingering insecurity and hangups.

    Thank you so much for this piece, and I wish you the very very best moving forward with everything!

  6. Thank you for writing this.

    Your experiences of pelvic pain treatment are different than mine, with different assumptions. The first assumptions were that I was being overdramatic, that exams and TV ultrasounds aren’t THAT painful and also, I had a ridiculous amount of morphine in my bloodstream so NOTHING should be painful anyway. (No, it hurt. It really, really hurt. The only good thing about the morphine in my system means that I don’t really remember the sensation of that pain, I just intellectually know it did.) The second was that, oh no, it’s REALLY just dysphoria that makes anything to do with penetration unbearable, once I had that handy dandy “gender dysphoria” diagnosis necessary for top surgery on my list of diagnoses that every doctor, nurse, PA, and other medical professional looking at my file can see. It DID mean that the focus (once it became apparent that my mysterious abdominal pain had a pelvic origin and not a gastrointestinal one) was on pain relief and not on getting me to being able to be penetrated regardless of the fact that I am VERY MUCH ASEXUAL and VERY NOT INTERESTED IN ANY OF THAT. But since I don’t generally like referrals to therapy to get over my disinterest in sex, I don’t generally bring that up with medical professionals ever.

    My current pelvic pain specialist knows, mostly because she listened to the words coming out of my mouth and didn’t make those assumptions; and also that she was very knowledgable about trans stuff including the existence of nonbinary people so this wasn’t a medical office where I would have to do drag one way or another to be treated like a person at least some of the time.

    I just don’t know why it is so hard to get medical professionals to treat their patients like people. I wish I knew, if only so that we could find a way to change that.

    • OMG, YES!!!! I just recently did a Pelvic Ultrasound and the nurse was not careful at all! I told her beforehand to please, please be gentle because I was full of water and I was forbidden to use the bathroom and she just kept on pressing deeper and harder and harder. I told her again to please be gentle and she didn’t do that :/

      And it was really weird a couple of times. The first time, she told me to go back out and drink more water but she didn’t even open up the door for me. She just stood there (with another female nurse in the room, on the computer), looking at me. I actually gave an awkward laugh, said “Ok then….” and walked the fuck out. Then, during the procedure, she was quiet. Normally, I’m not too chatty but with procedures like this and a full bladder (complete with a fucking painting of A POND! LIKE WHAT THE FUCK, SERIOUSLY?!?), you really need conversation to distract you from thinking of water and peeing. The procedure itself was probably 20 minutes but it felt like an hour!

      I’m not going to talk about my very first Pap Smear exam because I’m still traumatized…..

    • I don’t have pelvic pain, but the pain assumptions you were met with mirror almost every single doctor’s appointment I’ve had as an adult woman.

      One of my favourite doctor’s quotes is “You shouldn’t have many nerve endings there!”, shouted at me when I started crying in pain as they ripped open a cut in my throat made with a scalpel AND ANAESTHESIA the day before.

      Or how about “No, the anaesthesia shouldn’t be wearing off yet” while drilling inside my skull. No, maybe they shouldn’t, on the average person, but I’m tapping your arm right now because I’m starting to feel things in places I shouldn’t feel things right now.

      But why would I know anything about what physical sensations I’m actually experiencing or their severity?

  7. This was an equally interesting and horrifying read. I don’t fault the doctors for giving you the options, but really the focus on sex in this case is baffling. If you say penetrative sex isn’t interesting, then it’s not. Some old school bullshit in this case. God, it irks me to no end when doctors not only assume heteronormative bullshit, but also forces this on to patients. I really hope you do you regardless of what your doctors say. All love to the author for writing this piece <3

  8. sometimes i think about what people will think when they look back at how useless and barbaric our current system of medicine was. it’s only slightly comforting. kudos to you for writing about this. chronic pain stuff is so underresearched. i have a friend who had chronic testicular pain (nearly every single doctor asked him if he was maybe just closeted gay and had manifested the pain, very helpful thanks) and he spent about a decade researching it himself and finding experimental treatment that actually worked. good luck finding out more information on your own!

  9. There is hope when it comes to cervical cancer screening. I think pap smears are going the way of the dodo because it is not a very sensitive test, hence the frequent testing required. Almost all cervical cancers are caused by HPV and in several countries only HPV testing is required because it is a lot more sensitive than pap smears. If the HPV test is negative, then you don’t need to get a pap test or other invasive testing and HPV testing are also needed far less frequently (only twice in a lifetime if negative according to some guidelines). Also, in some countries HPV self-sampling is available, so you don’t need to have invasive testing performed by health professionals. Look into this, talk to your healthcare professionals about this and request HPV self-sampling. That way we may just make it widely available and do away with the undignified, unspecific, frequent, and painful pap tests. But for those who still go for pap tests, almost no gynecological group still recommend yearly tests. Please look up guidelines so you don’t unnecessarily go for these tests. Exceptions are in high risk cases or with positive results when tests are conducted more frequently.

    • Hi! I’m a gynecologist and a lesbian! I have a lot to say in response to this…but first: Pap smears are really important and good! Cervical cancer is the number one gynecological cancer in developing nations that don’t have access to this life saving test. HPV testing is really important to, but there isn’t enough research (yet) to recommend just HPV testing alone. The cytologic portion (the pap smear itself) is still important. You absolutely don’t need a pap smear every year (unless you have a history of abnormal pap smears or some other special situation). The guidelines are frequently changing, but currently every three years until age 30, then it can be as little as every 5 years with HPV contesting. The last thing I want is more not straight people thinking they don’t need pap smears. There is a problem with doctors assuming if a woman isn’t straight, she doesn’t need a pap smear, and it makes me so frustrated. Pap smears are life saving! Please, everyone, get your pap smears (or your pap+HPV co-testing, if that’s the test that’s right for you based on your age and medical history)!

      As a lesbian and a gynecologist, I have made it one of my personal missions to educate obgyns in training on LGBTQ issues. I even gave a lecture on it last year and have plans to give another this year. It’s super important and I hate that the health care system fails us not straight people so much.

      Anon, I’m sorry you had such a bad experience. I hope you can find a doctor who can understand you better and communicate with you better.

      There are resources in various states with lists of LGBTQ friendly/educated providers. Try outcarehealth.org to search for a provider in your area!

      • I am a researcher and lesbian and there are several studies that found that HPV testing is more sensitive compared to pap smears. Australia is one country that is in the process of changing their cervical screenings and replacing pap tests with HPV tests. I know HPV testing is not available everywhere, but the more women that advocate for HPV testing instead of pap smears, the sooner I believe it will become widely available and women will be better off for it. Our healthcare systems should keep up with the best available evidence. If women can do HPV self-testing, then it will also save health care systems money and it will reach many women who refuse to go for pap smears (either because of access issues or because they find pap smears unacceptable). Pap smears actually does not fulfill two of the criteria for proper screening tests according the world health organisation, namely: there should be a suitable test or examination that has a high level of accuracy; and the test should be acceptable to the population. Many women do not go for pap smears because it is not acceptable and HPV self-sampling can change this. Also, not all pap tests are performed correctly and they are not very sensitive (I think only in the region of 58% whereas HPV tests’ sensitivity is in the region of 85%). Off course HPV tests does not change things if the patient tested positive because then women will have to go for other invasive procedures like colposcopies. As far as accuracy, the following are just two of the studies mentioned by the National Cancer Institute and I quote: “The new approval was based on long-term findings from the ATHENA trial, a clinical trial that included more than 47,000 women. The results showed that the HPV test used in the study performed better than the Pap test at identifying women at risk of developing severe cervical cell abnormalities. The greater assurance against future cervical cancer risk with HPV testing has also been demonstrated by a cohort study of more than a million women, which found that, after 3 years, women who tested negative on the HPV test had an extremely low risk of developing cervical cancer—about half the already low risk of women who tested negative on the Pap test.” There are several other studies out there that attest to the superiority of HPV testing compared to pap smears. I am not trying to say women should not get tested, but there are better tests available than pap tests and women everywhere should have access to these tests.

        • Absolutely- all this is true. But at this point, the standard of care in the US per ACOG guidelines are pap smear with reflex HPV testing based on abnormalities, or pap with contesting after age 30. While ACOG guidelines sometimes lag behind the most recent data, most physicians are not comfortable with recommending testing that strays from these guidelines. Certainly if there are patients who absolutely cannot tolerate a pelvic exam, this is a discussion she can have with her physician and that might be the best option for her. But I want to explain where physicians are coming from regarding pap smears. I am sure that during my practice we will see the shift in testing in the US from cytology to HPV testing first. But we’re not there yet (in the US). There is also value in looking at the cervix with a speculum- I know I have personally found precancerous lesions just visually in between a patient’s scheduled pap smears. I just really don’t want to spread the idea in the LGBT community that pap smears are worthless. I’ve seen too many women (and transgender men) skip screenings and not get diagnosed until their disease is advanced, and it’s heart breaking.

          • I completely agree with hannahmichellet’s comment earlier. We have a proven screening test for cervical cancer and some extremely effective treatments if caught early enough. Having seen patients in Australia, who missed/avoided screening and only presented to the emergency when they were symptomatic, it is heartbreaking to have to tell an otherwise well woman they have cancer.

            In Australia we are moving to five yearly cervical screening with HPV testing. In addition there is to be screening initiated if patients are symptomatic.

            Finally, in my personal experience medical education definitely lacks when it comes to learning about the sexual health concerns of patients outside of heterosexual and MSM (men who have sex with men). I am training to be a general practitioner (family medicine in the US) and I have had to actively seek out education on the specific health care needs of non-straight people. Thankfully we have some individuals like hannah here, who are advocating for the LGBTQ communities and making this education available.

    • Tbh I never know how to interpret screening guidelines, since they all seem to assume that adults who say they’ve never had sex must be lying. (Nope, really! Super ace here!) For now I’m going with my PCP’s recommendation that I don’t need pelvic exams as long as I’m not feeling any problems, and I’m frankly happy to avoid dealing with it. I’m trans, and asexual, and my first ever pelvic exam was pretty traumatic–I had appendicitis at the time; the doc decided to poke around for ovarian cysts. I’ve had a few since then when I really had to, and always felt deeply uncomfortable. Hopefully someday I can get a hysterectomy and put the whole worry to rest.

  10. Thank you so much for sharing this. I recognize some of these so well. Facing heteronormativity, being asked “you are not a VIRGIN are you?”, enduring pap smears with no one explaining why, or if, it is even necessary. I don’t have vulvodynia, as far as I know, but I find penetration painful and unpleasant and hence do not see any reason at all to be penetrated ever. Not even by tampons. I tried a few times when I was younger but gave up. I need to endure the few minutes of pain in yearly gynecological checks and that’s it. For me, it has been easy to choose a practically penetration-free life. I am lucky. I can only wish great strength to you people who struggle with this even more, some of you much much more.

    • I am no medical professional, but these do seem like symptoms of pelvic pain. If you are interested, I would recommend trying to find a specialist to get this checked out, since pelvic pain can lead to other medical issues (bladder reticence, nerve pain, etc.). I’m sorry the medical professionals in your life suck.

  11. I had to make an account just to comment on this! I’m bi, not a lesbian but other than that I had the same exact experience. This was back in 2001. I had vulvodynia and doctors refused to talk to me about anything other than having sex with a man or delivering a baby vaginally. I was so frustrated from trying to explain that I wasn’t sure if I even wanted to have sex with men or have children. That was the only thing on their agenda. They didn’t want to hear that I wanted to be pain free just for the sake of being pain free. Anyway I ended up having two surgeries and the issue is basically resolved, I recommend the surgical option.

  12. I’m a pelvic PT, and unfortunately it seems that this person’s PT didn’t fully explain the purpose of dilators. They’re not just for the goal of vaginal penetration. They’re tools to give physical feedback as you work on derecruitment of the pelvic floor muscles. There are all kinds of reasons we need the pelvic floor muscles to be able to effectively derecruit (relax). Overactive pelvic floor muscles can compress pelvic nerves and cause pain at rest, which it sounds like the author is experiencing. The pelvic floor is also important in bowel and bladder function, and overactive pelvic floor muscles can lead to constipation, urinary urgency and frequency, and urinary leakage.

    If dilators are something that makes a patient uncomfortable, there are also ways to work on pelvic floor derecruitment with your own fingers and/or exercise. I always start my patients with their own fingers, but most of them come back to me in a week or two wanting to switch to dilators because the angle is less awkward or their arms aren’t long enough. But to each their own, and if you communicate to your healthcare providers that something is making you uncomfortable or is not working for you, many will give you alternatives.

    Another thing to consider is that healthcare providers are usually not coming out to patients for the sake of professionalism. Your providers may be queer and understand better than you think. Just because they’re asking you questions about the types of sex you have doesn’t mean they don’t know how queer sex works. It just means everyone is different, and they don’t know what type of sexual activities you specifically like to engage in.

    • Regarding the latter point: I can definitely see where the writer is coming from with the heteronormative assumptions. I’m currently writing and researching a piece about PMDD for this site and I’ve gotten a ton of people who’ve been talking to me about how unnecessarily gendered and heterosexist their attempts for treatment have been. Being denied access to BC because “well you’re asexual” or “well you’re lesbian”, the messaging being about “women’s health”, the supposed end goal being sex with a cis man.

      I haven’t necessarily faced things quite as intensely as the others, but I have had to sorta weasel my wording to get gynes to understand my sexual history. For example, having to sort of misgender past partners because doctors don’t understand trans people or that pre and post operative trans people exist and they only understand in terms of “cis man or cis woman”. Like even “penises are involved sometimes” gets parsed as “ah therefore you have sex with men”.

    • Renee thank you, I came here to say exactly this but in a way less eloquent and comprehensive way! Treating tight pelvic floor muscles benefits your whole body. I wish OP’s practitioners focused on that instead of penetrative sex. But to anyone else with this issue please use yr dilators for the good of your whole musculoskeletal system and especially pelvic floor!

    • It makes sense that health care providers don’t want to be constantly coming out to their patients, but you don’t need to be queer to be more welcoming to your queer patients.

      Like, instead of asking “are you having sex,” a doctor could ask “are you having penetrative sex,” with follow-up questions that don’t assume all penetrative sex involves a penis attached to a cis man.

      I wish there were a way to figure out which health care providers took that little bit of extra effort. It seems like every third question I see in local queer mailing lists and Facebook groups is some variation on “I’m looking for a doctor who won’t treat my identity like it’s an aberration.” It sucks that we have to rely on these informal networks.

  13. I relate to this so hard. Being a trans man with chronic gynecological issues confuses and upsets everyone, including me. Doctors found it impossible to treat my years-long vaginal itch in part because I was always unable to answer the question “Do you have pain with intercourse?” Nope, because when I have intercourse I’m the one with the (silicone) penis! Getting an itch treated is tough at the best of times, because once they rule out STI’s, yeast infection, and BV, they lose interest: itchy isn’t a “real” problem. Still drives you nuts, though.

    • This makes me so sad. I hope you find a doctor who can treat you with the respect and care you deserve. I am hoping to start working part time at an interdisciplinary transgender clinic because of stories like this. I can’t imagine how frustrating this is for you. (Also- have you been evaluated for lichen sclerosus? Just throwing that out there in the chronic itch differential)

  14. This is awful. What a lot to go through to try and have non-painful gyno visits. I’m curious though about why they are annual in the US? I’m in Australia and it’s not normal to see a gyno annually here. Is it the Pap smear they’re doing annually? Just that or also some other pelvic examination? Here we don’t tend to have pelvic exams unless something is wrong. And we have Pap smears every two years – and the GP does them. No need to see gynos ever!! Unless something is wrong. Plus here they are trialling a system of having Pap smears every 5 years (I’m in a trial). It’s horrible that people are being made to think unpleasant gyno visits are essential and normal – when over here the situation is quite different.
    Plus more generally, the health system in Australia seems more patient-focused than in the US. It’s definitely not perfect here!! But particularly in women’s health it seems to be much more respectful of women’s ownership of their bodies

    • What I’ve read is that pap smears in the U.S. are recommended every 3 years starting at age 21 and then every 5 for ages 30 to 65. But they were recommended more frequently before 2012. And annual pelvic exams seem pretty common, but I don’t know what the current recommendations are.

      • You mean people are getting internal pelvic examinations every year?! Wow. I’ve only ever had them if I went to the doctor about something being wrong. Seems pretty invasive to tell people with vaginas they need to be examined every year! What on earth is the point? What do they think they’re going to find?! It’s so disturbing that people are having to go through this when they’re not standard elsewhere – so presumably not based in scientific evidence

  15. I feel this soooo SOOOO much. I have vaginismus, so like you, I’ve never been able to use tampons or have penetrative sex…and going to the gynecologist is actual living hell.
    So far, the gynos I’ve seen have told me without fail that something is “wrong with me” and have made some pretty rude and untrue speculations about the cause. (If they even know what vaginismus is at all)
    Even though I don’t care at all about penetrative sex, it took (and still takes) a lot to feel comfortable with my body.
    Thanks so soooo much for this piece. It reminds me I’m not alone.

  16. Anon, thank you so very much for posting this. I have struggled with my vulvodynia for almost 10 years now. I live in BC and have been trying to find a support group, but I haven’t yet found one (although I have found many other helpful resources for folks like us in this area). Would you be interested in helping me create an online vulvodynia group? Thanks again ever so much for sharing! <3

  17. I am another person who made an account specifically to say, HI, your story is my story. I’m a little amazed to see other people talking about it.

    As someone who is predominantly a top with specific physical boundaries, I probably wouldn’t have ever figured out I had vulvodynia if it wasn’t for a case of maybe-potential-breast-cancer. It turned out to be benign but it resulted in me also having my first “well woman” exam (which I did not manage to get through) and falling down the subsequent rabbit hole of issues. The whole experience really tapped into this lifelong fear that is probably common among queer people, which was the suspicion that there is SOMETHING BAD inside my body, lying in wait for me.

    I also didn’t know how to deal with the fact that I had this condition where the primary symptom listed is “pain during sex”, and I did not have pain during sex, ever, at all, because what the health industry recognizes as sex is not what I do. Or rather, the health industry somehow thinks that when I am fucking someone, they are having sex and I am not, because I am not on the receiving end of penetration? I move a lot and have had to deal with new gynecologists in different cities, with nurses saying, “You’re not sexually active, are you?” while I lay sobbing in pain on the exam table. It’s made further irritating by the fact that because I appear relatively femme and delicate, people feel comfortable making incorrect assumptions about my sexual practices or what they perceive to be a lack thereof.

    On a day to day basis I don’t feel like there’s anything wrong with me and I don’t feel like this is an issue I need to address. But I also know that cervical cancer is a real thing that happens to people and pelvic exams are necessary for that reason, so I can’t avoid it forever.

  18. I first started having severe vulvodynia symptoms 12 years ago, when it took 3 years and a trip to a specialist at a research hospital to even get a diagnosis. At that point, I was told that the only halfway viable option for a case as severe as mine was surgery — I wasn’t just having pain with sex or tampons, but would have random bouts that lasted for days where the pain would come in waves so bad that I would pass out.

    I almost didn’t comment, because there is so much ‘but have you tried…” on the internet, but I thought it was important to emphasize that dilators represent a very small spectrum of treatment options for vulvodynia. There are a variety of emotionally and physically benign treatments (diet changes, estrogen creams, lidocaine creams, hormonal changes like discontinuing birth control) that are effective for a lot of people. I never did end up getting surgery — it wasn’t guaranteed that it would solve the problem, but it was guaranteed that I would lose feeling in that area (plus, it seemed less critical given that I was very very gay— I could live through a few days of terrible pain a month). Fortunately, it turns out that surgery wasn’t really my ‘best’ option (and dilators, which sound horrible, weren’t even really presented as an option for me). It took me many years to figure out, but dietary changes, estrogen treatments, and the occasional lidocaine cream for dire situations have my vulvodynia pretty under control. I do sometimes still have crippling flare-ups, but they are few and far between.

    Bonus pro tip: get a bidet! Even if you’re not dealing with idiopathic, constant pain, things down there get so much less angry if irritants are washed away more often than you shower.

  19. Yet another person who signed up specifically to comment here. This was hard for me to read- I had to stop a few times along the way to breathe, and it had me on the verge of tears- but thank you so much for sharing this. In a situation where you’re so frequently made to feel invalidated and alone, it’s comforting to know that there are other people with similar conditions, experiences and emotions out there. I’m so sorry for what you have been through, but I am so glad that you wrote this.

  20. I have always found tampons so uncomfortable to insert that I would not use them, and have never been able to take much more than one finger before starting to experience discomfort. I put off getting my first pap smear until 31 (partly) because of being concerned about the pain. I started having (penetrative) sex with a guy last year (I’m bi) and found it impossible due to the pain. This year I started off seeing a sex therapist (mainly because I felt so uncomfortable talking about it, but felt a little more comfortable talking to a sex therapist) who was really good, and referred my to a really good pelvic physiotherapist. The physiotherapist said I had hypertensive pelvic floor muscles and I had to work on being able to withstand a certain amount of pain while she would push on the pressure points and I’d have to breathe and try to let myself relax in order to get the muscles to relax and stretch. My physio was really good, she also talked about the brain-body connection and bio-feedback and how your mind and your muscles need to relearn patterns. I had to use the dreaded dilators as well, which I didn’t do as often as I was supposed to but kept up for a bit. Due to still having regular penetrative sex with a penis, at the end of my treatment, she said I don’t have to use the dilators anymore but to start them again if I stop having that sex. I kinda think I wouldn’t bother with the dilators if this relationship ends, cos I don’t know that I’m ever gonna be using my vagina for that kind of sex again. I do want to be able to keep the ability to relax my muscles for pap smears though.
    I’m pretty lucky that my pathway for this was through a pretty cool sex therapist and physio, I know in general my experiences with other health care professionals have not been as good. I do still have an issue that I lack contractility of my pelvic floor muscles, but my physio said that I just need to come back if it causes me problems like incontinence (which it doesn’t at the moment thank god!) or if I just want to work on it.
    The topic of vaginal pain is so taboo and difficult to talk about, then combining that with queer experiences with the medical profession – argh! Sooo glad to see this experience written about and reflected.

  21. I really hope this is not overstepping (and I know this is not really the point of the article) but have you heard of tension myositis syndrome? I have struggled for a long time with various chronic pain issues (including, briefly, vulvodynia) when I came across the term – there is a lot more to it but the premise of it is that some chronic pain syndromes are caused by processes in the brain often caused by emotional issues (this is NOT to say that the pain isn’t real, just that the process is not one taking place in the painful area itself). I was very sceptical and resistant when I first heard of it, but eventually I employed the techniques suggested and have recovered from so much of my previously disabling pain (I was unable to work or do, frankly, almost anything, for a year). When you look into it it makes a lot more sense than it does from my brief description here.

    A couple of months ago I started experiencing severe pain in the vulva/clitoris, it was absolutely unbearable 24/7. My doctor seemed baffled and, looking online, I read about vulvodynia, and came across lots of people on a TMS forum saying they had suffered from it and had overcome it using techniques to overcome TMS. I also came across a blog by a woman who had suffered from vulvodynia for years, and after many treatments that didn’t work, she started employing TMS techniques and eventually recovered from it. Her blog explains step by step what she did so that other people can try it as well. I put this into action when I was having the same pain, and it went within two weeks.

    Again, I’m really sorry if this is overstepping, I just didn’t want to not say anything in case this could potentially help you, because I know how awful that pain can be and can only imagine how emotionally tiring it is to deal with doctors on this issue.

    (This is the blog: https://abigailsteidley.com/ If you click ‘blog’ and go back to the start of posts, you’ll find the right info.)

  22. [warning for sexual coercion] I’m so sad to see how many of us can relate to this piece. I basically stopped dating cis men five years ago because they, to a man, constantly pressured me into having penetrative sex, which, for me, feels like I’m literally being split open. I’m now lesbian-identified and married to a woman, but sometimes I wonder whether I’m “really” lesbian or if the pain was just enough of a deterrent.

  23. I’m a little late to the comments party but here’s another account that’s been set up just to respond to this post 🙂

    This is a bit of a long comment, just to warn you all…

    Firstly, I can’t say a sincere or big enough THANK YOU to the writer of this piece! You straightforwardness and honesty have given a lot of comfort to me and many others.
    As most readers would attest, as we all go through life with it’s various trials and challenges, often the heaviest burden, and the thing that causes most fear, is the sense of feeling alone, of lacking information, of being ‘the only one’. Add to that being non-straight in a still relatively heteronormative world and all these feelings intensify. This article has reminded me what a great resource the internet can be in finding solidarity and visibility when it’s lacking in the outside world!

    On that note, my comment serves a selfish purpose….

    I had a smear test two days ago. It was a follow up – last year I had a colposcopy. In fact last year I had so much poking and prodding that my rather under-used vagina didn’t know what had hit it!
    While the lay of the land down there doesn’t make penetration of any kind the easiest I luckily have never had to endure the levels of pain and discomfort faced by the writer and the various other commentators.

    The reason I mention this is because the cause of all these invasive procedures is the fact that I have HPV. Now somewhere along the line has come the preconception that HPV and the possibility of cervical cancer are threats that don’t effect lesbians, so, as such, I’ve been really struggling to find information relative to me. As a gay woman I don’t know how to go forward with this knowledge. Aside from the personal fear and insecurity I don’t know what it means for sex in the future. Do I mention it?…I know it’s irrational, but I feel like a cancer bomb, and any woman who comes near me in the future is in danger.

    So, I apologise because I know I’ve completely hijacked the comments with a different subject altogether, but this article has been enlightening and I suppose I’m gently asking if Autostraddle would consider a similar post shining a light on HPV for all the non-straight folk out there to share their experiences 🙂

  24. I had a similar experience with a Dr. that ended with me in the hospital. Moral of the story (for me) was to trust myself and NEVER see a Doctor that I’m uncomfortable with.

    Longer explanation below, if folk want to read.

    —–

    Lady Dr. refused to carry out a BC insertion procedure because I hadn’t had penetrative sex.

    I told her she was demeaning my bodily autonomy and being and discriminatory towards queer women, myself included.

    The procedure took an hour, to the point where my uterus started contracting. So much pain.

    A week later Dr. calls me, asks that I get to a hospital ASAP. Sonogram confirms the BC is placed in an absurd location, offers no fertility protection, and could be harming my uterus.

    I take it out. I find a rad Finnish Dr. who doesn’t blink an eyelash when I say I’m queer. She completes the entire procedure in less than 10 minutes, no pain.

    You know that feeling when think you should do something, but you don’t…. so then the shitty scenario you predicted would happen ACTUALLY HAPPENS?

    That was me with this Dr. I knew she was sus’ from the get-go, but I just rolled with it because I needed birth control & was desperate.

    Not doing that ever again, no matter how desperate I am.

  25. Hi there, my sister sent me this article because I also have pelvic pain. I’m a cis, straight woman, so please feel free to tell me to fuck off.

    First, thank you for posting this article. I think so many people do not know about, or are embarrassed by, their pelvic pain and do not seek treatment. For people with vaginas, our pain is so often belittled. I was told by one gynecologist that I always had such excruciating pain during my exams because I was a redhead and redheads are more sensitive. I switched to a younger, lady gyno who recognized that my pain was not normal and sent me to a (male, why are they always male) specialist, warning me that he was a bro but “he knows his shit.” I also had the Q-tip swab, it was horrifying, then he did something with his hand and asked, “Does this hurt?” I said no and looked down to find he was touching me with the same Q-tip.

    I was motivated to get treatment because I was tired of a) living with pain whenever I went to the gyno and b) virtually having no sex or sexual desire with my boyfriend, which I just chalked up to my antidepressants but secretly knew it was because of the pain. When I got my diagnosis, I wanted to cry because it was a huge burden lifted from my shoulders. After some physical therapy and I had the first truly pain free penetrative sex of my life, I did cry. But pain free penetrative sex is extremely rare for me.

    In my experience, the physical therapist is always more understanding than the specialist. I’m glad you’ve found a personal goal to work toward in your healing, but of course you never should have had to do that in the first place. I was lucky: my PT never talked about sex, she always encouraged me to do my exercises to help build my core strength, which promotes lifelong health, and retaining healthy muscle function in my pelvis. I wonder, if you think about the dialators not as the most painful and uninteresting penetration ever, but as a way to stretch your muscles to prevent painful lactic acid buildup, would that help in your healing? Would it help you to focus on strength instead of heteronormative penetration that you most likely will never have? If you feel comfortable, you might want to bring up your annoyance and anger with your PT; after all, you see her at least once a week, if not more, unlike your doctors, she should be aware of your needs.

    Again, thank you for shedding light on an issue that isn’t talked about enough. (I should add that people with penises also get pelvic pain. My PT, a young woman in her 30s, had an older cis male patient who just *loved* his sessions if you know what I mean. Ugh. The shit we all have to deal with from cis her men, right?) I am sorry that your medical team has not been at all understanding of your sexuality and your needs. I will send this article to my PT and I hope others spread it far and wide to their gynecological specialists. You should not feel so alone in your healing journey. I hope the comments in this article help you feel like have a community of supporters. Best of luck as you work towards strength, power, and ownership of your vaginal health.

    PS My boyfriend and I very rarely have penetrative sex, even if I stretch before hand. So all those people expecting you to have PIV can shove it.

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