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Sunday, December 17, 2023

That happened to me too

Cover page for the "Ace in the UK Report." Image source.

[content note: medical trauma, vaginismus, explicit descriptions of gynecological exams]

The Ace in the UK Report was published recently, about problems that asexual/ ace-spectrum people commonly face. The whole thing is worth reading- it covers a bunch of topics- negative experiences with coming out, discrimination at work, discrimination in healthcare settings, etc. In particular, pages 24-25 are about how it's difficult for aces to access IVF- I had seen that mentioned in lists of examples of legal discrimination against asexuals, but I didn't know any details about it, so I'm glad to see this report talking about it. And page 26, "Smear tests"- that's what I was to talk about here.

"Smear tests"- or, typically I've heard the term "pap smear"- maybe "smear test" is the British term for it, and "pap smear" is what Americans call it. This is a test where the doctor has to stick a tool into the patient's vagina, get a sample of cells from the cervix, and then the sample will be tested for cervical cancer.

Many participants cited confusion and discomfort in regard to smear tests or cervical screenings. There are unclear guidelines surrounding who requires these tests, as well as a lack of support for asexual patients and those who are not sexually active or have not had penetrative sex. While cervical cancer is more common in those over the age of 25, there might also be an assumption that those over that age are sexually active and thus more likely to contract the HPV virus. 

This issue is more likely to impact asexual women and other people with vaginas, and negative experiences – as well as a lack of clarity – in this area could lead to asexual people missing necessary medical checks. 

One ace respondent said that a smear test caused her to experience “excruciating pain” that left her in tears, as she hadn’t had sex before. Beforehand, she had received a leaflet that said that the experience might be “uncomfortable.” She had told her doctors previously that she wasn’t sexually active but felt that she wasn’t believed. She was still made to take pregnancy tests, and one doctor once said, 

“You’re a twenty-five-year-old woman of course you’re sexually active.” 

As she has used birth control since she was 13 years old, she says that “every doctor” assumes it’s because she’s been having sex from a young age. When she experienced pain during her smear test, the practitioner was at a loss of what to do and “didn’t have time for it.” She felt that they were being judgemental, even after she explained why it was painful, and it made her not want to have a smear test again. 

Another respondent was told that if you’re not sexually active, then you don’t need a smear test, but she was made to have one when visiting a hospital for another issue. She says that they made a point of needing “virgin equipment” for her and that she felt judged by a nurse after admitting that she hadn’t had a smear test before because she hadn’t had sex before. Afterwards, her gynaecologist referred to her not having had sex before as her “complex history.” 

At the age of fifty-five, one participant said that she was unsure whether she was supposed to have smear tests because of her asexuality. She has asked doctors and said that even if they don’t know whether it’s needed but she often feels “pressurised” into having one. “It’s a terrible situation to be in.”

She has said that doctors “don’t know how to deal with asexuals […] We might not be getting the support that we should be getting or having the test that we should have, or they should know for sure that we don’t need to have them.”

One participant was hesitant to get a smear test because they hadn’t had sex before. Their nurse was “really concerned that I’d never had sex before,” and reportedly said“Why have you never had sex before? That’s not right,” and referred them to a psychosexual therapist. 

I ... yeah.

Yeah, that's what it's like. Especially the "excruciating pain" part.

I've blogged about how I used to have vaginismus, and how most of my experiences with gynecologists have been bad. (The "Ace in the UK Report" doesn't mention the word "vaginismus"; I kind of wish they did, because that's the keyword you need in order to find more information about what's actually going on with your body.) Vaginismus is a health condition where the vagina muscles involuntarily close it up, so that penetration is extremely painful, difficult, or even impossible. 

For me, vaginismus was connected to my asexuality, but I had never seen this talked about in terms of "this is a problem that AFAB aces may commonly have." (Oh and on top of that, at first I didn't want to blog about vaginismus because I thought it would "invalidate" my asexuality. A lot of "ace 101" resources say things like "Asexuality only means not experiencing sexual attraction- it doesn't mean there's anything physically wrong with your body. Aces can physically experience arousal and all that stuff the same as anyone else- their bodies work the same as everyone else!" And here I was with a medical problem that seemed to be connected to, or caused by, or causing, my asexuality.) I've blogged about my own experiences, and I've seen a few other aces blogging about having similar bad experiences with gynecologists, and I've had aces leave comments on my blog saying "I have vaginismus too." I have suspected there is a connection, and I have suspected that vaginismus is more common among aces than in the general population, but I can't make claims like that with such big generalizations, because I don't know, I only know my own experience. This "Ace in the UK Report" is the first time I've seen this discussed as being connected to asexuality in a generalized way.

(I mean, the "Ace in the UK Report" section about this is just anecdotes rather than overall statistics, so this still doesn't show evidence that having bad times with gynecologists is *more common* for aces. But it makes sense- aces are likely to have little or no experience with vaginal penetration, and gynecologists are approaching pap smears with the assumption that vaginal penetration is totally normal and no big deal to the patient.)

When I read this, in the report, I felt sad, for 2 reasons:

  1. This was a really bad thing that happened to me, and I don't want anyone else to experience it because it was bad.
  2. If it's really true that this is a more common problem for aces, then we can imagine an alternate universe where this information is more widely known, and I could have known that I was at risk for having painful pap smears/ pelvic exams, and I could have protected myself better.

Yeah... it wasn't just that "a bad thing happened", but that I had no framework to even understand what had happened. Because of purity culture, I thought "I've never had sex [or, later, 'I've only had sex with 1 person'] and therefore there can't possibly be anything wrong with my body. Everyone starts out inexperienced and this is the best-case scenario, their body is pure and perfect, and then having sex with lots of people is what causes problems." And I thought that even though there's no reason *I* would need to know anything about my own genitals (because I'm a "good girl"), the doctor would surely understand all of that, they would know how pelvic exams are supposed to go, because they're a doctor.

Approaching it with those assumptions, I couldn't imagine there was anything wrong with me, or anything wrong with what the doctors were doing, and therefore my conclusion was that pelvic exams and pap smears are just supposed to hurt like hell. That's the way it is.

(I know I've mentioned this on my blog before- one day I happened to be reading Planned Parenthood's web page about pelvic exams, and it said it's not supposed to hurt, and I was just COMPLETELY SHOCKED. That was trauma- finding this out after I had suffered through it multiple times, and thought it was normal, and it turns out it's not, and I deserved better.)

But even though I didn't have a framework to actually understand what was happening back then, part of me still knew that it was right for me to respond by taking steps to protect myself, rather than just naively wandering into a doctor's office and letting them do whatever they wanted. I started to set boundaries. First, I decided that if a doctor hurt me or did not respect my consent (though I wasn't able to put it into those words), then I wouldn't go to see that same doctor ever again. Later, I decided to always bring my husband with me. And so on, gradually building up a methodology where I prioritize my ability to give informed consent- and revoke consent if necessary.

It wasn't until after I gave birth vaginally and then discovered that sex wasn't difficult any more, that I was able to see the whole picture. That's how I figured out that I used to have vaginismus- I was only able to figure it out once I no longer had it, because the difference was so huge, it made it so obvious that something had been very wrong before. Suddenly, my experience of sex started to be similar to the ways I had heard people talking about sex... they talk about vaginal sex like it's something that women desire, something that feels good for women, and I had always been so completely boggled by that. I had always wondered, "why doesn't anyone talk about how you need to very very carefully insert the penis at a very exact specific angle because if you get it wrong, it will hurt so bad you have to just give up on sex and try again a different day?" and other things along those lines. I guess for most people who have a vagina, that hasn't happened to them. The things that defined my entire experience of what sex was- apparently for most people, those things just do not happen.

(I say "see the whole picture" but actually there are still some parts where I'm missing information. I really would like to know how patients normally respond to pelvic exams, and what the doctor is expecting to happen. [And why they always act so completely confused when I initiate a conversation about consent before allowing them to do anything. I don't actually use the word "consent" because that would come across too confrontational; I say stuff along the lines of "if it hurts, will you stop?" and they act like they never in a million years expected anything like that to happen. WHICH COMPLETELY PROVES HOW NECESSARY IT IS TO HAVE THAT CONVERSATION.] I want to know what is taught in gynecologist school about consent, pain, and vaginismus.)

Anyway, here's what I want to say. My advice. What you need to know before your first gynecologist visit. If you have no experience with vaginal penetration, then maybe it will all be fine, or maybe it will be painful. Since you have no experience, you don't have the information to know which way it will go. Definitely do some investigating on your own, so you can find that out. [Explicit description follows] Put lube on your fingers and try to put 2 fingers in your vagina. (If you don't know what lube is- it's also called "personal lubricant" and it's in the same section of the grocery store where condoms are. Probably called the "family planning" section or something like that, near the pharmacy. Here's a link to one such product. Oh and also, if you end up using A LOT of lube, then you should wipe it off when you're done and also go to the bathroom and pee, so you won't get a urinary tract infection.) If you're able to do it without an issue, then probably the doctor's appointment will be fine. If you can't do it at all, you're going to have problems with the doctor. If you can do it after spending a lot of time very very carefully trying it- well, this is okay, at least you know it's possible, but this is still going to be an issue at the doctor's because the doctor isn't going to be that careful, they just charge in as if vaginal penetration is no problem for you at all. So you will have to have a serious talk with the doctor first, and not let them do that. Make them do it in a careful way.

I wish I didn't have to write this kind of explicit stuff on the internet- but if I don't tell people this, then who will? And I feel like maybe I'm being too negative about doctors- hey, maybe your experience will be totally different from mine, maybe you'll have a doctor who prioritizes consent and knows vaginismus is a real thing. But... yeah I hope it doesn't come to this, but my advice is to be prepared to have to protect yourself. Even to the point of leaving without doing the exam at all, if the doctor doesn't take these concerns seriously.

And maybe someone is reading this and saying "I'm just a sweet innocent girl, and here's Perfect Number telling me to *gasp* put my fingers in my vagina, that's so rebellious, so sinful, there's no way I could do that." First of all, it's not rebellious or sinful- it's your own body, why would you not be allowed to do that? And second, okay, if you don't want to, then you don't have to do it- I very much understand that. If you don't want to, then there's no reason you would ever *need* to put something in your vagina. But here's the important bit: If you've never done it to yourself, definitely don't let someone else do it to you. If you're not willing to put fingers in your vagina (you can wear disposable gloves if that makes you feel better) then that's fine- but cancel your gynecologist appointment too. Don't go in there not knowing if vaginal penetration is painful for you or not. Don't do that.

Okay let's run through a couple other misconceptions that someone (me) might have. Maybe you're like "well of course there's no reason that *I* would have to know anything about my own genitals, because I am pure, I am a good girl, and of course the doctor is an expert in this so they will totally understand what's up with my body." No, this is not how it works. The doctor is an expert in vaginas *in general* but if your situation is very different from the average person, the doctor might not handle it right at all. And, by the way, not having any experience with vaginal penetration IS VERY DIFFERENT FROM THE AVERAGE PERSON.

And... I was "pure"... I thought "so what if my experience is different from the average person? It's because I'm morally superior. We're not SUPPOSED to have sex before marriage." And that meant it was impossible for me to consider the idea that being "pure" could be a problem.

Continuing on with the misconceptions that someone (me) might have: Maybe you're like "well, when my partner and I attempt to have penis-in-vagina sex, it's really confusing and difficult and I feel like there must be something I'm not understanding about it- but of course for the doctor it won't be like that, of course the doctor will totally understand how to put something in the vagina in a way that's not painful." You're like "well it's just because I didn't have good sex ed, I am having trouble figuring out how to have sex, but the doctor went to school for this so it will be fine." You're like "I don't even let me partner put his penis in, *I* put it in, because my partner doesn't know how to do it in a way that's not painful, but for the doctor that won't be an issue, surely the doctor will know how it works." Uh, no, this is all completely backwards. If you have a partner, and you're in a long-term sexual relationship with them, and they've taken the time to really care about you and understand you, AND they can't even figure out how vaginal penetration can work for you in a non-painful way, then a doctor (who is a stranger to you and who assumes this is not an issue at all) DEFINITELY will not be able to do it either- and they'll do a much worse job than your partner.

(Or, in other words, earlier in this post I said if you have no experience with vaginal penetration, then you don't know if it's painful for you or not- well if you DO have experience with vaginal penetration, and your experience is that it's always painful, well yeah then you can be certain you will have problems with gynecologists. Sorry I have to tell you that, but that's the truth.)

Wish I didn't have to write about this on the internet!

Anyway. I don't know if I'm really capable of giving good advice about this, because I only know my own experience. I have no idea if other girls and/or people with vaginas will face these same problems and traumas... I have no idea if my advice applies to other people besides me. But I just... I can't not talk about this, because these are the things *I* needed to know back then, and there was no one to tell me.

For me, this is related to my asexuality. And the "Ace in the UK Report" suggests that it could be a common issue for other aces too. That's... that makes me feel bad, because I don't want anyone else to experience the trauma that I did. So... so that's why I have to talk about it. Even if you have vaginismus, that shouldn't mean that doctors need to physically hurt you. Know your body and protect yourself.

---

Related:

On Gynecologists and Angry Turtles

Sea Monsters on Land, and My Life With Vaginismus

Vaginismus Is Not A Problem, In And Of Itself

Separating Vaginismus From Asexuality 

How Pregnancy and Childbirth Changed My Asexuality (or, actually, A Post About Vaginismus) 

And a post from blogger thethreepennyguignol: TMI: Vaginismus, Me, and Why We Need to Talk Abut Female Sexual Dysfunction

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