Surprise, surprise! Did you know I actually use English more than Finnish in my daily life? So it’s about time I actually write something in my second language. Since I’m breaking down the language barrier, I assume there’s gonna be a bunch of new readers wondering tf is this blog about? Hello, hi, welcome to Korento ry’s patients’ association’s blog where we share what life looks like with long term gynecological conditions. Now, chill, I know you hear the word “gyno” and want to run away, but how about you stick around and read? You might learn something! Today I’m gonna share the most common questions I get about my illness, vulvodynia. So sit back, relax and get ready for take off. Oh, and trigger warning for talking about ending one’s life.
Vul-vo-dy-ni-a, vulvodynia, and yes, it has to do with my vulva aka my pussy, pusswatcha, pusspuss, the gate to another dimension, my flower, my oyster, my cooter, whatever you wanna call it. Vulvodynia comes in a few types, but what’s common with all of them is that it causes long term pain on the vulva and possibly inside the vagina, around the urethra or the clit as well. Some forms of vulvodynia cause pain 24/7 unprovoked, which is the type I have. Other forms cause pain only upon touch or pressure.
2. “So we can’t fuck?”
I love how this is the second most common question I get when I tell about my illness to a guy I’m interested in. (For the record, that’s sarcasm. If you ask me this right off the bat, I will be left wondering isn’t shit supposed to come out of the other end.) It may come as a surprise but a man’s penis isn’t very high on my list of priorities, so I’m not too concerned about this. After all, my experience tells me I have a very fulfilling sex life regardless whether or not it involves penetration. Typically the only problem is that the guys have to open up their minds to other ways of giving each other pleasure, beyond the traditional PIV (penis in vagina) sex, and it gets kind of tiring for me to teach men that the biggest sexual organ isn’t the vagina, nor is it their undoubtedly huge cock, it’s the brain. But to answer the question, “So can’t we fuck?”: I can guarantee you and I won’t, but me and someone else probably will.
3. "Can’t it be cured?"
No, not really. The medical field is lightyears behind when it comes to female health so I don’t think there will be any change to this answer anytime soon. Medical misogyny around pain is also pretty fucking bad, and as a result few doctors even try to “cure” it - and by curing I mean getting the symptoms to their absolute minimum. I’m lucky enough to have found a medication that works for me, plus I did two rounds of physiotherapy back in Finland. I also use things like hot and cold bottles, aloe vera, numbing gel, etc. But yeah, especially my type of vulvodynia is pretty much impossible to cure, because science doesn’t know (and seemingly doesn’t care) what the root cause of it is. Some dickhead doctors just call it a “functional issue” or a “mental problem” and tell you to wait for it to pass on its own. Haaaaaaaah, it’s been 6+ years and I’m still waiting~
4. “Oh but taking medicine is not good for your body. If you just tried the *insert any diet name here*, you would probably be ok.”
Ok, cool, you have found benefits in eating in a certain way, but here’s the thing: I didn’t ask for your medical advice! No one with a difficult long-term condition wants to know about how going vegan changed your life or how you think dairy is so inflammatory it should be banned. Trust me, if the dietary cure you found after a quick googling would work, we wouldn't be having this conversation, nor would I be popping pills every morning and evening. Which, btw, can be "bad for my body" but wanna know what’s even worse? Intense chronic pain that makes me unable to enjoy life. I'm not kidding when I say people with chronic pain commit suicide because they can't take it anymore. So if we find something that makes us not want to do that, I'd consider it to be very good for my body.
Oh and I keep my medicine in a container that looks like a slice of watermelon. Boom, now it counts as fruit. Healthy!
5. "How does it affect your life?"
This is a genuinely sad question to many. Imagine you have only one arm and people always ask "So what things can you not do?" Wouldn't it make more sense just to offer your help when you see a person struggling? If you lost your arm you probably don't want to think that much about all the fun things you could do with two arms, or how convenient it would be. Instead you’d focus on doing your best with the arm you have. I'm the same. I could tell you how everything from sitting, to tight clothing, period products or new soap can make me miserable, or how I avoid jogging, jumping, cycling or excessive sweating. All these and many others can trigger my pain to get worse. But I think what’s important to note is that though I can't jog, I can walk. Though I can't wear tight jeans, I can wear leggings. Though I can't wear itty bitty g-strings, I can wear nothing at all, hah! Point is, I have learnt to navigate around my triggers/disability and would like to not dwell too much on what a chore or inconvenience it sometimes is.
6. "Wow you're so strong! I wouldn't be able to live like that…"
Well, guess what, at one point I thought the same, very literally. After not receiving proper care, feeling like my life, sexuality and future were all in ruins, I was suicidal. Many who go through this have had those thoughts. That's why it’s so so so important to take care of your friends, and make sure they have someone to reach out to when it's difficult to carry on. Korento ry tries to facilitate platforms for that to happen and I'm happy to do my bit by raising awareness. None of us are any stronger than you, dear reader, we just have no other choice. When we run out of fuel, our flame will also dim. For me, the time I contemplated on potentially ending my life was dark, but thanks to my friends and Korento, I was able to overcome that phase and now I live a life I am extremely thankful for.
7. "How can I help you?"
Thanks for asking this. It means a lot! I am terrible at asking for help so it's always a relief if a friend has my back. The way friends or lovers can help varies a lot from person to person so I'll just speak about my experience.
- Don't ask if I am in pain. If I wasn't, well now I sure am thinking about it and evaluating how to answer. This makes me more aware of any painful sensations I have going on. If you're concerned you can just ask "how are you feeling" instead.
- Don't push me. If I say no to cycling, hiking, or some days even to going out in general, please accept my answer and instead of begging me to go, let's have some tea and watch a movie.
- Remind me to take my meds and drink water. I am extremely forgetful about both of these, haha!
- Massage me like my cat massages pillows, hehe! Vulvodynia causes muscle tension and that in turn can make the symptoms worse. I promise to return the favour~
- Don't pressure me into PIV sex, or sex in general. This is a no-brainer that applies to everyone on this planet and even the little green aliens on Mars. But I've experienced (and heard of) how a lover is seemingly accepting of sex life not being consistent at first, but once the ill person actually goes through a flare up (=symptoms get worse) and loses interest in sex for a month, suddenly guilting, begging and even breaking boundaries all seem to be on the table just so that he can get his dick wet. It's like asking someone with a broken leg to play football. They surely still like football, but maybe before they feel well enough to play again you could just talk about it and watch some games together, if you catch my drift~
So that's it. I think. 7 questions I'm tired of answering individually every time. Now you have educated yourself a bit! Good for you! Maybe next time you meet someone with chronic pain you know how to be more considerate. But oh, remember they probably don't want to talk about it this openly (or at all). I'm just a loudmouth with no sense of shame when it comes to discussing my chronic pussy pain. I mean, to prove a point I'd love to direct you to the blog post where I talk about good sex positions and enjoying BDSM regardless of chronic pain but that one's in Finnish so this will have to do.
Stay sane and thrive!