Hello everyone, my name is Aster and I’m a new mod here at vvssupportgroup! I’m going to introduce myself by telling my VVS story and then talk about things I can do for you guys :)
I’ve had VVS (more specifically vestibulodynia) for about 2 years now. I’m working on it with physiotherapy and with nightly* dilator stretch exercises & lidocaine (*okay, not that nightly, who am I kidding).
I found out I had VVS when trying to have sex for the first time (early 20s) with a long-term boyfriend, tried a couple more times (it never worked because, you know, pain) and then eventually went to a gynaecologist. They said I probably had a yeast infection (I think this is a typical story for VVS, haha) but after few months of that treatment not working, I was referred to a specialist. I’m super lucky that my city has a clinic specifically about vulvas & the various things that go wrong with them. The specialist there knew exactly what I had and sent me to a physiotherapist. So, all in all, it probably took me half a year to figure out what exactly was going on down bellow. I’ve spent the following year and a half working on it.
The type of VVS I have is mostly due to hyperactivity of the nerves and muscles in the vulva/vaginal entrance. The muscles used to be super tense all the time, but that’s gotten better. Now, I’m working on the fact that my super sensitive nerve fibres interpret any serious stretch/touch as pain. Lidocaine and physio are helping with that but it’s still a problem. I also have anxiety; this anxiety causes sympathetic nervous system activation which sets off my VVS (ridiculous). Because of this, I try to have a pretty holistic view to working on VVS, simultaneously working on anxiety & re-training my vulva to not interpret touch as pain.
In the last year, my VVS has gotten better, I have to say, but it definitely isn’t ‘fixed’. I haven’t been able to have sex yet - though I admit I’ve been super reluctant to try since the time I tried last year was so painful - but I’m still with the same guy I found out I had VVS with. And, no be honest, even though we don’t have sex, we still have a pretty amazing relationship. So, I probably can’t give you guys any sex advice but I can definitely talk about maintaining intimacy & physical closeness in a relationship when you can’t/don’t have sex.
I’m also in medical school, so if you have any paper you’ve heard of on VVS and want me to track it down and read, I’ll do my best to find it for you guys. I can also interpret most most medical mumbo jumbo so if any doctors are speaking jargon and you want help, I’m your person.
Oh, that brings me to my last point: I’m agender. So, yeah, I have a vulva but I’m not a girl/woman. I understand the sucky-ness of having a genital issue and having to navigate biological essentialism in medical practitioners while being trans/nb. If any of y’all are trans/nb and want to talk to about that, I’m definitely here for you.
I think that’s all for now! I’m super happy to be starting on a mod here. If any of you want to chat, for any reason, feel free to shoot us a message. If you want it for me specifically, just say that it’s for Aster.
Goodbye! Happy long weekend to those of you that have it!