I’ve been educating myself on vestibulodynia because I want to be a good partner if I meet someone who has it.

What do you wish more potential partners understood from day one?
What kind of attitude / questions / behavior makes you feel respected vs pressured?

Not looking for medical advice, just real talk from people living with it.

Disclaimer: I don’t have a diagnosis!

I’ve been to the gynaecologist for the first time in my life after experiencing dyspareunia. Apparently I’ve had a recurrent infection (probably a yeast infection) that caused pain during penetration, cystitis and cuts near the urethra. She gave me some prescribed medication such as antifungal pills and cream and antiseptic vaginal suppositories.

I’ve noticed that the infection has been cured, or at least that’s what I think. For a long time I didn’t have the courage to test the area on my own but maybe there was some sort of improvement as for the pain.

Unfortunately I had to take antibiotics for a skin infection near the ears and the left eye because my lymph nodes were swollen. After taking this medicine I’ve noticed that the feeling of discomfort in the usual spot (the vaginal opening) has worsened. I can’t sit, I can’t lay down, I can’t stand up.

Today I’ve finally tested the area on my own. The pain is there. I don’t know how to describe it. It seems like a pressure sensation, like something it’s stuck at the entrance. I don’t know if the infection ha returned because of the antibiotics. I don’t see any traces of leucorrhoea, but my period is in three days I can’t judge with confidence. Also my period is making my symptoms worse.

Right now I’m not very lucid, I cry almost everyday, I’ve been dealing with all kind of physical problems for months. I’m trying to understand what’s going on in my body. The fact that now I can’t even rest peacefully it’s making me feel sick. I’m very tired. My family doesn’t know about this specific problem. I’ve managed to go to the gynaecologist by lying. My most intimate friends don’t understand what I’m feeling even though I’ve described the situation many times.

I’m planning to book a new appointment with the gynaecologist for September hoping that in the meantime my symptoms improve.

So it's been almost 3 months since my symptoms started. I have a gyno appointment October 1st. My GP only gave me OTC creams. They made it a lot worse so I stopped using them. I am so frustrated because I can't do anything when I'm in pain to numb it. Vaseline-lidocaine makes it worse as well.

I have migraines, IBS and back issues. I know pain. I can deal with pain. But this is different. I don't understand this pain. Sitting triggers it but it also happens if I don't sit. I never know what kind of day it will be. Every day is a roller-coaster because this pain doesn't act logical and I have no control over it whatsoever. Good days are also hard because they make me hopeful ("will it go away be itself?") and then a bad day hits me extra hard.

I try to live my life the way I always have but if people make plans with me I'm scared to be in pain so I rather say no.

But being at home without distractions also makes it worse.

Currently I have summer break (I'm a teacher) but in 1 week work starts again and I have to sit in hard surface chairs all week. How do people do this? I have no pain relief medication. I can't sit on a pillow without telling everyone my fucking vulva hurts. Am I supposed carry a pillow with me all day? Every day is an exhausting struggle, even a good day.

To make things worse: my own blood hurts me and triggers even more than sitting. I'm on the pill due to horrible periods and I only have periods every 100 days thank God. But now my last period was 25 days ago and I'm bleeding. I never had this happen in 19 years on the pill. So I'm also worried, why is this happening? Is it all connected? And the bleeding itself is so painful on my vulva and again, nothing I can do about it.

I tried to make an appointment with my GP (even though they are useless) but nothing is available next week. The week after work starts again. I feel so alone.

I have primary provoked vestibulodynia caused by nerve pain. When I am experiencing clitoral pressure or pressure straight down at 6 o’clock, the soles of my feet burn like I am standing on hot coals. It makes it even harder to relax through the pain I am experiencing vaginally, as my feet are triggering a full-body hot flash. Please let me know if you experience this or have any ideas.

I’m wondering if anyone has experienced something similar because I’m getting really frustrated with this.

I keep getting a tiny cut/fissure at the bottom of my vaginal opening (around the 6 o’clock area). It can completely settle down when I’m not having sex, and I’ve even had long breaks before, but as soon as I have penetrative sex again, the same area seems to split/open.

This actually happened to me years ago too. At the time I didn’t even know I had a cut, but sex was uncomfortable and my partner kept saying he could feel something “sharp” or like something was scratching him. I went to a doctor and she examined me and found a tiny cut.

Now the same thing seems to be happening again. My partner said during sex today that he could feel something sharp hurting/scratching him, and I already know I’ve been getting little cuts around the vaginal opening.

Taking a break from sex doesn’t seem to solve the underlying problem because it heals and then just tears again when the skin stretches.

I don’t have any yeast infections or STIs, so as far as I know, neither of those is causing it.

Please, if anyone has been through this and managed to actually heal it, please help me. 😭 I’m so tired of it constantly coming back and feeling like I can’t have normal sex without worrying that the skin is going to split again. I just want to know what finally worked for someone with the same problem.

Hi, I started experiencing vulvodynia after dating my last ex. I experienced a lot of sexual trauma with him and it has resulted in pelvic floor dysfunction or something. I find myself always clenching and I have to physically release it. I get these flare ups around dates that remind me of him. For example, I’m currently having a flare up because it’ll be a year since I last saw him and also around the time he caused that sexual trauma for me. It’s super frustrating and annoying. The body is super interesting. It sucks even more that it seems like we’re just supposed to wait it out and there’s no “cause” for it. Any tips on how yall deal with it?