Had this for 5 years, looking for people who understand

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and stuff and even though they can relate to my pain they don't relate to how hard it is to date with this issue. I got the surgery to remove my vestibule back in May but it seems to have just made my pain worse. I know it can take up to a year to heal but when I tell my doctors that it's not better and that it's actually worse the face they make is incredibly disheartening. They clearly expect it to be better by now and don't know what to do about the fact that it's worse. So i'm trying to accept that this may be forever without having catastrophizing thoughts which has been nearly impossible to do and I'm trying to figure out how to proceed on living normally if I will have to always deal with this. Can anyone here relate? Do any of you single or recently single ladies have any advice on how to deal with the way it affects dating?

Hi friend! I too am not married yet so I understand where you’re coming from. I posted some of my story in the new members forum recently. I’ve had this condition for 6 years now and it started when I was 14. It resulted from sexual contact with the boyfriend I had at the time and he was very supportive and understanding. We stayed together for another year and half after, but the relationship ended and I always had fear that no other man would be as supportive as he was and would never understand. I have been dating a man for 4 years now, I didn’t tell him about my condition until almost a year in. It was somewhat awkward and uncomfortable, but he was also very understanding. My advice to you is to just put yourself out there, take things slow and date someone who is kind and compassionate, who loves you for you and isn’t in the relationship just for sex. My boyfriend and I have chosen to wait until marriage to have sex and I think there is security in that, especially with having a condition like we do. I am sorry to here the surgery hasn’t gone as planned, I’ve contemplated that surgery but have put it off for now because I have found a few different things to help me live a more normal life. I have noticed that if I get over heated the pain becomes intense. If I’m able to keep myself cooled down I am virtually pain free. I never sleep in underwear or pants for that matter and that has cut down the pain as well. I try to make smart clothing choices, especially on hot days whenever I know I’m probably going to get overheated. If you can avoid underwear in your every day clothing choices that helps too, and thongs have actually been a help to me when I thought they would be a hurt. I think because they stay in place and don’t cause friction and keep things cool down there. Another thing that helped me is a product you can buy online at Walmart called dermoplast, which is a spray that cools and moisturizes. Have you ever considered physical therapy? I tried it and it loosened up the muscles and put me somewhat on the right track. I understand the thought of it never ending being discouraging, but using some of these tips and tricks has helped me escape those thoughts and feel normal most days! I hope some of this will be a help to you too! Keep me posted!

I also wanted to add relating to the heat issue, that if your feet get too overheated I’ve noticed that’s what makes the big difference! So if you find that to be true try to sleep without socks at night and leave your feet out of the blanket, maybe use a fan to blow on them. And wear sandals as much as you can!!

Hey,

Sorry that you're struggling even after your op, how are things at the moment? When you say the pain has got worse are you referring to unprovoked pain?

I was single through the majority of my days of going to the dr etc, getting told I was crazy, trying everything. I found it difficult and lonely as well and I understand it's really hard to talk about with people who've never had to experience pain. If I ever mentioned it to friends they seemed to sympathise but then immediately would start talking about sex and dating so casually it was really mentally affecting me.

Dating wise I was very nervous and would either really hold back and not want to meet new people or I'd try and gauge how into me someone was, so I could feel comfortable telling them about my condition. (This didn't work out well - made myself look a bit mental trying to find out how much he liked me and he couldn't run off quick enough haha). Another friend has told me though, that she's found men are far more understanding than either of us thought they would be. She's had a few partners since her operation and she's told them about Vestibulodynia before doing anything, and they've been very supportive and understanding. As hard as it is, I'd suggest trying to have the conversation with people early on? You might find that men deal with it better than you think. It's easy enough me saying this I know - I never did it myself because I'd have been too nervous.

What I did in the end was ask my male best friend to have sex with me. I'm not suggesting you do this! Just letting you know there's so many kinds of support out there! He's my best mate and I trust him more than any random guy I might meet - this was a huge help for me. As a result we've actually started dating but I get that that's probably a rare outcome.

Anyway, I hope it helps you to know it's definitely just people in relationships who have to deal with this, and this whole forum will have a lot of people in the same position as you.

Take care xx