Hi from the newb

My name’s Liz, I’m 26 and I’ve had vulvodynia for 10 years – looks pretty scary when I write it down! For a lot of that time it has been manageable and there have been times when it seems to have almost gone away completely…almost but not quite.

This year has been a challenge. In January I had a mega flare-up, worse than anything I can remember. We’re talking stabby, burny, electric-shock hell. It blindsided me – things had been ticking along reasonably smoothly on the vulval front up until then and all of a sudden I couldn’t even get out of bed, let alone drag myself into work. Things did calm down, albeit slowly, and my pain is back to more of a normal pattern now, but it left me really scared.

Once the physical pain started to subside, I started to have panic attacks, which I’ve never experienced before, and generally felt stressed & anxious all the time. It didn’t take me long to realise that this was a reaction to the sudden onset of the horrendous flare. I went on a three month course of antidepressants which helped me a lot but I’m still way more anxious than I used to be about all things vulval.

In a way though, it was a bit of a push to me to accept this condition as part of my life and make the necessary adjustments, which I had been struggling to do. I am fortunate to have found a wonderful consultant several years ago who has helped me enormously (not least of all by putting me on pregabalin – lifesaver), but I think on some level I still wanted to pretend that I didn’t really have this. Now I’m having CBT to help with the anxiety, physio sessions & seeing a neurologist next week, after being on his waiting list since January! I’m also going to the VPS conference in London in December with my partner. Is anyone else going? I’m really looking forward to it.

Anyway, so glad to have found this forum, not sure why I haven’t looked for something like it before.

Best wishes to you all xx

Dear Liz,

You have clearly been extremely strong and constructive in dealing with this. And it's truly wonderful that you have found a consultant who can actually HELP you! That's a huge deal!
I haven't even been able to find anyone who even considers vulvodynia when I bring in my research and describe my symptoms.
You mentioned pregabalin; does Lyrica help with the vulvar pain or is it mainly for anxiety?

It's awful how much this condition can affect you on a psychological level. Sometimes I feel like the pain is being caused by my fear of hurting, if that makes any sense. I really hope you keep getting better, and please keep us updated with your progress with the neurologist!

Hi Skippy,

Thanks, yes, I guess we tend not to give ourselves enough credit for how strong we actually are to deal with all this crap! And then it comes as a surprise when it all gets too much…

Anyway, I agree, I’m very lucky to have a knowledgeable and compassionate consultant. It’s nothing short of tragic that the same can’t be said for every woman with v troubles. My heart really goes out to you. Is there any option for you to try and see someone in the UK? I’m not too sure what the options are there.

The lyrica is 100% for the pain. I’ve been on it for about 3 years now and it slowly but surely reduced the severity of the pain. For about a year or so I was *almost* back to normal & could have sex if I was careful. It was when I came off the lyrica for a few months that I had the wicked flare-ups so I’m well and truly back on it now!

It totally makes sense that it feels like the pain could be caused by your fear of it hurting. It’s likely that to some degree your pelvic floor muscles are unconsciously tensed all the time against the pain, which actually will increase the pain, so re-educating your muscles down there to be relaxed all the time will probably help (I’m in the process of doing this). However, I don’t think that this is the full story. It seems like most women need to approach treatment from several different angles at once.

Thank you, I have had a really good few weeks pain-wise and will post something more detailed soon. All best wishes to you, and feel free to ask if there’s anything you wanna know.

xx