Medication advice? Please!

So... I've been suffering with vestibulodynia for the past 2.5-3 years, but only got diagnosed around three months ago.

Since then I have tried amitriptyline (30mg) for about two months. Aside from the groggy feeling in the morning (and the complete stoner/spaced out trip you get when you accidently forget to take it before bed, and have to have it the next morning!) it had no effect.

I was subsequently taken off it, and am now taking gabapentin. I've been on it for around three weeks now I think, and as of yet I've still not noticed any change.

Oh, just to let you know, my pain... It's very much confined to just the vestibule. It aches like a very big sore bruise when I sit down (usually when I'm leaning forward slightly) and it can sometimes be a bit itchy. The actual vestibule doesn't hurt unless it's touched, and then... Oh my! Agony! Horrific burning and stinging pain. As you can imagine, sex is off the cards completely, although the majority of the time I can tolerate oral sex with little trouble.

I've been told that if the gabapentin doesn't work, that is all of my medication options gone. I found this really hard to believe! I was then told that my only other options are accupuncture and psychotherapy. If neither of these work I would have to PUT UP WITH THE PAIN for another two years before I'd be considered for surgery.

I'm utterly heartbroken. I'm only 22, and have been with my boyfriend (37) for 4 years, and we only had 18 months of a normal sex life before this happened. If something even slightly positive doesn't happen soon than I can't imagine what will happen to me. I'm extremely lucky to have such a fantastic boyfriend who's completely stuck by me, but I don't know how much longer I'll last. After 2.5 years I'm still no further along.

It's days like these you wonder why you bother, right?

Anyway, sorry for the massive post. I'm new so thought I'd get a big of my background in while I'm at it!

If anyone can offer anymore suggestions medication wise then please let me know. I've read something around here about pregabalin? I'm from the UK if that helps by the way.

Oh and any specialists (anywhere in the uk at all!) that are good with this, PLEASE help me. I searched the vulva clinic list but they were just gynos...

Thanks guys!

Hi Jemima, so sorry you have to be here but glad you've found us. It helps so much to chat with other women who know what you're going through.

The sad truth is that knowledge of vulvodynia and all types thereof is at best patchy amongst most healthcare professionals, so you get a slightly different story from each one you try. Ami & gabapentin definitely aren't the end of the line as far as medications go. Neither did anything for me, but pregabalin has been a lifesaver. Not sure why no-one has mentioned it to you, could be because it's similar to gabapentin (it's like an improved version of it) but gaba didn't help me & pregabalin did. Another barrier I've come up against is that it costs more - but this is absolutely not a valid reason for them to prescribe it to you if it might help.

There is loads to try, but with this condition we seem to have to do a lot of the legwork ourselves. I'm afriad a lot of it is trial and error. It's not ideal, but there is hope. Most of us find things that reduce our pain a lot, even if they don't always take it away completely.

Have you looked into physiotherapy at all? For some of us, chronic tension in the pelvic floor seems to be a big issue. Have a look at www.pelvicphysiotherapy.com.

My consultant, Wendy Reid at the Royal Free in London, has been superb. Get someone to refer you if you can. I used to travel for an hour to see her because where I lived no-one had a clue what to do with me.

xx

Thanks sooo much. I'll check into Wendy Reid. It annoys me when doctors are like, "well... You could try this person, but they're a bit far away so only if you're willing to travel... It's 20 miles." Are they mental? I'd drive 2000 miles if someone could help!

I'm definitely taking the pregabalin suggestion to my next appointment. I don't know why I haven't been told about it from my consultant. Although it doesn't surprise me in the least. Everything about this condition is so frustrating!

As I said, I'm willing to try everything and if I have to try one for 6 months, and another for a month I will. The fact that I'm taking anything makes me feel a little more hopeful these days. And I feel 1000% better having found this place. I had started to think all you people were imaginary!

I've never looked into the physio either. The fact that I'd have to pay for all of these different treatments terrifies me enough! I think I've always figured that it was irrelevent to me anyway. I know you can be unconsciously tensing your muscles, but I've never felt like that was the problem. I mean, I never get as far as the muscle tensing being an issue as as soon as a fingertip touches the outer part of the vestibule, it hurts so much that nothing inside matters! I'll definitely look into it eventually though, but I think I'll try and deal with the burning/stinging bit first! I'm trying to try different things seperately too so I can rule certain things out over other things, even though a combination might work. You can't win can you?

It amazes me nearly everyday that the pain's got nothing to do with the skin, and that there's nothing to see. I've never felt a feeling like this that hasn't been caused by a skin issue, even like a cut or burn or something. It's crazy!

Just one of the many confusing things about the condition I guess!!

I'm on Pregabalin too but for me it's just changed the diffuse burning to diffuse prickling and not touched the vestibule pain at all. It varies and it is more expensive so usually tried after other meds have failed. As for the muscles tensing, they can be tense all the time so you wouldn't necessarily feel you were doing it, when mine are relaxed my resting tone is still 12-14 which is way too high. Women's Health physios are available on the NHS so you don't have to pay, the sooner you ask for a referral the better because they tend to be in demand from all the women with lax pelvic floors and at least you could rule the PF in or out if you saw one.

Oh riiiight. Okay, I'll definitely mention that next time I go too then! I've got a list the size of my leg already! It's better than no list at all though I guess.

Just a quickie!

I've been taking Pregabalin now for about a month and a half and I'm on 400mg a day.

I thought I'd not noticed any improvements in my symptoms yet, but I managed to have sex over the weekend. However, before then (and now aswell) the usual general pain is still there and it still hurts to sit & all the rest of it.

So I just wondered... Could it be that the Pregabalin is working, but I'm only noticing the effects of it in some areas, such as, taking it means sex can be near pain free, but I still hurt generally?

Sorry if it's an odd or silly question, I'm just trying to work out what I've done differently that made it possible to have sex!

It's not a silly question, it can help in some areas and not others such as I find I have less diffuse pain but it doesn't help the inflamed vestibule so it seems to be working the other way round for you. It can also take a few months to fully kick in so you may get some more help from it yet too. Only time will tell!

That's reassuring then. I've not tried again yet so I'll just have to see how it goes!

Does anyone else have mild-mentalness during the day whilst taking these? Near enough every day now I have a brief period where I just go completely spaced out and I'm not really too sure what's going on. I kinda snap out of it and have no idea what I've said or how long I've been off for haha.

I just wondered if anyone else had experienced anything similar? It's quite a nice feeling sometimes...!