Good few days!!

Well, I am probably going to jinx myself by saying this but I have had a bloody good week, vulva-wise. I have been wearing some special therapeutic pants that I'd ordered (seriously) and they have been amazing!! Definitely the most comfortable thing I've had against my vulva in a long time! My background pain has been soooo low, I've even started using my dilators again and had a smear test yesterday with minimal discomfort. Don't know how long this good spell will last but I'm enjoying it while it does. Need to order me up some more pants!!!

Website here if anyone's interested - http://dermasilk-intimo.co.uk/

xx

wow these look good, not even too frumpy, am going to order me some now.

thanks!

I hope they are helpful for you! My advice is to order the biggest pair possible because the material is quite elastic & the ones that are actually my size give me a wedgie!! Also, you can machine wash them but I would hand wash only as it seems to keep the fabric nicer for longer.

Hi, I got some of these on prescription a couple of months ago but have never worn them as I literally never wear pants anymore (mainly just sit around in my dressing gown as all clothes near the area seem to make pain even worse!). But anyway, I was wondering if they actually help the pain as I know they are a special material for skin problems, or are they just comfy compared to other pants? Cos if you think they've helped your pain by what they are made out of I might try wearing them but if its just in comparison to other underwear I won't bother irritating the area. Hope my question makes sense ha ha!

Hi ButterflyLiz,

I wish I read this before, as I ordered 3 pairs of the small size! Am usually somewhere between a size 10-12 - I should have gone for the medium right?

Oh dear... they are v expensive to make a mistake!

I'm glad you posted back though as it has been a while since your first post and I wondered if you were still feeling better from wearing them? Or was it just a co-incidental good patch?

Also - I didn't know you could get them on prescription? How did you swing that smile22?

A

Bluekangaroo - Hi I was just at an appointment with my consultant and he said they prescribe them to women with skin conditions down there and that I could have 2 pairs because it might help my skin, I'd never heard of them he just suggested them and gave me a leaflet so I could read a bit about them. I'm about a size 10-12 and I got the small and they look kinda big to me, haven't actually tried them on yet but I think you'll be fine with that size, all women are different though I guess! There is only the standard brief style available on prescription though not the other styles.

Hi peeps!

Smile – It is more to do with what they are made of, yes. The style is actually not that great for v cos as I said they tend to come up quite small & bunch up etc. The material has an anti-microbial woven into it & I think this is probably what made them so good to wear for me. I guess it depends on what you think your problem might be in the first place. I’m sure yeast is involved with me so that would make sense as to why the pants would help. In trials they did, the pants helped those with thrush & lichen sclerosis.

Tbh I haven’t worn them in a while, I was kind of disappointed how coarse the material went after I machine washed them, and the roughness ended up counteracting the benefit. They deffo helped when I wore them, though. The material was really nice & soft before machine washing! I wrote to the company asking if they’d do a trial with v patients or consider altering the style to make them more v friendly, but received no reply.

Blukangaroo – I would guess you would be fine to try on a pair for size over another pair of pants when they arrive and if too small you should be able to send them back to exchange? You would need to check the small print though. I’m a size 12 in pants and ended up ordering the largest size possible, which are the most comfortable ones I have.

Bluekangaroo - Mine are a medium! So ignore my last post! I remember now I ordered small but the pharmacists got it wrong and put medium, then I took them out and they looked Ok so I didn't bother asking to change. A small is more like a 6-8 really.

ButterflyLiz - Yeah I think yeast is what caused my v. I tried them last night for a little while, then had to take them off because it was too irritating. They are softer than normal underwear but still better off with none it seems. Oh that's a shame, no one seems to bother replying or have any interest in v, people and companies just don't understand it! I will hand wash mine then, they are much too expensive to go horrible after washing! That is a bit of a joke as that means you only get one wear out of them before they get uncomfortable!

Oh dear, looks like I might have to change for bigger size then. Shame, I was so looking forward to some relief when they arrive!

Have been sooooo sore for days and days on end now, no let up at all... am starting to despair!

Did you guys see that other thread about Fluzonole or whatever it is called? One person here said they took it every day for a week and then once a week for 3 weeks and was cured!

If you think your problem may be thrust related, then that might be something to talk to the doc about?

I'm not sure mine is thrush related, I'm not at all sure what is causing it anymore... :-(

But we'll see if the pants help at all.


Anything to get some relief... I just feel like crying today!

A

I always have constant pain have done for a long time, so I know what you're going through, hope it calms down for you . I took that when I first had the problem when I was using all the thrush treatments before they knew what was wrong with me, and it did nothing. To be honest I believe a lot of women have been through pretty much all the thrush treatments they offer at the start of the pain problems and I personally don't see how fluconazole (probably spelt it wrong too haha) could solve vulvodynia unless you had mild vulvodynia which was literally only there when thrush was there, but I understand that I have no right to say that because I have no idea what the lady went through, and I'm probably just jealous ha! I am happy that it worked for someone but I don't think its a recognised v treatment, it's just another thrush drug as far as I'm aware, worth a try but I think if your problem's anything like mine then its just another tablet on the list of 'didn't work'. As v is a nerve issue, simply getting rid of the thrush (which I don't know if I ever really have done, I'm very susceptible to it ), would not solve the damaged nerves, it would improve the irritation, but I don't see how something not used for nerve pain could fix the nerves. But I am in an extremely negative and upset mood today and I'm definitely not a doctor, so just my very narrow opinion! And I'm not trying to say that woman didn't have vulvodynia or didn't suffer, I know how hard it all is, I'm just not sure why fluconazole would fix vulvodynia, but, give everything a try! .

Oh Smile22, I do feel for you so much, I don't know how you cope with this awful pain all the time constantly. The only thing that keeps me sane is the odd (very odd lately) good day, or should I say, not so bad day. I felt so awful yesterday, I was at my niece's birthday party and there was a lot of standing around and sitting on hard garden chairs, and I just found it so hard to concentrate on anything anyone was saying, without thinking, you lucky bugger, I bet you are not in this much pain... by the time I got home I was practically in tears and just lay on the sofa with some ice wrapped in kitchen paper on me girly bits!

Have you found anything to give you some relief? How long have you had this for? I'd be interested to know what you have tried, and discounted or tried and found to work.

I don't understand how the thrush treatment helps either, but I thought I would mention it as you have troubles with thrush.

Poor you, its bad enough having constant bouts of thrush without vulvodynia too!

Do feel free to message me for a rant when you are feeling down - I may not be able to help but I can listen, and I really do understand!

Hang in there - I am still sure (well hopeful) there is a cure for each of us out there, we just need to be dogmatic and never give up!

Ax

I don't really cope to be honest, each day is a big struggle. Also as I am 19 it's horrible because everyone I know is going out all the time partying or having babies or going away and I feel very left out! I know it's just as bad at any age, but I feel very unlucky that I haven't even had a child yet or anything. Aw I know how it feels it's like you're just in a separate bubble from everyone else because it's the first thing on your mind . See I tried to put ice there once and it burned, you know like when somethings so cold it burns, even though I put something on it, but if anything touches it it makes it even worse, so I never know how to go about using ice! I'm sorry to hear you were feeling upset . Hope you feel better today!

No, when my pain was less bad I would use the shower to spray cold water there, and then apply lidocaine and it would go from say a 10/10 to an 8/10, it used to give me a teeny bit of relief, but it seems to make me burn more now :S.

I'll give you the main main points of what I have used and what has failed, it'll be a bit of a long paragraph so you don't have to read it! Thought I would warn you haha!
- I started having problems when I went on the pill when I was 15, was told I had recurrent thrush, went on a couple of different pills which caused me a LOT of problems, and tried like every thrush treatment inc internal creams, pessaries etc, even took oral tablets for 6 months. Gradually it got worse and about 5 months after I got into a 'relationship' I could no longer have sex, and I have been with my boyfriend since I was 14 and I'm now 19, nearly 20. Probably had sex a handful of times in the past 3 years, and now I literally can't do anything sexual, whereas for a while I could do anything which doesn't involve anything going in. Over the years I have tried a lot of different creams (can't even begin to remember all the names! but just like steroid creams, creams to soothe, creams to numb etc). I've been on tons of different tablets for months at a time, inc. gabapentin, lyrica, amitriptyline (that's the tricylic antidepressant used as a nerve blocker) and a few others whose names I've forgotten. Last year in December I had steroid and local anaesthic injections, and was told I would wake up numb, and when I could feel the pain when I woke up, I knew they hadn't worked. I seem to have been a million times worse since then. Before the injections I could work aslong as my shifts weren't too long, and I could wear cotton underwear and normal clothes (just never tights or tight jeans of course), and post injections I can go out for perhaps half an hour at the most if I need to grab some toothpaste or something, and even that bloody hurts a lot. If i couldn't drive I wouldn't even leave the house!

So in answer to your question about relief, no I haven't found anything. If I'm really really burning I have started using live yoghurt down there straight from the fridge (I think ButterflyLiz wrote a post about it before which encouraged me to give it a try), its very cold which helps even for a few minutes! It's supposed to help thrush too.
Yeah to be honest, I'm not sure how to tell what's irritating me because it's all just the same burning!

Lots of women seem to find some of the tablets helpful though. Whats your story? If you would like to know anything about side effects or any more detail about the meds or treatments I've had, or my full story, just message me, I'm stuck in the house a lot so I really don't mind, replying gives me something to do ha ha!

Aw thank you, same to you! Have you joined the facebook page? I just joined yesterday and it's good to have somewhere else to write about things, although I was dubious at first because I was worried it would come up on my profile, but it hasn't Woahhh I just realised how much I have written, sorry!!!!x

This just sucks doesn't it.

It sounds like you are doing all the right things, but nothing has worked for you yet. It's awful that the injections made it worse. I am getting quite scared to try new things because some do seem to make the problem worse, and just when you think it can't get much worse - you find that it can!

I've had problems for about 12 years, and since getting diagnosed last year I have become much more pro-active about trying to fix it, but in a way I long to be back at the start where I didn't really think about it so much, just had good days and bad days and once I ruled out any infections etc I just got on with it. Now I am totally obsessed with finding a cure and spend hours and hours researching possible solutions online, and I feel like I am wasting so much of my life, and thinking about it constantly I am sure is making it worse.

I have started a notebook where I am jotting down all the things that might help, things Ive tried that haven't and what to try next. I'm going to take it to my dermatologist on Thursday and see what she suggests since the amatryptalyne has not gone down v well.

I posted my story on the new members section if you want to see my sorry tale.

I think I'll try and join that Facebook group - will be nice to have something I can do on my phone from the comfort of my sofa instead of having to jump on the computer which always hurts me as even with the softest nicest office chair it makes me hurt!

Ooo I got my derma silk pants this morning... am wearing a pair now... not sure they will help me as not sure it is a skin issue, more of a nerve or muscle issue Im guessing, but hey, worth a try...

Hang in there - this has got to get better sometime surely!!!

Ax

It's good to keep a record, as going from doc to doc, hospital to hospital, it gets soooooo tedious and upsetting explaining it all, so you can just shove your list under their nose so you don't have to explain so much, I did that before too.

Luckily I have a laptop instead of a desktop, so I can lie on the sofa or in bed and type away lol, but it's still hard to get comfy and because laptops get hot I never actually get to keep it on my lap I have to sit all awkwardly ha ha!

I just read your story, sorry you've had problems there for such a long time . I have IBS too. I believe that all health problems can somehow be linked to vulvodynia, whether it's IBS (I think the pressure of not always being able to go must have an effect as the too areas are so close), or cystitis or any other infections. Its such a nightmare as everything makes everything else worse! It's good that you have become focused on finding a solution, but as you mentioned, try not to let it take over. Coming from me that's ridiculous as I have let it, but try not to obsess too much because the stress might make it worse.

Yes I hope we all get better or that they find a cure for all us that haven't had luck with other treatments! They can do heart transplants so a simple nerve problem should surely be fixable! x

Hello lasses, thought I would butt back into your conversation

I had read that other thread about the girl who took fluconazole for a week then one each week for three weeks. I am in the middle of trying it at the moment. I was really hopeful about it but unfortch I don’t think it’s going to do it for me – I had a massive flare up in the middle of the week where I was taking it every day! I will complete the course as I think it’s worth trying everything that might help, but I’m not very hopeful now.

As for how it might help… well, I think the theory is that in some people who are very susceptible to yeast, they never quite get rid of the infection and it is always there in a small amount which may not show up on tests but is enough to cause the pain. So in these people, some intensive thrush treatment may break that cycle. I’m not sure that this is widely accepted by the medical profession but it would make sense of why long-term fluconazole helps some peeps. It seems there are so many causes of v.

I’m so sorry to hear that both of you are suffering constantly.. that must be awful. I have that sometimes but not all the time. Have you considered trying to get your hands on a strong painkiller, at least to get some relief? One of the girls on the facebook group takes ketamine and swears by it – she had to fight to get it as there are some misconceptions about it being addictive, but apparently if used as directed this is not a problem. It may not be a cure but if it gives you some relief from the pain it may be worth it. Also, sometimes breaking the pain cycle for a while can be enough to give your body a chance to repair itself, especially the nerves.

Something else one of the girls posted about was gel pads from mothercare (http://www.mothercare.com/Mothercare-Feme-Pads-and-10-Gauze-Covers/381844,default,pd.html?cm_sp=ProductFeatures-_-Category%2520landing-_-Mothercare%2520Feme%2520Pads%2520and%252010%2520Gauze%2520Covers) – you keep them in the freezer then when you need them you slip them into a gauze cover and wear them in your pants. I got some and they are really soothing! They’re a bit less stringent than ice so I don’t know if they may be worth a try for you, smile? If they are too cold straight from the freezer you could leave them out for a while before trying, maybe.

One thing I am thinking about trying is going to see a McTimoney chiropractor who specialises in vulvodynia after reading of ivyrose’s success (http://www.vulvodyniasupportforum.com/t849-i-am-cured-read-this). There are no real obvious signs that my pain is misalignment but I guess there probably wouldn’t be. So, it may be worth a go.

Hope you both are keeping ok xx

Hi butterflyliz i hope by the end you see some improvement, I just think that as vulvodynia is a nerve problem, taking away the thrush (which I swear is impossible because I'm pretty sure I always have it and I've tried everything!) won't solve it. But then again, if the fluconazole completely got rid of the thrush, and the thrush was the cause, maybe it would eventually allow the nerves to repair themselves lets hope this is the case for you anyway!

I've been on really high doses of lyrica, gabapentin etc, but not anything like ketamine. I don't know anything about it really, but would consider it if it would give some relief, do you know if she gets it from the doctors/hospital?

ooh thanks so much for the link for the gel pads! will definitely get some of those as soon as I have some spare cash! I think they would be helpful just to cool everything down .

yeah i suppose it is worth going to see the chiropractor, even just to rule it out. to be honest I sometimes think I'd like to find out that I have some other problem that is causing my v, so atleast I could work on curing it! I know you don't have any signs to link it to that, but if you can, you may aswell double check it.

I hope you are keeping ok too, thank you x

Hey!

Yeah I’m with you on wishing I could be diagnosed with some other thing that’s the cause of my v…preferably something with a cure! But mine is so random… I always have pain on touch but the unprovoked pain varies wildly – some days I barely notice it but then it can be really bad for weeks at a time. I drive myself crazy trying to figure out what I did differently. I think it has a mind of its own.

I am scheduled for another nerve block in August (fun times). I’ll see how that goes and if it still doesn’t have much effect I might go down the chiropractor route. I hate to think of all the money I’ve spent on this over the years, though, mostly on things that don’t work! But, it’s worth a shot I suppose, like you say.

With regards to the ketamine, all I know really is what I’ve read from her on the fb group (I’ll PM you the girl’s name, then maybe you can speak to her on fb). If you look at the group’s photos, she’s put up some of her taking the meds (orally from a syringe) & there’s quite a lot of info in the comments. Basically, you can’t get it from a GP just a pain clinic or hospital and they can be reluctant to prescribe it cos it’s expensive. But, it lasts for about 5 hours and I think it takes away most if not all her pain.

xx

Yeah mine has a mind of it's own, I've noticed that sometimes I might go out for an hour and its hurting (as always) but I can just about stand it, then I can be sitting at home and it'll be burning like unbareably (duno if thats a word ha ha!). But then another time going out is impossible and being at home helps, its so hard because the people around me must think I'm making it up sometimes!

Good luck with the nerve block. I know it's such an expensive illness because it's just constantly trying different things. What do they do for that? I've had injections down there which made me bloody worse .

Thank you, I just had a look at the pics and am going to read what everyone's written now. I'm being referred to a pain clinic within next couple of weeks (if the hospital hurry up grr!!). I will mention it and see what they say, then if they offer no decent alternative I'll just keep annoying them til they consider it ha ha! Thanks x

Sorry to hear your injections made you worse. Were they actually into your vulva? For me, they are doing pudendal nerve blocks which they inject through my buttocks (ouch). It is a mixture of steroids and anaesthetic. Last time it didn’t do anything but it didn’t make me any worse, so they want to try again.

I hope you get your ap soon and that they give you some effective pain relief! You’re right, sometimes persistence is the only way!

Liz x

Yeah they were at the bottom in a semi circle if that makes sense? which I wish they had discussed with me because I have pain all the way around and about an inch inside all the way round too (which I had told them about 3000000 times!!). I was under general anaesthetic for it, but I knew as soon as I woke up that they hadn't worked because my usual pain was still there but even more sore, and I bled alot. I had this feeling that it wouldn't work but something kept telling me well if you don't try you'll never know, and now I'm wishing I didn't because although my pain was 24/7 and very bad, its now unbearable. And also they barely told me anything about them. That is what my injections were too, I don't really understand those nerve blocks through other areas, I've never had them suggested to me. I sometimes doubt if I actually have vulvodynia because it seems to just be a term for unexplained nerve pain with causes that we can only guess at, and there are no real tests for it (I don't think pinpointing pain spots with a cotton bud is really sufficient!), so I wonder if there is something else to it. Considering many women I have spoken to on here seem to have completely different issues to me but it's still called the same condition seems ridiculous, I think all unexplained vulval pain is bunged together under the same category and really each situation should be looked at individually and not generalised. I am in a particularly bad mood today with very strong pain so please excuse my rant ha ha!!!!!! x

Hello you two, hope you are ok today?

I have been away for a little while and stressing out quite a bit cos we are trying to buy a house that is way beyond our means (gulp) but that's another story!

Well my derma silk pants didn't help v much, I wore them religiously for about 2 weeks - rinsing out in shampoo by hand each night and putting up with the most annoying wedgies all day - you were so right about those sizes! - but the pain was still there and worse as ever. Then I went to the dermatologist the other day and she said - all casual like - that the lichen sclerosis was still there... I thought - hang on a minute, last time I came you said I definitely didn't have that, just the vulvodynia - which is quite enough on its own thank you very much. But now this! I was v depressed indeed, then she said, well it might not be, or it might be early stages... I also have a lump (probably benign) - the probably was not a great comfort... at the entrance of my girly bits too. Marvellous. No wonder it has all been hurting so very much.

Anyway then my period was approaching and I was getting really scared and dreading wearing sanitary towels with all this pain, and also I was on hols that week staying in a cottage down in Dover, (isn't that always the way - your period comes when you least want it!) But weird thing happened. After a month solid of constant awful pain, since doing those stupid physio exercises, the pain just stopped, well receded so much i only noticed it if I was sitting on a hard chair or something. I was amazed! And so pleased! What is that all about? Then I thought, well the last time I had my period it went away too, and I was away visiting friends that week too. So is it my home and daily life - sitting in office chairs etc that set me off, or is it hormonal or something as my period brought some relief?

Am confused now. Of course now my period is gone and the pain is back. More intermittent than constant thank the lord... but it's back as usual.

Weird... I keep thinking I am on the brink of a breakthrough of understanding, but I think I am just getting more confused.

However I am still plugging away at the possible options... my dermo gave me pregabalin to try instead of amatryptaline. Not too keen to take it as don't want to feel like a total zombie, but will have to I guess if I want to see if it might help. Bit scared after the awful reaction i had to amatryptaline, I know it is a different drug but the side effects sound the same.

I also have an appointment to see Helen Forth - physio specialist in women's bits on the 18th. And I am going to see the Chiropractor that ivyrose went to see on the 23rd.

I am clutching at straws all over the place!

The chiropractor was really kind as I emailed her and she rang me up to talk through whether or not this could be a possible cause for me, which was nice. I live about a 2 hour drive or 3 hour train ride away from her, and she is the closest McTimony person to me, so its a big undertaking! However I am going to give it a try. The more I think about it the more I have realised that my back does actually hurt quite often, especially if I am standing up for a long time. Is that normal? Who knows. I think its worth a train trip though to have her look at me and say yes or no.

Same with the physio, am not sure that tight muscles is my problem but worth finding out - and if neither works I guess I will take the pregabalin. I know some folks on here are saying Lyria or something helped them, and I think its the same thing, so worth a try I guess.

And if all that fails my utter last chance saloon desperado measure is to save my pennies and fly to Washington DC to see Dr Goldstein! I have been reading his book 'When sex hurts' which actually isn't really about sex hurting at all but is about vulva pain and how to diagnose and treat it! And am totally bowled away but how thourough his examinations are to find the cause, not just treat the symptoms. I know it will be a crazy thing to fly to the other side of the world to see a doctor and will cost me an arm and a leg, but if it works!?

Hopefully one of these closer to home options will work out for me, but just incase I am saving my pennies in a jar to get me those flights! I emailed the cvvd office where he works and they could not be nicer or more helpful about getting an appointment and they say that usually one appointment of 1-2 hours is all most women need. Imagine! Why does he have to be on the other side of the world though... boo...

Anyway sorry - rather a long one... lots flying around my head at the moment.

How did you go with the fluconazole Liz? Did it make any difference?

Good luck with the nerve block, sounds painful! I hope it works this time. Your pain sounds very similar to mine [... is so random… I always have pain on touch but the unprovoked pain varies wildly – some days I barely notice it but then it can be really bad for weeks at a time. I drive myself crazy trying to figure out what I did differently. I think it has a mind of its own.] I could have said that! Except in the last month when it was all the time. I think i caused that though with the physio, or not of course, sometimes it does just flare up for weeks on end for no obvious reason.

Smile - I do feel so awful for you having this all the time, I totally understand what that is like now and I am so full of admiration and respect that you have not gone totally loopy, I don't think i could cope if I didn't get the odd good day. Although I think in a funny way - having it so bad lately has spurred me on to finally (after 12 years) try and fix this problem instead of burying my head in the sand!

You say you are on Lyrica? Is that the pregabalin one? Does it make you drowsy? It doesn't sound like it is helping much. There must be something causing this thing, we just need to find it!

Don't give up hope!

Ax

Hi guys, hope you have been doing well / as well as possible!

I have had a very crappy couple of weeks, bad pain  Have no idea why. I did realise however that a few years ago I was on a higher dose of lyrica and it coincided with a time when my pain was at its lowest.. I came off it altogether because me & my doc thought it had worked all it was going to. When I was off it, I was at the worst I’ve ever been. Then I went back on it at a lower dose and I’ve been mostly OK but still with regular flare-ups. So in conclusion, I’m going to ask to up my dosage again! Can’t believe it has taken me this long to work it out but I guess I try so many different things sometimes it’s hard to see the patterns.

Smile – the idea with my nerve block was that it would calm the pudendal nerve, which runs from the bottom of your spine, through your bum and then ends in the vulva, where if it’s damaged or whatever it causes pain. It’s so hard to know what to do for the best isn’t it – I was terrified before my injections in case they made me worse. Have you managed to see a decent specialist at all? I see Wendy Reid at the Royal Free in London and she is great, don’t know if that is anywhere near you. I hope your pain eventually decreases. I am totally with you – the term “vulvodynia” is way insufficient. It doesn’t really mean anything. I’ve heard of people getting better by herbs, coming off the pill, surgery and various drugs – it can’t all be the same problem!!

Bk – sorry the pants didn’t help and also that you have even more stuff going on down there now… hope they can help you with the new issues. It is uber confusing. My pain is often lowest during my periods but then again there’s something to be said for not sitting, too. I moved 2 months ago and before I started working, while I was just chilling at home, my pain was really low. Then from the very first day of sitting in an office chair all day, it started to creep up again. Yeah I’m on lyrica (yes same thing as pregabalin), I don’t find the side effects too bad, only really notice it when I up a dosage and quickly get used to it. For me it’s better than ami for side effects. Hope it’s the same for you. It’s good to try different things, let us know how you get on with them all. Fluconazole = zero difference sadly. Was worth a go.

Have either of you tried co-codamol (codeine & paracetemol)? I gave up on OTC painkillers for this stuff but in desperation tonight dug out a pack I bought ages ago to try. It has actually helped quite a bit and quite quickly, which is surprising. It says you can’t use it for more than 3 days though cos you can get addicted.

Lots of loves x

Sorry to hear you've had a bad time lately, me too! ahh lyrica made no difference to me I took 600mg a day for a long time and had no difference! Hopefully it'll reduce your pain lots if you go back on . Well the best I have seen is Prof Luesley at City Hospital in Birmingham (I live in Solihull which is right near Birmingham Int Airport), which is kind of classed under gynaecology but they know a hell of a lot more about vulvodynia and stuff than the other gynaes I've seen, so I think the clinic must have a different name :S. But he's basically now said he doesn't know what else to do with me so is referring me to a pain clinic, which I know is gonna be bloody frustrating because they're probably never going to have heard of vulvodynia and the likelihood of them coming up with something I haven't already tried is slim, but oh well. Still waiting for my letter though so not sure what will happen when I go.

Exactly, vulvodynia is just a crap term used to explain unexplained vulval pain. I guess we must each have something slightly different that hasn't been discovered or researched yet. I don't see how someone that has a little pain when inserting a tampon or during sex, which although is still horrible and affects life a lot (I'm not trying to say they have it easy as I know even provoked pain is really upsetting and well, painful!) - but I don't see how that can be shoved in the same category as what I have.

I don't think I have tried that, I have heard of it, do people often use it after operations and stuff? Ahh that's a shame, if only it could be used often we might've been on to something there! xx

Hey guys, sorry you've been having a bad few days... me too! Especially today after my first physio assessment yesterday. Ouch!

I have loads of tight muscles and trigger points... am so surprised as I didn't think I was tensing muscles down there at all... so lots of work for me to do on that now...

Unfortunately I had to see someone privately for the assesment as the waiting list for the royal free (where apparently all the good vulva doctors are) is really long!

But now I know I have to go back for several more sessions, it looks like I might have to wait.

Very frustrating to know something that might just help but not be able to do it yet.

In the meantime I don't know whether to give the pregabalin a try or not. I am totally terrified of the side effects and like you say BL - once you start it is kinda hard to get off of again isn't it - if the pain all comes back again. Do you know the theory behind what the drug is actually doing, is it actually re-programming the nerves or just dulling down the pain while you are on it?

I hope things start looking up for us soon!

Ax

Well my flare is on its way out thank goodness. Taking the co-codamol seemed to be the turning point, although I also started using lidocaine on a cotton wool bud in the labia overnight at the same time which is also a good trick for calming the nerves. Point of caution with the co-codamol – it worked well & quickly on the pain but made me feel sooooo sick. I had a terrible night’s sleep. Was still better than being in pain, though. The codeine in it is an opiate so in the same family as morphine etc. I’m definitely gonna keep some handy for emergencies.

BK – I’ve always been a bit hazy on how pregabalin actually works – I was always told it works to “fix” the nerves and stop them firing pain signals when they shouldn’t. Originally Wendy told me that once it had done its job I would be able to come off it permanently but for me that doesn’t seem to be the case, at least not yet. I found the following page which is quite interesting – it says that the drug stabilises nerve activity in the brain, which would imply that it just dulls down the pain while you are taking it. I guess maybe the theory was that if the only thing causing my pain was excessive nerve activity, the drug would have eventually calmed them enough to stop the pain permanently. I guess I must have other issues going on besides that, though. Tbh, I would happily take lyrica forever if it turns out to be my only option for pain relief.

http://www.netdoctor.co.uk/brain-and-nervous-system/medicines/lyrica.html