New member who has just moved countries and starting over with the saga that is V!

Hi I’m new to the forum and wanted to share my story in the hope that someone might have some suggestions as to what I should do next in this saga! I have had Vulvodynia since late 2007. It started with pain only on intercourse and increased to pain almost every hour or every day. The pain is like a burning, red raw pain right in the centre of the vulva area. With drugs I have managed to reduce this pain by about 40% but I’ve still a long way to go.
I tried the dermatological creams with no success, physio therapy was also a waste of time for me, I have had a pudendal nerve block and a caudal epidural nerve block – both with no success (I actually ended up on an opium patch after the pudendal nerve block as it flared the pain up that badly!). I also tried the bio feedback (dialators) and whilst this did help to significantly loosen my vulval area it didn’t reduce my pain in any way. I have had some success with Sodium Valproate.
I should mention that I recently moved back to the UK after living in Australia for 5 years and therefore currently have no medical advisers in the UK.
If I’m totally honest I’ve seen so many specialists that I am actually very confused as to what is wrong with me and the cause! My pudendal nerve specialist told me I had pudendal nerve neuralgia but my pain management specialist and gynaecologist both told me I had neuropathic vulvodynia. I am confused as to whether I have both things or whether they are pretty much the same thing! I do know that the only thing that has worked for me is Sodium Valproate which my pudendal nerve specialist had never heard being used before to treat pudendal nerve neuralgia but which seems to be mentioned on many vulvodynia websites. My pain gets significantly worse after sitting for a long time (not easy when I work in an office!) and as the day progresses. I have found that using heat therapy (hot packs) on the vulva area does help too – although it’s a temporary relief rather than a cure.
So here are my questions!
I noticed my pain reduces when I turn my knees out. I have always had inward turning knees and never thought anything of it before. But now I am wondering if this joint misalignment is putting too much pressure on my vulval area. Does anyone else have this problem or know who I would even speak to about this issue? I did get orthopaedic insoles from a podiatrist but they have not helped my condition. He was based in Australia.
I have just turned 30 and am keen to have a baby in the not too distant future. As intercourse is not currently an option I was wondering if anyone has/knows anyone who has used other means to conceive eg IVF? Also I imagine pregnancy and labour would both be very painful. I am not sure if I could even continue to use my medication during pregnancy (currently on Sodium Valproate).
I have seen mention of diet changes on the forum. This is not something that has ever been suggested to me. I’d be interested to know if it has worked for anyone?
After my non-success at bio feedback it seems that they key for me is to reduce the pain itself before I can work on my over active muscles. Does anyone know how you go about getting a pain management specialist in the UK? I am in Edinburgh.

Sorry I’ve just seen how long this post is! It’s just so good to be able to speak to people with the same issues – it’s not exactly something that you can discuss with your mates on a night out is it!

Hey Christine and welcome!

Ummm where to start. See if you can find a pain clinic, there should be one at any major hospital. Maybe even a GUM clinic or vulval clinic. While we are all fairly protective about this not being a "sexual" disorder specialists in that area can be really helpful. Pain with sitting is common. I find turning my legs out takes the pressure off also.

I've done the diet modification. Going sugar free had a huge impact. I'm currently struggling to get that under control again. I was at my best when I meditated, made diet changes, drank little coffee and loads of water, limited stress etc. I have a therapist who specialises in sex therapy, dumping all this rubbish is vital.

Vulvodynia means pain in the vulva. So is really not a diagnosis as such. It's like saying pain in the leg. Finding out what causes that would be more helpful.

I'm sure other people will have a lot to add. We're fairly gobby on here. I hope you find something that's helpful.

Good luck hon. xx.

Hi there and welcome. The inward turning knees could definitely be a feature of your V. If your knees turn in you don't walk with control of the pelvis and overuse certain muscles. I'm guessing you were given arch supports as inward rotating legs make the arches collapse. I don't know how bad your knees are but I have one leg that rotates in and I've learnt to walk with enough control to stop it. If this is just something that happens when you walk you can teach yourself to keep the knees facing straight ahead by concentrating on what they are doing as you move, you have to kind of gently push outwards with the knee through the entire step so at no point do your knees roll inwards and flatten your arches, it can be done and it takes pressure off the piriformis muscle and recruits the gluteus medius instead. The piriformis muscles can irritate the pudendal nerve so it could well be the knee problem that's causing that. You basically keep your knees facing forwards and make sure they stay that way all the time, it takes alot of practice and I used a mirror when I first started to get used to how it feels when I get it right. A physio would be able to help (a good one, lots don't know much about the pelvis) or a pilates teacher could help you with the walking.

Thanks so much for all of your help girls. Sometimes it feels like you hit a brick wall with this thing so it's good to hear about new ideas and get advice. Thanks so much!

Hi there,

May I ask who you saw in Australia for Biofeedback? Why did you move back to the UK? I am originally from Warrington. Moved to Australia in 07.

I have had the whole pudental neuralgia explanation thrown my way also. Pudental Neuralgia means your Pudental nerve is irritated (duh) so anyone that gives you this diagnosis is stupid. They are telling you your symptoms not the cause. Vulvodynia is also an explanatory term - you have pain in your vulva. Neither are a diagnosis, so don't be worried about a name for it. It doesn't matter.

I have not tired sodium valporate but I have found coffee and acidic food to trigger at times. Wine in particular seems to set burning off, it also irritates the burning in my hands and feet. Low oxolate diet was a waste of time (did it for 4 months)

I have knees that turn in and flat feet. Puts pressure on my hips so they hurt which contributes to the pelvic floor doing strange things I have arches which seem to help. What was it about physio that didn't work for you? Were trigger points found? How long did you do it for? I took 6 months to see results. The fact that you have had a PN block and it does not work indicates that this is not the causing factor. Have you tried ami?

I also work in an office and have got a cushion and taken the middle bit out of it. Nobody can tell what it is and I am way more comfortable. Hot packs work for me too. It relaxes the muscles, that is why.

Not too sure on babies, I want one in a few years too. Some say vaginal birth (without a tear) is the best thing you can do because it gives those muscles a big long stretch and stops them getting tight again. . I am sure if this is not an option for you a c section would be given - due to the circumstances. I have asked my gyno and she said this is the case. Sex is now almost always pain free for me after 6 months of physio. I would strongly recommend giving it another go, at least to get you to be able to have sex so you can conceive a child. Pain with sex was the first thing to lesson after physio then daily pain gradually decreased to a level of 2/10 some months later.

Hope this helps.

Claire

That's very interesting Claire, you probably told me before about your knees and feet but I'd forgotten. The whole flat feet and internally rotated knees is definitely a loss of pelvic control. I got orthotics from a Podiatrist at the hospital and amazed him that I could still let my arches collapse when wearing them! My super lax ligaments allow me to lose control of my feet even when wearing arch supports so I don't bother with them, I use the method of controlling my hips and pelvis I mentioned above and that takes care of my arches at the same time. I do sometimes forget though and stomp around badly!

Hi Claire,

Thanks so much for your detailed reply. I hope that you are enjoying life in Oz. I was there for 5 years and I loved it. My husband and I are both from the UK and we came back recently to be nearer family.

For Biofeedback I saw Sherin Jervis at the Woman's Hospital in Randwick, Sydney. Perhaps you could contact her to see if she recommends anyone nearer you.

http://www.whria.com.au

I also have flat feet which doesn't help the whole arches thing. I tried physio for around 8 months. I went once a week and every time the physio commented on how tight my muscles were and worked on them but by the next week they were just as tight. I was doing daily exercises at home too. I never felt like we got to the bottom as to what was causing them to be so tight so it seemed like a waste. With having to pay for it in Oz I could only afford to continue with things that seemed to be working. I also usually got my pain back before I got to the end of the drive way of the physio's! We never talked about trigger points but that sounds like sthg that might have been helpful! I think it's sthg that I'll try again in the UK as it may just be that I didn't have the right physio.

I assume by ami you mean amitriptyline? I was on Endep (which I believe is similar to ami) at first. It helped a bit but sodium valproate worked much better for me. I was using both at first but I had bad halucinations as a side effect of mixing them so I had to stop the Endep. I'm hoping to try more meds once I can get a pain mgt specialist over here.

Hi Christine,

It seems not all physios or practitioners in biofeedback seem to know what they are doing. I saw Marek Jantos and can’t fault him. If the physio didn't find trigger points in the pelvic floor then they clearly were not doing the right thing. You need to read the book "heal pelvic pain" by Amy Stein. This should explain things clearly for you. I didn't notice a difference and everything kept tightening up until I went for intensive treatment 4 days of 2 hour sessions each day. That shifted it.

Visit here http://freeyourpelvis.blogspot.com/ and see if you can get the "free you pelvis cd" I just bought it from Alyssa and I am going to see her on the 18th. Cd is great.

I am on Endep it has reduced the burning in hands and feet but not in vulva, which says to me it is not coming from any nerves, yes they may be irritated but they are not the cause.

Do you research before going to see a physio, get all the questions and make them answer over the phone before you make an appointment. It takes very special people to treat this, not just any old physio.

I am going to look into sodium v I have never heard of it.

I wish you all the luck in the world. I miss my family in England but Australia is home now.

Thanks Claire. I will definitely read that book. It's odd because the physio I went to see was recommended by the vulvodynia specialist I saw at the hospital and had had succes with many other vulvodynia patients. I think perhaps the issue was that she was not adjusting her technique to suit my requirements. Or perhaps I was just a particularly difficult case! We also did not look into my inward turning knees which I now think really needs addressing. I think I'll be mentioning the possible connection straight away with another physio. I hadn't even thought of the connection until just before I left Oz. It's interesting that you only felt a difference after an intensive course of treatment. I will definitely look into that as if it worked for you then maybe it will for me too!
I should clarify that the physio I went to with no success was different to the physio that I did bio feedback with. Sherin was fantastic.
I got the sodium valproate from my pain mgt specialist but managed to get more prescribed from a local GP here when I got back so if you don't have a pain mgt specialist your GP could probably help you get some sodium valproate.