Does it ever just go away????

Hello all.

I am a 39 year old woman living in Sussex in the UK. I have had Vulvodynia for about 4 and a half years. It has taken a long time to get a diagnosis and to accept I actually have the condition. I have resisted getting involved with this forum for ages, but I am in so much discomfort now I am desperate. Its got much worse over the last 5 months. Ive felt like leaving my husband on several occasions, we've had real problems with the intimate side of things & I feel so guilty. I can only wear skirts with no knickers, I cant walk, cycle, drive, sit on a soft chair. Ive noticed if I get even a LITTLE bit hot - thats it, major flare up which can last for weeks. Is this a common thing? Im on my third amiltriptaline type drug, LYRICA, up to 150 mgs a day for a month now with no change as yet. Very depressing as Ive read messages from people on here who have found relief with a week.
My Doctor knows nothing about this condition, I know far more than her! I have been up to London a few times to see a consultant but all she did was prescribe Lidocaine (itchy) & discharge me.

Im starting to feel like theres nothing that can help. I can feel myself getting more and more depressed - weight loss, uncontrollable crying, waking at 4am etc. My question is - does Vulvodynia ever just go away on its own?

I'd certainly like to think so... My boyfriend's adamant that if I stop taking any tablets whatsoever and putting anything else into my body then it will just clear up. I'm not so convinced, but there certainly are days where I think that eventually I'll never have to deal with this. I think you have to look at it like that, if you don't then it will just eat you alive.

As for the Lyrica... My dose was gradually upped until it settled on around 400mg a day I think, but I still took it at that dose for three months before I had any relief, which then lasted a few months. I questioned whether it was that or something else that had stopped the pain as it had taken so long to have any effect, but apparently that can be normal.

Sadly it came back again, and so I've gone up to the maximum dose of 300mg a day, twice a day. I've had some relief from that too, but again it's been a good six weeks in the making.

Some thing work for others, and then they have no effect at all for other people. Keep your chin up and hope that it will kick in soon. I'll keep my fingers crossed for you.

Hey Jemima

Thanks for that - its good to know I may have a way to go with the Lyrica, I wont give up on it just yet.

A glimmer of hope is a zillion times better than none at all. I would love to hear from someone who woke up one morning to find it gone.
I do think the body is a very complicated machine, we dont fully understand how it works & I refuse to accept that this is me for the rest of my life. Im just not having it! Apart from the Lyrica I lead & have always led a pretty chemical free life (without being a weirdo about it, Im not some yogurt weaving hippy) - I really dont think it can all be blamed on that, or alot more people would be on this forum! Mine started after several bouts of 'thrush' - what implications this has I have no idea & I suspect neither does 99.9% of the medical profession. Ho Hum!

Best wishes to you & I hope you get better really soon xx

Hi, I'm from the UK too.
Mine keeps going and coming back if i am on Neurontin i take ten a day. It feel better now when i have sex so it must be working before i couldnt even let him enter and now it doesnt bother me much anymore. Hope it helps a bit

Well Ive got to admit I was hoping to hear from someone who'd had vulvodynia (emphasis on the past tense) and was now a normal functioning woman, but I guess if you were an ex sufferer you probably wouldnt be using this forum. You'd be out there wearing trousers riding a bike and celebrating. I really find it very hard to even entertain the idea that I might have to live with this condition for the rest of my life. I just cant believe that a few thrush episodes/treatments could permanently screw it all up so badly down there, its crazy. I feel like its eating up my mind too - I spend far too much time thinking & worrying & feeling rubbish.

I will keep taking the pills & try & be positive. Thinking I should hit it from as many angles as possible so Im going to try & sort out some acupuncture (dubious but Im desperate) and also (gulps) going to try to de-sensitize the affected area with a vibrator. I feel quite apprehensive/embarrassed about this but I am prepared to do anything to get rid of this THING. I dont think theres much else to be done, Im already following a fairly low oxalate diet.

Thank you very much for your comments & I will let you know if I think anything is working.

abovetheknee, I had it for a year and half, and then was pain free for 5 years. No pain whatsoever. It didn't just go away exactly, but I did 4 months of acupuncture, then was well enough that I became pregnant with my son, and then it did basically just stop. No trouble for 5 years, then a few weeks ago it came back, so I started up the acupuncture again and now I am about 75% pain free already, after only a few treatments. I am also following a strict alkaline balancing/anti-inflammation diet, which helps immensely, even though it's pretty tough. No sugar, no red meat, no dairy except plain yogurt. Totally worth it though. I am confident I will be pain free again soon.

Never ever give up hope. You will be well one day. Even if it means trying all sorts of different things. If you keep trying, something will work. I really believe that. I went to 6 different ob.gyns and a urologist before I went to acupuncture last time. I was really depressed and miserable. Then I had 5 amazing years. So, don't give up. I'm not!!! It came back but I'm going to get rid of it again!!

Lilly K - Acupuncture worked best for me too. I also did it for 4 momths and got pregnant with our baby girl. I am due in Jan. A vaginal delivery can only help this condition and I am so excited to birth our daughter!

Wishing you pain free days ahead - thank god for acupuncture hey! xxx

Congrats Aussie!! I hope you have a healthy, happy rest of your pregnancy and that the delivery works wonders for you! SO great to hear of more success!

LilyK and Aussie can you say a bit more about the acupuncture? I've just seen a great consultant today who says he wouldn't rule out acupuncture but not his chosen method for me - i have focal provoked vulvodynia so am one of the 'lucky' ones as I only really get pain with intercourse. I had read about acupuncture for vulvodynia but - well we all have it for different reasons so i suppose it depends on where exactly the pain is and what kind - but what acupuncture points were used do you know and was it NHS or private?

He's suggested a steroid injection as this reduced inflammation and can help repair nerve damage but i really don't want to go down drugs / medical route if possible - i don't want to further upset whatever imbalance has led me here in the first place. I am considering trying it though because I feel the 'help your body heal itself route' doesn't seem to be working in this case. I'm hoping if i can break the cycle of pain / anxiety and have more sex (this is part of the approach apparently!! no he wasn't creepy a very very nice and very experienced man) it might help me recover.

He did also say that for most women it is a lifelong condition - ie it doesn't often mend itself - but pain management can give a pain free life.

For the OP perhaps you could ask about being referred to someone who does these injections - using glucocorticoids in the vulval area or even a 'pudendal nerve block' (he uses local anaesthetic first!) the doctor i saw said they are usually 3 to 6 monthly.

If your vulvodynia has an inflmmatory component (it often does from what i've read) then pregnancy will reduce symptoms because you produce lots of progesterone when pregnant - this has an antiinflammatory effect - lots of people with autoimmune disorders get some remission while pregnant to for similar reason - the bod needs to not 'reject' the baby's DND so your immune system is 'damped down' a bit unscientific way to describe it but that's kind of it in a nutshell.

hi ladies hope you are all well and happy.... i live in sydney Australia and was diagnosed with vulvodynia but don't know what type as yes. i do know that i got it straight after a thrush and urine infection. do you know any acupunchure specialist here in sydney? also i only get pain after sexual intercourse. also can you please tell me how having sex is good for this condition? im so confused about that