pain clinic

Hi, maggie here. Last year my GP refered me to a pain clinic at barts hospital, after a long wait my appointment finally came, i went along and saw the dr had a chat took all my papers with me, (not that it did much good.) I was given pregabalin 75mg to take, after being on them for a while they really did not make any differnce, the pain was still very much there,when i went back i told them this they said to stop taking them and that there not much more they could do , i was so disapointed, i then asked her about acupuncture, she said anything is worth a try,(so it's a good job i asked). so i'm now waiting for an appointment, already been waiting 4 months, will let you all no how i get on. I was told by my gyne to see a psychiatrist because when i saw her i was very tearful and low, i was'nt to please to go but u did never the less, which i'm glad i did because at the thime i was on amitriptyline, he told me to stop them and change to duloxetine, which i did , it's not helped with my pain but mentally i feel a lot better to cope with the pain, i still get bad days where i feel like pulling the hair out of my head where you just had enough. Another thing only had intercorse twice in neally three years, it's so painful, my gyne told me it would make me feel better if i did, how wrong was she, the only thing that will make me better is for ths pain to go away, thank god i've got a very understanding husband. At the mo i'm also using ovista cream which takes the dryness away but that does't always work. will it ever go away.))

Hi Maggie, that's a real shame about the pain clinic, some of them are better than others I think. Have you seen a vulvar dermatologist to rule out skin conditions? If you have a skin condition the pain relief angle won't be helpful because obviously the condition needs treating.

Also I'm told Sea Buckthorn Oil helps with dryness, you can either apply it directly to the skin or take capsules and they've found it helpful for dryness in the area. I haven't tried it yet myself but I've seen it mentioned on a variety of other sites and usually really positively.

The other thing I've seen mentioned alot is the use of testosterone cream along with oestrogen cream, apparently the two together work better than just oestrogen cream.

Another option is getting your pelvc flor checked out by a womens health physio, it can cause alot of problems if it's tight and weak so that's another option if you haven't already tried it.

Hi Maggie

Im going to a pain clinic soon, I will be going to King Georges in Redbridge so if i find them more helpful I will let you know as it does depend on the consultant with how much help you get.

It seems daft to try you on just one medication and then say they can do no more for you! From what I have read they should be able to try you on other nerve blockers and I have also heard that sum anit-convulsants help with the pain.

Sarah's suggestions are great and I will be using them myself so thank you Sarah!

Have you tried a anesthetic cream for intercourse? I havnt tried it as Im not in a relationship but Ive heard it helps with the pain

I always have to google the word anesthetic! I soooo cant spell it, I should learn!

Please let us know how the accupuncture works

Take care and dont give up

Sebby
xxx

Hi, thanks for all your advice, i'm taking it all in, just a bit worried about using different creams after what
happered at the beggining.
I have tried the cream for intercorse, but it was still very painful, my husband not to keen on it either ha ha!,

King Georges hospital is not very far from me so i don't know why they sent me all the way to barts, (does anyone
on this nhs know what there doing).

I will try the acupunture, if no better i wii asked to go to king georges, thanks so much for that.

It would be interesting to no how others with vulvodynia are washing, i shower ,iv'e been told it's better then
having a bath, also i use nothing on my vulva but on my bottom i use aquous cream, also i would find it a big help if anyone has a sore bottom like me ( although it's normal skin when you look) would let me no what you use please.

All i can say is, Thank god for this forum and also to all of you who find the time to help others,
God bless you all,xxxxxxxxxx

ps.
I'm also a newbie with this computer hee hee! (still learning).

All take care, xxx maggie.

hi maggie i realise i didn't get back to you about what I use on my bottom. it's either aqueous cream or good old water at present, i don't have any magic solutions but will let you know as soon as i find one!

Maggie, I am on the same medication that you went off of. Pregabalin (aka Lyrica). I didn't have much relief w/ 50 or 75 Mgs. so my pain clinic doc increased it to 150 mgs. that made a big difference. you can take up to 300 mgs of Lyrica. I think its sad they told you there is nothing more they can do for you. that is so not true. i'm glad you came up w/ the idea of acupuncture. studies show that that has been helpful for some. have you tried Neurontin (anti-convulsant)? i was up to 3000 mgs of that. I did not get relief until i started taking around 3000 mgs. the other option is physical therapy. that has been found to be very helpful as well. but you really need something for that nerve pain. can't help you w/ washing your bottom. I get to use soap there :-)

I'm really interested to hear how the acupuncture turns out too, I've read alot of positive things about using it for vulvodynia online so fingers crossed!