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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


pain clinic

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pain clinic

Post  maggie on Fri Jun 25, 2010 10:04 pm

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.))

maggie

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Re: pain clinic

Post  Sarah001 on Sat Jun 26, 2010 11:29 am

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.
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Re: pain clinic

Post  Sebby (Admin) on Mon Jun 28, 2010 6:23 am


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

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maggie

Post  maggie on Mon Jun 28, 2010 9:04 pm


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.

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Re: pain clinic

Post  julia on Wed Aug 25, 2010 12:17 pm

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!

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Re: pain clinic

Post  jules on Wed Aug 25, 2010 11:45 pm

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 :-)

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Re: pain clinic

Post  Sarah001 on Thu Aug 26, 2010 10:16 am

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!
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Re: pain clinic

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