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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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: 22


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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