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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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


Pregabalin/gabapentin

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Pregabalin/gabapentin

Post  Rose86 on Tue Feb 18, 2014 6:53 pm

Hi all,

Quick question - have any of you had any success using pregabalin or gabapentin to treat vestibulodynia? My gynae wants me to go on pregabalin but I only have localised provoked pain and can't find any evidence to suggest it works for this. I'm not prepared to go on a drug with side effects if it's never worked for anyone!

X

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Re: Pregabalin/gabapentin

Post  Alana3 on Tue Feb 18, 2014 7:38 pm

I used it for provoked but it didn't work for me but you don't know until you try. You can always get off it there shouldn't be lasting side effects so once you wean off you should be OK. But if it works that would be cool.

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Re: Pregabalin/gabapentin

Post  alessandria on Tue Feb 18, 2014 8:55 pm

The only clinical trial examining pregabalin for vulvodynia was discontinued due to low enrollment, so there are no real studies on whether it is effective or not (there are anecdotal reports of people getting better on it, but mostly in the case of generalized and unprovoked). As far as gabapentin goes, there is a multicenter trial underway right now in the US to see whether it is effective specifically for provoked vulvodynia. There is evidence to suggest it works well in people with generalized and unprovoked vulvodynia, at the very least. However, unprovoked and provoked are thought to be caused by different mechanisms, so what works to treat one might not help the other. There just isn't a ton of data, which means it might work, it might not. Both of those drugs have been under a lot of fire lately for not actually being helpful in a ton of different pain disorders, despite prevalent off-label use. Doctors have been prescribing them for plenty of things under the rationale that you never know until you try, but it has ended up hurting people. So...a lot will come down to whether you feel like its potential risks are worth it, and that's a personal call.

A question, how has physio been going? Did you end up getting botox? I think as long as you have noticeable pelvic floor dysfunction, I'd continue working on that -- it DEFINITELY can be a huge cause of provoked pain in particular, and it's hands down the best route to go with if side effects are a big concern of yours. If you are not super concerned about side effects, then the drugs could totally help out and should be up for consideration. Good luck!!

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Re: Pregabalin/gabapentin

Post  Rose86 on Tue Feb 18, 2014 9:26 pm

Hi! Yeah the gabapentin study came up in one of my searches, but god knows when we'll see the results of that one! As for the Botox, I didn't go down that route in the end, my new gynae doesn't seem keen on it. But I'm certainly keeping my mind open to it. As for the physio, I've been using a biofeedback machine and dilators since October and haven't noticed any change in my vestibule pain, even though my resting tone in my pf muscles has gone down. I'm still unable to relax the pf muscles when I'm thinking about something else though so maybe that's the problem. I'm reluctant about gabapentin and pregabalin because of the side effects, however I would be prepared to try topical gaba/pregabalin if I could get it prescribed in the UK. I'll be asking my gynae at the next appointment if it's an option.

Rose86

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Re: Pregabalin/gabapentin

Post  JemimaSurrender on Mon Mar 10, 2014 7:12 pm

I used Pregabalin for about eighteen months I think, and for a decent portion of that I did seem to be considerably better and sex was almost bearable, but it did return eventually. I am now on Gabapentin, and have been for about six months and have had no success so far!

I did see a consultant today and he said they rarely work for the kind that I have as it's for nerve pain rather than provoked. Another success for the NHS then, thanks guys!

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Re: Pregabalin/gabapentin

Post  Rose86 on Thu Mar 13, 2014 10:41 pm

Hi Jemima,

You say the pregabalin worked for a bit - do you have localised provoked pain of the vestibule or something else? Also how did you find the side effects and also coming off it at the end? x

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Re: Pregabalin/gabapentin

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