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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 …

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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


Next stop, Gabapentin...

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Next stop, Gabapentin...

Post  WaahwaahUK on Mon Dec 07, 2015 7:43 pm

So my GP said he can't prescribe me lyrica / pregabalin without me trying gabapentin first. So, I now have a prescription for gabapentin. I'm ever so slightly terrified as have heard mixed stories about side effects etc but have decided to try and stay positive. Who knows? It may work for me...
I'm still having physio for nerve issues with my pelvis. Finding that soooooo hard as it causes major flares in pain but persevering.
Just thought I'd post an update. At the moment, no one can say for sure what's caused my pain, however I think I have come to the conclusion so far that this time last year after being treated with lots of different meds like steroid creams and pessaries for an infection, my nerves have gone berserk. I've had subsequent pelvic issues from holding myself so tight for months on end. Physio is addressing that, and I'm hoping, the right meds will help calm my crazy nerve pain. Hmmm...

WaahwaahUK

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Re: Next stop, Gabapentin...

Post  PainBlogger on Mon Dec 07, 2015 10:58 pm

I've taken gabapentin in the past for my non-pelvic pain issues and I didn't have any adverse effects. I went up to 100mg, four times a day then eventually was switched to pregabalin as another dr preferred pregabalin for his patients. That was all before my pelvic pain started. But, yeah, I had no problems with gabapentin. I hope you have some success with it.

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Re: Next stop, Gabapentin...

Post  WaahwaahUK on Tue Dec 08, 2015 5:09 pm

PainBlogger just wanted to say thank you for your input on my posts since I've been here. I really appreciate it. It's so valuable just hearing someone say something like that about their experience sometimes. Going to give it a shot from tonight. Pregabalin seems to be an issue where I live due to cost.

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Re: Next stop, Gabapentin...

Post  PainBlogger on Tue Dec 08, 2015 9:18 pm

You're welcome. If my protracted experiences with various medications etc ( Rolling Eyes ) can be of use to others then at least that is something positive Very Happy . Yes, pregabalin is newer and more expensive than gabapentin. Both can take a few days to get used to hence the dose is normally increased slowly.

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Re: Next stop, Gabapentin...

Post  WaahwaahUK on Wed Dec 09, 2015 4:32 pm

I just find your manner very down to earth, and encouraging. So thanks! Hard to explain without sounding weird!

One thing I want to do is write down in detail things that I've tried and things that have helped a little because without this forum, I would honestly never have known where to go to or what directions to try... It's just not something many people know or have experience of. And of course, so many potential causes or additional / related issues.

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Re: Next stop, Gabapentin...

Post  WaahwaahUK on Sat Dec 12, 2015 10:49 am

4 nights on 100mg gabapentin and I couldn't face it any more... I'm so disappointed as I was determined to ride out any initial side effects... I had extreme night terrors and nausea and dizziness that I had to call in sick to work. I couldn't function. I go to work in pain every day as it is. So, I've stopped it for now. Going to try and continue with physio, magnesium, bicarb baths, epsom salt baths, wine (occasionally) and thinking about trying lidocaine for a period of time. The raw soreness I could do with some help in calming and wondering if that might help over a period of time.

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Re: Next stop, Gabapentin...

Post  PainBlogger on Sat Dec 12, 2015 12:26 pm

Sad That's not good. A drug that makes you feel worse than you did to start with has to get the heave ho. If you can face trying something else and your GP is agreeable then there's pregabalin or duloxetine - and, as you say, lidocaine. I was better after eight weeks of lidocaine 2% (Instillagel 11ml syringes - one syringe lasted two nights) on cotton wool at night than I was before it. It did calm down the surface burning quite a lot. We all react differently to different drugs it's such a nuisance that it's not more of a predictable science. I'm going to hopefully increase my duloxetine when I see my doctor before Christmas. I'm sure it is helping me somewhat and (logically, though these things don't always follow...) if I up the dose it'll hopefully help a bit more.

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Re: Next stop, Gabapentin...

Post  WaahwaahUK on Sat Dec 12, 2015 4:53 pm

Yes I was so disappointed, as I really was ready to persist with initial side effects if I had bay but I just couldn't take it... I don't think he'll let me try pregabalin. He seemed reluctant due to cost. I may ask about duloxetine. Thank you. Really glad to hear its working somewhat for you. I'm feeling it all today - really aching and sore. I think I got so tense on the gabapentin which hasn't helped. Even my jaw hurt like crazy! Anyway, I've bought over the counter vagisil today to try a little of and make sure I don't flare with it first and then will hopefully give that a go.

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Re: Next stop, Gabapentin...

Post  PainBlogger on Sat Dec 12, 2015 5:06 pm

I hope it gives you some relief. Bear in mind that it may contain fragrance in the added ingredients (at least the similar Lanacaine does, or used to) so if you do get any irritation from it, it may be that rather than the lidocaine.

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Re: Next stop, Gabapentin...

Post  WaahwaahUK on Sat Dec 12, 2015 5:30 pm

I've just seen it says that on the tube! Thanks for the warning. I think I'll try it somewhere close but not currently sore first.

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Re: Next stop, Gabapentin...

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