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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


Treatment ideas for daily provoked pain

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Treatment ideas for daily provoked pain

Post  TMN1994 on Sat Jan 07, 2017 2:02 pm

Hi everyone,
I have had vulvodynia for three and a half years and have other types of peripheral neuropathy, which developed 6 months ago. My neurologist believes that we will never find a black-and-white cause, and that it is best to proceed just addressing and allievating the symptoms. Since last June (when my nervous system completely imploded), my vuvlodynia has been horrendous. Walking and moving around are really painful, so (despite all of the other types of peripheral neuropathy) vulvodynia is my main concern at the moment.

I am seeing a pain consultant who specialises in gynaecological pain. I have seen so many doctors over my lifetime that I have decided I want to go in to appointments with a few solid ideas of treatments instead of solely relying on the doctor to provide ideas. So I was wondering if anyone has any treatments they would recommend for someone with severe daily pain, that is largely provoked by touch or friction? I want to push for injections- I can't keep applying numbing cream every 2 hours for the rest of my life! Would it be possible to get some ideas? I want to compile a list so that I can discuss the pros and cons of each with her. I would be really grateful for any suggestions.

I have never spoken to anyone with vulvodynia before, so really want to hear from people with the same condition, as I feel so isolated at the moment.
Thank you!
Antonia

TMN1994

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Re: Treatment ideas for daily provoked pain

Post  PainBlogger on Sat Jan 07, 2017 2:39 pm

Have you tried any oral medications - such as amitriptyline, nortriptyline, gabapentin, pregabalin, or duloxetine?

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Re: Treatment ideas for daily provoked pain

Post  TMN1994 on Sat Jan 07, 2017 3:26 pm

Hi Painblogger,
I have- I am on amitriptyline 80mg and pregablin 200mg (twice a day). As my problem is global neuropathy I am searching for a medication that will work systemically. However my vulvodynia is so bad that I also want a regional treatment.
Do you have any thoughts? I will use the list of meds that you gave and ask my doctor about each as well so thank you!

TMN1994

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Re: Treatment ideas for daily provoked pain

Post  PainBlogger on Sat Jan 07, 2017 4:46 pm

I also have widespread neuropathic pain (back, neck, hips, shoulders) from fibromyalgia and I've been through all those meds I listed. I'm now on duloxetine 90mg/day and it's the most effective of all I've tried for both the vulvodynia and other body pain. My vulval pain is really minimal now and I'm pain free much of the time. I also take a low dose of tramadol but while that helps my other pain it's never helped with the vulvodynia/bladder pain.

Here's a summary of my vulval pain history: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

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Re: Treatment ideas for daily provoked pain

Post  TMN1994 on Sat Jan 07, 2017 10:51 pm

Thank you for your reply! I have read over the main post and I am going to make notes and take they along to my next appointment.

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