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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 …

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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 …

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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


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

After 3 years, finally on the right path!

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After 3 years, finally on the right path!

Post  sailor_moon on Sun Jul 24, 2016 11:57 am

Ok Ladies...so after 3 long and extremely hard miserable years, I am finally on the right path and getting the right treatment.

After 2 successful nerve blocks and my symptom history, I finally got to see the only Pudental nerve specialist in the southern hemisphere! And I pretty much have been diagnosed with pudental neuralgia...no surprise at this point given my symptoms.

He first asked my history and symptoms. He then got me to walk back and forth pacing the room. He then went on to press on areas of my back, butt and legs asking where hurt. He then gave me a vulva examination and used a Q tip to do a series of different movements 'tapping' with the q tip and 'brushing' the Q tip on specific areas.

He also believes that the menstrual regulating drug I'm taking has affected the tissue down there further adding to the inflammation.

He believes the cause of the problem is muscular, the muscles are constantly in a spasm and are bulking, causing pudental nerve trauma. given my excessive exercise history and the fact I have had a few falls on my ass over the years.

Treatment for now is a combo cream of 2% Amitripteline  and 0.05% estrogen, and once I get a GP referral, 3 months of physiotherapy by one of his trained physiotherapists [ I get 5 free sessions if I get my GP to refer me!]

Also, I am getting a special pudental nerve MRI done next week, to see whats going on and just in case of entrapment, but he highly doubts its entrapped at this point. We will just have to wait and see.

Dont give up hope ladies!! I believe we will all find a cure or means of relief, we just need the right doctor who is willing to help us. It has taken me 3 long, and very hard years to get the right help, but I never gave up, even though 14 other doctors told me to.

Any advice would be much appreciated. I will try and keep you all updated.

Last edited by sailor_moon on Sun Jul 31, 2016 5:38 am; edited 1 time in total

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Re: After 3 years, finally on the right path!

Post  emalita on Sun Jul 24, 2016 2:07 pm

That's great news! I hope this doctor and treatment regimen are finally the answers to your pain Very Happy


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Re: After 3 years, finally on the right path!

Post  PainBlogger on Sun Jul 24, 2016 8:35 pm

That's great new after so much frustration. Good luck with the cream and the physio.


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Re: After 3 years, finally on the right path!

Post  WaahwaahUK on Mon Jul 25, 2016 8:17 pm

Wishing you much luck and pain relief! Keep us posted.


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Re: After 3 years, finally on the right path!

Post  meelie on Thu Jul 28, 2016 11:07 pm

where are you? and how did you find a pudental nerve specialist? Good luck with your plan.


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Re: After 3 years, finally on the right path!

Post  sailor_moon on Sun Jul 31, 2016 5:43 am

Thanks ladies. I will definitely keep you posted!

I cant start physio yet as I am waiting for my GP to write up a chronic pain management plan so I can get 5 free physio sessions...hes on holidays so I cant get a referral from him for another 3 weeks! long wait but it has to be done so I can save some $$$....I'm frigging broke after these doctors costs while trying to pay my mortgage.

I have a special pudental MRI this week to get a better look at whats going on and to check for entrapment just in case....$550 later and a $200 motel room....and a 6 hour drive.

Meelie I am in Australia Smile this pudental specialist is in Australia too, in Sydney.

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Re: After 3 years, finally on the right path!

Post  lindsey_taylor on Mon Aug 01, 2016 12:13 am

I hope everything continues in a positive manner for you! You give us all hope with this!


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Re: After 3 years, finally on the right path!

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