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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


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

Not mad, just miserable.

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Not mad, just miserable.

Post  mrs.optimistic on Wed May 27, 2015 6:49 am

I can't be optimistic. I feel like I'm building myself up to let myself down again. I'm so tired. I'm tired of trying, having hope. I keep asking myself why. How? I'm letting this take control of my life. Happiness is slipping further away from me. I feel invisible, my words don't mean a thing. I don't want to be touched, or loved. I can't make love. Will this ruin everything? Everything we've worked so hard for? I've battled other medical conditions. But this? This is just hell. Its an unrecognized, belittled, curse. I want to sob forever and drown in my tears, like crying will make the pain go away. Another bacterial infection, who knew? Nothing. Nothing helps. Screw optimism. It's such a waste.


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Re: Not mad, just miserable.

Post  mikan92 on Thu May 28, 2015 11:30 am

I feel your pain. I also have moments when I just want to curl up and sob and not wanting to deal with any of this, I wish I can wake up one day realising all this was just a nightmare. I'm also scared of having hopes sometimes, because when the hope is high I'll fall harder when the it fails. But look at all the ladies in this forum, many of them have battled this horrible thing for so many years (some for their whole life)and they did not give up. If they can do it, why can't we? There are so many things we have not tried and I think it'll be too early to say nothing works.
I think it's okay to have down moments but we need to pull ourselves tgt after that. I tell myself everyday: don't think about what you have lost, think about what you have. I rmb this quote from the movieThe Theory of Everything 'However bad life may seem, while there is life, there's hope". Please don't give up no matter what! Optimism is super hard and it seems useless, but being pessimistic definitely won't bring us anywhere.


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I Agree!

Post  Sincere1738 on Sun May 31, 2015 6:10 pm

yes living with this is a curse. Thats exactly what it is. I really do try to thank god for what I do have. Which is so much compared to this. Honestly I bet there are men and women who have life in prision, lost a child, or people living in fear everyday in other countries wish they could trade places with us if given a chance. So I really count my blessing and a don't add up my problems( Joel Olsteen) Wink
We just have to take it day by day, and PRAY. Besides all of the remedies and treatments those are most important. Stay strong. I miss my sex life dearly, it is apart of being a woman and not being able to have sex when I want is devastating. This motivates me even more to find what will work for me. When God is ready. Not when I am.


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Re: Not mad, just miserable.

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