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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

A day in the life of this shit

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A day in the life of this shit

Post  meaganmayes on Sat Sep 28, 2013 1:51 am

It is nearly October now. I was diagnosed with vulvodynia in may. Can I just say MY LIFE FREAKIN SUCKS! not only does sex feel like knives stabbing me, but its getting worse. Now I am starting to get the burning sensations during the day. I cry a lot when I am alone. Is my life really going to end up like this? How am I supposed to lead a healthy relationship if I can't have sex with my partner? If anyone has advice, I welcome it!


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Re: A day in the life of this shit

Post  Elc88 on Sat Sep 28, 2013 5:49 pm

I still have days like this. It's frustrating, and I can sympathise with how you must be feeling. It's not impossible to maintain a healthy relationship without sex, and there are so many people on here doing just that! It takes patience and understanding on both sides, and sometimes just an extra-special sort of guy.


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Re: A day in the life of this shit

Post  EviE°Bee on Sun Oct 06, 2013 5:07 am

I feel ya, litterally. I try and have sex on "okay" days but its hard to enjoy because im gonna end up paying for it after. It sucks going from anytime sex to 1-2 times per month.

I have days where i try and stay positive, do the research, maintain mental stability, pray for the good and bad things. Other days i curse my life, i think im gonna go crazy, i think im doomed to spend my life in pain, i dont pray, i cry and get anxious.

I agree with Elc, its taxing on both parties but it can be done.


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Re: A day in the life of this shit

Post  mary jane on Sun Oct 06, 2013 1:35 pm

Have you tired giving yourself a break from dating until you explore more options to get better?
I know it sounds like pointless advice, but having to deal with the pressure of an illness PLUS the pressure of having to maintain a relationship is too much to handle when there are other things like school/work on the line !!

Try everything there is, you have the general symptoms, I for one have throbbing and my entire bartholin gland hurts. As in every RAMIFICATION of it (it's like an octopus). So i have discomfort walking and have to hide it at uni.

Save some money to go to acupuncture, buy magnesium, vit C, it won't hurt.
some ladies have said they gave up all SLS-containing products and it worked for them.
Buy organic Dr Bronner's soap and something super-mild for the vulva, with zero alchohol or perfume.
mary jane

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Re: A day in the life of this shit

Post  mary jane on Sun Oct 06, 2013 1:37 pm

change your laundry detergent,shampoo and shower gel as well.
mary jane

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Re: A day in the life of this shit

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