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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

No diagnosis yet

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No diagnosis yet

Post  Lill83 on Sun Apr 01, 2018 6:43 pm

Hi guys,

I wonder if anyone can help. I have not had a diagnosis of Vulvodynia yet but I’m positive it is what I’m experiencing. I can’t believe how suddenly and unexpectedly this has taken over my life. I’m 35 years old and have been single for around a year. I have just started seeing someone and at the beginning of feb I decided to go to my gp and start bc. I had been taking it for around 2 weeks when I was suddenly struck with a bad case of tonsillitis which is normal during stressful times (which lately has been stressful with one thing and another). I went to my GP and was prescribed antibiotics. I was also prescribed treatment for vaginal thrush as I always get thrush when I am on antibiotics. Sure enough thrush appeared but it was so severe I needed three lots of treatment to get rid of it. Ever since I have been burning and sometimes itching but it does not feel like thrush. It comes and goes and having sex with my new partner is almost impossible. I just feel like I’m on fire down below and in some areas quite painful too. I don’t know if this is some after effect of ready bad thrush or because of my bc. Any advice ladies. Thank you


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Re: No diagnosis yet

Post  Warrior2010 on Wed Apr 04, 2018 5:58 am

I developped vulvodynia after a pretty bad UTI in 2010. A few days after there was massive buning from the vulvar tissue and the doctor said it was a yeast infection and I took one of those OTC treatments. It made it worse! I went back and ahe said "It will just go away " ???? So instead  I got a gyne appoint through another doc, did those insertable probiotic ovules etc- after 1week of that it was worse- the highest pain I've ever had. It was the acid from the lactibacillis that further "burned the skin". So I went back to this gyne and I was prescribed a steroid cream for 6 weeks because he thought I had lichen sclerosis. Let's just say the most I could do was 2 weeks because the cream made even worse again! By then I'm in agony and decide to go to an acupuncturist to help with the pain. It brought it down by 30-40%. So acupuncture could help regulate any circulation and pain issues.  That would be my best suggestion to start with.  Also thwre is a probiotic tablet called RePhresh ( that's how it's spelled- not a typo...). It's just for women. Then please consider seeing a pelvic physiotherapist that's what saved me really. I still have issues but the problem all along was screwed up connective tissue and muscle dysfunction. Good luck and take care.


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Re: No diagnosis yet

Post  sarisbaris on Thu Apr 05, 2018 11:28 pm

Ok.. so I had unprovoked vulvodynia and provoked vulvodynia, chronic UTI, chronic yeast, lichen sclerosis, etc. I'm cured from it all. I followed the protocol by Anthony William.

According to Anthony, UTIs are caused by an unknown/currently undetectable strain of strep. Thrush is also caused by strep. It's a little confusing but lichen sclerosis is sometimes not recognized completely and that's caused by shingles. I think you're batting strep since of the UTI issues.

In my blog, under "necessary reading" I would listen to the shows on strep, lichen sclerosis and UTI (the UTI show covers more than just UTI)

If this is too much, I started coaching women and helping them create a protocol and it's really been working for them. So that's exciting. I'm not a practitioner, I don't charge. It's just the right thing to do since no one else has been helping. At least no one could help me except his info. And chronic pain really messes with your head so it's hard to see straight when you're in pain. I get it.

My email is on the bottom of my blog.

Don't give up!


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Re: No diagnosis yet

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