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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 …

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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 …

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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 …

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Can anybody help me!!!

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Can anybody help me!!!

Post  mandy20 on Wed Jul 08, 2015 3:22 pm

Hello.. I was just looking for some support. I'm feeling really distressed and lost. I've never been on a forum before but I'm feeling really desperate. I had a severe yeast infection 3 months ago and the symptoms have never really gone. I have vulva burning that comes and goes and my area feels sore and sort of gritty (don't know how to explain it) last night I was awake and it was awful! I had burning and it was on my legs and near my bum.. It can sort of feel numb.. on top of this just near the entrance of my vagina, maybe near my pelvic floor muscles feels weird. . When it started I felt like I was wetting myself and even my underwear felt wet, maybe because of the burning sensation. It's so weird and no one knows what I'm talking about. It's been like mental torture because it all comes and goes and goes better then flares up.. almost like it's all over the place. I am just waiting for an ap with a gyno but I just know it's vulvydonia and I'm feeling so distressed at the moment and feel like I'm going to lose my mind


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Re: Can anybody help me!!!

Post  BpCookie on Wed Jul 08, 2015 4:08 pm

Hello sweetie, I am so sorry your going through this. I totally understand what your going through. I used to feel so depressed, wanted to die and would lay in bed crying all the time. I let this terrible thing take over my life. I was miserable to be around. I was angry at the world and when I wasn't yelling, I was crying. After seeing countless Dr.s and specialists and using countless ointments and trying different pain meds., I finally found a Dr. who knew what to do. After 4 yrs of hell, two surgeries and 4 procedures I'm finally am feeling 50% better. I used to have burning inside the opening of my vagina, around my vagina, along my episiotomy scar (sp), down my butt cheeks and inner thighs. Now I only have burning around the opening of my vagina and a little ways inside but its not as bad as it was before. I still have to take Lyrica every day and that usually lowers the other burning. I still have some bad days but I have learned to live with it.

When you see your gyno make sure she does a YI, BI and UTI test and also ask her to do a biopsy. For now, use an ice pack to help ease the burning. About 20 mins. on and 20 mins off. You don't want to freeze the skin. Also try A and D ointment. I re-aply it after every time I urinate. Also you can try some products over the counter that will help with the symptoms that you have.

Hang in there honey. We all know what your going through.

Big hugs to you


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Re: Can anybody help me!!!

Post  mandy20 on Wed Jul 08, 2015 4:22 pm

Hi cookie thankyou so much for your reply. I'm so glad you have had some success in your awful journey. It truly is an awful illness! I feel so lost and despairing it's unreal. I live in hull.. England and I can't find any support networks or anything. When all this started I also had burning inside my vagina but it went (well I hope it has) you can't ever get your hopes up about a symptom going because it returns.. If you know what I mean. I just don't know were to turn and I'm sure everyone with this feels like that or has at some point

Love mandy xx


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Any better?

Post  jennyk2 on Fri Jul 17, 2015 10:53 am

Hi Mandy, hope you are feeling a bit better. It's over a week since you posted. I also live in UK, near Leeds. I am quite a lot older than you but suffered a lot from thrush in the past. I assume you have already tried Canesten pessaries ot taken Diflucan tablets? You can get both over the counter at the chemist or on prescription.
Have you tried applying plain yogurt straight from the fridge? It's very soothing. Also I used to immerse a tampon in plain yogurt until it swelled up and then I would insert it. Change it regularly for a freshly soaked tampon.
Best wishes


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Re: Can anybody help me!!!

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