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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

Hello!

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't find anything positive

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Can't find anything positive

Post  mmorgan on Wed Sep 28, 2011 4:12 pm

Why is it when you search "Vulvodynia" you can't find any success stories? I only found one and of course that person is selling a product. I want real success stories!

Sure my pain has stumbled down to a tolerable level but it's still a punch to the ego! I catch myself analyzing women around me thinking "how lucky is she that her crouch isn't on fire". Of course I'm noted terribly for doing that since when I first found out I had HSV-1 I would count 5 people and think "Well there's 1 person in that group just like me". Sure this is manageable and thankfully I'm not knocked out with the pain I dealt with at the beginning but I can't help but think how it felt to feel nothing at all and also sort of "forget" you have a lady part.

Another doctor's appointment Monday, new doctor, new start. I'm going to go crazy if this one can't shed light! Tired of being pushed to the side, I need relief, this problem is real, this pain is real, listen to me! & sometimes your going to have to think outside the box, you should want to fix me not push me along and let me suffer!

I feel for every single lady and their significant other. This condition is hell!
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Re: Can't find anything positive

Post  ilovebaxter1 on Wed Sep 28, 2011 6:43 pm

I completely agree with you!!! I look for sucess stories all the time and can never find anything. I am always saying to my best friend how lucky she is because she is comfortable..but I dont think she understands my situation that much Shocked I get cold sores from time to time and seriously thought that is the worst thing that could happen to me. I complain so much when I get them...i would honestly LOVE to get rid of this problem I have and I would never complain about a cold sore again lol. When i'm at work I always am looking around thinking..hmm i wonder if anyone else here has a condition like me? I feel like such an outcast -_- and the worst part is not being able to talk openly about it since it's in such an awkward area.

GOOD LUCK at your appointment and post how it went:)

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Re: Can't find anything positive

Post  Sarah001 on Fri Sep 30, 2011 5:20 pm

I've found some in the past, you do have to really look for them though but think about it, you get your life back and the V is gone so how many women in that position would report back the success? Not many, they'd be too busy getting on with things. It really depends on the source of the problem as to how it should be treated, remember Vulvodynia isn't really a diagnosis it's just a description of symptoms so search for the cause is my advice.
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Re: Can't find anything positive

Post  mmorgan on Tue Oct 04, 2011 3:03 pm

ilovebaxter1 wrote:I completely agree with you!!! I look for sucess stories all the time and can never find anything. I am always saying to my best friend how lucky she is because she is comfortable..but I dont think she understands my situation that much Shocked I get cold sores from time to time and seriously thought that is the worst thing that could happen to me. I complain so much when I get them...i would honestly LOVE to get rid of this problem I have and I would never complain about a cold sore again lol. When i'm at work I always am looking around thinking..hmm i wonder if anyone else here has a condition like me? I feel like such an outcast -_- and the worst part is not being able to talk openly about it since it's in such an awkward area.

GOOD LUCK at your appointment and post how it went:)

I'm glad you understand how I feel, even though it's a sucky thing to feel. Razz
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Re: Can't find anything positive

Post  mmorgan on Tue Oct 04, 2011 3:55 pm

Just went through my e-mail from QualityHealth - Women's Health. Awkwardly there was a link to an article of Vulvodynia.
http://www.qualityhealth.com/news/genital-pain-not-uncommon-among-women-survey-23821?rf=59050&mc=MzY0MDg0Mjc.&emailPID=109999&ct=36921

A recent clinical trial found that one antidepressant, called desipramine (Norpramin), and lidocaine -- used either alone or together -- appeared no better than inactive placebo pills and ointments. On average, women's pain improved over three months whether they got the real treatment or not.

There's hope and I'm thankful that at least someone is writing an article to get this condition out there so I will be sending a thank you note to them asap.
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Re: Can't find anything positive

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