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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: 10

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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: 4

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: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

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

A success story (fingers crossed and toes and everything else....) this is a long post

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A success story (fingers crossed and toes and everything else....) this is a long post

Post  Graceface on Fri Jan 13, 2017 11:02 pm

I thought I would post this because people rarely re-visit health forums when they are well, they get on with life for the most part. That’s a shame because I know when I was at my wits end with this condition I would have given anything for some signs of hope.

I was diagnosed with severe vaginismus and vulvodynia in 2008. Sex was so painful, I rarely had it. I had manged to have excruciating sex with my first boyfriend a handful of times, each time resulting in thrush like symptoms and days of soreness and burning. Sexual Health examinations were the worst, they didn’t happen, the only way they could take a smear, was for me to go under general anistetic. The nurse was sympathetic but couldn’t understand it at first, assuming that like many young people, I was at it like a rabbit during Fresher’s Week and she could hand me a bag fruit flavoured condoms and off I would skip – this was not on her radar.

Then I attempted to sleep with someone I was seeing. He couldn’t get inside of me, he tried and I was ashamed and frustrated but I was in agony and even though I knew I wanted this my body had other ideas and my vagina shut up shop, refusing to play ball. He told me that wasn’t normal and although I now realise he was a total dickhead in many other ways,  that was the wake up call I needed and I went back to the sexual health nurse.

This time she listened because she knew what was wrong. I was referred to  the first of many a specialist, he was a kind man but I remember lying on the examination table, a nurse being called into the room and her trying to take my mind off of the searing, sickening pain, as the Dr attempted to examine me with a finger.  That was the diagnosis, I remember reading the letter of referral to yet another specialist, this time at a clinic in the city. It said my case was so severe, he had been unable to even examine me, I cried, I was always crying on this journey, everything seemed hopeless, All I wanted was to do the one thing that was supposed to be enjoyable, supposed to be the one thing everyone could do.  

So there were more referrals and pokes and prods and a particularly awful time when a nice group of medical students were invited to stare at me as well, at which time I wasn’t even consulted. In fact the advice and treatment I received for this was awful. Basically a nurse gave me a case with the hard, plastic, intimidating, free on the NHS dilators and told to give them a go and that ‘most people who come here have a partner’ and there’s more than one way to skin a cat. As I sat there in tears (as was by now the norm) I was not offered counselling, which anyone could see I was I need of, I was instead left to my own devices and expected to get on with it. I confided in no one, I was embarrassed, and as I’ve found, if you don’t have this condition it’s a very difficult one to understand.

For eight years, I just stopped thinking about relationships and sex, what was the point? No one would want me as soon as they found out and would feel I wasn’t interested in sex, which I was. During that time, I did join the FaceBook group connected with this forum (I think?) and there were some lovely, positive, inspiring people on there but after a while, I knew reading about it wasn’t helping me, so I buried my head in the sand and got on with other things.

Then I think one day, I thought sod it, I saw all my friends in couples and as I reached thirties, I knew I wanted that too, I took the sex thing as something I would be honest about, I wasn’t sure of my body but I wasn’t going to shy away from the fact that I have this condition and, I thought it probably wouldn’t happen for me but at least I wouldn’t hide anymore. My best friend (who by now I had confided in), bought me something online that was a little less horrendous than those things from the NHS. I attempted to use it, the pain was excruciating again and I so stopped but I just knew at that point, I wasn’t going to fear this anymore.

Last year I met someone and I told him straight off that I had this condition, he didn’t seem phased but I think didn’t really understand the impact or complexities of it. When we first spent the night together, I’d had a large pelvis tattoo done that day and so I used that as a reason we couldn’t have sex (it needed to heal), which although did mask the fact that I was scared it just wouldn’t happen for me, knowing that it wasn’t going to be attempted, reassured me. We did other things instead and felt comfortable with each other.
I liked him a lot and we hung out more, it was around this time I bought some Yes organic lube, which worked wonders for me. I felt safe that it meant I would be wet enough and so we finally had an attempt with LOTS, like a ridiculous amount of lube (this stuff is water based and so runny, you could probably flood a small village with one tube). The searing pain started, the sickening tightness, I felt myself tense up and thought, ‘it’s not going to work’ but IT DID!! I’ll never forget that, it sounds so stupid and sentimental but the look on my partners face, the way I felt, I couldn’t believe I was able to do the one thing I had wanted to do for so long and everyone seemingly takes for granted. Yes, it was uncomfortable but it happened.

Shortly after, like a week later, I was due a smear. I was still so frightened. I covered myself in lidocaine gel I had been given and went to my Dr. I should add, that I had moved to a new area and these Drs and nurses are SO different, they actually listened to me for once.  I actually managed a smear test! It must seem bizarre to be elated about something like that but I was. The Dr (who specialises in women’s health) actually examined me with a finger (which she was able to do) and told me about Pelvic Floor exercises. She told me I had good muscles and I should try these myself at home.

It been some months now and although the person I met and I probably aren’t to work out, he has unrelated issues, namely being a bit a crap boyfriend in other ways! we are able to have sex multiple times in a session and we now don’t even need lube. I actually cannot believe it, I honestly cannot believe it. My vaginal area still feels sore a lot of the time, I notice it, if I get dehydrated it’s pretty bad and alcohol and coffee seem to make it worse, but for now, it seems to have gotten used to my partner, or at least I don’t have the thrush like symptoms after sex…it’s almost as if it has just given in and been , ‘Oh, alright then, I know this one, he’s ok, I’ll let him in’.
I have no idea why this has happened for me and I also know it could all come flaring back up again but for now I just wanted to let people know, if you are struggling, if you are suffering with this, if you think that you’ll never have another relationship in your life because of this crap condition, please, please know things can get better, there is hope and I never thought I’d say that.


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Re: A success story (fingers crossed and toes and everything else....) this is a long post

Post  A2015 on Thu Jan 19, 2017 10:53 pm

Hi Graceface,

I just read your post as I return to this forum for the same reasons you have – I never forget how badly this crap condition affected me and wanted to share my experience for those suffering to keep hope, as I have a success story too!
In fact, my 'success' can be attributed to virtually the same circumstances you have had recently with the person you're seeing. i.e there's no real one thing to explain your recovery other than the miracle of trying it with someone you trust and your condition significantly improving (for me, vulvodynia is now not part of my life at all).
I just wanted to say I'm so happy for you Smile
For anyone on this forum going through a really tough time with this, don't lose hope. I, too, never thought I would say this but it is possible to get better.

A2015 x


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