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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

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Yesterday at 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


Hi from the newb

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Hi from the newb

Post  ButterflyLiz on Fri Nov 18, 2011 10:49 pm

My name’s Liz, I’m 26 and I’ve had vulvodynia for 10 years – looks pretty scary when I write it down! For a lot of that time it has been manageable and there have been times when it seems to have almost gone away completely…almost but not quite.

This year has been a challenge. In January I had a mega flare-up, worse than anything I can remember. We’re talking stabby, burny, electric-shock hell. It blindsided me – things had been ticking along reasonably smoothly on the vulval front up until then and all of a sudden I couldn’t even get out of bed, let alone drag myself into work. Things did calm down, albeit slowly, and my pain is back to more of a normal pattern now, but it left me really scared.

Once the physical pain started to subside, I started to have panic attacks, which I’ve never experienced before, and generally felt stressed & anxious all the time. It didn’t take me long to realise that this was a reaction to the sudden onset of the horrendous flare. I went on a three month course of antidepressants which helped me a lot but I’m still way more anxious than I used to be about all things vulval.

In a way though, it was a bit of a push to me to accept this condition as part of my life and make the necessary adjustments, which I had been struggling to do. I am fortunate to have found a wonderful consultant several years ago who has helped me enormously (not least of all by putting me on pregabalin – lifesaver), but I think on some level I still wanted to pretend that I didn’t really have this. Now I’m having CBT to help with the anxiety, physio sessions & seeing a neurologist next week, after being on his waiting list since January! I’m also going to the VPS conference in London in December with my partner. Is anyone else going? I’m really looking forward to it.

Anyway, so glad to have found this forum, not sure why I haven’t looked for something like it before.

Best wishes to you all xx
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ButterflyLiz

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Re: Hi from the newb

Post  skippypie23 on Wed Nov 30, 2011 1:14 pm

Dear Liz,

You have clearly been extremely strong and constructive in dealing with this. And it's truly wonderful that you have found a consultant who can actually HELP you! That's a huge deal!
I haven't even been able to find anyone who even considers vulvodynia when I bring in my research and describe my symptoms.
You mentioned pregabalin; does Lyrica help with the vulvar pain or is it mainly for anxiety?

It's awful how much this condition can affect you on a psychological level. Sometimes I feel like the pain is being caused by my fear of hurting, if that makes any sense. I really hope you keep getting better, and please keep us updated with your progress with the neurologist!

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Re: Hi from the newb

Post  ButterflyLiz on Sun Dec 04, 2011 8:21 pm

Hi Skippy,

Thanks, yes, I guess we tend not to give ourselves enough credit for how strong we actually are to deal with all this crap! And then it comes as a surprise when it all gets too much…

Anyway, I agree, I’m very lucky to have a knowledgeable and compassionate consultant. It’s nothing short of tragic that the same can’t be said for every woman with v troubles. My heart really goes out to you. Is there any option for you to try and see someone in the UK? I’m not too sure what the options are there.

The lyrica is 100% for the pain. I’ve been on it for about 3 years now and it slowly but surely reduced the severity of the pain. For about a year or so I was *almost* back to normal & could have sex if I was careful. It was when I came off the lyrica for a few months that I had the wicked flare-ups so I’m well and truly back on it now!

It totally makes sense that it feels like the pain could be caused by your fear of it hurting. It’s likely that to some degree your pelvic floor muscles are unconsciously tensed all the time against the pain, which actually will increase the pain, so re-educating your muscles down there to be relaxed all the time will probably help (I’m in the process of doing this). However, I don’t think that this is the full story. It seems like most women need to approach treatment from several different angles at once.

Thank you, I have had a really good few weeks pain-wise and will post something more detailed soon. All best wishes to you, and feel free to ask if there’s anything you wanna know.

xx
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Re: Hi from the newb

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