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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 …

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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 …

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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

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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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