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» I don't know what to do anymore
Sat May 26, 2018 5:21 pm by Aquaben

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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.

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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

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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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 …

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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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


One more for the pot

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One more for the pot

Post  ves on Mon Mar 21, 2011 2:03 am

Hi there,

Seems there's a new one joining every day now so thought I would take the plunge and say hi. It will be nice to talk to others with similar issues....

So, I'm 27, live in London, and was diagnosed with what was then called vestibulitis when I was 17. So far 10 years and no change despite every treatment under the sun- canesten (even though no thrush, thanks doctor)hormone gels, emollients, cortisone etc. Funnily enough when I was on the umpteenth visito to a new gyno years ago for this, she didn't have anything to add about the vestiublodynia, but discovered I has PCOS which was useful I suppose! One thing I haven't tried is any PT, any kind of biofeedback, dilators etc- reason being that I haven't so far felt I needed them or that my pelvic floor is particularly screwed up. However I may need to rethink that (see below!)

I know the research is still pretty patchy, although I would assume that I have the primary or congenital version, as my pain was not precipitated by any type of infection as far as I can remember, although I do remember it beginning quite suddenly when I would feel burning after peeing for about 5 minutes, which is what first took me to the doctor. Thankfully that seems to have gone now but the essential symptoms (red and raw, basically) have never fluctuated regardless as far as I can tell of medication, cycle or anything else! I was put on amitryptylene (can't remember how to spell it) which sent me to cloud 9 for about 2 months after starting it before I got used to it. That was nice as I was incredibly happy, however it didn't actually help the pain !Laughing . Since then I've stopped it as the side effects (dry mouth, wooziness) got to me after a few years.

I was offered lignocaine 5% as well which is pretty great, I don't find the burning associated with it disturbing thankfully as I know some do and I don't have a reaction to it. my complaint is that it's not strong enough, if it really knocked the nerve endings on the head properly, it would vastly improve my sex life! I assume it's not produced in greater strength as that presumably wouldn't be too good for you if used regularly, sigh.

Anyway, my last relationship was ok thankfully, it didn't hurt too much and I applied lignocaine when it did. However I had a fairly horrific experience the other day- have just started dating again, finally got down to it, and um.... it turns out I can't really deal so well with anyone much er, larger, than my ex. In the end we just had to stop which was pretty embarrasing as you don't want to have to go into your gynecological history with a guy you haven't been with all that long, it's not the greatest pillow talk after let alone if you can't finish the act! I hadn't used lignocaine as I hadn't thought I'd need it but clearly I need to rethink that.

Anyway, I try not to get too despondent as I guess there's no point really, but as I know you'll all understand, this does get very frustrating at times and so I look forward to talking to everyone on here and hopefully having a look through and getting some tips.

Surgery does seem tempting at times, but then I read the horror stories!


Anyway, hello...

ves

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Re: One more for the pot

Post  noni on Mon Mar 21, 2011 2:19 am

Hey!

Welcome!!!

I would love to write more but I am super tired!Its late in this part of the globe!

Take care,
noni
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Re: One more for the pot

Post  ves on Tue Mar 22, 2011 11:46 am

thanks Noni Smile

ves

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Re: One more for the pot

Post  Sebby (Admin) on Tue Mar 22, 2011 8:00 pm


Hi ves and welcome to the forum

I have VVS since 13 when I first tried tampons and sex has always hurt to some degree.

I am currently trying the pelvic floor biofeedback option. I am using the home training kit from Dr Glazer's site Vulvodynia.com. It will be many months before I notice any improvement although unfortunatly I have developed an allergy to the electrode I place under my belly button! Thankfully im ok with the vaginal sensor.

I am also on Pregabalin and have noticed a small reduction in pain and shorter flare ups. I have been on 300mg for about 5 weeks. Dr said it could take up to 2 months to see the full effect

I have asked to be reffered to Whips Cross hospital as they have a dermo vulval clinic and am still awaiting the appointment

I deff think its worth giving the whole Pelvic Floor thing a go.

I have been told I need to start dating again (been single for 2years) by Dr Glazer and to regain my sexual self lol If there is a sexual self left lol

I would tell anyone I was serious about dating regularly about the V from the outset. I would also not rush into intercourse but learn to enjoy other aspects of sex again.

Its a scarey thought and one that I have not yet ventured into yet as I really dont know where to start! Good luck with your treatment and keep us updated also good luck with the dating Smile

P.S. read my video consultation with dr glazer post. It tells you what he said about the pelvic floor and sex and dating

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Re: One more for the pot

Post  ves on Tue Mar 22, 2011 10:17 pm

Thanks Sebby,

I will def have a look at the video consultation thread- interesting about Whipps Cross as well I didn't know about them! I think, yeah, I do need to bite the bullet and have a look at my pelvic floor. I think I've just been avoiding it because my general reaction to all this is hoping that if I ignore it it will go away or I somehow won't notice it, which is not very sensible really. I think it's because I just kind of resent its presence in my life so much I kind of want to show it what's what by just ignoring it (which I know is kind of childish and also clearly bonkers... Rolling Eyes )

Anyway I will definitely have to go about the dating thing differently if last time was anything to go by, and yes will keep you posted!

Anyway I'm off to read the rest of the board so I can 'meet' everyone.

God this is just such a stupid condition, you know? And it's not like walking around with a sprained wrist where everyone asks if your wrist is hurting and is careful of you and sympathetic. You can't just sit down with a group of strangers at a meeting, say, and say 'wow, my vagina really hurts today' and have everyone nod in sympathy! I think it's that aspect of it that annoys me most (which is why I'm glad I found this place!)

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Re: One more for the pot

Post  Mouse on Wed Mar 23, 2011 9:20 pm

Hey there and welcome!

Definitely give the physio a go, it's just nice to know what's happening down there. Physio has worked wonders for me =)

Maybe also acknowledge the bastard and attack it head on! There are some great resources for sex without penetration also.

It's awkward having a chronic pain condition of this nature. It does help to talk though, have you got a therapist? Most of us do, it's a crazy and frustrating condition, unloading all the frustration helps a lot. You could say to people you have pelvic pain, only the nosey or very stupid would ask further questions.

We are on FB if you would like to join, it's private and doesn't post to your wall. Sebby can hook you up with that.

So a huge welcome. I hope you find some helpful information. We're all doing the same thing every day and some of us are making great progress!

Vicki

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Re: One more for the pot

Post  naomi on Thu Mar 24, 2011 11:27 am

hello! welcome to the forum!

these girls are a bunch of nutters...but lovely nutters at that Smile

Nai xxxx
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Re: One more for the pot

Post  Sebby (Admin) on Sat Mar 26, 2011 6:05 pm


Yep it frustrates me too that I cant just come out and say "oh my vulvar really hurts today" like you can with other areas of the body but I do wonder if men with willy conditions feel the same? Im guessing they do...Hmmm wonder if there is a willy condition forum? lol

I've got my dermo appt through from Whips Cross, not till May but I did ask to be seen by the top consultant so I guess it would be a wait. I will let you know how it goes.


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Re: One more for the pot

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