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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 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

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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

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: 5

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

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


Help Please I am O' so Confused

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Help Please I am O' so Confused

Post  Natty on Wed Dec 07, 2011 5:30 pm



I have Interstitial Cystitis which I have been dealing with nonstop since May. It is a condition where you have to pee all the time. In addition to this and I apologize for TMI but I have this awful arousal feeling in my clitoris and anus and I DO NOT want sex when this happens. It doesn't burn but it is so annoying it can make me cry. It is like those areas are over stimulated. Is this a form of volvodynia? My doctors don't know what to do with me... and to make it worse I have side effects to every anti depressant I take to help with this. Any idea what this is or how it could be related to VV?

Also, I am going on a low oxalate diet to see if that helps my Interstitial Cystitis. Do you have any suggestions on supplements to help reduce oxalate in my system?

Natty

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Re: Help Please I am O' so Confused

Post  Sarah001 on Thu Dec 08, 2011 12:06 pm

Most people with IC have very tight pelvic floors so it's possible your PF is pinching a nerve and causing this sensation. It isn't strictly V as it's not pain in the vulva but could still be coming from the same causes so I'd ask about seeing a Women's Health Physio about it to see if they can establish if that's the problem for you.
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Re: Help Please I am O' so Confused

Post  mars215 on Thu Dec 08, 2011 6:41 pm

Hi Natty,

I have IC, VV, and PFD... but I started with IC. In the beginning, I noticed a tingly but not painful sensation in my clitoris area as well. I thought it was a UTI, but the tests would come out negative. So, I understood it to be a type of flare from the IC. When I later saw a urologist, she diagnosed me with the VV and PFD. Not a clinician or anything, but I think that area can be related to IC or VV. Do you drink coffee often? I noticed that I would get that sensation the most in that area after drinking coffee.

I know this is prolly the last thing you wanna do, but maybe you can keep a log of foods that give you flares, and specify where the flares are. I know some types of foods trigger a flare in my left pelvic area, whereas other flares happen in my vulva area.

I am also on a low-ox diet... and it has eased me symptoms... I've also been taking fish oil capsules which can help with the inflammation...

Hope this was helpful...

mars215

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Re: Help Please I am O' so Confused

Post  Sarah001 on Thu Dec 08, 2011 8:33 pm

I do drink coffee yes with no increase in symptoms, mine isn't related to diet at all and nothing makes any difference in that respect. Done the low ox diet too along with calcium citrate and no reduction in symptoms from that, tried fish oil capsules with no effect and also had a try at the anti inflammation diet with no help whatsoever. Mine's very pelvic floor related and I start with a new physio in the next 2 weeks to work on that. I have lax ligaments so my muscles go loopy trying to stabilise and my pelvic floor is literally hanging on for dear life. I had a resting tone of 20 when I first had it checked and as it's supposed to be 2-3 mine's clearly waaaaay too high! Shocked There is another member here with IC who may be able to discuss it with you, look for posts by Aussie if you get time. There's also a discussion ongoing about Dr Robert Norse if you look for it and that's a diet related thread too. Some people notice a change from diet and others don't, I can eat or drink what I like and mine stays the same but the slightest tensing of my PF sends my pain levels through the roof.
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Re: Help Please I am O' so Confused

Post  Aussie on Thu Dec 08, 2011 8:40 pm

try the ic diet and give it 3 months. The diet can be found at the ic network website. I have most of the symptoms you describe. Arousal feeling etc. I am on herbs which has cut out clitoral pain and a large percentage of vulva pain. I have been dx with ic vulvodynia and pfd. Physio helped with sex pain now sex feels good. Daily pain i am targeting with herbs and diet. Low ox had no effect for me. Always here if you want to talk. Ic network has a sub forums for each treatment option. Xo

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Re: Help Please I am O' so Confused

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