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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


Worsening vulvodynia, only 21

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Worsening vulvodynia, only 21

Post  katj21 on Sun Jul 05, 2015 6:05 pm

Hello - bit of a long one. I'm 21, from the UK and was first diagnosed with vulvodynia at 18. I had previously had what I think was something like Chronic Fatigue Syndrome (exhaustion, nausea, muscle pain and skin soreness on and off, worsening over my last 3 years of school but doctors never gave me a diagnosis as I wasn't severe enough). I had this and recurring thrush before my vulvodynia started so I wonder if it was linked to either of these. It came on as very severe and sharp pain on touch and the doctor told me I had vulvodynia which I was really upset about, googling it when I got home the words 'no cure' sure jumped out at me. This was around August and the pain continued until I went travelling the next May, within the first week the pain disappeared (vitamin D from the sun? salt from the sea? using natural travel shampoo instead of chemical? lack of stress? trust me I've racked my brain about this). After about a month it began to feel uncomfortable and sore but this was nothing compared to it feeling like knives. Then since just after Christmas the awful sharp pain is back and worse, this time it's not only painful but has been swelling up like big blisters when I have touched to check pain (which goes down after some hours/overnight) and in the last couple weeks have felt burning pain even when not being touched.

I'm trying to eat a very strict alkaline diet as I've read about the body working at its optimum state on an alkaline diet. I add coconut oil to my smoothies in the morning, take plenty of vitamins and minerals, have been doing epsom salt baths this week. I'm trying hard but I can't help but feel like I don't have a clue what I'm doing. My alkaline diet contradicts things i've read about a low oxalate diet helping, as spinach (which I'm eating a lot of as its so alkaline) is apparently high in oxalates. I also don't know how often or how long I should try the epsom baths or whether to switch to baking soda baths as this may apparently help? I've read about the healing powers of raw food diets, about why you shouldn't eat any raw food, the acidity of meat and fish and eggs, but candida problems requiring you to cut out all fruits and sugars. Whatever I follow in the end feels like a guess, I just don't have a clue what I'm doing and I hadn't realised how much comfort food was helping me through the day because now I'm only eating rabbit food I find myself getting more and more depressed.

Is anyone young and afraid of never having a relationship/normal life?? Or depressed because you feel like you're trying hard but truly don't know what you're doing?? There's women who have dealt with this for a LOT longer so I know I'm lucky but it's knowing that it might not go that's scaring me. I don't feel like a normal young person.

katj21

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Re: Worsening vulvodynia, only 21

Post  Funchik93 on Mon Jul 13, 2015 10:58 pm

Hi, my name's Fany, I'm 21yo Smile
I entered your message and wanted to offer my support as being of the same age suffering from a similar condition..
I've had my vestibulities diagnosed at 19 (when I first started having regular intercourse). I know for a fact that I've had it at least since I was 17 - because that was the first and only time I tried sex before I became 19 and also because I've always had problems and pain putting in tampons and wearing skinny jeans.
I'm only telling you all of this to try to show you you are not alone - I also struggle with feelings of "not being normal", especially with having a boyfriend for the past 2 years (who is a bit older than me and had been sexualy active before we started dating). I dealt with depression and I also felt like I'm broken and can't be repaired...
What I wanted to tell you, referring to the last part of your message - you are a normal young person. Many people suffer from various problems, at least our condition has a solution and treatments Smile I went with the biofeedback at first. Unfortunately, with my vestibulities (I've got a pretty severe one - a lot like you described, but also not being able to sit at times and the thing with tampons, skinny jeans and of course - painful sex) This didn't work and I decided to have the vestibulectomy surgery. I'm currently recovering from it, day 16 post op. Trying to stay positive! Smile
I'm not saying you have to have surgery to deal with vulvodinya, it's a personal decision, but I wanted to give you my insight as a young person going through the same issue.
I believe you can have a normal life and I've proven to myself that you can have a great relationship even with this problem - you just have to find the right and understanding partner. To me, this condition taught me that a relationship can be based on love and support, even at a very young age.
I hope I was able to send you a little bit of optimism and I send you the very best wishes!
P.s: sorry if my English is not perfect, I'm not a native speaker Smile

Funchik93

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