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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

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

Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris


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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Sat Feb 10, 2018 12:18 am by rockylife


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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.

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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

nothing is working!

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nothing is working!

Post  kellybeth on Wed Aug 08, 2012 10:11 pm

hi all first off i would like to say how glad i am to find a website like this.
i have an 8 year old daughter,at the age of 3 she started having complaints with her down below. after countless times visiting my local gp i was told the same thing,she has thrush or sistitis (sorry about the spelling) she would be up in the night crying saying it was burning and stinging. this carried on untill she was 5 years old then things got worse to the point where she was pulling her hair out in pain screaming for me to help and to take her pain away. it wasnt until last year she was finally referred to a specialist at my local hospital. we tried all types of remedies such as creams,gels,meds,ice packs nothing worked! she finally referred my daughter to uclh where we was told bethany had extremely sensitive nerve endings she referred my daughter to great ormond street to start pain management which is where we are now.this is where we finally got a diagnosis that we had waited 5 years for,it is vulvodynia. her consultant there has put my daughter on 5mg of amitriptyline this also did not work. she had another appointment with pain management 3 weeks ago and he has now upped her tablets to 10mg,this also dont block her pain. she is still up nearly every night for hours on end crying and uncomftable. i just feel like i am hitting a brick wall all the time. i hate seeing my 8 year old like this and im really worried for her future. sometimes it just seems these doctors just dont understand Crying or Very sad

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Re nothing is working

Post  Sunflower82 on Fri Aug 10, 2012 7:52 am

I'm too sure what to suggest, but just wanted to say that this is a horrible condition to have and I feel for you and your daughter as no 8 year old should have to go through this. In term of medical professionals I think everyone will have a story to tell. It took me over ten years to get a diagnosis. I had frequent acts of cystitis when I was young between 8-12 year howwever all I needed was a salt bath and it would go away, shame that doesn't work anymore. Over the last year I have seen a women health physio who has been really helpfull, as your daughter is so young this may be difficult as it does involve internal massage, but she did look at other muscels eg my tummy muscels were really tight which I had no idea, I'm also seeing a chiropractor who is running a study about vulvodynia. Which is interesting as she will also ask about your birth and development as a child. My pelvis is not on the right place and a few other things. Other option is to look at diet is she eating foods which are acidic, does she drink squash or fruit juice, fizzy drinks ?

Hope this helps



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Re: nothing is working!

Post  kellybeth on Mon Aug 13, 2012 11:00 pm

thank you so much for the tips i will defo give them a try. and thank you for taking your time to writ to me, really appreciate it

kelly xx

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Re: nothing is working!

Post  ButterflyLiz on Tue Aug 14, 2012 9:53 pm

Hi Kelly,

I am so sorry your daughter is having to deal with this condition. I hope you have a breakthrough soon.

I thought I would tell you the things that have helped me in case they are any help, though I guess there are limits on the amount of meds you can give kids, I’m afraid I don’t know about that side of things.

So I take 150mg lyrica (also known as pregabalin) per day and this helps to keep my pain at a manageable level. Before this I was on amitriptyline and that didn’t help me.

Also I use a topical anaesthetic down there at night to help calm the nerves, I use instillagel which is normally used to insert catheters and I get that on prescription.

Hope you find something that works soon


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thank you

Post  kellybeth on Thu Aug 16, 2012 11:03 pm

thank you very much liz i will look into the cream xx

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Re: nothing is working!

Post  Loulou on Sun Aug 19, 2012 9:55 pm

Hi Kelly - it's heartbreaking to read your story. I so hope your daughter can find some relief soon.

Similar to sunflower's comments, I found a chiropractor really helped me as my pelvis was misaligned. Maybe worth checking if your daughter has an alignment problem somewhere in her back or pelvis??? (this might possibly be a cause of over-sensitive nerves as bones out of line can effect surrounding muscles, ligaments, tissue and ultimately nerves?? - its all connected)

Also I found in the early days when my pain was really bad that accupuncture helped. This might be scary for a child but i found the needle insertion really didn't hurt and it did seem to help.

Hope you find something that works.

Last edited by Loulou on Sun Aug 19, 2012 10:00 pm; edited 1 time in total (Reason for editing : explain why nerve issues might link to skeletal issues)


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Post  bCherie on Tue Aug 21, 2012 2:17 am

Hi Kelly,

It sounds a lot like it might be caused by 'nerve strain'/internal organ strain.
If creams and tablets etc have no effect. This was my experience.

Basically your internal organs can be out of alignment. If they get pulled up and back this can cause all the never endings in the pelvic region to be 'pulled' up and back too as they are all connected to your uterus. And this can cause all sorts of horrible nerve reactions (burning and stinging around the vulva AND deep stabbing pains in the vaginal passage and uterus). I often feel likke my 'insides' want to drop out too which is a painful sensation.

This can be cause by bladder infections and kidney stones BUT as in my case it can be caused because you are walking, sitting and going to the bathroom wrong (I hold muscle tension in all the wrong places something that can be re-taught). If this is the cause of your daughters symptoms a vulvadynia trained physio should be able to relieve her symptoms and teach her how to use her muscles right.

I don't know if you have physio's in america (perhaps you call them chiropractors) but my physio was trained in vulvadynia treatment in the USA so if you ask questions relevant to my comments above you should hopefully find someone that can help!

As a note similar problems can be caused by having a few discs in your lower spine out of alignment.
You can also have pelvic floor pain (that feeling of insides dropping out) caused by food allergies causing damage to the digestive tract. I had a girlfriend with a little girl with similar problems that was caused by an allergy to salicylates in food.

Good luck finding answers for you little girl poor darling!


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Re: nothing is working!

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