Vulvodynia Support
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» Hope to all my suffering ladies
Worsening vulvodynia, only 21 EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Worsening vulvodynia, only 21 EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Worsening vulvodynia, only 21 EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Worsening vulvodynia, only 21 EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Worsening vulvodynia, only 21 EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Worsening vulvodynia, only 21 EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Worsening vulvodynia, only 21 EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Worsening vulvodynia, only 21 EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Worsening vulvodynia, only 21 EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Worsening vulvodynia, only 21

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Post  katj21 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

Posts : 1
Join date : 2015-07-05

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Worsening vulvodynia, only 21 Empty Re: Worsening vulvodynia, only 21

Post  Funchik93 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

Posts : 4
Join date : 2015-07-13
Age : 30

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