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» 7 months since the diagnosis
Loneliness EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

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

» Help New Diagnosis
Loneliness 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!
Loneliness EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Loneliness EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Loneliness EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Loneliness EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Loneliness EmptyMon Apr 08, 2019 7:54 am by Jo44

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


Loneliness

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Loneliness Empty Loneliness

Post  Licii on Sat Apr 07, 2018 7:01 pm

Hi,

I'm new to the forum and I joined in to feel a little bit less lonely in this nightmare. I'm well aware of the fact that there are lots of women struggling with vulvodynia, but I don't really know any, so it feels as if I'm the only one.
Anyway, my name is Alice, I'm 19 and my vulvodynia started when I was just 17, but worsened a lot when I was 18.
Luckily I've found a gynaecologist who has lots of patients with vulvodynia and has cured or strongly helped many of them, but so far I haven't yet seen noticeable improvments on myself.
My burnig pain is pretty strong everyday, all the time, and depression is hitting real hard.
I was hoping to find someone in my same situation and gain a little comfort from sharing our experiences :/

Good luck to eveybody out there struggling everyday <3

Licii

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Join date : 2018-04-07

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Loneliness Empty Re: Loneliness

Post  sophiarp on Wed Apr 11, 2018 11:36 am

Hey Licii,

Welcome to the forum - sorry that you have to be here Sad I definitely share your feeling of isolation and have found that my diagnosis has taken a huge toll on my self esteem and mental health. I'm 23 and have had vulvodynia my whole life but only received a diagnosis last year (it's a long story!). You're certainly not alone in feeling this way, even though it feels sometimes like you are. It's so tough being the only one you know with this condition.. I hate having to constantly explain why my legs are cold (because tights and pants hurt!), why I need to sit on a cushion sometimes, why I can't use tampons etc. Tonight at a party my friend asked me if I could have penetrative sex yet. I told him that I can't and that this is a long journey and I don't know if I ever will. He told me that he admired my boyfriend because he (the friend) could never put up with being in a relationship with someone with my condition. It's so depressing, and the constant burning is only a consistent reminder of how bad it feels emotionally.

Alas, it sounds like you've got a great gyno. It seems to me like treatment is all trial and error, which sucks, but it's nice to have someone on your side who gets it.

Sending you love!

sophiarp

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Join date : 2018-01-07

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