Vulvodynia Support
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» Hope to all my suffering ladies
FB secret Vestibulodynia/vulvodynia groups EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
FB secret Vestibulodynia/vulvodynia groups EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
FB secret Vestibulodynia/vulvodynia groups EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
FB secret Vestibulodynia/vulvodynia groups EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
FB secret Vestibulodynia/vulvodynia groups EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
FB secret Vestibulodynia/vulvodynia groups EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
FB secret Vestibulodynia/vulvodynia groups EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
FB secret Vestibulodynia/vulvodynia groups 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!
FB secret Vestibulodynia/vulvodynia groups 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


FB secret Vestibulodynia/vulvodynia groups

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Post  LuLu81 Mon Sep 19, 2016 6:13 am

Hi all,

I'm new here and was searching for 'secret' FB page for Vestibulodynia. I've seen a few mentioned on threads here but I am unable to PM anyone until I have been a member of the forum for a week. So will contact someone next week Smile

Second to this though... does anyone know of any support FB groups for our partners? I found one here (facebook.com/groups/partnersofvulvodynia/) ....that's a CLOSED group, but closed groups still show up on your friends 'suggested pages' and I don't think my husband would be keen on joining one that may potentially display that to his mates. Would love to know if there are any secret support groups for men.

Thank you all...
LuLu Smile

LuLu81

Posts : 5
Join date : 2016-09-19
Location : Australia

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Post  Suzie Wed Sep 21, 2016 3:41 am

Hi l'm new to the group and have been diagnosed with Vulvonydia and Vestibulodynia. I need some serious advice on how to manage this.. can you help please?

Suzie

Posts : 5
Join date : 2016-06-29

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Post  LuLu81 Thu Sep 22, 2016 6:19 am

Hi Suzy,

I'm new to this forum too but unfortunately I have no solid advice yet (even after having Vestibulodynia for 12 years)! Still trying to figure it all out myself. There was a huge portion of that 12 years that I just gave up trying anything, had kids (painfully)... but now it's really affecting my marriage so I need to get this issue sorted.

I have just started looking through the topic posts in "Vulvodynia Support :: Celebrating the Positive" on this forum. You may find advice here. There are a lot of success stories! So many causes of this awful condition mean such a varied response to try different things. I'm currently on a low oxalate diet, taking probiotics, fixing 'leaky gut' etc... seeing if mine is 'gut' related. But I think I'm going to overhaul my shampoo/conditioner/body wash now.

All the best for you finding a result soon!

LuLu81

Posts : 5
Join date : 2016-09-19
Location : Australia

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