Vulvodynia Support
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Vulvodynia Support

Does life feel like one huge pain in the Vulva??? I have created this forum so that women living with Vulvodynia (Vulva Pain) can have a place to share, chat and support each other.


The link to my research project is in the Announcements forum, please participate if you can!!
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Latest topics
» Hope to all my suffering ladies
Where do I go from here? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Where do I go from here? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Where do I go from here? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Where do I go from here? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Where do I go from here? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Where do I go from here? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Where do I go from here? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Where do I go from here? 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!
Where do I go from here? 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


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Vulvodynia Support :: Your Story

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Where do I go from here? Empty Where do I go from here?

Post  sailor_moon Sun Jul 05, 2015 5:43 am

Hi ladies.

I had a laproscopy at the start of the week to see if there were any internal causes of my vulvodynia.

Nothing the doctor could see would be causing it or my messed up hormones Sad

But...he did find endometriosis on the back of my cervix and treated it. He also found a weird discovery. ..my bowel is 7-9 inches longer than it should be! He said he isn't a bowel specialist but he does work in conjunction with one so he is going to send the photos to this guy and consult with him and we will chat about everything in 6 weeks. God, they

In the meantime where the hell do I go from here? I take Lyrica 150mg. ..can up it to 300mg and it still does nothing! Tried every lotion and potion available and they irritate me even more, steroids make it worse. I have not tried Amitryptilene so maybe that's next? But if Lyrica does not work I can not see why ami would....I know they work differently but you would think if it was nerves Lyrica would have helped a bit.

I am scared when I go back the doctor is going to tell me he can't help me and ship me out the door Sad I am trying everything. ...nothing works. My marriage is really starting to feel it too.....

I am currently trying a mixture of Evening Primrose Oil applied topically mixed with some Manuka Honey...has helped a bit with my itching. This combo has been much better for me than coconut oil, which doesn't do much for me except irritate.

Another thing, from being in hospital, the bastards put my frigging back out, now I am getting nerve throbbing pain in one vestibule all the way down my buttons cheek and my thigh...any suggestions on what could help with this? I had this nerve thing which comes and goes about 3 times a week, now it's constant almost. It is driving me insane.

For those who haven't followed my story, my main symptoms are itching all over, every day just about, with inflammation and vestibule burning that comes and goes and rawness.

Sorry for any misspelled sentences, I'm on my mobile.

Any advice would be so so appreciated. I feel like I am losing my mind. Sad
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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