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» How I cured my Vulvodynia!
New member need advice please EmptyYesterday at 11:54 am by Millie

» 7 months since the diagnosis
New member need advice please EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New member need advice please EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New member need advice please EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New member need advice please 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!
New member need advice please EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
New member need advice please EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
New member need advice please EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
New member need advice please EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

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


New member need advice please

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New member need advice please Empty New member need advice please

Post  PANDORA123 on Thu Feb 28, 2019 11:33 pm

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

PANDORA123

Posts : 2
Join date : 2019-02-28
Location : uk

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New member need advice please Empty There is hope

Post  bluesky on Sat Mar 02, 2019 10:00 pm

You can get better. You may have flare ups.
Medicine helps but managing stress, eating right, and exercise is also very important.
I am in the middle of a flare up myself and I am quite miserable.
Amitryptiline helped my pain but I could not tolerate the side effects.

I use vaginal valium/baclofen, ice, advil, klonopin, and gabapentin as needed (only taken it 5 times since November)

I just last week tried a trigger point shot. It helped for a few hours. Supposed to get 2 more.
I know and feel your pain. There's nothing worse in this world....

bluesky

Posts : 1
Join date : 2019-03-02

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New member need advice please Empty Re: New member need advice please

Post  emalita on Mon Mar 04, 2019 3:33 am

You can definitely get better if you find the cause of your pain or at least a treatment that works.

This page isn't very active though. If you want more support, I would recommend joining a vulvodynia Facebook group.

Good luck!

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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New member need advice please Empty Thank you

Post  PANDORA123 on Mon Mar 04, 2019 5:39 pm

Thanks for the replies. Im finding this all very difficult to deal with and im in a lot of pain. Ive only been taking amitriptyle for a week so don't think it has kicked in yet. Feel as if pain getting worse not better. I would like to sign up to a facebook group. Is there a way to make it private so that my facebook friends cant see it.

thanks

PANDORA123

Posts : 2
Join date : 2019-02-28
Location : uk

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New member need advice please Empty Re: New member need advice please

Post  emalita on Mon Mar 04, 2019 5:42 pm

The most popular groups are closed groups, not private. Closed groups are not visible on your timeline.

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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New member need advice please Empty There is a life

Post  scrumptuous on Fri Mar 08, 2019 7:11 pm

Hello,

I was originally diagnosed with Vulvodynia 28 years ago following a gynae op, when the hospital made quite a mess of me and then there was very little support or understanding about the topic.

Over the years, I have had numerous amounts of surgery, which they believed would eradicate the situation, injections into the area, a vulval skin graft, holistic therapy remedies, various different medications and seen more health care professionals than I can count.


Why am I sounding so pessimistic, well actually I am not, as I am simply trying to say that sometimes it may seem as though there is no hope or way forward. However, now at 60+, I have learned to live with this condition and it is now a part of me the same as any other, but I do live a fully active life in every aspect of the word, as will you. Yes I still have flare ups, but because I know the pain will not last at that level, I can cope and am able to concentrate on other areas, as you will to.


I have also recently started having massaged into the area and am seeing an amazing physio, who seems to fully understand and that was the other point I wanted to make. I feel that it is really important for you to have a good support network of friends, family, GP, pain management clinic and forums, where you feel fully understood and have trust in. I know from past experience that sometimes you can be surrounded by others, but still feel so alone, but believe me there are many of us out here that are survivors and have even beaten this condition.


There is hope and understanding and times have changed greatly. You will find how to manage this condition and you will continue to lead a fulfilled life and understand what helps and works for you.


I know this to be true, simply because I have.


x confused

scrumptuous

Posts : 5
Join date : 2012-09-12

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