Vulvodynia Support
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» Hope to all my suffering ladies
What has helped your Vulvodynia? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
What has helped your Vulvodynia? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
What has helped your Vulvodynia? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
What has helped your Vulvodynia? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
What has helped your Vulvodynia? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
What has helped your Vulvodynia? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
What has helped your Vulvodynia? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
What has helped your Vulvodynia? 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!
What has helped your Vulvodynia? 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


What has helped your Vulvodynia?

3 posters

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What has helped your Vulvodynia? Empty What has helped your Vulvodynia?

Post  Sebby (Admin) Sun Dec 20, 2009 8:28 pm

So, what have you found that has reduced your vulval pain? Have you found anything yet which works? If so tell us!

I have found that sleep seems to help! lol actually I often find that when I wake up I dont feel much pain at all especially when I dont wear any knickers, I think this is due to the fact that nothing is touching the vulval area to aggrivate it and as soon as I get up and start walking and getting dressed it creeps up on me.

So along with this theory I only wear soft trousers, leggings and skirts.

I also only wear loose cotton knickers.

So what helps you?

Sebby
xxx
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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What has helped your Vulvodynia? Empty V-Pain

Post  Micki Wed Apr 14, 2010 12:58 pm

I just read your post about being in bed and it doesn't hurt until you get up! That's how I feel too!!

Micki

Posts : 2
Join date : 2010-04-14

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What has helped your Vulvodynia? Empty Re: What has helped your Vulvodynia?

Post  Sebby (Admin) Thu Apr 15, 2010 6:16 pm

Yep, its funny how sleep cures most things.

Not only is it relaxing but you are not moving about agrivating your conditions!

I do highly recommend not wearing knickers in bed though unless of course its at that time of the month!

Thanks for joining and hope to hear more from you

Sebby
xxx Sleep
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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What has helped your Vulvodynia? Empty Vulvodynia Pain

Post  Micki Fri Apr 16, 2010 11:07 am

So far, i haven't found much relieve from V-disorder. Not wearing clothes is a big plus however that being near impossible, not much out there. I tried the tea soaks, but to no avail. I did see my dr. the other day who has been treating me and she prescribed gabapentin 600 x 3 a day, and when i went to the pharmacy it's cost was a staggering $129.00 which I could not afford. I have been taking the gabapentin for several yrs. No result there! Also, a compound amitryptiline that didn't bring any results.Basicly loose pants that don't touch the vulva seem to help for a little while oh with no underwear at all!! Even wearing the most softest underpants don't make any difference either!! Having a support group in place is a huge plus because at least I don't feel as isolated!
I've noticed that when mentioning this problem with a few close females, they look at me like it's all in my head or I fear they think it is a bad girls disease Evil or Very Mad Bye for now!

Micki

Posts : 2
Join date : 2010-04-14

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What has helped your Vulvodynia? Empty re treatment of Vulvodynia

Post  jules Sat Apr 17, 2010 1:42 am

Don't give up on relief. I believe it is possible. I'm so sorry to hear you were not able to afford the gabapentin. No health insurance? I am taking 3000 mgs of Gabapentin per day and have been for at least a few months. The gabapentin has relieved the symptoms somewhat (pain reduced quite a bit) but, not completely. Recently, at my request, I was referred by my doc to a pain clinic. I have had two spinal blocks. neither have helped, in my opinion. However my doctor just prescribed Lyrica. Lyrica is in the same family of nerve blockers. I still take 3000 mgs of Gabapentin. I started the Lyrica about a week ago and i have been relatively pain-free the last few days. Now, I don't know if the Lyrica is responsible for the improvement. But, it may be. Months ago, i was at the point where i was in constant pain every day. the pain was horrible, even when i woke up. i'm thinking the sleeping helps because there is no clothing pushing up against the Vulva. I mentioned on this site I bought a foam donut to sit on for work and home. this has helped quite a bit as well. My symptoms have improved over the past few months. I do have several days in a row where i am in pretty bad pain, but, nothing like it was. So..if you have health insurance, i recommend a pain clinic. if not, are you eligible for help? I don't know where you live. cool gel packs can give temporary relief. keep gel packs in the refrigerator. i may get a third nerve block if this lyrica does not work. the doc at the pain clinic shot steroids and anesthetics into two lower nerves. he did not hit the prudenal nerve yet. that nerve goes directly to the vulva. nerve blocks can help some. i'm not giving up until i have almost constant complete relief. btw..i have generalized Vulvodynia (pain all over the vulva)

jules

Posts : 225
Join date : 2010-03-17

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What has helped your Vulvodynia? Empty nerve pain blockers

Post  Sebby (Admin) Tue Apr 20, 2010 7:52 pm

Hi guys

Im am very interested to hear about the nerve blockers and anticonvulsants. Its something I have not tried yet and I will pretty much try anything!

Dr is still convinced its my hormones so am on mirogynon combined pill - only been on it 2 months but its not working. Not surprised really.

The whole treatment process is sooooo slow and frustrating in uk nhs. Each apointment is months apart and you are only trying one treatment at a time so after a few failed treatments its a whole year over! Its really frustrating me!! Mad

Anyway thanks for your contributions guys keep it up and good luck with your treatments.

Sebby
xxx Smile
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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