Vulvodynia Support
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» Hope to all my suffering ladies
Vulvadynia EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Vulvadynia EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Vulvadynia EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Vulvadynia EmptySat Dec 07, 2019 11:54 am by Millie

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

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

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

» Help New Diagnosis
Vulvadynia 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!
Vulvadynia 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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Post  Linda Williams Fri Jul 21, 2017 11:53 pm

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These are the medications my doctor has prescribed: nystatin, clobetasol, topiciort. Also lidocaine which insurance would not cover, purchased over the counter which had alcohol in it which was not listed in the ingredients which in turn caused even more burning!! When I saw him last week I was told to stop the topiciort & had a speciality pharmacy make a compound of baclofen, amitripriptine, & gabapentin. I knew it would burn more than likely and it does. This afternoon I discovered one side of the vulva...the edge was very red even a place on my leg. Again not covered by insurane. Anyway I called both my doctor & pharmacy. The nurse said it did not sound like an allergy since the entire vulva was not involved. I was also told other patients use it with no problems. The pharmacy had to consult with the other pharmacy. I do no soaps down there, dye free laundry soap double rinse, no panties at home, loose clothes, well you know the drill. Have any of you ladies used a medication like this??? Sex is not an issue as I am a widow, evenot if I attempted to I couldn't. I like all of you am sick of ice packs &! medication that doesn't help. I do trust my doctor, he is OB/GYN.specialist in urology. He said last resort vaginal injections, talked about biopsy at one time. In the back of my mind wonder if my bladder repair surgery plays into it although he said no. I have 2 slings on my bladder & urethra plush see real other proceures.
Hope to get some good advice!!!

Linda Williams

Posts : 6
Join date : 2017-07-21

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Post  mary jane Sat Jul 22, 2017 9:20 pm

Recurring infections like UTIs or bartholin cysts can sensitize the area according to my pain consultant circa 2014 when I saw her. It's not known why.
It sounds like you have either some minor nerve damage from the bladder surgeries or sensitized nerves. I recommend you do a lot of mindfulness and stress reduction to calm your central nervous system down, avoid any other further surgeries if you can and keep taking the medications and/or creams. Nerve pain can and does get better so don't give up hope Smile
mary jane
mary jane

Posts : 345
Join date : 2013-10-05
Location : UK

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Post  Linda Williams Sun Jul 23, 2017 2:44 am

Thanks for your advice! I have asked if my surgrey could playa part, the 2nd urology doc said no. I also have mesh in there. Silly question how do you accomplish stress reduction? I'be seen many people talk about physical therapy too.
How long have been dealing with this if I might ask and what treatments. Thanks Mary jane.

Linda Williams

Posts : 6
Join date : 2017-07-21

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Post  mary jane Sun Jul 23, 2017 7:45 am

Linda Williams wrote:Thanks for your advice!  I have asked if my surgrey could playa part, the 2nd urology doc said no.  I also have mesh in there.  Silly question how do you accomplish stress reduction?  I'be seen many people talk about physical therapy too.
How long have been dealing with this if I might ask and what treatments.  Thanks Mary jane.


MESH? Well no wonder you are in such trouble, poor you. In UK there has been a HUGE scandal revolving around mesh surgeries, they have caused pudendal neuralgia in a lot of women as a result of nerve damage from the surgery. I would go down the medication route if I were you, ..and show your "smart" OBGYN this article:

https://www.theguardian.com/commentisfree/2017/apr/27/vaginal-mesh-women-health-bladders-bowels-sex-lives-nhs-operations

http://www.bbc.co.uk/news/health-39567240


I personally have zero respect for OBGYNs and GPs, I think they should be thrown in a bunker and burnt alive
mary jane
mary jane

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Location : UK

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Post  Linda Williams Mon Jul 24, 2017 11:35 pm

Does anyone have good questions to ask my doctor about treatment options for this
vulvadynia?
I am really beginning to wonder if my bladder repair, slings, cadaver tissue. The pharmacy that made my compound is remaking it since I had 2 very red places after applications.
I am so tired of doing everything the doc says and still in pain. I feel like I am being experimenting on! I know I am not alone! Would appreciate any input!

Linda Williams

Posts : 6
Join date : 2017-07-21

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