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» 7 months since the diagnosis
FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.  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!
FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.  EmptyMon Apr 08, 2019 7:54 am by Jo44

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


FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.

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FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.  Empty FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.

Post  GuinevereRose on Tue Mar 29, 2016 3:57 pm

When I was going through my first horrific months of vulvodynia I spent quite a bit of time on this website. It was helpful for me to read other people’s stories that I could relate to. I promised myself that if I ever found a treatment plan that worked, I would come back and share my story here. I’m happy to report that I eventually did find a solution, and my vulvodynia pain is now completely gone.

Let’s start at the beginning: the onset of my generalized vulvodynia. Following a period of intense stress in my personal life, I was traveling abroad with my boyfriend in France. The uncomfortable sensation came on within the course of 24 hours. I felt a slight itchiness and intense discomfort around my labia majora and mons pubis. (Basically, everywhere the hair grows.) The discomfort was the worst when I was walking — it felt like I was wearing a maxi pad made of sandpaper. My skin felt incredibly raw, and it was irritated by any sort of movement of my legs. It was almost unbearable to walk.

Five months and three doctors later, I was still in the exact same state. My doctors and I had excluded the possibilities of yeast infection and std’s through testing. I had tried shaving, not shaving, wearing seamless underwear, wearing no underwear, baby powder, valtrex, lidocaine, fluconazole, topical estrogen, topical steroids, oral steroids, nerve blockers, anticonvulsants… I felt like I had run through every option on the internet. I was desperate — thinking of quitting the job I loved as an art director at a popular blog, worried that my boyfriend might leave me if I couldn’t get well soon, imagining my future alone and maybe even in a wheelchair.

I was then diagnosed with geographic tongue, which in my mind further confirmed that the pubic pain I was experiencing was definitely caused by the mysterious condition known as vulvodynia.

By this point I was suffering from extreme anxiety and desperation on a day-in-day-out basis due to my condition. I felt helpless, and completely isolated by this weird, embarrassing condition that no one had ever heard of. But even in my darkest hour, I promised myself I would keep experimenting and searching for a cure. That said, the emotional cycle of experimenting with treatment options was exhausting. Those of you who are dealing with it know: the surge of hope followed by the crush of disappointment, each one worse than the last.

I’m very glad that I didn’t stop experimenting though, because I eventually found something that worked for me: a combination of periodic hair removal and a low-grade antidepressant called Lexipro. When I went in for my first Brazilian wax I was pretty terrified. “This will either kill me or cure me,” I thought. The process was painful and seemed to take forever. But when I walked out of that salon… the sandpaper feeling was gone.

I still had a heightened sensitivity in my pubic region - I felt hyper aware of the seams in my underwear, the string of a tampon, the seam of my jeans. It was almost like someone had just “turned the volume up” on the nerves in that region. But the sandpaper feeling was gone, and it didn’t return until the hair started growing back weeks later.

I’m not sure if the Lexipro directly changed the way my brain received pain signals from my pubic area, or if it just made me stop having anxiety about it. In either case, within a month or two of Brazilian waxing combined with a once-daily dose of Lexipro, I was back to my old self again. Even the geographic tongue eventually faded away.

Now I walk, run, ride bikes, swim, wear leggings and skinny jeans without a thought… just like I did before. I do have to maintain the waxing, because the sensitivity seems to still be there a bit. But it’s a small price to pay for feeling good again.

I am SO THANKFUL to God that I found a solution for my vulvodynia, and I think the entire experience made me a more empathetic, grateful person in general. It was a nightmare, and one of the hardest things I’ve ever been through both emotionally and physically. My heart goes out to those of you who are still looking for your “cure”. I send you only the purest vibrations of LOVE and support. Keep searching, and keep hoping. Change can happen!

GuinevereRose

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Post  emalita on Tue Mar 29, 2016 7:29 pm

I am so happy for you!!! I am envious of your ability to wear pants Smile I haven't been able to even wear underwear in MONTHS! I hope your pain stays away, and you can forget that you have a vulva from time to time Wink

emalita

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Post  Sebby (Admin) on Tue Mar 29, 2016 7:38 pm

I'm so pleased for you! Smile and thank you for coming back to share with our members, it gives many hope.

Sebby
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Sebby (Admin)
Sebby (Admin)
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