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» Please tell me this can get better
Today at 2:10 am by anon99

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Today at 12:00 am by Bx11

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


Vulvadynia

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Vulvadynia

Post  Linda Williams on 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

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Re: Vulvadynia

Post  mary jane on 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
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mary jane

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Re: Vulvadynia

Post  Linda Williams on 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

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Re: Vulvadynia

Post  mary jane on 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
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Re: Vulvadynia

Post  Linda Williams on 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

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Re: Vulvadynia

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