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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

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vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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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.

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Can anyone else not have sex AT ALL?

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Can anyone else not have sex AT ALL?

Post  searchingforacure_ on Sat Apr 29, 2017 7:04 pm

Hello,

I have struggled since I was 15/16 with vulvodynia and it was always annoying, but it never prevented me from having sex until about a year ago when I had a serious flare up. Since then, I haven't been able to have any sexual activity at all....if anyone else has gone through this, how did you cope? Were you able to find a partner still? I feel so hopeless...

searchingforacure_

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Re: Can anyone else not have sex AT ALL?

Post  Dora The Explorer on Sun Apr 30, 2017 6:00 am

I don't wish to dishearten you, but I am no longer able to have sex. Maybe someone else has found a way around the pain and can offer some useful advice.
I had to have a cervical smear earlier this year and I was crying out in agony.
I was given these things to try, they are like plastic penis' in varying widths, the first being about the size of a finger, progressively getting bigger, until "normal" penis width. You're supposed to lubricate them and gently insert them into yourself when you are relaxed and comfortable, so that you break away from that initial "freeze"\frightened of the pain response.
The theory sounds good, but I'm to afraid to try.

Dora The Explorer

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Re: Can anyone else not have sex AT ALL?

Post  Dora The Explorer on Sun Apr 30, 2017 6:45 am

My story likely starts from birth. As a baby apparently my mum couldn't get rid of my nappy rash, the only thing that would help was metanium, sudocream didn't touch it. As a teenager, I believed I had a lot of thrush, so used canestan like it was going out of fashion, especially as I got older and started having sex, after sex I would itch horrendously.
Once I started living with my husband, and having sex more regularly I really regularly would use canestan. Then it turned from itching to pain, to the point it was like I was being raped. Then I sought help. I was diagnosed with vestibulitis, but I think all the creams I was prescribed also irritated my skin. My skin is sensitive at the best of times, so I seem to have eczema and vestibulitis. I itch constantly and haven't tried sex for 3 1/2 years.
I don't have the constant daily pain that others describe, I itch constantly, and scratch the itch so tear myself apart and have pain that way. And if anything touches one of the 4 glands that surround my vagina, it's like I've been touched with a red hot poker. Last time I had sex the pain was horrendous, and my last smear confirmed that it still would be.

Dora The Explorer

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Re: Can anyone else not have sex AT ALL?

Post  chancesunny on Thu May 04, 2017 9:18 pm

Physical therapy is key!!! I had pain during sex for 3 years and I also felt hopeless. After literally years of research and trying every kind of medication, I found a physical therapist who specialized in relaxing muscles by applying pressure with her fingers to my pelvis area. She also trained me on how to release my pelvic muscles which was exactly what helped me with my vaginal pain. The sad thing is that a lot of women don't like to have anyone touch them in the way that they need to get better. It is extremely painful in the beginning but it is so eye opening. I completely recommend physical therapy to anyone having painful sex. I used to not even be able to put a tampon in and now I'm having painless and wonderful sex. I do still have some pain time to time but I know what to do to release those muscles and calm myself down. I hold all of my stress in my gut so that's why the pain came on - I was going through a very stressful time at work. Good luck!

chancesunny

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I can't

Post  Gill on Sat May 06, 2017 7:56 pm

I can't have sex.

There are two main things I do to tackle it:

- My husband and I went to a great psychosexual counsellor who talked about 'other things' we could do in the bedroom, and that helped a lot. We've been together for 3 years since finding out.

- I keep on researching and going to Drs and reading forums etc. I had some improvement from PT, enough to be able to put in a tampon. Had partial vestibulectomy a few months ago (mine is provoked and localised, so am an excellent candidate), and had further improvement, but still not enough for sex. I'm not giving up hope yet; dr says it might get better with more healing. Otherwise hope to push for more surgery.

Gill

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Big fat nope to sex

Post  KaseyT85 on Wed Jun 07, 2017 1:52 pm

I used to be able to have sex, but now it is just too painful.
I am about to commence using the dilators for physical therapy to try and retrain the muscles.
Also, I have been diagnosed with a dermatitis in addition to the vulvodynia so I am using steroids, soap free aqueous cream in the shower and barrier cream.
I am hoping to see results over the next couple of months.

I would suggest trying to obtain a referral to a vulval clinic for them to review what might work for you.

It is a terrible condition, I wouldn't wish it on anyone. Not only physically, but mentally as well.

Best of luck Smile

KaseyT85

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Re: Can anyone else not have sex AT ALL?

Post  mary jane on Wed Jun 07, 2017 2:31 pm

Dora The Explorer wrote:My story likely starts from birth. As a baby apparently my mum couldn't get rid of my nappy rash, the only thing that would help was metanium, sudocream didn't touch it. As a teenager, I believed I had a lot of thrush, so used canestan like it was going out of fashion, especially as I got older and started having sex, after sex I would itch horrendously.
Once I started living with my husband, and having sex more regularly I really regularly would use canestan. Then it turned from itching to pain, to the point it was like I was being raped. Then I sought help. I was diagnosed with vestibulitis, but I think all the creams I was prescribed also irritated my skin. My skin is sensitive at the best of times, so I seem to have eczema and vestibulitis. I itch constantly and haven't tried sex for 3 1/2 years.
I don't have the constant daily pain that others describe, I itch constantly, and scratch the itch so tear myself apart and have pain that way. And if anything touches one of the 4 glands that surround my vagina, it's like I've been touched with a red hot poker. Last time I had sex the pain was horrendous, and my last smear confirmed that it still would be.

the ithcing sounds like neuropathic itch. Have you ever taken medication for this? They used to treat this condition with alchohol nerve killing injections

here is the link:

http://www.atlasofpelvicsurgery.com/1VulvaandIntroitus/9alcoholinjection/chap1sec9.html

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Re: Can anyone else not have sex AT ALL?

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