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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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Post-vestibulectomy (partial) recovery- going back to work?

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Post-vestibulectomy (partial) recovery- going back to work?

Post  Gill on Wed Jan 18, 2017 7:25 pm

Hi,

I have a partial vestibulectomy and hymenectomy scheduled for Monday. My doctor has said that I will need about a week to recover, but I haven't seen anything less than two weeks on Internet forums, and I've seen one comment that said you shouldn't go back to work before six weeks!

I know that some of the comments have been for full vestibulectomies; if you've had a partial, how long was it before you went back to work? I've seen people say that doing too much too soon can make the surgery less likely to work, so don't want to get it wrong, but have to try to convince my Dr, so wanted to know what people's experiences are of recovery from partial...?

Thank you!

Gill

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  sj17 on Sat May 06, 2017 5:50 pm

Hi! I don't really have much to add in terms of your questions but I have suffered from Vulvodynia from the age of 15 and I'm now 21. I'm looking into getting surgery and I was wondering which is the doc / hospital you are hoping to get the surgery from?

Thanks, Sarah

sj17

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Dr

Post  Gill on Sat May 06, 2017 6:18 pm

Hi Sarah, I saw Dr Hutchon at Solihull Hospital. As far as I understood I was her first vestibulodynia vestibulectomy. Surgery and recovery were fine, and the area she operated on massively improved.

My pain was all primary provoked. I still have a lot of pain in other surrounding areas of the vestibule that weren't removed.

I would also recommend the Face book group 'vestibulectomy surgery and vestibulodynia support group'. If you look through the historical posts ppl also recommend Dr Gabrielle Downey in bham.

Gill

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  sj17 on Sat May 06, 2017 7:14 pm

Hi Gill,

Thank you for your very speedy response. I have found the one in Birmingham you suggested, she seems to be very experienced. Was your surgery on the NHS? How did your surgery go as I know you had it in January? I have unprovoked vulvodynia as it just burns constantly, do you think she would be likely to operate on me?

Thanks

sj17

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  Gill on Sat May 06, 2017 9:05 pm

Hi, I haven't seen her, and as mine is provoked I don't know whether surgery is a viable option for unprovoked, sorry. I just know that provoked is ideal.

My surgery was on the NHS. It was partial, 3pm to 9pm on the clock face. Surgery was smooth. Done in the morning, over by mid morning, went home the next morning (some ppl go home the same day), recovery for 2 weeks at home. The pain was never as bad as it was from vv! It just got itchy when the skin started to knit together between days 4-11ish. There's a lot of advice about how to deal w surgery on the Fb page I mentioned.

Spoke to dr recently and she said I'll need to wait a few more months before we know completely how well it's worked, but I have had massive improvement in the area that was removed. The tissue on either side (1-3pm and 9-10pm) is still a serious problem but not as bad as the tissue that was removed, and the surgeon said this can happen in the short-medium term with vaginal tissue. She said there may be further improvements over the next few months.

Gill

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  sj17 on Sat May 06, 2017 9:43 pm

I truly hope you make a full recovery x

sj17

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RE

Post  Gill on Sat May 06, 2017 10:14 pm

Thank you. Same to you! Smile

Gill

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Surgery

Post  infinitelywondering on Sun May 07, 2017 9:26 am

Hi there,

I am having surgery in about 2 months by Dr Gabrielle Downey. I originally saw her privately but my operation will be on the NHS (You don't have to initially see her privately, I was just tired of waiting). I haven't had the surgery yet but she is brilliant and very knowledgeable. She assured me that she has an 80% success rate of being totally cured; the worst she said would be that my pain would just remain the same.

I'm hoping it all goes well! And I would definitely recommend her!

infinitelywondering

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  sj17 on Mon May 08, 2017 8:53 am

Hiya! I have requested an appointment with her! How long did it take for your first appointment to now? Also do you have provoked or unprovoked vulvodynia if you don't mind me asking? I hope your surgery goes well and that you get the results you want.

sj17

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  Kezz on Sat May 13, 2017 1:27 am

Hi girls! Such promising news of an experienced surgeon in England. Infinitelywondering, how much was the private appointment? I think I want to go down this route too. I've literally been waiting years and im sick of it now. After your private appointment did she suggest that you then go public for the operation? Also are you girls from Birmingham? My gp told me she couldn't refer me to anyone outside London on the nhs (i live in London) but I feel like she's wrong. I want the surgery so bad, i have provoked pain during sex.

Thanks gals xxx

Kezz

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  sj17 on Tue May 16, 2017 4:04 pm

Hiya Kezz. I rung up the BMI hospital yesterday where the expert consultant is supposed to be at. It costs £180 for an initial consultation and I've had to wait around 2 and a half weeks (so still not that fab). It is a load of bollocks that your GP can't refer you to anybody outside of London. Demand it. Not sure how long you will be waiting for though - perhaps ask for an urgent referral or if you can afford it see her privately. I'm from Manchester and will be travelling down specially to see her. I will probably be going on the NHS for any procedures after that as it will cost thousands -- again each to their own though and depends what treatment she offers you. If you need any more info or help or advice PM me and I'll be happy to help Smile xx She will definitely be able to help you for your provoked pain.

sj17

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Re: Post-vestibulectomy (partial) recovery- going back to work?

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