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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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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