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» I don't know what to do anymore
Today 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.

Comments: 1

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 …

Comments: 0

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


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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mary jane

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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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