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» Cleveland Clinic - Pain Management, Weston, FL
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» 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 …

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


Vulvodynia - Newly Diagnosed

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Vulvodynia - Newly Diagnosed

Post  emtx on Mon Jul 25, 2016 10:30 pm

Hi everyone,

I'm 19 years old and was diagnosed with Vulvodynia after constant pain with no physical reason as to why. They sent me for at least four tests to ensure I had no Sexually Transmitted Infection/Disease, despite me telling them there was no way I could have! I've managed the pain with Lidocaine 5% and painkillers as required. Relaxation techniques have also seemed to help as the doctors I saw believed it was related to stress. I saw a gynecologist last week who confirmed I had Vulvodynia and also referred me for cystoscopy as I always feel as though I have a UTI; he wanted to rule out any bladder issues.

Lately, I have experienced intense soreness and itching around my vulva and vaginal opening due to friction from wearing pads. This accompanied by Vulvodynia has been excruciatingly painful. The doctor prescribed me Clotrimazole to reduce the itching but the soreness remains. Does anyone know of any treatments or home remedies that might help? I'm a Student Mental Health Nurse and I start my placement next month, so I want to ensure I'm fit and healthy!

Another question I have is does anyone know of any good lubricants to use during sex that is good for Vulvodynia? I don't intend to have sex until the soreness has gone completely, but I'd like to find one which isn't going to cause anymore! I've been with my boyfriend for over 3 years and I want to ensure we maintain that side of the relationship.

Thanks in advance. Smile

emtx

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Re: Vulvodynia - Newly Diagnosed

Post  emalita on Mon Jul 25, 2016 11:08 pm

Hi emtx,

A good lubricant is an organic UK brand called YES. The waterbased lubricant also helped a lot with my vulvar itching. So it may be worth a try for you even before you have sex.

Epsom salt soaks also help with itching, but they are obviously not the most convenient. Outside of steroids and other creams, I can't really recommend a good itch remedy.

Do you have any physical changes to your vulva, or have you had a biopsy to rule out something like lichen sclerosus(LS) since you have chronic itching? Not trying to freak you out, but I had a semi-recent freak out with being misdiagnosed with LS, so it's fresh in my mind.

emalita

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Re: Vulvodynia - Newly Diagnosed

Post  emtx on Mon Jul 25, 2016 11:11 pm

Hi emalita,

Thanks for the recommendation, I'll check it out! Smile I've seen some Aloe Vera ones but I don't know if they're any good for soreness?

It's slightly red but other than that it's pretty normal. The doctor had a look today as I was concerned, and she said she didn't notice anything out of the ordinary and wasn't worried. I think the hot weather and wearing sanitary towels has caused a lot of it. But it's something to remember for the future!

Thank you for your help. Smile

emtx

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Re: Vulvodynia - Newly Diagnosed

Post  PainBlogger on Tue Jul 26, 2016 7:28 am

I'd make sure that any sanitary towels you wear are non-fragranced and ideally cotton-based. I found that fragranced towels made my pain worse- they're not always obviously fragranced but if you read the packaging it should say if they are or not. Personally I've not found a cotton/organic/'natural' fibres towel absorbent/leak-proof enough for me, but I find Bodyform (which are non scented irritate me the least). That may be a UK brand though and I don't know where you're based. Towards the end of my (usually eight day) period, I still get a bit sore even though my problems have improved tremendously. But then I think a lot of people would after eight days!

I second the recommendation of YES lubricant. It's also wise to avoid any scented bath/toilet products and use fragrance free detergent on any clothes that are in contact with the affected area.

PainBlogger

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Re: Vulvodynia - Newly Diagnosed

Post  emtx on Tue Jul 26, 2016 9:24 am

Hi Painblogger,

I'm based in the UK so I'll give Bodyform a go!

Thanks for your advice, and I'm glad your problems have improved!

emtx

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Re: Vulvodynia - Newly Diagnosed

Post  jjr23 on Wed Aug 24, 2016 4:44 pm

Hi emtx,

I use olive oil as lubricant. Mt gynocologist is the one who actually recommended this to me! His area of specialization is vulvodynia so I highly respect his advice. From my experience it's been great. It doesn't dry out as quick as other lubricants and it has a nice smooth and slimey feel to it. I have a bottle of it in my room always, it's my life saviour. If I'm ever ready or willing to try having sex I use LOTS of it and it really helps. It reduces the harsh friction on the painful skin. I'm not sure if it can be used with condoms though. Like the oil might break down the latex. (If not using a condom, the guy loves the feel of the oil too!)


Last edited by jjr23 on Wed Aug 24, 2016 4:45 pm; edited 1 time in total (Reason for editing : Spelling error)

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Re: Vulvodynia - Newly Diagnosed

Post  emtx on Wed Aug 24, 2016 4:49 pm

Hi jjr23,

Sounds different but worth a try!

Thanks. Smile

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Re: Vulvodynia - Newly Diagnosed

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