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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 …

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


Feeling nosey :-)

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Feeling nosey :-)

Post  Neevi on Thu Nov 07, 2013 10:17 am

Are you in a relationship? And if so how are yous coping with the weight of this? Do you make up for the sexual side by doing other stuff to keep that close connection?

How do you maintain your lady garden? I know i cant use any soaps etc down there because they irritate the crap out of me so im letting it grow out but feel so horrible, really wish i could tidy her up a bit :-P

And have you told all your close friends or any family members about this condition. It can be very hard keeping this to yourself. How open about it are you?

Neevi

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Re: Feeling nosey :-)

Post  Alana3 on Thu Nov 07, 2013 2:36 pm

I'm in a relationship, its going well, my boyfriend is very understanding, but he has medical problems himself. HOWEVER, I did have surgery before we started having sex so my story is probably different. But I will say I was still nervous when we first started to have sex. But I just told him what was wrong and we worked on what was good for us together. But it's not painful anymore. You could try trimming it. My entire family and most of my friends know what I've been thru. But I also battle endometriosis, so my pain levels some days are thru the roof. It's no one's business though so the world doesn't need to know. You could maybe try a baking soda bath (which helps with odor as well as soothing the area too and apparently balances the pH of your vagina). Hope I helped!

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Re: Feeling nosey :-)

Post  Sarah001 on Thu Nov 07, 2013 9:51 pm

I was in a relationship but not for the last 3 years, I use a bikini trimmer to tidy up and as not using soap didn't help one bit I thought what the hell and started using it again. Hasn't made me worse either so I use bubble bath too. I find lavender oil mixed with vaseline very good for vestibule pain.
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Re: Feeling nosey :-)

Post  tinkerbelle2 on Thu Nov 14, 2013 4:27 pm

Hi Neevi, I am in a relationship have been with him nearly 2 years and had this the whole duration of our relationship! Grrr. Back then it was still bothersome and made me feel kind of hopeless and generally miserable and unsexy ugly even. But I kind of learnt to live with it and kept it to myself. The past year it seems to have got a lot worse and it has been both him and my mum that have supported and cared for me and encouraged me to go to the doctor! My boyfriend has been amazing. He has also had his own genital pain issues while we've been together plus we were long distance for 8 months so we both went without sex for months at a time. Now he lives with me and my parents which is lovely. Atm we only do it occasionally when we both aren't feeling too ouchy down there! But even if he hadn't had a similar thing I think he would've been understanding.

At the moment I have just been leaving things to grow down there! But I usually shave the bikini line. Epilating and waxing is too scary! Sometimes I shave it all! My boyfriend likes that but he is 24 and probably seen a lot of porn. It is kinda strange that some men love it isn't it?! But it grows back so quickly and gets spiky and itchy, not so attractive! Lol. And I have stopped using bubble baths really. I wash with aqueous cream or sensitive soap but don't put anything inside and then rinse with warm water. I have a handheld shower thingy which helps.

I have started to talk to my friends about it. They've all been kind and say it sounds horrible. None have it or have heard of it although a couple have had urine issues with no infection showing up. My mum told me years ago she once had a burning tingling down below which wouldn't budge but she said she thinks it went away on its own
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Re: Feeling nosey :-)

Post  Kathy100 on Fri Nov 15, 2013 12:29 pm

I was in a long term relationship but not anymore. I trim now rather than shave. I stopped using bubble bath years ago as one of the doctors I saw said it could be triggering cystitis & I have showers rather than baths.
Once mine changed to unprovoked I told my family and some friends; most were have been really sympathetic & have helped me through it. (although one of my friends finds it hard to understand why I don't want to go out as much...). With people I don't know so well - I just limit it to saying I've lower back pain.

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Re: Feeling nosey :-)

Post  Mark on Fri Nov 15, 2013 11:25 pm

I'm a man, but am married to a woman who has vulvodynia. Luckily her condition means she sometimes has an itch and only sometimes severe pain. When she's itching she still has a normal sex drive, obviously vaginal sex is out as it would bring on the pain. Yes we do 'other things' when she's just itching, I give her massages or handjobs or go down on her, which I obviously enjoy. When she's in pain I don't have a sex drive either TBH, I'm more concerned about her suffering.

Her condition affects just her vagina and the entrance to it and having anything brush against that area can trigger the pain so she keeps herself hair-free, by epilating about once a week. Being a typical guy as you'd expect I prefer it that way, it looks and feels a lot nicer and is a lot better for oral.

Her family know about it and also her manager, HR and a few close friends at work. The pain episodes last several days at a time, affect her mood and can stop her from working, driving any distance etc or making social plans, so it isn't really an option for her not to tell people.

Mark

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Re: Feeling nosey :-)

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