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Sat May 26, 2018 5:21 pm by Aquaben

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Tue May 22, 2018 7:22 pm by SinclairSassy

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

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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 …

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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


New member, feeling very down

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Re: New member, feeling very down

Post  jules on Sun Jul 31, 2011 2:49 pm

Vicki...wow, you have lots going on. i hope you can find time for you. it is very hard to work w/ V and your other health issues. What's up w/ the burning in your hands etc. how about a chiropractor. that's helped me in the past w/ numbness in my hands. i haven't had that problem in years. it wasn't burning, just tingling. i know it was related to my back issues. as for the feeling of hair pulling, i have never felt that. however, i have seen on the V facebook page that many women have. hope your health improves soon. miss chatting!

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Re: New member, feeling very down

Post  JustWantHelp on Fri Aug 05, 2011 9:12 pm

Hi ladies! I am new here and I have been suffering for almost 2 years from intense burning!! It all started after a really bad yeast infection. I have seen 17 doctors including dermatologists and they cants find what it is, nobody wants to help me and the one doctor that acts like he cares tells me it isn't vulvodynia when I think it is. Well anyways I hope you don't mind me asking a question or two Very Happy Other than certain foods and coffee, are there any other things that cause your pain to get worse? For me I have noticed around my period usually is bad, some months more than others and after my shower is really bad..I have to immediately put something on like Vaseline or steroid cream(doctor said he thought I might have lichen sclerosis so I use the steroid cream even though it seems to make it worse)..If I don't use anything after I shower my skin if on fire, it stings and feels like pins are poking me and my skin feels really tight. Any input would be great and very much appreciated! Thanks flower

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Re: New member, feeling very down

Post  Sarah001 on Sat Aug 06, 2011 4:36 pm

Hi Justwanthelp and welcome. Personally I don't find any food or drink makes my symptoms worse and alcohol improves them which I think is down to its muscle relaxant ability. I usually feel a bit better at the start of my period but any friction from clothes, sitting, any type of touching in the area makes things alot worse. I think you should maybe knock the steroid cream on the head, not only does it thin the skin but if you had lichen sclerosus a dermatologist would have picked up on this as it's very easy to spot when its there, my GP told me I had lichen planus and gave me a really strong steroid ointment but I didn't have it at all and the ointment took a layer of skin off and made things alot worse so I wouldn't use that if I were you. Generally we get given steroid ointments/creams to see if its an allergy or skin condition and if they don't work after 7-10 days they should be scrapped.

If your showers make things alot worse is it shampoo/conditioner/shower gel getting on the area that's the problem? Have you tried rinsing the vulva after you're done with all chemicals to see if that works? I too have to apply vaseline or zinc and castor oil cream every day several times a day to stop one side of skin rubbing on the other and without it I get loads worse so you're not on your own there. We're all different though and I can happily lay in a bath with bubble bath in it and feel no ill effects from that, coffee and acidic foods make no difference whatsoever to my symptoms and as my pelvic floor is the suspected culprit the relaxation I get from alcohol takes alot of the pain off but other ladies on here are different and couldn't do those things so it's trial and error really and not one solution fits all.
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Re: New member, feeling very down

Post  JustWantHelp on Sat Aug 06, 2011 8:13 pm

Thank you so much for your reply. I have found it hard to believe that it is a skin problem like lichen sclerosis because other than it being a little red sometimes, there's no change. I have considered that maybe it was my shampoo or soap and have since started using sensitive skin dove soap for my body and baby shampoo (perfume free) for my hair and I rinse off very well. I have changed so many things in my life so far and nothing seems to help. Maybe I should stop seeing this doctor, he has been giving me steroid creams the whole time...I haven't used them the whole time though because they just don't do anything for me. The only reason I keep going to him is because nobody else will listen to me. I am sick of being told I have a yeast infection when I don't or herpes when I have been tested several times and its negative and if it was herpes this would be the weirdest case I have ever heard of!
You mentioned about the pelvic floor...Do you get any pain anywhere else or feel spasms? I am just wondering because I thought maybe that was my problem but I didn't know if there were any signs to look for. I do have lower back pain and I am pretty sure I may have IBS, I sometimes get what feels like spasms in my anus (sorry, cant think of a nicer word) and my lower abdomen often feels very heavy. I have NO clue if any of that has to do with one or the other..Its nice that someone knows the pain I feel and that its not just all in my head. Thanks again!!

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Re: New member, feeling very down

Post  Sarah001 on Sun Aug 07, 2011 10:58 am

I think you should definitely get your pelvic floor checked, you need to see a womens health physio for that, low back pain and spasms around the anus could easily be pelvic floor related. I actually have full body pain because I have a condition where my ligaments are faulty and don't stabilise my joints properly so all my muscles are overworked, in spasm and full of trigger points all the time, plus I have fibromyalgia too, and my pelvic joints are badly affected so my pelvic floor is incredibly tense. You can rule out all infections at a GUM clinic to make sure you don't have anything else and a dermotologist would definitely have noticed lichen sclerosus so you can rule that out. Herpes causes flare ups with normal periods in between so unless you have lots of periods of time where you have no pain it's very unlikely to be herpes but you can have a swab of the area done when there's redness to be sure but I really doubt that's your problem. Definitely get your pelvic floor tested as your next step and do let us know how you get on.

With regards the shower you could always wash the vulva with plain water before your shower and apply vaseline to keep the water off the area beforehand and see if that helps. Keep us posted.
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Re: New member, feeling very down

Post  JustWantHelp on Sun Aug 07, 2011 2:57 pm

Thank you so much! I will be making an appointment tomorrow to see what we can find out. I will for sure try the shower idea, thanks! As far as the lichen sclerosis and herpes goes I don't think it is anything like that either. I don't have long periods of time were it gets better in fact since it started almost 2 years ago I don't remember it really going away and coming back but I do know that there are times where it feels worse than other times. I had a punch biopsy done when all this started and it showed some signs of herpes but nothing else which is why this doctor is so hell bent on it being herpes. I have had a swap test, a scraping and a blood test for herpes and they have all been negative so I think it is safe to say that I don't have it.
I think it is just time for a new doctor, it just sucks because I have seen 17 already!! I will keep you posted and again thank you!

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Re: New member, feeling very down

Post  kateelizabeth on Tue Aug 09, 2011 6:59 pm

Libby I am so sorry to here about what you are going through at the moment.
I have (sorry to be graphic) small white blisters/erosions/ulcers on the entrance of my vagina, which led my gp to diagnose me with herpes, however after having tests done I have found out that I do not have the herpes virus. I have been diagnosed with vulvodynia, yet these 'blisters' make me question that it is either something else, or a combination of the two, yet after researching extensively on the internet I can't find out what it could possibly be. It would be great if we could keep each other informed!

I am only 21 and studying, and missing out on the student lifestyle is horrible and its not something you can just tell people which makes it hard for friends to understand.
Where are you in the UK?

I want you to know you are not alone and to tell you not to lose hope in getting better.
As for tips, I have found that using vagisil helps give temporary relief.

I wish you well x x x

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Re: New member, feeling very down

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