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Sat May 26, 2018 5:21 pm by Aquaben

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» 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


At war with my own body

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At war with my own body

Post  DreamingClouds on Fri Oct 17, 2014 8:06 am

Hi all,
 As you can see I'm a new member. I found this forum looking up support groups and thought it might help to talk to people who get it where nobody I know might see. I'd been comparatively pain free for a while but it has flared up again and I can already feel myself sinking out of the little bit of positive I had built up. Sad

I first started getting a bit of the pain when I was 16, didn't really register what it was and I was treated for UTIs a few times. It kept coming back more and more often and by the time I was 18 I had a spot just under my vaginal opening which is absolute agony to touch. It's only fairly small, and sometimes it is only sore on contact (I think it's more I'm used to it than it isn't hurting at all), but other times the pain is unbearable agony that makes going to the bathroom, sitting, lying, walking, anything just sheer agony. I went through a year of different GP tests (UTI, yeast, STI etc, the anti fungal cream left me screaming) before being referred to a gyno. The first one was pretty awful and used a larger sized speculum despite me being in pain and a virgin (to "prove" I wasn't tight) and was generally not very sympathetic, all I got out of that was a confirmed PCOS scan and diagnosis and some not overly nice comments about how obvious it was I had it from my appearance. I didn't really want to go back after that but eventually saw another lady who had no clue, then finally after a lot of fighting saw somebody else. I was tried on tablets to try and block the pain signals (gab something and amitryptiline (sp)), birth control, steroid cream and topical lidocane, none of which helped, and to sum it up was eventually told I needed to exercise more to lose weight (i'm hardly large and even walking is agony) and that they didn't know how to help me. They also said I wasn't a typical case since the pain is permanently there on touch then flares up as generalised. :/

I'm now 21 and since then I haven't seen anyone. Being poked and prodded and given tablets that mess with my depression just makes me feel worse mentally and it takes weeks to see a normal doctor let alone get a referral so I have been trying to cope. That had been going better, car journeys in particular cause flareups but as long as I don't overdo movement and am careful I get bigger breaks than I would otherwise. I'm single now anyway but since this flareup started it's really hit me, I don't even dare try to date anyone and how much it hampers me has all come back. I don't really have a social life because I struggle to go out and fear it starting up when I do and my family that do know are the "just get on with it" brigade as though I can help being in agony or how bad it makes me feel. Being in so much pain its driven me to becoming suicidal in the past is bad enough. I just feel really crappy and need to be saying this to people who don't think I'm mad or judge me. Sad

EDIT: I should probably say what methods I am using. I'm only using 100% natural (mostly homemade) shampoo, soap, everything now. No SLS or anything else that may remotely irritate. Cotton underwear, doughnut cushion (makes it worse sadly). Healthy natural diet, vegan. Baths with oats when it flares up help a bit sometimes. Painkillers never made the slightest difference and I try to avoid that stuff anyway. Cool water rinse when urinating during flareups. Lots of water daily, no citrus anything. I think that is everything, not slept all night so my brain is kinda fried.

DreamingClouds

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Join date : 2014-10-17
Location : UK

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Re: At war with my own body

Post  Sparkle on Fri Oct 17, 2014 11:55 am

Hello dreaming clouds,

Do you only get pain in one spot when touched or is it Ther all time aswell? Or a mixture on different days?

I get provoked pain but I can get an ache and pain all day if I wear too tight trousers or Ther is too much pressure (down Ther) im newly diagnosed but I will say since being diagnosed my symptoms have reduced with the methods I am using.
I use an organic vitamin e oil everyday and night on the area that gives me pain, I use lidocaine in eve after a bath. In the bath I am only using aqueous creme and vani soap to wash. And I wash my hair over bath not when I'm In Ther. I'm also taking vitamins, fish oil, magnesium and calcium citrate. I only wear leggings to work and at home a lose pair of shorts and no knickers. I wash my knickers seperatly and use non bio washing tabs and no softener. Since starting to do all this about 3 weeks ago my pain has reduced. It's not gone away though but I can feel it's getting better each day. Maybe you should (if u aren't already) use my methods and see if they work for u? I know everyone is different so I don't wanna get your hopes up but I got my ideas from different girls on this site. U just gotta find out what works for u.

I'm sorry you've had such rubbish doctors and feel like u don't want to see anyone else now and are feeling low at this point. It does help to talk to women on here who going through same or similar thing.
I would go back to your GP and ask to be refered to a vulva specialist or a gynocolagiest. I know waiting times can be long but best to get on the list as soon as u can. Not all doctors will brush u off u gotta keep trying different ones till u find one who listens. My gyno is nice she wants me to go on ami beg of nov so depending on how my symptoms are then I hope to start on a low dose. How did u get on with ami?

I hope you find your solution soon x

Sparkle

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Re: At war with my own body

Post  Sparkle on Fri Oct 17, 2014 12:00 pm

Also you need to try and work out why u get flare ups, that's a good step towards finding out what will help reduce your pain. Stress at work? Clothes u wear? Change in washing powder? It could be anything. Somthing has cause this flare up for u this time. My last bad flare up I worked out was stupid jeans I wore to work. Too tight! I was in pain all day and eve and next day. I thrown them away now lol and just wear leggings at work.

Sparkle

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Re: At war with my own body

Post  zarli on Sun Oct 19, 2014 1:06 am

Hi sweetie
I feel you need to make contact with Alana. She is one of the lovely girls on here and she would have great advice for you as I think by reading your story surgery would be something to think about. I believe yours can and will be fixed by going down the right road.
Kindest thoughts sent your way Smile

zarli

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Re: At war with my own body

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