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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Mon Oct 16, 2017 2:22 am by Sagewoman

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1


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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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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