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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: 7

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

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


Newbie to vulvodynia

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Newbie to vulvodynia

Post  LiiJay on Thu Nov 24, 2016 9:52 am

Hello all!

I'm 26 and I was diagnosed with vulvodynia this week. It's been a hard slog getting to this point but reading posts on this forum is a comfort to know I'm not alone.

My story started in June this year where out of the blue I was struck with this immense pain. Naturally I assumed that it was a water infection as I've had a few of them in the past so off to the GP I went to get antibiotics. A week later the pain came back so it was another trip to the GP. I did a water test there where the doctor concluded that it wasn't a water infection and sent me on my way, still in pain. A few weeks went by where the pain was constant, so after blasting myself with over the counter treatments for UTI and thrush I thought I got rid of whatever it was that was plaguing my nether regions. How wrong I was. It came back with a furious vengeance, so a pleaful phone conversation with the medical receptionist with a superiority complex I managed to get a telephone appointment with another doctor. I told him of my plight, to which he flippantly told me to go to hospital. You know, the place where there are actual serious medical emergencies. I refused not wanting to waste my time in A & E and take room and time away from someone who would actually need it. So disparingly I went on, pain and all. After a while the burning rawness died down, not completely going away but enough for me to get back to normality again. Until the end of August where I had another flare up. I went back to the GP who thought it could be a skin condition and gave me hydrocortisone cream, which made it 100 times worse. A few more weeks went by and another trip to the GP to get a swab to see if there was anything bacterial goining on, to which the results concluded that no nasties were lurking around.I couldn't take it any more. I was in tears. This thing had taken over my life. I didn't want to go out any where because I'd be in agony, I couldn't concentrate at all in work, I stopped going to the gym and it started to effect my relationship. I cracked and told my mum who was furious with what doctors had done (or in some cases neglected to do) and she dragged me to A & E just like the third doctor had suggested. They couldn't do anything for me as their gyno knowledge was limited and sent me to the womens hospital, where a patronising nurse didn't understand why I was so distressed. My mum being the protective mamma bear that she is stuck to her guns and made sure we waited to be seen by the doctor who was miffed as I wasn't doing anything obvious, like bleeding. She told me I needed to go back go my GP to be referred to them so off I went back to the GP to be referred to a specialist with a 2 month wait. The day finally came and she poked and prodded for a bit and took swabs to be sent off for testing. They came back negative of course, just like the previous swabs had. There was a 4 month wait to see her again but there was no way I could wait that long, after already suffering for 5 months. I went to my GP to see if there was anything thet could perscribe in the meantime while I wait, which they were reluctant to do. However they did write off to the specialist to see if I could get an earlier appointment. By sheer luck I managed to get a cancellation and saw her this week. It was a little disappointing to hear there was no miracle cure and that there's no guarantee it will ever go away but at least there's a name for it and reading through your stories I know I'm not alone.

LiiJay

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Re: Newbie to vulvodynia

Post  fairlight10 on Thu Nov 24, 2016 11:02 am

Thank you for telling us your story. I am pleased you have found this forum. I have read all of the posts since the start of this forum. They will help you to cope better with this condition and help you to decide what therapies you want to try. Then with this knowledge you can go back to your doctor and tell them what you need to be prescribed. I get cross when I see a doctor who does not now anything about this condition. Anyway, I know we are here to support you in your journey with this condition.

fairlight10

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Re: Newbie to vulvodynia

Post  PainBlogger on Thu Nov 24, 2016 3:30 pm

It's a common story unfortunately - too many medical professionals lack knowledge about the problem. But it's good that you now have a diagnosis. You're right that there's no miracle cure. But that doesn't mean you'll be suffering forever. Plenty of people do get better from this horrible condition. It can take a lot of persistence and trial and error to find what helps you - or what combination of treatments/lifestyle changes/dietary changes helps - but be stubborn and don't give up. Smile

PainBlogger

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Re: Newbie to vulvodynia

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