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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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