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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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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: 3

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

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


IMPORTANT FOR UK SUFFERERS

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IMPORTANT FOR UK SUFFERERS

Post  infinitelywondering on Sat Jan 21, 2017 11:26 pm

Hi everyone,

Today I was diagnosed with Vestibulitis. After being dismissed and ignored by numerous GPs and NHS gynaes, I finally visited Mrs Gabrielle Downey in Birmingham. Not only was her manner so reassuring and kind but she efficiently diagnosed me in the space of about ten minutes. She was as frustrated as we all are about the lack of understanding of vulval pain within the medical community.

She prescribed me diflucan to remove any sort of infection if it exists, tetracaine (a numbing gel) which was incredibly effective for day to day management and a steroid cream to use day and nightly. We have arranged for a vestibulectomy if these treatments show no improvement- I am feeling so much more positive and happy now Smile

Mrs Downey has immense knowledge about all sorts of different types of vulval pain and she assured me I will get better very soon Smile She is at the Edgebaston Hospital (private) in Birmingham and I would absolutely recommend if you are in the UK that you go and see her. Around 90% of the women that she has operated on have made a complete recovery after so there is definitely hope!

Please do not lose hope. It may sound stupid but positive energy is one of the best things possible when battling this awful condition; we will all get better one day Smile

Good Luck everyone x

infinitelywondering

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Re: IMPORTANT FOR UK SUFFERERS

Post  fairlight10 on Sun Jan 22, 2017 9:41 am

Thank you for posting this very useful information.I have made a note of her name etc. I think this lady was often on the tv programme Embarrassing Bodies.

fairlight10

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Re: IMPORTANT FOR UK SUFFERERS

Post  srbry on Sat Mar 03, 2018 2:29 pm

Thank you for this, I've read a bit about this woman and might try and get a referral down to see her if nothing comes of my appointments in the north of England. Glad to hear you've finally got your diagnosis. xxx

srbry

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Re: IMPORTANT FOR UK SUFFERERS

Post  HedvigB on Sun Nov 18, 2018 8:15 pm

Hi infinitelywondering

Any updates on your vulvodynia recovery? did the treatments help or did you have vestibulectomy in the end? I'm booked in for vestibulectomy in January and I don't really know what to expect...I'm freaking out. Would love to hear more about others experiences!

HedvigB

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Re: IMPORTANT FOR UK SUFFERERS

Post  srbry on Sun Nov 18, 2018 8:42 pm

I've private messaged you Smile

srbry

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Re: IMPORTANT FOR UK SUFFERERS

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