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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 …

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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 …

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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

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 …

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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


Royal College of Obstetricians and Gynaecologists couldnt give a stuff...

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Royal College of Obstetricians and Gynaecologists couldnt give a stuff...

Post  Sebby (Admin) on Thu Feb 03, 2011 8:46 pm

Mum emailed the Royal College of Obstetricians and Gynaecologists to ask if they could suggest a good dr for vulvodynia..see the email below..they dont know..or even care to do the work to find out.. (Barstads!)

Thank you for your email.

I have spoken with my colleagues here at the College and it has been suggested that you contact the Vulval Pain Society website for further information.

We hope this proves of some and help and wish you and your family well.

With kind regards,

Sakinah Takeram
Executive Secretary
Royal College of Obstetricians and Gynaecologists
27 Sussex Place, Regent's Park
London NW1 4RG, UK
Tel: +44 (0)20 7772 6319

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Re: Royal College of Obstetricians and Gynaecologists couldnt give a stuff...

Post  Sarah001 on Thu Feb 03, 2011 8:48 pm

Lazy bastards. The vulval pain society website's pretty crap too, I was given a leaflet about it when I got diagnosed and thought it would be full of excellent information only to find it isn't. I really don't get why doctors aren't interested in this, you'd think because they don't actually know for sure what causes it they'd be curious to try and find out. Evil or Very Mad
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Re: Royal College of Obstetricians and Gynaecologists couldnt give a stuff...

Post  Sebby (Admin) on Thu Feb 03, 2011 9:25 pm


I got a list of vulval clinics off the vulval pain society website so that was ok..will have to see if they are any good.

Oh but it proves that my local hospitals are liars! cos they kept saying 'oh this is a vulval clinic' they were not just normal gynae and they knew sod all about vulvodynia!

Cant believe the Royal College cant even be asked to look for a consultant for me..Im keeping that email in case I ever need to leak it and shame them!!
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Re: Royal College of Obstetricians and Gynaecologists couldnt give a stuff...

Post  Mouse on Fri Feb 04, 2011 1:48 am

I thought medical folk were caring and compassionate. A career looking after cats may seem a better option. Bloody patients asking awkward questions!

There's a NZ based Vulvodynia website. I emailed last year, no reply as yet. I guess that was your lucky day =)

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Re: Royal College of Obstetricians and Gynaecologists couldnt give a stuff...

Post  Sarah001 on Fri Feb 04, 2011 1:42 pm

I was told if I didn't get any joy from the vulvar dermatologist I could go to a vulvar clinic (the one I was told about isn't on that list oddly) but I'm really not sure they could do anything other than what I've already tried as I'm not suitable for surgery and botox tends to be more help with localised pain rather than diffuse pain. I'm not sure it would be worth trekking the few hours to my nearest vulvar clinic to be told they couldn't add anything to my treatment but the option's there if I want it.
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Re: Royal College of Obstetricians and Gynaecologists couldnt give a stuff...

Post  Melanie on Thu Jul 21, 2011 1:31 pm

Aren't they supposed to be vagina doctors? When I was finally diagnose 14 years ago ( about 6 doctors later) Not much helped, now I don't even bother. I took it into my own hands which most women seem to do to try to find my own answers. Then I just told the doctor what i wanted to try. I found that Naturopaths were the ones that helped the most. So much so that I am now Studying it. Doctors are I guess too busy trying to cure cervical cancer that whats our pain got to do with them. They probably just figure that it won't kill us so why bother. Most general doctors haven't even heard of Vulvodynia.

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Re Royal college of obstetricians and Gynaecologist

Post  ria on Fri Jul 22, 2011 3:53 pm



I totally agree waste of time. Seeing the experts just makes me want to cry Crying or Very sad Crying or Very sad Crying or Very sad Crying or Very sad Crying or Very sad they havent a clue , we are on this journey together, so girls we need as much info as possible on what each of us are doing to BEAT THE V.


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Re: Royal College of Obstetricians and Gynaecologists couldnt give a stuff...

Post  Sebby (Admin) on Sun Jul 24, 2011 6:38 pm


When I first got the V (didnt know what it was then) I asked my then GP for a referral to a Gynea

She said "Why do you want to see a gynea?"

I said "cos I hurt and I need to find out why!"

She said "but gynea's dont deal with vaginas"

I was stunned, but after seeing the ones at my local hospital I kinda agree with her now!!

Best dr I saw was at the Vulval Clinic, general gyneas that I have seen dont seem to have a clue!

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Re: Royal College of Obstetricians and Gynaecologists couldnt give a stuff...

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