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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 …

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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 …

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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 …

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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 …

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List of uk Vulval clinics....

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List of uk Vulval clinics....

Post  Sebby (Admin) on Wed Jan 26, 2011 12:03 am



Last edited by Sebby (Admin) on Tue Jul 12, 2011 5:44 am; edited 1 time in total

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Re: List of uk Vulval clinics....

Post  gem123 on Wed Jan 26, 2011 9:48 am

how w ould i go about getting to see someone in liverpool do you think a letter would work? or would you need to go through a g.p and there is no choose and book option available? thanks gem xxx

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Re: List of uk Vulval clinics....

Post  Sebby (Admin) on Wed Jan 26, 2011 10:48 am


You need your GP to refer you

It should be possible to ask for a specific referal to a specific clinic and or person

Insist with your GP that you need a specialist Vulval Clinc and that that Clinic/Dr has been recommended to you

I have found that I have been told a few times that the Clinic was a Vulval clinic when in fact it was general Gynae and the Dr's knew sod all about Vulvodyia...its why Im pleased to have found this list Smile
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Re: List of uk Vulval clinics....

Post  Guest on Fri Feb 18, 2011 11:08 am

I am seeing a vulval specialist at the wolverton centre which is attached to Kingston hospital, They are a GUM clinic and they refer you to her, Dr mccarthy. Had to wait a good few months for the appoinment but saw her breifly in the clinic and she sounds amazing. So if anyone lives in Surrey/London they might be worth a try. There telephone number is 02089749331. Your gp can also refer you to her.

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Re: List of uk Vulval clinics....

Post  Mouse on Sat Feb 19, 2011 12:51 am

I found my new improved specialist at a vulval clinic. It makes sense that they would have specific knowledge. She is amazing but is very selfishly about to give birth!


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Re: List of uk Vulval clinics....

Post  lolainslacks on Wed Apr 20, 2011 12:53 pm

Does this mean that the doctors on this list as specialists when it comes to vulvodynia and ther pelvic pain disorders? Because I was surprised to see my city listed there, and I had no idea we had any specialists.

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Re: List of uk Vulval clinics....

Post  Sebby (Admin) on Thu Apr 21, 2011 7:06 pm


I have got my refereal to my vulval clinic in London. Im guessing these guys are specialists in anything vulval related as I got it from the vulval society there are so many conditions including vulvodynia. Keeping my fingers crossed.

I was told the last clinic I went to was a vulval clinic but it was just general gynea..its like the drs dont even know what a vulval clinic is! which is why I decided to trust this list instead lol

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Re: List of uk Vulval clinics....

Post  JemimaSurrender on Sun Dec 04, 2011 12:10 am

I just checked this out... I'm desperate to speak to someone who knows what they're doing. The closest I've got so far is a gynaecologist at Solihull Hospital who diagnosed me, but I still feel like I need to talk to someone who deals with it every week, and knows all about the surgery side of it, and what other options I have as I've apparently ran out of medication options!

I had a look through the list and it suggested Burton Hospital. Just a heads up... I spent two years in and out of that place seeing several different "specialists", gynaecologists and surgeons, and not one of them could tell me what was wrong, and kept discharging me. One even brushed me off and gave me an estrogen pessary, when in my notes it said I couldn't have any estrogen and it made my symptoms so much worse! Obviously not too interested in their patients at all. (Apart from Dr. Artley... He's a lovely man!)

If anyone's from a similar area, Dr Hutcheon at Solihull was the best so far. I was told she was a dermatologist and gynaecologist, but she ended up just being the latter. Still, at least I got diagnosed.

Does anyone know anything about the Mid Staffs NHS Foundation in Stafford? I'd be sooo grateful if you had any info!

Cheeeeeers, Beth.

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Re: List of uk Vulval clinics....

Post  Sarah001 on Mon Dec 05, 2011 12:04 pm

In my area the vulval clinic is run by a vulval dermatologist and she visits all the hospitals once a month to see V patients. As at your GUM clinic if you don't see a clinic near you as they usually know who runs it and can refer you too.
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Re: List of uk Vulval clinics....

Post  JemimaSurrender on Mon Dec 05, 2011 12:59 pm

Sarah001 wrote:In my area the vulval clinic is run by a vulval dermatologist and she visits all the hospitals once a month to see V patients. As at your GUM clinic if you don't see a clinic near you as they usually know who runs it and can refer you too.
I think this is who I was originally referred to when I went to Solihull hospital. But when I got there I just had a gynaecologist and she said the other one was "on leave" but that was all she told me. I was really angry as I'd waited for months for that appointment too.
I'd like to try again to get to see her but it's such a pain. Even if my doc refers me, I have to ring up that choose&book place and they never know what you're talking about. Last time I spent 15 minutes on the phone with them explaining it was a specific person at a specific hospital that I had to see, only to be told if it wasn't on her list, she couldn't book it.

Ahhhh!

The system drives me mad, it really does.

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Re: List of uk Vulval clinics....

Post  angelfangs on Sun Sep 30, 2012 6:37 pm

hi, i know this is an older thread but the uk vulval clinic linky doesn't work for me. is there any other linkys or does anyone know if there are any people that can deal with vulvodynia in the north-east of england.

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Re: List of uk Vulval clinics....

Post  Loulou on Mon Oct 01, 2012 8:20 pm

Hi angelfangs - I think you can get to the list via this link:

http://www.bssvd.org/index.php?option=com_sobi2&sobi2Task=search&Itemid=16

If this doesn't work go to www.bssvd.org, click on the Vulval Clinics tab and then download the list.

I live in the North East and it looks like there is a clinic at the RVI but I haven't been to it - I was diagnosed at the Blyth GUM clinic by Dr Hotonu. Your local GUM clinic would be a good first port of call if you're having no luck with your doctor. The clinic can then refer you on.

My first, and so far, only referral was for assessment of my pelvic floor. So if you do go the RVI clinic I'd be interested to know how you get on.

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Re: List of uk Vulval clinics....

Post  angelfangs on Mon Oct 01, 2012 10:32 pm

thank you loulou. the linky you gave me works! the rvi seems to be the nearest to me.

my gp was the one who said what i have sounds like vulvodynia (after seeing 2 other gps and a gynaecologist, all of which insisted i must have thrush even though all the tests were negative and treatment wasn't working. and then because of the negative tests they insisted nothing must be wrong with me). she put me on amitriptyline (an antidepressant) but it hasn't started working yet as i've only been taking it for 2 months and my drs practice now refuses to prescribe it for me. so i'm back to square one. tomorrow i have a gp appointment so i'm going to be asked to be refered to a vulval clinic or a womens health physiotherapist, which ever they can do as i'm also having pelvic floor issues.

i tried to go to the local gum clinic once, i didn't realise it was at the hospital and had my first panic attack after walking through the door and then running as fast as i could towards the hospital gates. bad things have happened to me at the local hospital.

if i do get any where with the rvi or a physiotherapist i will post about it on here.

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Re: List of uk Vulval clinics....

Post  Loulou on Thu Oct 04, 2012 8:42 pm

Angelfangs, sorry to hear you've had bad experiences with the GPs and hospital - unfortunately thats not an uncommon experience for us vvd sufferers Mad If you don't have any luck with your appointment try another GUM clinic, you don't have to go local.

And if you really want the antidepressants don't let them fob you off, or go to another clinic if necessary. I must admit tho that i have avoided the antidepressants as my feeling is that they treat the symptoms but not the cause. That was my personal choice (my consultant agreed as she said she would rather leave them as a last resort too) and my pain levels have come down since i've been doing regular chiro, yoga and pilates.

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Re: List of uk Vulval clinics....

Post  mary jane on Sun Oct 06, 2013 1:19 pm

I was diagnosed in 10 minutes at the GUM clinic at St Mary's Hospital in London. I'd recommend it to anyone else. It's the only way someone will actually examine you in this country, GPs barely look at the area
I'm now waiting for their referral letter for their own vulval disease clinic.
I pray I find a good doctor! I just started university and it's so hard to focus on lectures Neutral 
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Vulval clinics in UK

Post  Jo44 on Mon Jan 08, 2018 6:19 pm

Hi

Can someone please tell me if there is a Vulval clinic in the West Country, UK please? I’m near to both Exeter & Plymouth.

Thanks in advance


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Re: List of uk Vulval clinics....

Post  HB on Sun Jul 29, 2018 8:38 am

Hi, I saw that AngelFangs was based in the North East UK. Have you had any luck in the area? I know you posted years ago. I was diagnosed with provoked V 8 years ago in the South West and have lived up Durham way for about three years. After trying all medication routes with no success I was referred for physchosexual counselling but there is no funding in the available on the NHS in the area. The GP and hospital kept trying to fob it off to one another and have left me with no help. Wrote to the head of the CCG and was referred for 2nd opinion (it’s actually about an 20th opinion). This DR told me that I had made myself this bad, that I need to imagine I have a functioning vagina and just try even through the pain and that he would not refer me for physchsexual counselling. Have hit a brick wall to be honest it’s so depressing.

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