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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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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

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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....

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