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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 …

Comments: 4

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 …

Comments: 35


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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