Log in

I forgot my password

Latest topics
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: 3

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

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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: 6

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: 3

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 …

Comments: 10

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.

Comments: 1

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 …

Comments: 0


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

Go down

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

_________________
Sebby
XxX

admin@vulvodyniasupportforum.com
avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 37
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

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
avatar
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 45
Location : UK

View user profile

Back to top Go down

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!!
avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 37
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

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 =)

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

View user profile

Back to top Go down

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.
avatar
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 45
Location : UK

View user profile

Back to top Go down

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.

Melanie

Posts : 11
Join date : 2011-07-21

View user profile

Back to top Go down

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.


Ria

ria

Posts : 99
Join date : 2010-07-21

View user profile

Back to top Go down

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!

_________________
Sebby
XxX

admin@vulvodyniasupportforum.com
avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 37
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

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

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum