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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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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 …

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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 …

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girls at my support group are wonderful

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girls at my support group are wonderful

Post  mary jane on Sun Jan 26, 2014 8:01 pm

I don't know what I'd do without my meetings for London VPSG (vulval pain society) ...I've felt really encouraged when they said it's a very very good sign to have amitriptyline work for my pain at a dose of 50 mg (which is low to them) ....it hasn't been the case for most of them unfortunately.... anyway, I am more positive now...I finished my exams without sitting pain...and I'm starting to WALK AGAIN like I used to...now if only I could get my new doctor in feb. to give me LYRICA I might have a life back!
Now if only I could control my aggressive behaviour and hostility (from the pills)....I shouted at a member of staff 2 weeks ago (crap) and at my room mate today ....hmmmm Rolling Eyes
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Re: girls at my support group are wonderful

Post  zarli on Mon Jan 27, 2014 12:41 am

That's great Mary Jane!!
I so wish I had a support group or even just one person to talk to about 'V'.
Amil worked for me too and as you probably know about me I went off them too quickly and the pain came back. I now take nortriptyline combined with lyrica and they work really well for the nerve pain. I am so glad you sat your exams with out pain, that is so positive. I am back studying at age 42 and I do find it hard to retain information so it will be a slow pace for me to complete the course. My anger and hostility is hard to control and it takes a lot of positive self talk when in a situation that I am unhappy with. I feel I have a little bit of a bad attitude towards happy people as I am suffering this horrible condition and it seems unfair, so I have to keep saying to myself I am not dying so I am lucky. Some times this works and other times it does not. In my lunch brake the other day one lady was complaining of getting sore calves every time she runs and how frustrating it was for her. I reacted very badly and told her "what the f_ _ _ _ are you complaining for you have nothing f_ _ _ _ _ _ wrong with you". I did apologise later but I'm not a favourite at work at moment. Is it just me or does every one have trouble with women in the work place ? I have told my close work ladies about my condition and not one has ever shown me any consideration. I am or was a people pleaser and I have done the nicest things for other women I work with but I never get it returned. I am sometimes negative about women supporting other women.

I hope you get your lyrica at your Doctors appointment, I take 75mg at night which is a very low dose, and it works for me as long as I don't sit for too long or wear tight pants or get very stressed.
xxZ

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Re: girls at my support group are wonderful

Post  mary jane on Mon Jan 27, 2014 10:59 am

thank you, zarli !

has any of your doctor mentioned nerve blocks?

I am highly confused right now at the difference between pudendal neuralgia and classic vulvodynia...I share none of the symptoms for classic vulvodynia, I seem to have pure neuralgia...my q-tip test showed different results every time!!

I get a LOT of buzzing down there and referred pain in my hips and toes, buttocks....that sounds like pudendal problems to me and not vulvodynia...
Have you ever tried seeing Dr Richard Reid in Sidney ?

I know VERY WELL what you mean by other women. I get jealous whenever I see a girl in high heels, I can't wear mine anymore...
and yes, whenever some other girl complains about her "life problems" I just want to roll my eyes and hope she shuts up...
I used to be the sweetest person before this, now I lash out and yell at people Sad
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Re: girls at my support group are wonderful

Post  zarli on Mon Jan 27, 2014 11:09 pm

Hi Mary Jane
Yes I am talking to specialist in March re nerve blocks, she is only doing this to see if I can come off medication, she said its 50/50 chance of working. A part from vulva pain I have pain in my heels, lower back and left side upper back. I get all sorts of sensations down there ! Only yesterday I had 2 hours of feeling like ants were crawling around under my skin in my pelvic area and vulva. I think you are much younger than me , I can only imagine how hard it would be to watch other girls your age carry on with normal life. But every specialist I have seen tells me the younger you are the more chance of V just going away. I think I have nerve pain and I can have pain free sex and my pelvic floor muscles are all good according to several physios I have tried. So it is hard to know which way to turn now ??????? But I am not giving up.......

Wishing you a pain free week
Zxxx

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Re: girls at my support group are wonderful

Post  mary jane on Tue Jan 28, 2014 10:16 am

zarli, you leave me baffled! if you can have intercourse, that is a BIG DEAL!!! I get the feeling of bugs crawling under my skin as well. sucks big time... I see my pain consultant in 3 weeks and see what she thinks is happening...
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