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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 …

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


So pissed off with my shit life!!!!!!!!!!!!!!!!!

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So pissed off with my shit life!!!!!!!!!!!!!!!!!

Post  helen4444 on Sun Nov 14, 2010 1:36 pm

Hi,I thought life couldn't get any fucking worse= how wrong was I. Yet again I have been unsuccessful in getting my pension,some unqualified git seems to think that by some miracle this horrendous condition is just going to go, wonder when she suddenly became such an expert!! One of my friends mum was diagnosed with lung cancer on friday and another friend is undergoing tests ? MS ? something worse. It's not easy telling the kids they can't have what their friends have cos a)can't afford to and b) too restricted by this fucking twat pain- Fuck,shit,bollocks,fuck,fuck,fuck-AHHHH that feels a bit better- think i,ll have some chocolate fuck the diet!

helen4444

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Re: So pissed off with my shit life!!!!!!!!!!!!!!!!!

Post  Mouse on Tue Nov 16, 2010 1:35 am

Helen, can you appeal? It would be fab if this person with knowledge of a cure could share it with us. Do you have a specialist that can provide a letter to support you?

Chocolate sounds like a bloody good idea.

Mouse

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So pissed off with my shit life!!!!!!!!!!!!!!!!!

Post  helen4444 on Tue Nov 16, 2010 11:09 am

Hi
Thanks 4 your reply- this was my first appeal can appeal once more.The letter from my gyno is fab clearly stating this condition will be life long and I will not be able to fulfil the role I had, they (pension people) just keep saying i might get better.I have paid into this pension scheme for years.I need to look up about chronic pain and what research says but just can't bring myself to look properly for fear of getting even more down. My gyno thinks i may get better but wrote this letter to try and allieviate my financial stress.He says until stress is out of the equation i will not improve.Need more chocolate now Crying or Very sad

helen4444

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Re: So pissed off with my shit life!!!!!!!!!!!!!!!!!

Post  Mouse on Tue Nov 16, 2010 7:39 pm

FFS surely they will assess you again, by which time someone "might" have found a cure! It's a strange kind of logic that you might get better. Who would be more happy than you ....FFS!!!

Would it be helpful to become a patient at a pain clinic? Chronic pain can steal your soul, get some more experts on your team Smile Have you got a therapist? You can't have mine but god that's helpful.

I'm getting really chubby and I eat a sickening amount of fruit and vege.. how is that fair? Curse that bloody chocolate.

Mouse

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Re: So pissed off with my shit life!!!!!!!!!!!!!!!!!

Post  Sebby (Admin) on Tue Nov 16, 2010 9:17 pm


Hey Helen

Sorry to hear how shit things are for you..definitely appeal! That man obviously has no proper understanding of chronic pain conditions.

Is there anyway you can see another person to assess you if you are unhappy with how he has assessed you?

I also recommend the pain management clinic..they understand pain conditions and could help back up your assessment and also back up the gyneas letter!!

Let us know how you get on

Sebby
xxx
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Sebby (Admin)
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Re: So pissed off with my shit life!!!!!!!!!!!!!!!!!

Post  helen4444 on Wed Nov 17, 2010 3:47 pm

Hi,
Thanks for all your suggestions, waiting for union response,unfortunatly i am not told who the medical assessors are.Will be seeing my gyno next month,think he may suggest a pain cons he has asked before only 1 prob-she is my old boss. I might have a go at putting a report about me together and ask my Gyno if he is willing to sign it.Apparently if you can breath your chances of getting pension is poor.
Can't believe I am fighting for a monthly amount that is a quarter of what i used to earn.

My car is costing me £500 and because of tax cock ups that another bill of £350

AHHHHHHHHHHHHHHHHHHHHHHHHHHHH














helen4444

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Re: So pissed off with my shit life!!!!!!!!!!!!!!!!!

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