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» 7 months since the diagnosis
Thu Aug 16, 2018 9:09 am by Gaby

» Did going off antidepressants cause this?
Wed Aug 15, 2018 2:08 am by ryn207

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

» GREATFULL FOR THIS WEBSITE
Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

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: 1

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

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


Returning Member

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Returning Member

Post  Coop on Sun Aug 28, 2016 10:46 am

Hi all,

I joined this forum a few years ago but left after I found myself getting a little too caught up. I think a lot of us can fall into the trap of seeing others find a cure & then getting hopeful that their cure will be ours but I think I started trying too many things all at the same time. Anyway I have decided to come back , as I think it will help me to talk about how it's making me feel.

I have had vulvodynia for 7 yews now. It has been a long, frustrating journey. There are a few triggers that I think may have started this. I think this started in a very typical fashion, I had a very strongly scented bath one night, and think it caused me to develop thrush. The I visited the dr to get some thrush treatments, they didn't help, I visited the dr again, and have to say I think she was a bit abusive. She was running late, and I was going to be late for work, so I acted a bit annoyed when she called me in: I told her off, so when she did a spectrum exam, she was a bit rough. Now you'll all know that when you have a spetrum exam, the dr is usually quite delicate, but this dr inserted the spectrum, opened it until I gasped, then opened it further. She then proceeded to twist it really agressively, until it brought tears to my eyes. I told her in a pained voice how painful it was, but she continued to twist. It was a horrible experience. Part of me has always wondered if that was the clincher that made me develop full blown vulvodynia...

It took me around a year to be seen by a specialist, she diagnosed vulvodynia and put me on amitriptyline, local anaesthetic, and change to toiletries. I saw her around 3 times before moving for work. When I moved, the new area I lived in didn't have a vulval clinic, so the dr passed me from pillar to post. I sawa gynaecologist, who didn't believe in Vulvodynia. She tried estrogen, thrush treatment. She did a biopsy and diagnosed 'contact allergic dermatitis'. I then asked to see a dermatologist to find out what I was allergic to. The dermatologist scoffed 'a biopsy can say dermatitis, it can't say it's an allergic reaction', but we ran an allergy test and tried steroid creams, but he said the pain I feel could not be dermatitis pain, so he referred me on to a leading specialist in london. She was fab - after 3 years of being passed about, sheconfirmed the original diagnosis, although said it was vestibulodynia. She gave an action plan, putting me back on steroid creams, local anaesthetic, amitripyline, and basically reassured me that we'd find something that could work.

She suggested I see a pain clinic, and that's where I am now. The pain clinic is trying me on some other anti-trycyclic anti-depressants, and also wants me to see a psychiatrist. The theory is that it can help to talk about our pain.

The pain clinic feels the pain might be linked to abuse I suffered as a child - when I was , a girl in our street (around 4-5y.o.) was sexually abusing other kids on the street. My sister came forward about it, and I was there when she met with the social services. When she was telling them about the stuff this girl did to her, I realised she had been doing the same stuff to me, but I hadn't realised it was bad. I don't remember anything she did now, I was too young at the time, but I do remember it happened. The thing is, I know I also made up some of the stuff she did, it was merely saying that some if the worse stuff she had done to my sister, she had also done to me. The best way to describe it is that she was grooming us, and she was just further along the path with my sister.

My parents took us on holiday, and when we came back, this girls parents had told the whole neighbourhood that my sister and I were the abusers, and suddenly we were ostracised. Not long after though, other kids in the street came forward to say this girl had abused them too, but my sister and I still found kids were wondering why 5 minutes earlier, my sister and I were so bad, and those friendships never quite recovered.

I don't think this is the cause, like I say, I don't remember it, but the specialist does want to investigate it with a psychiatrist.

The thing that I find hard is that I'm now at an age where I want to think about kids and marriage, but I can't until I'm better. I can't manage sex at all.... I've been with my OH for 8 years, and we are getting lots of questions about when to expect wedding bells and hints that 'my clock is ticking' (I'm 27!). It just makes me feel awkward having to evade these questions... I'm half tempted to say I can't have kids because of a medical condition, and we're waiting until I'm better before deciding whether yo wed (so I don't tie my OH to a childless future).

Coop

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Re: Returning Member

Post  Coop on Sun Aug 28, 2016 11:00 am

Sorry that did end up being a bit long... I thought it would be good to go into full detail, as my theory is that if it's emotional causes, and I put them out there, it might start my brain healing process...

I should have said my symptoms haven't improved, but I hope that might change!

Coop

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