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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

Comments: 0

vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0


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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