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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

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

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


Lost and depressed

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Lost and depressed

Post  Elc88 on Sat Jul 20, 2013 1:24 pm

I have completely reached the end of my tether with this...

Four years ago, I was given a bath bomb. I had a really lovely bath, which turned bright blue with all the dye in the bath bomb. The next day, my bf and I were n bed, and it was like being with a cheese grater. Of course, I thought it was thrush, I tried the creams, they didn't work, went to the Dr, they gave me more creams and pills, went back to the Dr was given more thrush treatment... 6 months later they spiced things up with eumovate (steroid) cream, then they went back to the thrush treatments. After a year, I was referred to the vulva clinic, after 15 months, I finally saw a specialist an was diagnosed with vulvodynia. The Dr told me that on average it lasts 18 months, an I though 'great, only 3 more months of this hell'.

My first appt with the vulva clinic, I left with emulsifying ointment, anti-depressants, anaesthetic, instructions to cut out just about everything, and a whole lot of leaflets, and I was pretty happy that it would be over soon. I was referred to a physiotherapist to teach me pelvic floor exercises, an given cones to help stretch my muscles. Nothing helped.

I saw that specialist for 2 years before I moved to a new city 300 miles away and was referred to a new gynaecologist. This came with a whole new set of tests. I was told I had thrush again, I had swabs taken, and I was told that I had a collection of lumps around the vestibule which she thought were warts. Of course, I'm sure most of you have jumped on any new possibility that it might not actually be vulvodynia - I went to the sexual health clinic for tests, knowing that if I tested positive for anything, it would mean my boyfriend had cheated on me, but at least I'd be clear of this hell. It wasn't warts. It also wasn't thrush.

Six months ago, I thought perhaps it was a hormone defficiency, so I started to take herbal supplements for menopause (I'm 24), and waited until I went back to the gynaecologist. The gynaecologist decided to try me on estrogen supplements, which were horrible - I took them for a month and nothing helped, but coming off it again, I started to feel really depressed and tearful.

Five months ago, I decided it was an allergy to sulfates, and cut out everything that contained even a hint of them.

About 4 months ago I returned to the gynaecologist, and she said we had two options -steroid cream and come back in 3 months for a biopsy if that didn't work, or just go for the biopsy. I decided I had had enough and opted for the biopsy. I hadn't realised it would be a deep tissue biopsy, so I had only arranged to leave work for an hour, and had to go back afterwards (ouch!) but I didn't mind because it was finally going to give me some answers! Three months ago, I got the answer - contact allergic dermatitis!

I was so pleased I had an answer - there it was, finally, in black and white, it's not vulvodynia! There's a cure! I was so relieved, but I was trying so hard not to get my hopes up. I applied the cream every day for 2 weeks, then stopped for a week, applied it again for another 10 days before I got concerned it was causing everything else to feel swollen. I switched to a non-steroidal herbal equivallent, used that for 3 weeks, but that hasn't worked either.

I stopped using it 2 weeks ago now, and just feel really helpless. I finally had an answer and a way forward, but now it's back to this in-explainable pain, and I have no idea where to go next. The only light on my horizon is an allergy test next month, but I've stopped using everything I can possibly think of, and I'm just back in this horrible situation again.

I'm still with my boyfriend, and we've been together for nearly 4.5 years, but we haven't been together for 4 years now. I'm 25 in 6 weeks, and I'm starting to reach the age where I'm thinking about the possibility of getting married, having kids down the line, but I just don't know how I'm supposed to be able to do that! I can't get married because I can't consummate it, and I definitely can't have kids. Although I love my boyfriend, this is not fair for him - he's young, and should be able to enjoy his life, and I can't escape that horrible feeling like I'm just holding him back, and he's only here out of obligation. I can't speak to anyone about it, because it's impossible. I told my closest friends about this problem 2 years ago, but they haven't mentioned it since, and I think they have assumed it's all better now, because why wouldn't it be.

My current job has me 300 miles away from home, and I've been so lonely, that when I came off estrogen, it threw me into depression. I started to get out from under my cloud, but the failure of this latest cure just has me spiraling back down to my lowest ebb, and I have no one to help support me through it - even my boyfriend is 300 miles away. All I want to do is cry, I haven't got a clue how to go forward, and I'm just drowning in it all.

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Re: Lost and depressed

Post  Sarah001 on Sat Jul 20, 2013 5:24 pm

If it is contact dermatitis have you tried any anti-histamines? I would have thought if it was allergy based that would be the place to start if you haven't already, I'm not sure which one would be the best for it as they all work better for different problems but it might be worth a try? There are also anti-histamine creams but I think I'd start with tablets. Also I think I would look up all the ingredients in a bath bomb if that started it and see where else these things could be, it might lead nowhere but it's something I would do just in case. When I went to a GU clinic to get checked out the dotor there was telling me about a lady who had contact dermatitis behind her V and they just couldn't figure out why because she'd stopped using soaps etc and finally it emerged her husband was reading a newspaper before going to bed then he'd touch her and she was allergic to the newspaper print so it could be any number of things causing your symptoms. If you haven't tried anti-histamines though I would at least give that a shot.
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Re: Lost and depressed

Post  Elc88 on Sat Jul 20, 2013 6:52 pm

Sarah, thanks for the suggestion, that is an unusual but good idea. It's definitely not newspaper ink, but over 4 years, I can't think of anything I haven't stopped using for at least a little while... I wondered if there was a chance it's something I'm eating as well. But also can't help but shake that feeling that, while the biopsy found a problem, maybe there is more than one.


I meant to say in my post -I'm sorry for the incredible length, I'm so frustrated it kind of ran away with me! My one bit of advice for others would be to ask their gynaecologist whether they think a biopsy is something they will be offered eventually. Despite the pain and intrusiveness, I wish I had had mine 3 years ago - it would have saved me so much time, money, energy and tears chasing false possibilities.

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Re: Lost and depressed

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