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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

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

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

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

Wed Feb 14, 2018 3:33 am by Athena


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 …

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Sat Feb 10, 2018 12:18 am by rockylife


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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

All knew to me!

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All knew to me!

Post  Guest on Thu Feb 17, 2011 3:45 pm

Sad Hi everyone.

Am knew to the forum and this is all very new to me and by reading other peoples stories, slightly different.

Havent been diagnosed with anything yet, but am very swollen, red and sore.

This all started for me in September of last year when stupidly I left a Tampon in and didnt know about it Embarassed It was in for two weeks and had been pushed right up to the top! Awful. Went to the GUM clinic who found it and pulled it out. Was kept in over night as i felt unwell and very sore and irritated down below. Was given strong anti biotics through a drip to clear up any infection. Still wasnt feeling completely right after a week on anti biotics so went back to the gp who put me on more anti biotics that made me really poorly and ended up back in hospital with fever and pain in my stomach. Was put on yet more anti biotics through a drip even though my blood results showed no infection! Finally they stopped all anti biotics and was told to go home and use just water for the inflamation down below.
Took me a couple of months to recover from the effects of all the anti biotics and was weak for ages and very swollen and sore down below. Couldnt walk sit or wear any under wear. After various steroid ointments, thrush creams, pesseries etc still not much better.
This whole experience has turned my world upside down and i feel very depressed. I have gone from an active 35 year old full of life to being stuck indoors in my pj bottoms. I feel like every time i walk i am making the swelling worse.
I am now under a gynaecologist and a dermatologist and waiting for a vulval clinic appointment in March (which i have waited 4 months for).
The steroid ointments made everything worse. Was perscribed Trimovate by the dermatolgist which i have been using for a week and so far i think it has taken some of the swelling down but can only use it for another 7 days max as it is so strong.
Just cant see a light at the end of the tunnel at the moment and have forgotten what life used to be like. This has taken over my life and bothers me 24/7. Just dread everytime of the month as this irritates me even more.
The doctors have said that one of the anti biotics i was on can give you an allergic reaction like this or the tampon itself being in for so long has irritated everything. Just hope in time it heals itself!
I am glad i have found this website to read everybody elses experiences and share stories.
Am also taking anti allergy tablets.
Sad Sad Sad Sad Sad Sad Sad


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Re: All knew to me!

Post  Sarah001 on Thu Feb 17, 2011 3:51 pm

Hi Joanne, have the doctors made sure you don't have a bacterial imbalance after the tampon incident? I'm assuming they have swabbed and checked for bacterial vaginosis? And cultured a swab and let it grow in the lab to see if it's ok? It wouldn't necessarily show in blood tests if it's an imbalance of the normal bacteria down there. Also get them to check your ph if you can persuade them, if that gets out of whack it can cause alot of problems. If they haven't tried the above things get a bit pushy and make them. Also take plenty of acidophilus to help your body get back on track. It may well sort itself out over time.

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Re: All knew to me!

Post  Guest on Thu Feb 17, 2011 4:00 pm


Yes had swabs done about 5 times, whilst in hospital and by the gyni i saw 4 weeks ago. How would they check for ph, Had a swab done for thrush that came back negative. Gyni has said that the inside has all healed up because that was all so swollen too. Just the outside that is taking its time.

Thank you for your advice, so nice to have someone to talk to!


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Re: All knew to me!

Post  naomi on Thu Feb 17, 2011 4:30 pm

hey hun!

well there's a few regular girls on here and we will be here for you. Pick our brains to see if we can work something positive out.

Have they tested you for DIV? Desquimitive Inflammtory vaginitis (excuse the spelling...long day). Google that. I thought it could have been that at first and they tried some treatment for that (i forget the medication but have got it written down somewhere). It helped with the heavy discharge etc.

Also, sounds crap but i used Predfoam at one point (in the liust of diff medications)...its a steriod foam that folk usually use up their bums Smile but i had to up my Lady La-la.

Just it sounds more like infection from ur description. Have they taken biopsies?

Try to keep calm (pot, kettle, black!) and rest up. We're all here for you

Nai xxx

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Re: All knew to me!

Post  Guest on Thu Feb 17, 2011 4:56 pm

Thank you so much for all the information! Will look that up!
So far they have only said its an allergic reaction to the anti biotics, all swabs came back clear.

Have good days where i am really positive and other really dark days when i think i will be like this forever! I get really disapointed when the creams i am given dont work and actually make it worse! I am looking forward to seeing the vulval specialist in March! Think my doctors are sick of the sight of me. Sure they think im loosing my marbles, always cry when im in there!

Has any of the medicines worked for you?

Jo x


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Re: All knew to me!

Post  Sebby (Admin) on Thu Feb 17, 2011 7:36 pm

Hi Joanne and welcome to the forum..i've just said hello to you on our facebook group Smile

I was on antibiotics for years when younger for acne and I reallly do believe that this did contribute to the V as they kill the good bacteria as well as the bad.

Acidolphilis is a great idea, I've started to take it myself

Also cut down on sugars and up your B viatmins..I keep getting low folic acid levels and just recently read that uping this is one of the natural remidies for Vulval irritations

Vulval clinic is deff the way to go, Im going to get refered on Tues...down the drs again, I dont know why they just dont let me move in!

Hope we can help you find a solution and we are all here to virtually hold your hand Smile


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Re: All knew to me!

Post  Guest on Thu Feb 17, 2011 7:46 pm

Thank you so much! Will try everything you have suggested! The antibiotics made me so ill! Took everything out of me! Its so annoying because i didnt need them all anyway! At one point i was on a cocktail of three at a time! Awful! Definitely think this has what has triggered this off in me! Just wish it would boreoff now!

So nice to know that this is here for so many people feeling so alone and depressed in it!

Cant give up hope Very Happy


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Re: All knew to me!

Post  noni on Thu Feb 17, 2011 9:30 pm

Hey Joanne!! Smile

You will get the advice and support u need on here!

Just as many of us have had to self diagnose ....you might need to self medicate, meaning....what some of us have done is actually do the research and bring it to our GPs to get prescriptions...etc etc

Im on Ami now...brought the Vulvodynia survival guide to my GP showed her the page on tricyclics and she wrote up 20 mg a day for me!

We;re all really guinea pigs on here and its a crap shoot!

But...fuck it...you are in good company here!!


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Re: All knew to me!

Post  Guest on Fri Feb 18, 2011 8:19 am


Are they anti depresents?

Cant beleive how many people live with this! Before this started for me i had never heard of it! If i was ever sore down there or had thrush i would use cream and it would go! Just cant beleive im stuck with it for now!

Thanks for all the info



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Re: All knew to me!

Post  noni on Fri Feb 18, 2011 11:55 pm

check out my web site www.livingwithvulvodynia.ca


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Re: All knew to me!

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