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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» 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

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

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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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 …

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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.

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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 …

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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



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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.

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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


help i have just joined and am looking for any advice or help

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help i have just joined and am looking for any advice or help

Post  jadegreen on Sun Aug 26, 2012 11:25 pm

hi just joined tonight as my daughter, who will be 14 in november and for the past 3 months has had, which i now think could be vulvodynia, she has been treated for thrush by the doc,even though she didnt have the most obvious thrush symptoms. on our 3rd and last visit to date to the doctor we were told dont use the thrush cream anymore and see how you go! my daughter is in agony, she doesnt itch or have lumpy discharge, she has pain after peeing but not pain during peeing, she has a white chalky discharge, which doesnt smell and is in constant pain, she says she isnt sore to touch but her vagina is in agony, she suffers the pain and then all of a sudden it becomes too much for her and she is flat on her back for hours at a time. she has not attended days out with her friends because of this, so i know she must be in pain, doctor hasnt been very helpful i have had to research what might be wrong with her myself and this is the only thing that relates to what she is feeling. any advice or help would be greatly appreciated.

jadegreen

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help i have just joined and am looking for any advice or help

Post  Abi2 on Fri Aug 31, 2012 12:29 pm

Hi - this sounds familiar. I have only just been diagnosed and know that any reply is better than no reply so I thought I'd share with you the little info I have. It must be very scary at 14 to deal with this, it's hard enough at 30! As a child i frequently complained of itching and can remember my mum taking zinc and caster oil everywhere with us and only washing my underware in hot water without detergent. As an adult I have had thrush occasionally and the last time I had it I was given repeated thrush treatment by my GP even though it didn't feel itchy anymore, eventually I went to a GU clinic and they took swabs and urine samples which came back clear. It wasn't thrush that I had it was vulvodynia (a few things I've heard seem to pinpoint thrush treatement as the trigger to vulvodynia). Anyway the first advice the specialist gave me was to wash with Oilatum gel and apply Epaderm ointment a least twice a day and that did help with the localised burning and discomfort. As far as I'm aware you can buy these from chemists but I would demand to see a GU specialist or just walk into a GU clinic and ask for an appointment directly, as my GP still doesn't seem to recognise I have it and even asked me how to spell it because she'd never heard of it. I've had back, lower tummy and leg pain with it so I have now been prescribed tablets (a mild sedative) by the specialist that I'm hoping will help with that. I also try to wear proper shoes with a good sole (probably not what she wants to hear). I never use any other products when I'm washing that area and I take showers instead of baths. As far as I've gathered it's to do with the nerves and pain receptors and how the brain is recieving pain signals, so keeping relaxed eases the pain alot but that's easier said than done. I really hope it gets better for her, if you have any other questions I'm happy to chat.

Abi2

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It still might be yeast

Post  Darkhorse on Sat Sep 01, 2012 9:46 am

I have suffered from yeast (thrush) infections nearly since your daughter's age, and I'm in my mid-40's now, so I have quite a bit of experience with recurring yeast infections. I would say in all these COUNTLESS relapses I've had, perhaps once or twice I've had the classic white, cheesy, lumpy discharge that is characteristic of yeast. I've itched only very, very rarely. Doctors looking for the textbook case of yeast infection easily overlook the patient who has yeast but it's not that obvious.

I also have vulvodynia, but before you jump to this diagnosis (which I believe in my case was partially caused by heavy use of anti-yeast creams), YOU NEED TO TREAT THIS FULLY AS YEAST. Also, did the doctor take a culture? A swab of the discharge should be done and sent to a lab. The labs here in the U.S. usually take a few weeks to grow a culture for yeast. So a doctor just guessing in the dark and leaving your daughter to suffer without treatment could be really overlooking a real infection. You need an actual culture to say, "negative" to know that they didn't find yeast. And even then, many of us who are sensitive to yeast growth can have irritation to very small amounts of yeast that don't show up on a culture, either (which is a normal organism in the body, but for some of us, our bodies react very strongly to it).

I can't use creams anymore because my skin is so sensitive to them, so I take an oral anti-fungal medication. This is what I think your doctor should prescribe for your daughter, because that kills the fungus without using irritating creams, and everywhere in the body (like in the intestines as well). It certainly can't hurt her if it's not the answer, but if it IS yeast, this will give her a chance of being treated more thoroughly. The medication I use is fluconazole, that's the most common for vaginal yeast. I use it a few days because my cases are very stubborn, even though the advertisements say one pill is enough (I wouldn't rely on that). If you use this treatment for a few days and there is no relief, then I'd say it's time to consider other possibilities, but given your description, I think it's highly likely she still has a yeast infection (especially since there IS a discharge that looks abnormal.)

Remember, the symptoms don't have to be that clear-cut for it to be yeast -- I'm living proof that you can have no discharge, no smell, only burning pain and when I take the oral medication, there is sometimes an improvement.

Darkhorse

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Re: help i have just joined and am looking for any advice or help

Post  Newbieadelaide on Fri Sep 14, 2012 1:10 pm

Hi there

I really feel for your daughter. Like the previous poster said thrush can still be present even if the typical symptoms are not there. After treating an infection you can be retested about a month later to see if there is still an infection. You need to allow a month in order to get a more accurate result.

May I suggest that you try and get to a dermatologist? My VV came on after a horrible trush and strep b episode.

On my post I list the recommendations from my dermatologist.

All the best

Newbieadelaide

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Re: help i have just joined and am looking for any advice or help

Post  Loulou on Sat Sep 15, 2012 7:59 pm

Hi jadegreen

My symptoms were exactly like your daughter's when I started with vvd last year. DEFINITELY stop using the thrush cream, i'm convinced it was a major factor in making my pain worse. If she can bear it try not to put anything on down there - the less possibility of something causing further irritation the better.

Given that your daughter's symptoms are so similar to what i experienced, I would encourage you and your daughter to check out another potential cause of her pain - a misaligned pelvis and/or pelvic floor dysfunction.

I was convinced i had thrush, due to the symptoms you've described, even when all the tests came back negative, but, long story short, I found out that my pelvis was misaligned (one side higher than the other and tllted) and that my PF contractions were a little slow to relax. Once I started dealing with this (through chiropractic treatment, yoga and pilates) my symptoms have improved enormously - pain/burning is now minimal (more very slight discomfort than pain), discharge is back to normal, no more pain after peeing and in fact i'm now having some days each month when i feel NORMAL Very Happy

Also, you don't say if she's had a proper test for thrush? If not, do get one. If you're in the uk you can make an appointment at your local Genito-Urinary Medecine (GUM) clinic without a referral from a GP. Also has she been under a lot of stress prior to the onset? If yes, then that's another similarity to my case.

Everyone is different with this horrible condition so i'm not saying my solution will definitely work for your daughter but its another route to explore.

Loulou

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thank you

Post  jadegreen on Mon Jul 01, 2013 11:54 am

hey ladies, thank you all for your comments and im sorry it has taken so long to reply, we have had so much going on, my daughter has sadly been diagnosed now, after seeing a gynaecologist on a few occasions, as suffering from vulvodynia, we are due to pick up a prescription for amytryptyline, so we will collect that today and hopefully they will help Sad 

jadegreen

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Re: help i have just joined and am looking for any advice or help

Post  Alana3 on Mon Jul 01, 2013 1:41 pm

Be careful with that it causes drowsiness like crazy but hopefully it will work for her!

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thank you

Post  jadegreen on Tue Jul 02, 2013 11:44 am

thanks Alana I will look out for that, she has got 10mg and she has to take one at night, I felt so sorry for my daughter, doctor kept asking her to explain what her pain felt like, she said I cant describe it:( , I think doctors idea is the tablets will relax her muscles therefore easing her pain, we shall see xx

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Re: help i have just joined and am looking for any advice or help

Post  Kathy100 on Tue Jul 02, 2013 2:36 pm

Hi Jadegreen,

So sorry to hear about your daughter. I was given amitriptyline and it did help stop the burning pain. For me it took a few days to work. It did make me feel very tired and forgetful even on the lowest dose, so the Dr swopped me to notriptyline which is similar but with fewer side effects. If your daughters pain is muscular it would definitely be worth her seeing a pelvic pain physio as that combined with doing stretches at home has really helped me so much so that I'm down to cutting my tablets in half & hope to phase them out soon altogether.

Good luck x

Kathy100

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Re: help i have just joined and am looking for any advice or help

Post  Sarah001 on Tue Jul 02, 2013 5:39 pm

Kathy I'm so pleased for you and of course very jealous too! Laughing 
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Sarah001

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Re: help i have just joined and am looking for any advice or help

Post  jadegreen on Tue Jul 02, 2013 9:45 pm

Kathy, thank you for comments, I will keep an eye on her, I have heard they can make you really tired. I have spoken to 3 different doctors and without sounding bad they really don't seem to know much about this condition. thanks again, I will watch out for any side effects and I will ask at my doctors surgery about a pelvic pain physio too

jadegreen

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Re: help i have just joined and am looking for any advice or help

Post  Alana3 on Wed Jul 03, 2013 11:50 am

Unfortunately moat doctoes dont I had to go to a vulvar pain specialist not easy to find

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Re: help i have just joined and am looking for any advice or help

Post  Kathy100 on Wed Jul 03, 2013 2:03 pm

Hi Sarah,

Thanks very much - it makes difference to feel as if I'm at least making some progress. I'm doing about two hours of stretching everyday - aimed at relaxing pelvis, strengthening back, getting hips back into a neutral position & removing twist forward on my left side - phew! Slowly but surely it seems to be making a difference - the V is still there but nowhere near as bad as it was.

How are you getting on now?

Kathy100

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Re: help i have just joined and am looking for any advice or help

Post  Kathy100 on Wed Jul 03, 2013 2:15 pm

Jadegreen,

I saw at least 6 doctors and a gynae who told me there was nothing wrong (which left me feeling like a freak) before I finally found a doctor who had at least heard of V - I wasn't offered any physio or any other help except for the amitriptyline. I found my physio through the pain consultant I saw. I saw him privately as my doctor wouldn't refer me! So it is difficult & distressing trying to find help but it is out there.

Kathy100

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Re: help i have just joined and am looking for any advice or help

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