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» 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
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

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

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 …

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Anyone here with provoked vestibulodynia?

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Anyone here with provoked vestibulodynia?

Post  Tired89 on Tue Jul 19, 2016 5:24 am

Hello, I am 27 years old and I was recently diagnosed with provoked vestibulodynia as well as vaginismus. The cotton swab test made me want to kick the doctor in the face, it hurt so badly. I've had pain with anything touching my vaginal entrance for as long as I can remember. I wanted to know if there are any ladies here with vulvodynia or vestibulodynia who seem to have a lot of vaginal discharge. I have been getting so much and every gyno I've seen says either it's normal and ignore it or its too much, but we don't know why (tests always come back normal). I was thinking there is some correlation between the vestibulodynia and the increased discharge. Its very thin and white and comes down ALL the time; I get no breaks. I know it isn't normal for me as I've never had it before. It started 2 years ago after my bf and i tried using a finger instead of his penis to see if anything could even get in there and I guess I really forced my body and wound up very irritated after. Shortly after, the discharge appeared and never left. I'm hoping if I get the vestibulodynia treated, this obnoxious discharge will go away too.
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Re: Anyone here with provoked vestibulodynia?

Post  web96 on Tue Jul 19, 2016 6:17 am

I had provoked pain since childhood too. Mine, along with a few other people I've connected with online was caused by a very severe allergy to detergents. Switch all your bath products, and anything that comes in contact with your body, to natural sulfate free products. Just try it for a month and see if it helps with the provoked pain. My story is in my sig, and I believe there is another woman who has a similar story on here, posted in support and advice.

As for the discharge, I too have always had a lot. My doctor also said it was normal. Not sure how or if it relates to my vulvodynia. I have to wear panty liners every day
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Re: Anyone here with provoked vestibulodynia?

Post  Sesquipedaisy on Tue Sep 13, 2016 5:50 pm

Tired89 wrote:Hello, I am 27 years old and I was recently diagnosed with provoked vestibulodynia as well as vaginismus

I'm so sorry. :
Tired89 wrote:with provoked vestibulodynia this past Friday. It's a lot to process, and having vaginismus on top of that sucks too.

[quote="Tired89"] The cotton swab test made me want to kick the doctor in the face, it hurt so badly. I've had pain with anything touching my vaginal entrance for as long as I can remember.

It sounds like you have primary provoked vestibulodynia, meaning that you've always had pain, as opposed to secondary vulvodynia, which develops after a period of pain-free genital contact and/or penetration.

My vestibulodynia is secondary, as I had sex from 20 to 24 without pain, had my first painful episode when I was 24 that went away on its own after a few months, and now I'm experiencing another episode at 25.

Tired89 wrote: I wanted to know if there are any ladies here with vulvodynia or vestibulodynia who seem to have a lot of vaginal discharge. I have been getting so much and every gyno I've seen says either it's normal and ignore it or its too much, but we don't know why (tests always come back normal). I was thinking there is some correlation between the vestibulodynia  and the increased discharge. Its very thin and white and comes down ALL the time; I get no breaks.

I do not, but 1) vestibulodynia is a heterogeneous, meaning that it often presents differently for different patients (i.e., we will have different symptoms with, and even potentially different causes of, our disorder) and 2) vestibulodynia is often comorbid with another condition (i.e., having vestibulodynia means it's not unlikely to have another medical issue as well) (ncbi.nlm.nih.gov/pmc/articles/PMC3566870/).

Some vaginal discharge is normal. The Care Down There website, managed by a team of Australian health professionals, asserts that:

In general, the golden rule is: vaginal discharge is normal if the colour is clear, white or yellow, it is not smelly, and is not associated with vulval discomfort or tummy pain. (caredownthere.com.au/_pages/normal_discharge.html)

It is not normal to have discharge with a strong "fishy" smell and/or a lumpy texture, like cottage cheese. Both could be signs of an infection or other issue.

Tired89 wrote: I know it isn't normal for me as I've never had it before. It started 2 years ago after my bf and i tried using a finger instead of his penis to see if anything could even get in there and I guess I really forced my body and wound up very irritated after. Shortly after, the discharge appeared and never left. I'm hoping if I get the vestibulodynia treated, this obnoxious discharge will go away too.

I would say that you definitely know your body, and better than your doctor. Don't accept that this is normal unless the evidence convinces you that it is.

May I ask what you've been tested for? You could possibly have an uncommon vaginal infection that is exacerbating your vestibulodynia and causing the discharge.

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I have provoked and use dilators

Post  Sandra4372 on Wed Sep 14, 2016 1:30 am

I have provoked and magnetic dilators are the only thing that helped me. My physio pt told me about them. VuVa brand.

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Re: Anyone here with provoked vestibulodynia?

Post  lindsey_taylor on Wed Sep 14, 2016 11:12 pm

I have secondary provoked vulvodynia. So far nothing has really helped me--I've had the issue for over two years and I also have a white discharge with a slightly different than normal odor for me. I never had this discharge before the pain began in 2014. Sad I'm sorry you have this issue. I hope we can ALL get better.

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Re: Anyone here with provoked vestibulodynia?

Post  A2015 on Thu Sep 15, 2016 12:21 am

Hello Tired89,

I had secondary provoked vestibulodynia (I had this age 18-19 and again last year age 22). Have a read of my previous posts if you like, as I have had a full recovery.

Just wanted to chime in here as I read your post about discharge and this is something I noticed too when I suffered with this condition (the first time when I was on the pill and the second time last year following an infection). I, too, felt my discharge changed (consistency & a subtle change in smell), and it was something all doctors examining me said looked 'perfectly normal'. But we all become observant of any subtle changes and I knew it was not the same. This was the reason I was initially convinced I must still have some kind of underlying infection or imbalance causing the discharge change. However, my pH was normal and tests showed no imbalance or infection.

Since recovering (I now have no pain at all - still feels a miracle to write these words), my discharge also returned completely back to normal. Like you say, I suspect any nerve pain/inflammation in the vagina/vestibule simply causes the discharge to change. I can't give any answers why but I just wanted to write that I know exactly what you're referring to! And again to reiterate what others have posted; you know what you know - don't let doctors make you feel everything is normal when you're suffering.

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I didn't know about these replies

Post  Tired89 on Fri Dec 09, 2016 9:32 pm

Hello ladies, thank you for your responses. I never recieved notifications that people were responding to this post Mad

A2015, thank you for your success story! I tried to pm you, but I don't know if it went through. I hope you see this. I'm still pretty new to this site, so I can't figure out how to view your story on how you recovered, but I am really dying to know. Just to know there is a possibility that the vestibulodynia and this horrid discharge could go away is so uplifting. This issue has had me so deeply depressed and I haven't been happy in so long. I'm praying for everyone.
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is there a cure?

Post  infinitelywondering on Fri Dec 09, 2016 11:38 pm

I'm so worried I will never be able to cure my provoked vestibulodynia Sad

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Hi

Post  Suzie on Tue Dec 20, 2016 2:03 am

Hi everyone,
Just wondering what's the best route to go, to manage, treat, or cure Vulvonydia? I've tried amitriptyline (10mg)for a yr... Couldn't tolerate it at all..It didn't help with the pain either...Also tried PT for several months, didn't find any relief in that... Mainly because we only did Vaginal trigger points, maybe 3 times throughout the several months.. I'm considering trying PT again, but I'm not sure if that's the best route. I am also trying to see a Naturopath Dr, to help manage my pain, with natural meds. Is there anyone currently doing PT and taking something for the pain, that has been successful?

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Re: Anyone here with provoked vestibulodynia?

Post  Tired89 on Tue Dec 20, 2016 3:01 am

Hi Suzie. Do you have generalized vulvodynia or localized/ provoked? I have provoked, but the only remedies I've tried so far are vaginal estrogen and hydrocortisone suppositories for inflammation. The hydrocortisone didn't do anything and I'm still using the estrogen which doesn't seem to be doing anything either. My next step is going to be physical therapy and botox if the pt by itself is too painful. I'm sorry I couldn't answer your question, but I've read a few good things on women having success with the botox and then using dilators. Usually that route is taken when all else fails, but it seems to really benefit those with provoked vestibulodynia. Physical therapy also seems to be quite effective, but only when you have the right therapist Rolling Eyes I would say give it another shot, but with someone else.
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Re: Anyone here with provoked vestibulodynia?

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