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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

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you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

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Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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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