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» 7 months since the diagnosis
Today at 9:09 am by Gaby

» Did going off antidepressants cause this?
Yesterday at 2:08 am by ryn207

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

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Thu Aug 09, 2018 8:37 pm by Nicola Jost

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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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 …

Comments: 10

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.

Comments: 1

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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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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