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» 7 months since the diagnosis
Anyone here with provoked vestibulodynia? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Anyone here with provoked vestibulodynia? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Anyone here with provoked vestibulodynia? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Anyone here with provoked vestibulodynia? EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Anyone here with provoked vestibulodynia? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Anyone here with provoked vestibulodynia? EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Anyone here with provoked vestibulodynia? EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Anyone here with provoked vestibulodynia? EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Anyone here with provoked vestibulodynia? EmptyMon Apr 08, 2019 7:54 am by Jo44

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Anyone here with provoked vestibulodynia?

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Anyone here with provoked vestibulodynia? Empty 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.
Tired89
Tired89

Posts : 7
Join date : 2016-07-19
Age : 30
Location : Florida

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Anyone here with provoked vestibulodynia? Empty 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
web96
web96

Posts : 24
Join date : 2015-03-15
Location : Canada

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Anyone here with provoked vestibulodynia? Empty 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.

Sesquipedaisy

Posts : 6
Join date : 2016-09-12

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Anyone here with provoked vestibulodynia? Empty 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.

Sandra4372

Posts : 9
Join date : 2016-09-14

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Anyone here with provoked vestibulodynia? Empty 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.

lindsey_taylor

Posts : 58
Join date : 2016-06-06
Age : 34
Location : Georgia, United States

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Anyone here with provoked vestibulodynia? Empty 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.

A2015

Posts : 53
Join date : 2015-05-21

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Anyone here with provoked vestibulodynia? Empty 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.
Tired89
Tired89

Posts : 7
Join date : 2016-07-19
Age : 30
Location : Florida

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Anyone here with provoked vestibulodynia? Empty 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

infinitelywondering

Posts : 34
Join date : 2016-12-04

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Anyone here with provoked vestibulodynia? Empty 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?

Suzie

Posts : 5
Join date : 2016-06-29

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Anyone here with provoked vestibulodynia? Empty 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.
Tired89
Tired89

Posts : 7
Join date : 2016-07-19
Age : 30
Location : Florida

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