Anyone here with provoked vestibulodynia?

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.

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

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.

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

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. I'm sorry you have this issue. I hope we can ALL get better.

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.

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

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.

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

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?

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 I would say give it another shot, but with someone else.