Vestibulodynia

[Seminyak]

Hi, I'm just interested in hearing about anyone else's experiences with vulvodynia or vestibulodynia (unexplained pain in the vulva or vaginal entrance).
I've been suffering with vestibulodynia for the past couple of years, which I and the docs think came about because of severe recurrent thrush (had that for 3 years). I went to the GUM clinic at the hospital again today and was referred to their consultant but they didn't have any appointments until the 19th feb, and had a session with a health advisor although she didnt have much to advise, so I thought I'd see if anyone had any stories here. I'm a 23 year old newlywed so this problem is definitely NOT welcome and I want to get rid!! I don't know whether my low mood and total lack of libido are caused by or are a cause of vestibulodynia, but hopefully once the vestib. is gone my mood and libido will improve. So I'm feeling hopeful about that.

The doctor said that you have to treat it to reduce the symptoms and then just wait until the nerves correct themselves, which they should do eventually.

Has anyone else had this problem or is currently dealing with it? I'd like to hear that there is light at the end of the tunnel!

Hi sem. I've been diagnosed with generalised vulvodynia which is burning all of the time. Had it for around a year now, Oh the joy!
I've had low mood and low libido also, which from which I've gathered is normal for this sort of thing. I just don't want anyone or anything touching down there.
Mine was set off by a botched repair after birth and loads of infections of the tear. It's so rare to find anyone who's experienced it, I look in disbelief at people wearing tight jeans or riding bikes!!
I've seen a consultant, but he was pretty crap, gave me steroids and lidocaine which made no difference. I'm going back to my GP's and insisting they give me gabapentin which someone I emailed on here said made a lot of difference.
Only advice I'd give you is not to get fobbed off by the docs, from what I've read it takes a few treatments together to make it bugger off - antidepressants, steroids, physical therapy etc.
since my experience with the nhs, I'm now going private and seeing a private gynae in a couple of weeks. I think mine may be pudendal neuralgia as I also have coccyx pain.
I find it a really isolating condition, I've had to cancel outings and not go to work sometimes, what are you supposed to say 'ooh, awfully sorry can't come in today, my chuff feels like its on fire' .
As a newlywed that must be tough, how do you find your DH copes with it? Mine is great thankfully, I feel bad enough I can't be 'normal' without feeling pressured. I can't even imagine sex without pain now, but am still optimistic I'll enjoy it once again one day.

Hmmm I do realise I haven't given you much hope!! But am hoping this is the start for me!

I've had this/have it, but mine manifested itself as itching. I think it just eventually calmed down on it's own after a few years. However, any attack of thrush sets it off again.

Did you see a doctor about it or have any treatment oranges?

Hi,
My DW had this about 7 years ago.
Went to GP who hadnt a clue so refered to specialist but 6 month wait so we went private!!!!!!! GOt appt 2 days later saw Gynae speciallist who took about 32 seconds to diagnose. Prescribed Gabapentin and Lidocaine gel. This worked well from day one, sex was not too much of a problem and it cleared up in a few months.

The specialist did say that one way to get shot of it is to get pregnant as this often cures it!!

DW has not had a problem since.

Hope this helps

Good luck.

Well mine was mainly itching, so I had some sort of yellow cream. It sort of worked, but I still get flare ups

Ooh thanks for the replies everyone!

June thanks for sharing your experiences!!

what are you supposed to say 'ooh, awfully sorry can't come in today, my chuff feels like its on fire' .

haha! I have been there... Awkward!

I am hopeful this NHS consultant I'm going to see is going to be helpful, the doctor I saw mentioned the combination of therapies like you have done so hopefully they're going along the right lines.

I'm not going to be fobbed off, I'm not!!! I was fobbed off by my GP re. my recurrent thrush (which is annoying as I'm convinced that current irritation led to vestibulodynia!!) and then I found this awesome GUM clinic who have been great so far and actually seem to care!!

Luckily my problem is only in the entrance to the fanjo and a bit inside, not the whole vulva so things like clothing and sitting don't cause too much discomfort.

It just compleeeeeetely sucks because this problem has ruined my wedding and honeymoon as well as everyday life for 2 years ish :-/

balotelli interesting to her that getting pregnant helps! That's a relief actually as am becoming more and more anxious about pregnancy as I'm convinced I am bound to have thrush for 9 months, and therefore be miserable, so to hear that some things might actually improve if I get pregnant is such a relief!

Thanks for giving the names of the medications, I'll make a note so I can see whether it looks like I'm on the right track after my consultant appointment.

Oranges glad to hear your situation is sort of sorted. The doc I saw said it should calm down eventually so good to hear that has happened for you.

Apparently it's still a very unresearched and mysterious problem. Trust me to have such an ailment!!

Oh yes also DH is very very understanding and patient and fab!

Yeah, recurrent thrush can lead to it. The nerves get irritated.