Health Organization for Pudendal Education

Hi, I'm Anna and I was diagnosed with having PNES several weeks ago.
I've been dealing with this latest episode for months but it looks like I may have had this on and off for some years but putting it down to BV, which it wasn't.
Knowing what was actually going on has helped a lot. Mine is a form of vulvodynia, according to the doctor.
I have a past history of fibro, TMJ and related stuff.

Soooo... My question is, is this more common in families?
While i'm dealing reasonably well with this (knowledge has taken away a lot of the stress so the pain levels and management has helped heaps) my sister has over the last month been dealing with what was first thought to be a UTI, then possibly interstitial cystitis, then the last idea was fibroids.
She had a scan and they found nothing.
While she wasn't thrilled with the idea of a possible hysterectomy she at least saw a light at the end of the tunnel. Now she faces weeks or months of trying to find another answer.

Some of her symptoms, the burning sensation, pressure, the urge to pee, are like mine. We both also felt better in the mornings and symptoms worsened during the day.
She does however have a feeling like there's something inside her. Fibroids seemed to fit the bill, until the scan said otherwise.
I've suggested she make an appointment with the same doctor I saw and she'll try to see her asap.

Has anyone here had this happen to other family members? I'd be interested to know if this is common.
Sorry about the long winded intro and any info would be much appreciated.

Welcome to the forum Anna,
Violet just posted to Colskier's thread that Dr Bautrant has seen this run in families. There is no published studies but she said it runs in her family. Colskier said her family members are having similar symptoms. Have you seen a PN aware PT to see if they can help(there is a list off the homepage)? Also the FAQs have info on everything from tests to rule other issues to medicine that might help, also off the homepage. Hope you and your sister can find some treatment.
Janet

My mother and I both have PN, but I am very new to this with very little knowledge, but if there is an inherited weakness like any other condition it must be possible. I really worry for my three daughters, one of which has had an on/off iffy bladder for four years.

Thank you both for your replies.

I'll certainly have a look around the board and the FAQs.
We have one more sister in our family, the youngest. It will be interesting to see if she has problems in the future.
Our mother hasn't had this happen to her so maybe she'll be lucky.

We range in ages from late forties to early fifties, if age has anything to do with it.