I've been going through hell and back for the past couple of years. I've been backwards and forwards to the doc this past year and have been treated for Cystitis, Thrush, Atrophic Vaginitis, Constipation etc..... on December 23rd 2011 my doc decided that as all my bits and pieces and every test has come back negative and now all that's left is PNE. From the first day I went there I complained of a pinching in my Urether. I'm a Book-keeper and I sit for hours in front of computers and sometimes (as I work from home) I sit on hard kitchen chairs. I'm also a motorcyclist and also I travel backwards and forwards in a car or van to Germany frequently. Also I lost just over a stone as I'm reducing my High Cholesterol and my sit parts of my backside and undercarriage have no padding left! So all the triggers are there. I kept recently complaining that when I sit, it feels like a burning just at the top opening of the vagina and I feel as if there is a spongey lump there. The doc says that it all looks normal. I am on Vagifem as I'm 51 and perimenopausal. I find that I cannot sit for long now as I feel as if I'm sitting on a bed of nails that feels like they're digging into the back of my thighs and buttocks. I love long walks but find that I get aching down my legs, buttocks and inside thighs in the pelvic region. I'm now on anti-depressants to treat PNE and I'm doing some stretching exercises plus pelvic floor exercises and I'm due to see the Pelvic Floor Physio next week as my insides appear to be prolapsing!! I've been on the anti-depressants now for a month but I just feel that as I now avoid sitting and take Paracetamol 4 times a day that I kind of cope with it better. At night when I lay down with my legs together, I get a niggle of pinching in the Clitoral area but when I wake up in the morning and get up, it's as if there's nothing wrong with me but as the day goes on it gets worse! I find I have to eat and drink constantly aware that it's all the things to help me have a bowel movement. Every couple of days, if I haven't "been" then I have to use Lactulose otherwise the aches in my legs get worse! I am "GoingBananas" with this. I'm really convinced that my Urether is trying to get out of my body and that's probably the spongy bit I can feel but my doc says not. Please tell me, does anyone feel anything similar to this as I'm at my wits end. I spend my whole day pre-occupied with this and I even stand in my kitchen to do my work now rather than sit!! Does it get better??? How long can this go on for?? Hellllllp
Apart from all that, I'm fine
Thanks for any replies
GB xxx
. I sit in the lotus position & if I have to sit I use a soft pillow or sit sideways on my hip. I sympathise totally with all fellow sufferers. It's the pits!
I've been doing the Kegal exercises since last year because I had slight prolapsing (another consideration of menopause). I was going to ask the doc if going to Pelvic Floor Physio would be likely to make it worse. By the sound of it, this could be why I'm still suffering even on pain killers 
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). As Calluna says, you're nearest PN consultant is Dr. Baranowski at the National in London, his consultant anaesthetist Dr. Natasha Curran is part of his team. But under the NHS you are entitled to choose for your first consultant outpatient appointment whichever NHS hospital you want, so you could have Dr. Greenslade at the Frenchay hospital in Bristol or Dr. B. DeMello in Wythenshawe, Manchester. You can look up the details on these docs either on the homepage or just go online. Be aware that waiting lists are long! I know of one lady on here given a 40-odd week waiting list for London just this week. I've already seen Dr. B three years ago and now wish to be under Dr. Greenslade's team , but because I've "used up" my first consultant outpatient appoointment, my GP now needs PCT permission to refer me out of the London area. Still waiting on that decision (sigh).
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