Health Organization for Pudendal Education

Hi all,

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 think your symptoms match with PN. please avoid sitting as much as possible and if you have to sit, sit on a soft cushion to stop irritating the nerve more. please get the diagnosis and treatment as soon as possible, if you live anywhere around Belgium try to contact Dr.Beco.

Hi Sam
Thanks for the reply. My doc has been treating me as if PN since 23rd Dec. She put me on the Anti-depressants & told me to take pain killers. I go back to her on the 1st Feb to see how things are going with me in general. I'm convinced now having been reading on here that it's definitely PN. I live in South England near Gatwick Airport. I will ask my doc if I can have an MRI in the nerve area. I also have been referred to a Pelvic Floor Physiotherapist & I'm seeing her on the 2nd Feb. I hope that Doesn't make things worse. I avoid sitting as much as possible & I've not been in my motorbike since Sept 2011 . 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!

Thanks again
Kim (GoingBananas)

Hi KIm, and welcome to the forums.

I too am in the UK. You seem to have an excellent GP, this makes such a difference.

The antidepressants you are on (amitriptyline I expect) do not treat PNE - there is no drug that treats this. They will be for pain relief. Some antidepressants work well for relieving neuropathic pain, whereas ordinary painkillers don't really affect it at all, as I'm sure you've discovered. You might find this leaflet interesting reading - NICE guidelines for management of neuropathic pain. I have found the Pain Scale very useful too.

When you go back to your GP I would urge you to tell her that you are not getting satisfactory pain reduction, as you will see from that leaflet there are more options to try. The thing that worked best for me, by far, was pregabalin/Lyrica, it was like a magic pill.

With regard to the physio - please make sure she is PN aware, there are some exercises that can make PN worse, for instance Kegels. I will be interested to hear how you get on - I do hope it helps.

I would echo Sam's advice about avoiding sitting, you are doing the right thing here. It is a big lifestyle change but unfortunately sitting (without an appropriate cushion) really does make it worse. You might want to consider getting a cushion that helps, I still cannot sit without one of my cushions even though I am much improved since surgery.

And finally, you might want to ask your GP for a referral to one of the (few) consultants who have a special interest in this condition. We know of Dr Baranowski and Dr Curran in London, and there is also Dr Greenslade in Bristol at Frenchay Hospital, and someone in Manchester. You'll find info about doctors in the information section of the main website of course.

Hi Calluna,
Thanks for the welcome and wow for the information. My main aim next Weds at my Docs is to press for further help and consulation. Now I have names, I will chat with her. She is a youngish doctor and she's so understanding and helpful. I became quite a challenge to her and prior to realising the possibility of PNE I had to go through all the process of elimination but sadly this took a long time as I was perimenopausal and everything that goes with that was also considered and treated 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

I will read the link you've put up before I go and I'll print things out and go with names etc... and see how I get on.

I've felt tearful during all of this as I feel I may have to accept this could be a long lasting and even possibly non cureable ailment which will change my life dramatically. Whilst it's not life threatening it will affect my family too with the restrictions I'm having to make. Work, I am lucky as I do my book-work at home and I can type very fast now whilst standing and laying down (how cool is that )

Thank you again for your reply. I need to know as much as possible so I can go armed to the docs next Weds.

Big hugs
Kim (GB)

Thank you so much Calluna. I went to the doc yesterday and she's now put me on your Magick Tablets Pregnabalin. I feel some relief at last, and today I didn't have to have 1 paracetamol let alone 8!! I'm also now referred for an MRI on my back first. Doc wants that done before she refers me further at this stage. I have a Pelvic Floor Physio session (I went to the first of two today) and I took your advice and I told her I'd got PNE and she said she was aware of PNE and that she will advise me throughout and after the next session I am to book a one to one.

So thank you for that guidance

Kim x

hi you sound like me 16 yrs ago. i had prolapsed uterus and rectum.was so sure hysto would make pain go away. but it didnt..i even was dx'd with IC a bladder disease and had my bladder removed..it didnt work either. so beware of surgeries that you think may help. i am 59, had to give up job to go on ssi.i do hope you can find something to help.the dwelling on the pain is my problem also..they say stay busy..but how when the pain is so bad..its good to read about others my age..thanks for posting deedee

Hi Kim,
your story sounds a lot like mine. the burning in the vagina is terrible. I hope you get the relief that you need. I am on gabapentin 2100mg a day but I still have discomfort later in the day. I am like you in that I do not feel the burning when I first get up in the morning. I am not on a pain med but take Ativan 0.5mg to get the most relief. I worry about addictions but have to get the relief. I cannot sit for long periods of time.
I pray that you and all who are suffering will get relief.

Sue

Hi Birdlife, Guiltlady and Deedeecmt,

I'm so sorry I've not been on here but as a book-keeper I get very very busy with regard to people's accounts because of the January Self Assessment Deadline

Birdlife - Ah fellow biker, I'm kind of hoping that I might ride again but I'm very aware that I might not and not even go on the back of hubby's bike either anymore As for my "PNE aware physio" Mmmm that's debateable. She is young, NHS, I possibly think she said she is but I seriously have my doubts!! Upon my arrival I said that I'd got this and I'd been told that Kegal Exercises were a no no! Well tell me this, I have to do this 3 times aday.

Pull up PF muscles and hold for as long as you can anywhere between 3 - 8 then release and repeat this for upto ten times. Then 10 quick up & downs. This is to be repeated 3 times a day. Now am I going mad or is that Kegal based???

If you think the above is Kegal, I'd like your confirmation for my brain, pretty please!. I've got another session next Thursday and I'm really tempted to see just how much she does know, mind you she's probably Googled it by now, which I suppose wouldn't be a bad thing really

I'm now on Pregabalin one at night and one in the morning. I avoid sitting like the plague!! I stand in the kitchen working or kneeling at the coffee table. I go out when my husband's home so he can drive our transit van and I can sit on my hip with my legs up on the double seat (kind of side-saddle). I'm awaiting an MRI appointment at the moment and I've given my doc the names of the two consultants you've mentioned and the Bristol one too. I'm kind of coming to terms that this is either long term of for life and that I'm having very seriously to revamp my lifestyle to accommodate this retched ailment!!

I hope you get the referral you want and the permission required (bloomin red tape!). I'm near Gatwick Airport so not far from London and I'd be prepared to travel to Bristol if need be. It's amazing how little GP's know. I do sympathise with you and I truly hope you get some sort of comfort at some point. I'd like for you to keep in touch, even via PM if you like. Big Hugs (well biker type, as we're supposed to bite the heads off chickens and all that )

Deedee - Hi there, I'm so sorry to hear that you've had similar with prolapsing, I can honestly say, it's quite a scary feeling that your insides are dropping out! I'm 52 this July and gosh it's sobering to think you were like this 16 years ago and that you've had to give up your job but I can totally see why people have to. This really is a nightmare ailment to say the least. Stay positive and I wish you well.

Guiltlady (Sue) - OMG thank heavens, it's not just me going mad!! Thankfully with the Pregabalin I no longer have to take 8 paracetamol every day, infact I don't have to take any now. I kind of put up with the pain in my buttocks and where the buttocks join the legs at the back and just to the inside. I thankfully can't feel that retched thing in the vagina that isn't really there (I call it the Ghost Golfball) the Pregabalin seem to block that. I cannot sit for long and have adapted so I can avoid sitting most of the time. Not easy at all, I have been very open with my clients and my friends so they accommodate me as much as they can, which is truly lovely. I've not heard of Gabapentin or Ativan. Are they anti-depressants like Pregabalin??

Thank you so much all of you for coming onto my thread, it is truly heartwarming and it's helped me no end to know I'm not alone, a freak or goingbananas!

Take care all
Kim xx