Health Organization for Pudendal Education

Hi I'm new to all this but have been suffering with extreme pelvic pain for the past 18 months, but recently after searching all medical opinions I've been diagnosed with PN disfunction. however on reading some information online it seems that other patients gain some relief by walking and avoiding sitting, yet I seem to be the opposite. i can get no relief from either, I have tried all sorts of pain relief but still have no quality of life. Could anyone advise if they have experienced the same or if there are any exercises I could do? I am now worrying it is wrong diagnosis.
Thank you in advance of your help
A desperate mrs b

Welcome to our forum. You will find this forum a wealth of information. When all my problems first started, like you, avoiding sitting didn't make much difference but now it does. Walking is still a problem for me and have to be very careful.

You should get an evaluation by a good pelvic floor PT. They can really give you a good understanding about the status of your pelvic floor and the best way to proceed. If by some chance you have a shortened tight pelvic floor then you would never do Kegels until it is lengthened. You might want to read "Healing Pelvic Pain" and/or "Headache in the Pelvis." There are good suggestions in both books.

If you can bee seen by a physician that specializes in PN then you might feel more confident in your diagnosis.

Good luck and keep us posted.

Many thanks for your prompt reply, I will def look up those books, I'm very grateful for any advice and really helps to talk to others in same boat
Thanks

I am not an MD but it doesn't sound to me like you have PN. People with PN feel better when they stand up and sit on the toilet. They also feel worse when they sit in a chair. If you have pain all the time (whether you are sitting, standing lying down, etc.), you probably have some other problem in your pelvis. Only a nerve block (when they anesthetize the pudendal nerve with an injection) will definitively diagnose PN, but I wouldn't bother in your case. I wish you success in finding help but think you should go to a pelvic pain specialist.

Thanks for replies to date. Can any members give advice on exercise to ease pain particularly when the pain is most severe.

Hi mrsb - I have never heard of exercise to relieve PN pain - if there is such a thing, I think we would all like to know about it!

You mention that you don't get relief from walking, nor from avoiding sitting. I don't think that it is common for PN pain to be relieved by walking, in fact the opposite is true - walking can be a real problem. Sitting usually makes PN pain worse - this is a very strong indicator for PN, actually. Avoiding something that makes the pain worse is just common sense really - it is not usual for avoiding sitting to be enough to relieve the pain.

Pain relief - you say you've tried all sorts - did that include any meds specifically for neuropathic pain? - for instance amitriptyline, nortriptyline, gabapentin/Neurontin or pregabalin/Lyrica, or perhaps duloxetine/Cymbalta? All of these can be helpful.

For immediate help, the single best thing is ice. I know this sounds simplistic, but it really is effective. Either one of those gel icepacks, or a packet of frozen peas wrapped in an old teatowel. Don't put the icepack directly in contact with the skin, use for up to 10 minutes in each hour.

Mrs B,
Hi and welcome. PTs that have knowledge of PN are listed on the hope page along with FAQs where you can get symptom info, lifestyle changes, steps to help get treatment, etc such as nyt and calluna said. When pain is bad I use Tramadol or Oxycodone, however getting on one or even two of the meds calluna mentioned should bring the pain down for day to day. There is a doctor letter that may help your doctor understand and maybe at least help get you some meds. Good luck and take care,
Janet

Welcome mrsb,
The whole pelvic nerve pain thing is so complex and differs individually. The more discussion you have with people who have a direct interest in this problem the more able you are to interpret your own. There is a wealth of information here (Home pages) and of course this forum.
What symptoms do you have? Just because there are obviously a few more nerves that can be problematic in the pelvis , the pudendal 'infamous' for not being able to remain properly seated for long, as you are aware, but others (sciatic, post femoral cutaneous for instance) may contribute to walking or standing difficulties.
Good to know that you have the PN diagnosis btw.
Another important point is often a persons history, how did this all begin for you?
Take care,
Helen

This is quite interesting as I use exercise quite a lot to improve my symptoms.

I have found the only thing that relives pain is a good jog. It starts off painful and awkward, but after a while I feel great and the pain goes.

I feel good afterwards as well, until I have my next BM.

My biofeedback nurse thought it was because I was stretching out over tight muscles .....

That said, I have read that running is bad for PNE. So maybe I am doing more harm than good when the endorphins blocking out the pain wear off.....

Actually... I have found swimming helps as well!!!