Health Organization for Pudendal Education

Hi everyone,

I’m Cassie. I just found the site and I’m feeling kind of scared and kind of relieved... I think I could have PN or PNE. I have around 10 of the symptoms listed, in particular an inability to sit. 3 months ago, after a long period of sitting (10-15 hours per day), I developed severe pains. I had an MRI, which showed nothing at all. I am currently being treated by a PT for a general nerve compression, but have been given bending and sitting exercise four weeks on the trot. This seems to be the pattern - I do the exercises, I have a flare up, I barely move for a few days, I feel better, I think, ‘Yippee! Maybe I’m getting better!,’ I go to the next PT session, do the exercises, have a flare up etc, etc. My PT has never mentioned PNE. I only heard of it today, when I found this site and everything seems to fit with the problems I've been having. (I am going to print out info from the site for my doctor and PT - thank you!)

Could you tell me something? Has anybody got better and returned to a normal life? Can you sit OK? Have you got better naturally?

Right now, I can’t work much due to pain (I run my own company from home), I can’t wear anything but dresses (waistbands feel awful), I can’t go in the car, so when I am OK enough to go out, I can’t get far! I feel like an old person, although I’m in my late 20s.I can't go out socially as it involves travel and sitting. I’m going round and round with doctors/PT. What I really want to know is does anyone get better? Is it always a long term thing - for me it's been 9 weeks... but reading around the forum I see some of you have been suffering for years... If you have a minute, it would mean so much to hear from you. After 9 weeks of wondering if I'm going a bit nuts, it's been amazing to find this site.

Cassie x

Hi Cassie,

I'm so glad you've found this site. Welcome! Folks here are friendly and helpful, and there's a lot of information to read through. I'm fairly new here too and still making my way around, but I know there's a thread somewhere about 'Success Stories'. One of the other members will be able to tell you where it is..

I have PGAD and maybe PN too, I'm still finding out about it all, and with PGAD there are bad days and better days. Can't say as I've had too many 'good days' with it, but time will tell if I'll come out of this bout or if it's here to stay. I've had it twice before and mine seems linked to stress.

I wish you luck on your journey and hope it gets better for you.

Hi Cassie,
So glad you have found us and hope we can be some help.Welcome I'm sure you will find emotional and practical support from the information here (there is an absolute ton of useful stuff on the home pages) and from the people here too.
I would seriously consider giving the PT up, especially as it doesn't seem to be from someone who knows about PN as sitting and bending are particularly best avoided where possible. It sounds as if the nerve is being further compressed with those particular exercises. I am not saying that all PT should be avoided, but it is better to have someone who is PN aware. At least you have tried it, shame it hasn't helped.
Please don't give up hope because of this bad experience, you simply need the right people who are PN aware. It is usually said that PN sufferers, without some previous traumatic event (childbirth, surgery, fall etc, etc) have a much better chance of a good recovery and a good recovery with conservative treatments too. I would think from what you have said so far you are an ideal person to tick those boxes,especially because of the time scale you have been suffering, I certainly hope so.
There are many who are better, many people who have recovered, then happily get on with their lives (good for them ) so we don't always hear a lot from them once their treatment has had a good effect.

Taking the info from here into your own doctor is a great idea especially as you can show how many of your symptoms match up. Hope fully your doctor will be open to these suggestions and you will be able to move forward from here and find the right treatment.
In the mean time what about medication? There are particular types that can help with nerve pain (typically, shooting, burning, pins and needles, itching) but often getting a balance that suits the individual can take some time.
I know that others will have some helpful info to offer. I hope that you are feeling a little more calm now that you know you have found a place with people that can and will help.
take care
Helen

Cassie,

Welcome to our group! I"m so glad you have found us.

PN is a relatively new diagnosis. Because of this, and the fact that it is extremely rare, it is still being researched. What works for one person may not work for the next. Surgery may help one person but not the other. We all have to come to this understanding: NO ONE KNOWS FOR SURE WHAT THE OUTCOMES ARE. This takes some time to get accustomed to; you may have to travel for diagnosis and treatment. If you don't mind us asking, where do you live? We have a lot of members and someone on here may live near you and have some health care provider suggestions.

We all have PN but are unique in our own ways. You will find your path psychologically and physically to a state of balance. We have all been in your shoes, so please don't hesitate to ask or talk about anything.

cari

Yes, Cassie -- many people get better.

There are no guarantees with PNE but many people get better, especially people who get it when they are young and who discover it early on. But as Helen said, it's important to quit doing those stretches and exercises that are causing flare-ups and to avoid sitting as much as possible until you know what your diagnosis is. Pudendal nerve entrapment doesn't usually show up on a regular MRI so you can't base your diagnosis on that.

Keep reading! Hopefully you will find some good information here.

Violet M

Wow! Thank you so much for your help. You’ve all really lifted my spirits.

I’m going to ask my doctor for a different approach with pain relief and see if I can find a new PT to work with. It’s good to know that I’m getting on the right track at last. I’m feeling heaps more positive – the first time in months!

I live near London and I’d love your recommendations if you have any. Are there any NHS specialists? It seems a lot of people on the site go private.

Thanks again for your replies and I hope you are all feeling OK today.

Take care,

Cassie x

Hi Cassie,
Take a look at http://www.pudendalhope.org/node/57#UK for Uk doctors. Obviously for location Dr Baranowski or Curren (who he works alongside) will be your nearest. There is a list of PN aware physio's on the home pages too. I think you will find some near you.
Let us know how you get on, it does make such a difference knowing that other people understand the problem doesn't it
I don't know what I would have done without the help and support from people here.
Take care,
Helen

Cassie, check out Maeve Whelan's list of PT's. http://www.pelvicphysiotherapy.com/Manu ... pists.html
She told me they are all trained in treating people with pudendal neuralgia.

Good luck!

Violet M