Health Organization for Pudendal Education

Hi everyone.
I've visited this site a few times over the past few years and never quite know what to say so I don't post. This is a start i guess!

I've had nerve issues for a very long time but in 2012 after back surgery for a separate issue my physical medicine doctor brought PN up as a likely issue with my body.
I meet every single one of the diagnostic criteria and almost all of the additional criteria including some of the odder and annoying ones like feeling like your anus has a tennis ball inside at times. I also can't sit for very long which killed my career as a marketing director and made me lose the insurance that was helping pay to figure things out.

I've lost just about everything due to this illness. My job, my partner, my home, my phone. The doctors that the health exchange will pay for have been totally useless and they even turned down my medications so I recently had to go cold turkey off of opiates & cymbalta after several years of both which I almost didn't survive.

The thing that has helped me the most (other than pain meds) is anti-inflamatory shakes. They seem to take the pressure off a bit but than other days i'm stuck on my hands and knees in so much pain that I wish i were dead. I went from being an outgoing, award winning professional to a completely isolated homeless woman in only a matter of months.

Even looking at this site is overwhelming.

Hello Sillypsyche,

Sorry to hear that you are feeling overwhelmed right now. Going through what you have would most definitely be overwhelming. Just wondering about the username you chose - Sillypsyche. What do you think precipitated your problems? Were there some emotional issues involved? What treatments besides pain medication have you tried so far?

Violet

Hi Sillypsych,
I am really sorry about what you are going through and I hope you will get some help from somewhere! I too have lost most things but was lucky enough that a good friend stepped in to help me keep my home. I truly hope that things will get better for you. I use ice packs when it gets too bad and that helps a little bit for a while. Would that help at all? Even just for temporary relief?
Cintapoppy

Hi, I am new to this but can sympathise with all who are suffering this awful pain. I am male, 67 years old and was diagnosed with Pudental Neuralgia by a very understanding neurologist over ayear ago,however, it has taken me years to get to that point as so many so called experts had not a clue as to my condition. I suffer agonizing pain in both thighs, perineum, buutock region and what makes life much worse for me is that certain foods such as sugar, yeast and more aggravate my pain much more where I can hardly walk.
I have had every kind of test,blood tests, scans and MRIs, tried nerve blocks and more all to no avail. Not one doctor can offer any expalation as to why foods react in me the way they do. I refuse to accept that there is not an expalnation for that,I can hardly be that unique! So,I appear to have two ongoing problems to add to the constant, unrelenting pain. I am taking physio from two good pelvic floor therapists which I think has helped somewhat but the other problem interferes too much. Anyone out there with similiar complaints, especially the food reactions?
I find Amitripylene in small doses helps somewhat, at least to sleep plus ice but all the other meds seem to have no effect. Good luck to all in getting some relief from this life changing awful complaint.

AJH

Welcome to the forum, AJH.

We have had a few members mention that certain foods aggravate their pain although typically it's related to bladder pain and interstitial cystitis. So I'm not sure what's going on in your case. Have you ever been diagnosed with an autoimmune issue or fibroymyalgia/chronic fatigue syndrome? I know foods, especially sugar can aggravate some of those conditions. You can check out this article for more info.
http://www.medicinenet.com/script/main/ ... key=104485
http://tinyurl.com/or2phpy

Violet

Hello Violet, thanks for your reply. I have discussed autoimmune disease with my GP and others on many occasions but they insist I have had all blood tests and I feel my own doctor has more or less given up on me although he has been supportive too. Years ago one very impatient rheumatologist did suggest fibromyalgia but that was never confirmed and I do not suffer from fatigue. The food reactions are almost immediate so I have a very limited diet but I manage ok with that as long as I can avoid the severe pain but right now I have had two days of hell and I can't quite pin in down to what caused this flare. I have tried many diets,been told many different versions but no one seems to be able to give an accurate one.I feel it is in my digestive/immune system but I can't seem to get a result. I will look at your other suggestions too. Good to be able to talk to someone! It's not a nice place to be, this pain world.

Hi AJH,
Its interesting that I should come across your post today as the last 2 weeks have been pretty bad for me with a lot of abdominal burning pain and cramps and bad pain in the usual places. Having been to the doctor and given another blood sample I finally phoned my herbalist in despair. She doused me and I have a staphelococcus infection and candida, which i think is in my bowels since they have been off for quite a while. The penny finally dropped for me, every time I had some sugar and over the weekend i some some double cream (highly unusual for me!) my body started burning and all symptoms were just so much worse. I had some homeopathic drops left over which i have taken for the past 2 nights and I feel a lot better.

I think because we have this condition we can easily overlook something else, at least thats what I did in my case. I just didn't notice that the symptoms were getting worse because I had eaten something and brewed up another condition over a period of time.

Do you have access to a decent homeopath or herbalist who might give you some remedies?

Hope you feel better soon!

AJH, I'm sorry to hear you are having a flare-up in symptoms. I hope things will calm down for you soon.

Well, fibromyalgia is another often misunderstood and easily misdiagnosed illness and there isn't just a simple blood test to show you have it. Anyway, it may be something to consider as you have things ruled out.

Violet