Health Organization for Pudendal Education

Pudendal neuropathy was diagnosed by the physical therapist doing pelvic floor therapy for PFD caused by IC. I have glomurulations in the bladder so there's no doubt about the IC diagnosis. I have had Crohns disease for over 30 years. So far, for the PN I've been told not to sit for more than 20 minutes at a time, to pace or walk on level surfaces, to avoid bending and lifting. The GYN is doing a nerve block on the pudendal nerve in my right side next week and more trigger point injections on the left side.

The Crohns and IC limit my diet and then there are nasty flareups at times, but most of the time I can function. The PN is limiting my life. I was advised not to go to Utah when my son's first child arrives in May. Same thing with my oldest grandchild's high school graduation in Ohio. The physical therapist said that if the block doesn't work that a pain management clinic would probably be my best option.

Is PN really this hopeless?

Difficult to say. It surely is "life altering" diagnosis.
But there are ways. You have a lot of options and some of them will surely help. Although complete resolution of pain is sometimes unrealistic, there will be days when you feel better. That s the experience of most sufferer. another alley of hope is the fact, the medical progress is going on. 20 years ago there was hardly any treatment, now the options are more numerous and there some excellent experts for this field. Dont panic, there will be some success, I am sure.

Hello Brenda, welcone to the forum.

Flyer has given you great advice, most people find a way to manage the pain. For many people this takes time and patience. Sometimes getting the right cushion to sit on is a huge help. These days I only use a cushion to drive and I keep the one from Cushion Your Assets in my car. Why did your doctor suggest you not travel? If it is to keep you from sitting, if you are going by car you can recline the seat or lay in the back or if by plane you can use a cushion to sit when you have to. Your doctor can give you a note requesting for you to be able to stand on the flight except during take off, landing, and high turbulence. You can also buy extra seats so you can lie down or stretch out on the plane. As a mom, I know how important it is for you to be at these once-in-a-lifetime events if you feel that you can handle the trip. In my 10 year PN journey I have never heard of a doctor saying not to travel, many of us travel by car and plane great distances to consult with doctors for PN treatment!

Sincerely,
StephanieS

The reason for not travelling is because the vibrations cause bladder spasms which in turn cause the pelvic muscles to tighten and compress more on the pudendal nerve and the muscles contract more and then the diseased part of my intestines are aggravated which in turn tells the muscles to tighten....and the cycle keeps going. The hope is that the block will stop the cycle of pain temporarily so that the muscles can be worked with more effectively and allow the intestines and bladder to calm down too. So it's fair to say that it's not just the PN that is of concern, it's how the PN plays a part in the cycle where one thing aggravates the others.

Thank you for the encouragement! I will hope that things settle down and try to be patient.