Health Organization for Pudendal Education

After an ice skating accident in December, I was finally diagnosed with PNE in February. After a frustrating and depressing 4 months of manual PT, I began to make progress, such that I took a Zumba class, went on an 8 mile hike and started back on the recumbent bike for 15 minutes at a time (seemingly yay!). Too much for a single week and 1 month later I'm still paying for it. While Dr. Weiss and my physical therapist seem to think I will make a full recovery, all of my online research (and Dr Weiss) are telling me that full recovery means no more skiing, biking, kayaking or any of the other activities that have come to make up who I have been for the last 48 years. I have been unable to drive my car (a manual transmission) and I am now 8 months into this. Does anyone have any stories of recovery that include a return their former physical activities?

Kelli, do you know the underlying cause? I know the fall triggered your problems but do you have anything else going on with your joints/ligaments? As we age, it's pretty typical to get some deterioration in the musculoskeletal system. I know in my case, as someone who loved to exercise, I developed hardened and sclerosed ligaments, pelvic misalignment, and SI joint dysfunction. I have had to change my lifestyle and have come to accept the fact that I will never be young again but that I can fill my life with things I enjoy that don't cause pain. I was about 46 y/o when PNE hit. I can't say for sure how things will go for you but I know the typical PN patient has to be careful the rest of their life.

Violet

Hi Violet. Thanks so much for getting back to me and for your logical reply. I don't know if there's an underlying cause. I have scoliosis which created complicating problems in my SI joint and perineum upon injury however none of that pain exists anymore and it seems the 'flare up' is in a new area of the nerve for me - the clitoral branch. I joined a FB support group and it's terrifying to see the agony that people are living with. I am 48 and my entire source of joy and social circle has been outdoor sports. I realize optimism alone is not going to heal me but don't understand nerve damage well enough to understand where my physical limits, time guidelines and cautions need to be and remain unable to accept what seems like a cruel life sentence at a young age. I'm just trying to educate myself and look for possible solutions.

Hi Kellie,

I understand how hard it is to accept having to change your lifestyle. It is cruel, really. I went from being very fit and active to being pretty much bedridden for 2 years. I guess after being in severe pain and spending most of my time in bed for those 2 years on lots of medication, life seems pretty good now and I feel extremely blessed that I can live a pretty normal mostly pain-free, medication-free life. Sure, there's stuff I can't do but there is so much I can do now compared to when I was in bed.

For me, PN developed slowly over time. I had minor pain off and on for 1-2 years. I didn't know anything about PN so I just kept right on exercising until it came to a point when I had to quit and I had full-blown PNE. Once you are there, you can't turn the clock back. If I had known, I would have quit exercising sooner and may have been able to avoid surgery and a lot of agony. There is life after PN. It may be a different life but it can be very happy and fulfilling.

Take care,

Violet

Violet M wrote:There is life after PN. It may be a different life but it can be very happy and fulfilling.

Well said, Violet!