Health Organization for Pudendal Education

Hi Stephanie,

It's good to catch up again. Are you able to get out and about these days? Has the chronic fatigue improved much lately? Such a struggle for you all these years.
Vanessa, Lucy and myself are improving slowly but we still hope for better days. I've managed to get to the stage where the PN pain is not a dominant factor in life. I'm able to get on with things although with limitations. Need to protect the nerve as much as possible to avoid flares.

Last week I attended a course where I was in class sitting down for hours. I did get up a few times but by the time I got home I had a severe flareup. The flare went on into the next day but it recovered pretty well after that. My pain level is normally pretty low and tolerable but I know that all day pressure with sitting is still a problem. Other than that I'm doing ok. I do hope you're improving and at least are able to have some sort of normalcy in life. Do you keep in touch with Jude?

Take care,

Catherine

Hi there Catherine,

It's so good to hear that you're making noticeable progress, although I hear what you're saying about still needing to protect your nerve. I hope that sitting-prompted flare is well and truly over.

I'm making no progress. I'm going backwards in fact. I can no longer stand or walk for too long without bringing on a flare and of course, I can't sit at all. I never thought I'd end up being this restricted by pain. I had high hopes the first few years post op, despite continuing pain, for at that stage I could walk and walk and stand for hours. I take codeine by day (morphine gives me hallucinations) and amitriptyline at night. The meds are insufficient but better than nothing (I tend to be med. sensitive). As for the depletion, it's lessening little by little but full recovery is a way off yet: I don't half rue the day I had that botox! For all this, I'm studying and writing and generally keeping myself ticking over. If I sound negative it's because I'm in the midst of a flare. I really need a Potter MRI to see what's going on, but travel's out of the question right now. Yes, I do touch base with Jude from time to time.

I hope you continue to improve, Catherine. Slow and steady, as they say!