Absolutely. That mindset is why I have been down before but never out.Lernica wrote: My approach is to merely seek their assistance in treating me but to manage my treatment myself. That's the only way to get better IMHO. Leaving your treatment to doctors (or any healthcare provider for that matter) is a recipe for disaster.
My interstitial cystitis "treatments" ended abruptly at age 17 when I drove accross the state to a support group: 1st other people with my disorder I had ever had any interaction with, since there was no internet back then. One woman had recently had her bladder removed and was eliminating urine by self-catheterization through a stoma in her side. And she was STILL in pain.
My cute little 17 year old self, obsessed with keeping the attentions of my cute little boyfriend who is now my husband of 20 years, took one look at her and said, "If I keep going back and telling this Doctor his treatments aren't working, he is going to do that to me". And I didn't see another Urologist for 21 years.
Finally at age 38 I got some urodynamic testing done. Looking at it side by side with my original diagnostic cysto / hydro, I can say I did absolute wonders for myself using self care alone. The condition of my bladder is soooo improved. Unfortunately self care isn't going to work for this PN, but my success with the IC gives me confidence that I am capable of being the head of my health care team. I've seen lots of improvement already and I fully expect I will eventually see more. And having dealt with chronic pain in isolation and with no access to information, I am so grateful there is internet now!
I do feel bad for people who get these illnesses who have more passive personalities or are not really oriented towards problem solving. Being a strong self - advocate is so important in getting well.