Wouldn’t it be nice if we could go to the doctor with our symptoms and get THE ONE MEDICINE or THE ONE TREATMENT that would fix our chronic pelvic pain? How great it would be… I can almost cry just thinking about it.
But the only thing we can really rely on with this condition is that none of us reacts the same. When it comes to our chronic pelvic pain, we are all very different. Each body is unique, and what has worked for one person does not always work for another. In fact, I would go so far to say that what works for one person usually does NOT work for another.
The variables are endless. We would each have to have the same exact symptoms, body anatomy, be similar in age and health, have had IC or PNE for the same length of time, etc. Yet we all pore over one another’s posts and reports on the forums and in our blogs, trying to find the golden key to our own release from pelvic pain hell. I know I have. And I’ve probably tried close to 10 different treatments so far based on what helped other people, with zero results to show for it.
We pore over one another’s posts and reports, trying to find the golden key to our own release from pelvic pain hell.
So now I am more cautious when I read of someone’s great success, and I don’t run out to a) buy the book b) get the same treatment c) ask my doctor for the same medication d) make an appt. for a consultation with the same surgeon …. the list goes on.
My best advice to anyone reading this is to keep doing what you are doing right now: keep reading, keep researching. If you have spent time on the forums but you haven’t read the basic information, it is time to do so. Read. Study. There is a lot of good information on the IC and PNE sites besides the forums.
Read the background information first before getting tossed around by the ups and downs of people’s various experiences and opinions. Try to be a systematic as possible, and if you are newly diagnosed, realize there is no quick fix.
The fastest way to get better is by educating yourself and being your own advocate. For example, if you don’t understand a term, search, or “google” it, and make sure you are going to medically trusted and respected sites for your information. Over time you will gain the knowledge you need to make good decisions, although it is never easy and there are no guarantees.
We are in the pioneering years of this thing. When my pain started in 1995, IC, PN and PNE weren’t even on the radar as far as my doctors were concerned. They still aren’t in the small city where I live.
I was misdiagnosed several times and like many of us, underwent painful treatments that were way off the mark. The nerves that have affected me are branches of the pudendal nerve that innervate the base of the urethra and bladder, so I was diagnosed with interstitial cystitis once those organs were irritated and inflamed.
Now I understand more about the role of damaged nerves in causing my pelvic pain. But how can I even be sure that nerve pain is the only factor? I can’t know…. It’s just that surgery on my nerves has turned out to be the most promising treatment. Heck, if the PNE specialists don’t know the answers, how can I be expected to? I just keep taking it a step at a time, and hoping that the next treatment is the right one, the magic one that will change my life for the better.
The next time you are reading about, or listening to, another patient who has had success, take a moment before applying their success to your condition. Ask yourself if they have more similarities than differences when you compare your situations. What works for one person, does not necessarily work for another.
I do believe our differences make us great, but in this one situation, it would sure be easier if we were all the same!