Lately I’ve been noticing some of the new Facebook support groups for PNE, IC and other pelvic pain problems that have been popping up. They are a good resource for getting to know other people who are suffering from pelvic pain. For some, the online support groups serve as a “home away from home” where we can pour out our feelings, a place to go when the suffering — physical and emotional — gets to be overwhelming.
This is especially important for patients whose families or significant others do not understand and may not be able to provide emotional support. We are fortunate to live in an age when we can reach out frm the privacy of our homes and find another human being on the other end who feels the same as you.
Be aware, however, that these are places for emotional and mental support, not necessarily for information about your condition. Yes, we all exchange personal experiences – what doctors we are seeing, what treatments we are having, but there are better resources for learning about our condition. We are all different and what might work for one person will not necessarily help another.
If you find yourself making treatment decisions because “it worked for Suzie” or considering a specific surgery because your friend John is having the same surgery, it might be important to take a step back and do some serious studying first.
Learn about YOUR body and YOUR condition. What are your symptoms? Where does it hurt?
If you find yourself following another person who had success with their treatment, but you don’t know why they had success, or why you would be likely to have success, STOP! Do some homework. Your life, or at least your quality of life, depends on it.
Knowledge is power
If you are already reading everything you can get your hands on about your condition – good for you! There are links on the home page of this blog that are recommended, depending on your condition.
It may have been a while since you studied for exams, and this time it may be that you are studying for the most important exam of your life. You don’t want to rely on others’ opinions to make these decisions.
The more you know about your specific condition, the more likely it is that you will be able to help yourself pinpoint the right doctor and treatment for yourself.