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These tips were posted on alt.support.endometriosis by Eileen. She has been good enough to let me post them on our site in hopes of helping others find a good doctor.
How do I know what doctor to use, if they have extensive experience with endo?
This is a great question. Too often we find out after the fact. that there is a great “skill gap” in doctor’s understanding of and ability to treat endo.
1. First and foremost YOU get educated. Then when you are talking to a doctor YOU will know if they are educated on the topic or not.
Read the Endometriosis Sourcebook by Mary Lou Ballewig. Its an easy read.. and then you will be more knowledgeable about endo than most
run of the mills docs.
2. Talk to other women with endo… who are “ahead” of you in the game. You will find out what did and didnt work for them. You will find out who got relief and how.
3. Read the web pages of a few of the top pioneers in endo treatment. These guys have done thousands of cases of endometriosis. It is the sole focus of their practice… endo surgery. They have a lot of important information. ( for example…. they can all tell you about the numbers of women that have come to them AFTER hysts.. because of ongoing endo pain… Well.. of course this is contrary to doctors who will tell you that the hyst will cure your endo… in these cases… the women had hysts… BUT the unskilled gyn did not remove all their endo at the time of hyst )
4. Accept the idea that this is not a perfect world and that doctors do not always know everything.. also..many doctors will not TELL you when they dont know ( this is unethical in my opinion.. but nonetheless it goes on all the time ) Many women when first confronted with this reality that their gyns dont have a clue in helping them with their endo… they cant “believe” it. I guess because we are brought up in a culture that glorifies doctors and gives them status… no matter what they know or dont know. I always tell women… Don’t screw around with the B team. Go right to the A team.. and get the best treatment for your endo.
YES it might cost more
Yes you might have to travel
Yes its not convenient.
Yes insurance will complain and not want to pay
Yes.. you may have to take out a loan to get good health care
I know.. none of that is “fair”… but as years go by and the quality of your life.. your pain.. your phsyical welfare suffers… how much is that worth
??? That question is eventually answered by each of us who has endo. Dont “wait” for the any system to help you.. Give yourself the best shot you can. There ARE doctors who have made it their business to know endo.. and help us with it. Give THEM your money.
Finally, while these top experts are all great.. there is a new group of doctors who have come up.. learning from these top guys… and they are practicing good endo treatment…. and they might not have a web site..or a national reputation… BUT.. they will have studied what the experts have published and proven.
I wish you the best.. in fact I wish all of us the best. I encourage each of us to love ourselves enough to keep partnering with health care practicioners who are educated, skilled, and caring.
Love to all