In a world of conflicting stories, opinions, and supposed facts, how do any of us know what to believe anymore? There are conflicting ideas in every area of life. The world of endometriosis information is no different, except the difference in ideas could be extremely harmful. The following was written to encourage you to think critically about what you hear and what you read (including this).
If you ask one hundred people what they know about endometriosis, many of them have never heard of it. Of the people who have heard of it, you will get all kinds of “facts” recited by them. Common misnomers are about the number of people who have endo, the idea that pregnancy will cure it, the idea that it only happens in the pelvic region, the idea that it is impossible to be without symptoms, and the idea that birth control is a useful treatment for everyone who has it. Also common misnomers: all period pain is the same and some just handle it less well than others, endometriosis always means heavy bleeding, hysterectomy is a good option for everyone. On top of the fact that the ideas and perceived “facts” are all over the place, then there are different points of view people have, their own experiences, and their motivation.
So how do we decide what to believe? Learn constantly and weigh everything you read. What makes logical sense? Where have real statistics been collected? Where did the information come from, and why do you value the author’s opinion? What does the author have to gain by you believing their words? Are they trying to sell something? What is their experience with endo? Surgery? Medicine?
Another idea to help sort out what is old, unhelpful, toxic, or plain useless: look for arguments on both sides. If your doctor is encouraging you to take a certain medication and you are not sure you want to, do not just look up the information on the drug company’s website (they are trying to sell it). Look up others’ stories, side effects (including lesser-known ones), and alternatives. Do not give in to fear, but look at it from all angles so you have the whole picture in sight. Look up arguments against it, but keep an open mind and keep reading critically. Sort out what is mere opinion or what is “candy-coated” or “fear tactics” and look for real experiences and numbers. Lastly, it is okay (and recommended) to question healthcare providers. Ask questions: how often do they see endo patients? What are their views on various treatments? Do they make you feel bad about yourself or do they give you hope? Rule of thumb: if a doctor makes you feel stupid, crazy, or unheard, you should look for a new one.
As you learn about endometriosis, do your research like you are learning on behalf of your best friend. Take care of her, value her, love her. She needs you. But don’t my word for it, what do you think she needs?