For those who do not know, endometriosis is not a very well understood disease. Usually people have never heard of it--even though as many as 1 out of ever 10-20 women have it. It's a complicated, misunderstood, and difficult to understand disease. It's got different stages, different levels of pain, and different consequences. And none of these factors ever really correlate with another. Not to mention it can only be surgically diagnosed.
These conditions make this disease a perfect one to be swept under the rug by most doctors. Even though early diagnosis and treatment are crucial in deciding how the disease plays out. A lot of times they don't get it. I've had a doctor tell me that getting cysts the size of oranges and twisting my ovaries was all part of being a woman. I had another doctor insist that my pain must be an STD... despite me trying to explain that I had missed a few crucial steps (well, step really) for such a predicament. She tested me and of course it came back negative. But I was no closer to treatment. Even when I finally had an official diagnoses of endometriosis, it has taken me three years of stubborn work to really learn how to handle doctors. I wish I had learned sooner.
Now I have a plan for whenever I go to the doctor. I'm writing it out here so that people who see me with my crazy folders may understand, and women with endometriosis can form a plan for themselves.
First, I make sure to find doctors that have experience in treating endometriosis. Endo-resolved is a great resource for listing some nationally recognized doctors. Not all of those are in driving distance though. Look at reviews of different gynecologists in the area you can reach. Google usually lists different reviews from different sites. Try to find a doctor that has at least some experience treating endometriosis and also listens to his/her patients.
When you go to the doctor, take a folder and notepad with you. In the folder have all you past medical records that have to do with endometriosis. Surgery photos, diagnostics, blood tests, whatever. Have a list of current medications, with dosage, frequency, administration, etc.. Write down personal pain histories and descriptions of symptoms you believe related to the endometriosis. Write down the questions and answers you have for/get from the doctor. Research online and be prepared for that appointment. Continuously add information and records to that folder. Get records whenever you can. Show doctors those records when you have appointments--if they don't take them seriously, move on!
With the notepad you bring, write down any important information the doctor gives you. The answers to your questions. Make sure they answer you questions and seem interested in what you have to say. Make sure they are interested in you as a patient. If they aren't, pack up and move on. You don't have to torture yourself with a sub par, disinterested doctor.
Also, make sure you doctor actually aims to make you better. Some doctors will just endlessly prescribe pain medications or endless rows of birth control pills without caring if your symptoms improve. If that is the case, pack up and move on!
Prepare for your doctor's appointment and be prepared to stick to your guns. If you aren't satisfied, move on!
I suppose later I will add a checklist to this post--what to bring and what not. For now, I am tired from surgery, so I am signing off--Thanks for reading!