I enrolled myself in the American Endometriosis Association's Virtual Patient Day so I can learn how to own and manage what I have.
I'm free to be me with my quiet smile and my eyes filled with deep wonder for life. I decided to partake in #endofound's Annual Patient Day this year to help myself. I have endometriosis and I'm learning to not only accept it, but I am also learning about the disease itself so I can help myself have a better quality of life. I wrote this for a contest that's part of the seminar!
While I was listening to the seminar, I was chatting with my mother on Facebook and she told me that my periods when I was younger were sometimes painful. She also said my periods were also sometimes heavy, which I vaguely remember. I have a memory of being in Ottawa for Show Choir in 2005 and going shopping at a mall for a grad dress when I got my period. I flew home to Alberta while on a period and it was heavy. I remember wearing black pants and excessive pads just to hide it. My mom told me that our doctor at the time always thought she was overdramatic when it came to my need for medical attention because of my neurodivergency. If I hadn't made an appointment with another doctor back in 2017 and demanded a referral, I would still be in the dark today.
Note: Sugar and carbs that can convert into sugar can be inflammatory. YIKES.
Notes from keynote speaker Lexie Stevenson:
-Would an internal ultrasound help? I've had pain and bleeding lately that makes me wonder...
-omg, endometriosis grows back worse?
-depression and anxiety can be a result of having endometriosis. I was having really bad pain attacks when I annoyed the hell out of people in a social club I am part of and that pain might explain why I did it. I didn't feel like myself during those moments and now I know why. Damn endo.
-Whatever causes inflammation in your body in terms of food, go without it for a week and see how you feel. It might mean having to give up candy bars (cries). I have already given up oats/cheerios, honey, peanut butter, cinnamon, huge amounts of lettuce, spicy food, pop tarts, dairy, onions, and other bad food habits. This does work, as I have tried it.
-Give yourself a before bedtime routine and WORK OUT to help yourself with mental health stress.
-Advocating: find silver lining in everything, learn that hysterectomies don't cure endo and they are not worth it, learn to tell the doctor that there is something wrong and they need to figure it out, passive communication doesn't work; you MUST use assertive communication when talking to doctors.
I made a list of things to bring up to my doctor the next time I see her because with the new information and what I am learning here are helping me to put things together in my head.
Dr. Haas
-having a trust relationship with a doctor.
-it's normal to feel scared, embarrassed, anxious, tearful.
-trust that openness and honesty are part of communication with your doctor.
-trust gut intuitions.
-don't be afraid to admit pain.
-think about this: what has endometriosis done to affect your quality of life?
-write down what endometriosis has taken from you and what you cannot do because of it.
-tracking your symptoms: keep note of where pain is, how long it is, etc.
-organize, gather relevant records, and bring your stuff to doctor.
-recognize abnormal symptoms as being something worth paying attention to.
-girls and women with endo learn to take on a lot of pain = quiet suffering.
-help trained physicians not minimize women's symptoms.
-diminish bias, push through it.
-destigmatize our symptoms.
-Lupron makes people loopy, angry, etc.
Questions
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