When I started advocating for myself, it was about four years after my endometriosis diagnosis. I knew my body needed a hysterectomy to hopefully feel some relief. My doctor at the time had agreed on surgery, but about three days before the surgery, I discovered it would’ve been a completely different surgery than we originally agreed upon. My doctor told me over the phone that for me to have a hysterectomy, I would need to see a counselor several times. As a 23-year-old, my doctor didn’t know if a hysterectomy was the procedure I truly wanted for myself. This was awful to experience. Ultimately, though, I have control over which treatments, surgeries, etc. I do for my chronic illness.
At this time, I decided I was going to make a list of every type of doctor I had been to (gynecologist, gastroenterologist, urologist, pelvic floor physical therapist, infertility specialist, etc.) along with all of the treatments I had tried over the last four years (since the beginning of my journey with endometriosis diagnosis). I also keep a list of symptoms, how often I experience them, what triggers the symptoms if I can narrow it down, etc. I went to every doctor I had been to for surgery and got copies of my medical records. I made a list of every test, procedure, and surgery I had up to this time. I also have dates beside each and all of this is in one document. I still use this same document and keep it updated with as much detail as possible. I have binders of my medical records in order by date and I have most of them scanned to my computer just in case they are needed for me and my doctors.
If you can have someone go with you to your appointments to corroborate what you’re saying, it may be helpful. Unfortunately, I have experienced this myself even though I’m the only one that really knows how much pain I’m in.
You are in charge of your health. Please don’t let a doctor or anyone else let you feel otherwise. If they do, please find another doctor. You are more than capable of making health decisions for yourself whether you’re in your early 20s or late 70s.
Having a list of treatments you’ve tried, side effects you’ve experienced, doctors you’ve been to, procedures and surgeries you’ve had, when you had each, and having your medical records will be extremely helpful in receiving the health care you need.
I hope you find this information helpful. I send all patients hugs and love.
Samantha Bowick, MPH is an author and patient advocate. She is the author of Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options and Living with Alpha-1 Antitrypsin Deficiency: The Complete Guide to Risk Factors, Symptoms, and Treatment Options. She will be having the Living with Endometriosis Workbook and Daily Journal published February 2020. Samantha is the founder of Chronic Illness Support, LLC and is getting ready to launch her podcast that will feature guests talking about their chronic illness. She uses her experiences to help others who suffer with endometriosis, alpha-1 antitrypsin deficiency, sphincter of Oddi dysfunction, and other chronic illnesses.