{"paper_id":"06d2f91f-7736-42d5-82bc-122871eb264a","body_text":"© 2023 CMA Impact Inc. or its licensors  CMAJ  |  March 14, 2023  |  Volume 195  |  Issue 10 E377\nI’ve always had quite a bit of period pain, \nbut I didn’t talk to people about it. In my \nearly 20s, the pain around ovulation \nbecame unbearable. I also started having \npelvic pain with exercise, bladder pain \nand frequent urination around the time of \nmy period. That was when I was done \nkeeping my symptoms to myself. \nI tried birth control, but I got migraines, \nso I stopped taking it. Eventually, I told my \ndoctor that I thought it was endometri­\nosis. I found out people in my family had it \nbut never talked about it. My gynecologist \nagreed that I sounded like a classic case \nand did laparoscopic surgery. For about \n5 years, my symptoms were manageable. \nUnfortunately, that didn’t last forever and \nI started experiencing pelvic pain most \ndays. I’ve since had 3 laparoscopic surger­\nies, including a hysterectomy. My symp­\ntoms are better these days — I rely less on \ndaily pain medication and require fewer \ntrips to the doctor and emergency \ndepartment.\nBefore my hysterectomy, endometri­\nosis greatly affected my mental health. My \ndaily symptoms, combined with society’s \nexpectation to keep these parts of myself \nprivate, became unbearable. I felt pressure \nto accept that my pain was normal and \nthat I should be able to handle it. I don’t \nthink I can fully encapsulate the loneliness, \nalienation and exhaustion I experienced. I \ndiscovered I couldn’t get pregnant natu­\nrally and I knew that I didn’t want in vitro \nfertilization. Before my gynecologist \nagreed to do my hysterectomy, I told him I \ndidn’t think that I could go on with life if \nI continued to have such severe symptoms. \nI wasn’t very composed during that \nappointment, but he had seen me through \na lot and he knew I was suffering. I was at a \npoint where I needed more help. I asked to \nswitch to a gynecologist who specialized in \nendo metriosis after that. My new gynecol­\nogist is 2.5 hours away, but it’s worth the \ndrive.\nSomething that was missing for me was \nthat I wasn’t often treated like I knew what \nI wanted for my body and for my life. Each \nperson’s path is valid. I identify as gender \nfluid. I was never asked what my pronouns \nare, but I was referred to as a “lady,” a \n“girl” and as having “very pretty and pink \nreproductive organs.” It’s trauma tizing to \nhave this disease to start with, and having \nassumptions made about my gender and \nsexual identity only makes it worse. A lot \nof old­fashioned language and thinking is \nused, and that bleeds into care. These \nthings influence whether I feel that some­\none understands me. \nI felt like people focused more on my \nfertility than on the pain I was in. When I \nwas interested in trying to conceive, I was \ntold to forget about endometriosis and \nfocus on getting pregnant. That’s impossi­\nble — becoming pregnant does not cure \nendometriosis. I had to fight to have my \nhysterectomy. I understand that doctors \nhave a certain responsibility in case some­\none regrets their decision later, but I didn’t \ncome to that choice without a lot of \nthought. I wish I had been treated as some­\none responsible and mature enough to \ndecide it was okay if I never got pregnant. \nPatients deserve agency when it comes to \ntheir body. — Ruby Stickney\nAs told to Victoria Saigle MSc \nLead, Patient involvement, CMAJ\nThis article has not been peer reviewed.\nConsent has been given for these perspectives \nto be shared.\nContent licence: This is an Open Access article \ndistributed in accordance with the terms of the \nCreative Commons Attribution (CC BY­NC­ND \n4.0) licence, which permits use, distribution and \nreproduction in any medium, provided that the \noriginal publication is properly cited, the use is \nnoncommercial (i.e., research or educational \nuse), and no modifications or adaptations are \nmade. See: https://creativecommons .org/  \nlicenses/by­nc­nd/4.0/\nHumanities  |  In their own words\n“Patients deserve agency when it comes to their \nbody”: a patient’s experience with endometriosis\nn Cite as: CMAJ 2023 March 14;195:E377. doi: 10.1503/cmaj.230215\nSee related article at www.cmaj.ca/lookup/doi/10.1503/cmaj.220637\nIn Their Own Words provide extracts of \ninterviews held between CMAJ staff and \npatients, families or clinicians. They are \nusually linked to an article appearing in \nthe Practice section and are intended to \nprovide complement ary perspectives.  \nI wish I had been treated as \nsomeone responsible and \nmature enough to decide it was \nokay if I never got pregnant.","source_license":"CC0","license_restricted":false}