Casey Berna who has a master's degree in Social Work, has been a voice in endometriosis advocacy for many years. She has lectured at international conferences on endometriosis, anxiety, and the trauma of pelvic pain. After her own battles with endometriosis Casey heads the fight against ACOG for better standards of care for endometriosis. She teaches the world that as people with endometriosis, we matter. She writes:
What Doctors Say
They said I was in pain because I had a low pain tolerance, had an STD, irritable bowel syndrome, sexual abuse history, anxiety, depression.
They said I was in pain because I didn’t eat healthy, didn’t exercise, had gained too much weight, or didn’t weigh enough.
They said I couldn’t have endometriosis because I was a too young, too old, a trans man, too fertile, or a black woman who was just naturally inclined to have painful periods.
They said I couldn’t have endometriosis because I was pregnant, didn’t have a uterus, was on birth control, already had surgery.
They said I needed to focus on finding a partner, getting pregnant, freezing eggs, going through fertility treatments.
They said they could put me on hormones, burn some of the disease away “if that’s what I really wanted,” put me on stronger hormones that mimicked menopause, give me a hysterectomy.
They said they couldn’t touch the disease on my bowel, or other “hard to operate” areas, or refer me to anyone that could.
They said they couldn’t give me pain medicine, couldn’t do more surgery, couldn’t do anything else.
What Doctors Fail to Say
They didn’t say it could be endometriosis, something that 1 in 10 people born with female reproductive parts have.
They didn’t say how endometriosis is a disease that impacts multiple body systems, not just reproductive parts, and how my symptoms suggested that this disease could be implicating multiple organs.
They didn’t say a hysterectomy wasn’t a cure.
They didn’t say that pregnancy wasn’t a cure, that it is a lifelong condition, especially without proper multidisciplinary care.
They failed to mention that the majority of endometriosis doesn’t show up on scans or diagnostic tests, and that negative results do not mean that I am “fine”.
They failed to mention that hormones were palliative treatments and only masked symptoms and couldn’t prevent or diminish the disease itself.
They failed to mention how harsher hormone treatments, that induced menopause, could have lasting, serious side effects with only possible beneficial short term symptom relief.
They failed to mention there was a safety limit to being on these harsh menopause inducing drugs and kept me on them for years.
They withheld if they or the non-profits they support, took money from the drug companies who made the drugs they prescribed.
They withheld if their affiliated hospitals took money from the drug companies who made the drugs they prescribed.
They withheld if the drug companies sponsored their research, or if the drug companies sponsored the journals they published in.
They withheld that the drug companies sponsor their professional organizations that advise the treatment plans or standards of care that they follow, standards that are supported by research that is paid for by drug companies, by researchers that are paid drug company consultants, affiliated with hospitals that are sponsored by drug companies, and published in journals that take money from drug companies.
They withheld that drug companies essentially pay multiple entities on multiple fronts to make sure that prescribing their products are included in endometriosis standards of care.
They withheld that unless they did a fellowship with an endometriosis surgical expert, they are not qualified to treat a very complex, multifaceted disease.
They made me feel inadequate, when they were inadequate. They compromised my body, by being compromised.
All in what they said, and did not say.
We will gather at The Endometriosis Summit as patients and practitioners. We will say what needs to be said. Together we will move endometriosis forward.
In 2019 Casey facilitated Minimize the Minimization: What did you just say to me? -an interactive experience on the profound impact of well meaning but uninformed providers at the Endometriosis Summit.
Tickets are on sale www.theendometriosissummit.com