Everyone Has A Story: Beck O’Brien

I have Polycystic Ovary Syndrome (PCOS) and Endometriosis. These two diseases are extremely common. The World Health Organization (WHO) estimates the prevalence of PCOS and the prevalence of endometriosis each being about 10% of the population for women of reproductive ages. And yet, for women with PCOS, over one third have to wait more than two years for a diagnosis, and half must consult with at least three different doctors. For endometriosis, the numbers are even higher, with an average time of seven years to get a diagnosis. 

My journey into getting diagnosed began with an offhand comment from my gynecologist during a routine yearly checkup. *Cue Barbie movie joke about being stoked to go to the gynecologist*  We were discussing overall women’s issues, and I was complaining about the never-ending battle against facial hair. She said, “Well yeah, but it’s worse for you because of your PCOS.” I said, “My what? What is PCOS?” That began a multi-year journey of getting an official diagnosis for PCOS and eventually endometriosis as well. 

My Long Journey to Diagnosis

The doctor’s office at that time wasn’t digitized at all. All the records and notes were handwritten, and appointments were scheduled over the phone with a postcard reminder that came in the mail. Immediately after that appointment, I started to research PCOS and connect the dots between clinical symptoms and years of personal experience. 

I called the office to ask about next steps in testing, but the doctor had retired and the office had closed without warning. I got a letter in the mail stating my paper records had been shipped to another doctor’s office and I could contact that provider to get paper copies of my information.

The transition between then and now involved a lot of common pains for the healthcare industry: 

• Difficulty accessing my own health information.

• Lack of continuity of care with different providers giving conflicting information.

• Providers dismissing symptoms and suggesting that the answer is to “just lose weight” (despite it being hormonal issues that caused me to gain the weight in the first place).

• One of the most commonly prescribed medications to manage PCOS symptoms, a testosterone blocker, getting caught up in some of the legal and political battles happening now against gender affirming care. 

Fast forward to now. I have a patient portal where I can see test results immediately, track progress of hormonal shifts over time, read notes from my doctors after each appointment, and be a better informed advocate for my own care. This setup helps keep information from falling through the cracks – like my original doctor assuming that I knew what PCOS was because I had shown all the symptoms for years and she had written a note somewhere in a chart I never saw.

There is surprisingly still not a lot of information about effective treatments for PCOS and endometriosis, especially given their prevalence. Researchers and doctors cite all kinds of conflicting information about what might be helpful. It‘s going to be an ongoing journey to continue to manage these diseases for myself. 

Healthcare is a Human Right

I’m really grateful for the advancements in healthcare technology that are starting to make this medical record management process go more smoothly and be more accessible to patients. 1upHealth is contributing to this evolving landscape with things like our 1up Patient Connect product which my team works on, and it’s great to be able to see firsthand how some of the things we’ve built have had a direct impact on improving patient experiences within the healthcare industry. I hope that we as an industry never lose focus on the human element and the fact that healthcare is a human right.