New App Helps Patients Track Reproductive Health
SAN FRANCISCO — Endometriosis, a condition where tissue similar to the lining of the uterus grows outside of the uterus, has been dubbed the “missed disease.”
It can take up to a decade for people to get diagnosed, and yet, it likely affects about one in 10 people in the U.S. In the meantime, they can experience severe pain, bloating, excessive bleeding and fertility issues.
A new app called Uterinekind is aiming to upend the trend of late and missed diagnoses for conditions that affect the female reproductive health system. Its founder and CEO, Carol Johnson, was personally affected by a late diagnosis.
“I had really heavy bleeding and really painful periods,” she said. “About two weeks out of every month I was negatively impacted by symptoms that my doctors were dismissing as ‘that’s just your period.’”
Eventually, Johnson tried a food elimination diet that led her to discover she has celiac disease, which is an immune reaction to eating gluten. But she didn’t find out about fibroids on her uterus until she was pregnant and noticed them on the ultrasound.
“I could cry right now actually just thinking about it because I had undiagnosed celiac disease for 25 years and I had undiagnosed fibroids for 20 years. And now that I look back on it, I’m connecting the dots, and I’m seeing how sick I really was,” she said.
“I went to dozens of doctor appointments … at least over 50 appointments that were trying to address symptoms of celiac disease and symptoms of abnormal uterine bleeding, and nobody connected them.”
The new app, available in the Google Play Store and soon on the Apple Store, tracks symptoms like bleeding, pain, mood and energy to help people connect the dots between their symptoms and a potential diagnosis, with the help of their doctor, faster.
The app tracks symptoms allowing members to watch how those symptoms trend over time and how any changes in their life impact their symptoms. When a member is ready to see their doctor, they can print a one-page report that is designed for physicians to quickly and easily see their patients’ data. If the member receives a treatment for their condition, then they can monitor their medications or other interventions in the app and once again track their symptoms to see if the treatment is working.
“What patients need is to be able to walk into a doctor’s office and hand over their symptoms data. Because remember, 90% to 95% of every diagnosis comes from their symptoms data,” Johnson said.
The platform also offers comprehensive health education in the form of podcasts, blogs, research and uterine news so members can take what they’ve learned and put it into action to advocate for themselves at the doctor or make better decisions about their bodies.
“If your doctor says that endometriosis is the lining of your uterus that has implanted outside of the uterus, that is not the doctor that you want to see,” Johnson said.
“We’re giving them the sort of behind the curtain, these are the red flags to look out for, these are the questions to ask, this is how to start your appointment. Those are discussion guides that they can use on their phone while they’re in an appointment.”
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