The first time I heard of endometriosis (en-doe-me-tree-O-sis) or “endo” was about seven years ago when a friend of mine told me that she suffered from extremely painful periods and that she had just been diagnosed with a disease called endometriosis. When she explained her pain and her other symptoms it was hard just to listen and even more difficult to try to understand how much she suffered. Every month.
Endometriosis affects about 1 in 10 women in the US and approximately 176 million women around the world. It is a disease that does not discriminate but affects women equally across all racial/ethnic and socioeconomic backgrounds. It affects girls and women during their most reproductive years (it can occur as early as from when a girl experiences her first period). About 30-40% of women who suffer from endometriosis also experience problems to conceive. Fortunately, effective treatments are available and some studies have shown that fertility may improve after undergoing excision surgery to treat endometriosis. For more information about endometriosis there is a short summary at the end of this blog post, or if you would like to read more you can click on the links at the bottom of this post.
Even though many women suffer from endometriosis the disease has not been well studied and little is known about the disease. Perhaps one of the reasons is that the symptoms are often linked to when a woman has her period, and up until recently it has been more or less socially unacceptable to talk about your period, even within some families or among friends. However, lately more women have began to try to stop all the shame and to overcome the social taboo that is still a part of menstruation and women’s periods are more discussed than ever before. It is still however, something most persons find it hard to talk about even with their close friends, but hopefully this is changing and I hope that a more open discussion around menstruation will lead to that diseases like endometriosis might become better known to everyone and eventually to more funding for research and better care/treatments for all women who suffers from this painful disease.
At Columbia University on Upper West Side, Manhattan a group of scientists lead by principal investigator Noemie Elhadad, have been working on a research project called Citizen Endo where they try to collect health data from endometriosis patients in order to better understand the disease from the perspective of the patients themselves. This in order to bridge the gap between what endometriosis patients experience on a daily basis and what MDs know and think about the disease. The reason for this discrepancy between the doctors and the patients is the many ways endometriosis can present itself in patients.
One of the studies to better understand the disease and get descriptions of the disease that are directly linked to the patient experience, involves the development of Phendo, a period tracker for women who suffers from endometriosis. Phendo is a mobile app, created using Apple’s ResearchKit and CareKit, and the objective is to enable patients to track their experience of endometriosis. These data will then be used in research studies to identify symptoms and patient characteristics to study the different subtypes of the disease. Up to date, three subtypes of endometriosis have been categorized and now the Citizen Endo Team hope that the patient data collected with Phendo will shed a light over how each subtype affects symptoms and if there are more subtypes within each type. Elhadad explains that more information about the different types of endometriosis could help us understand who of these women may develop infertility and why some patients respond to treatments while others do not.
Another goal is to help women to determine and manage their own pain, see what triggers their pain and also how their symptoms have developed over time. With Phendo this information could be used to detect bigger trends in the data. This is not only important on an individual level but it would also help to find clusters of women where you can study pain management (like outcome(s) after intake of drug x). In the long-term, it would be possible to use the information from these pain management studies and maybe look for other traits in women within the same cluster that could explain the same type of pain and ultimately find out if there might be any way to intervene.
The name Phendo actually stands for “Phenotypic Endo“, which I think is a perfect name since the main goal with the app is to enable the users to track their own experience of the disease and also allow each woman to customize the settings to best suit her own pain and symptoms. Phendo is not yet on the market, but it will hopefully be available sometimes in the fall. The development of Phendo has been financed only by research funding received by the Citizen Endo Research Team at the Columbia Medical Center, and the team does not accept any commercial or pharmaceutical funding.
Some facts about Citizen Endo Research studies:
- Self-Tracking Among Women With Endometriosis(completed): This was a series of focus groups with women officially diagnosed with endometriosis, conducted and completed in February 2016.
- Phendo Self-Tracking Variables (June 2016-Present, open): This online survey is open to women officially diagnosed with endometriosis.
- Designing Phendo (June 2016-Present, open): This card-sorting activity is open to women officially diagnosed with endometriosis. Online or face-to-face interviews that take place in Manhattan and last about one hour are required.
- Phendo Prototype Testing (July 2016-Present, open): Involves in-person interviews in Manhattan lasting about one hour to assess a self-tracking app prototype; open to women officially diagnosed with endometriosis.
If you suffer from endometriosis and would like to help out with the Phendo development you could fill out their online survey:
The Citizen Endo team say that patient input will help them determine the specific items to include and prioritize in the software. They are looking for women who have been diagnosed with endometriosis through surgery and have experienced endometriosis-related symptoms in the last three months. In an online survey, they are interested in how to capture your menstrual history, your medical history, and your diet with respect to tracking of endometriosis. The online Citizen Endo Mobile App Survey 2 is anonymous, and should take less than 10 minutes to complete.
For more information about participating, visit:
What is Endometriosis?
Endometriosis is an often painful disorder in which tissue that normally lines the inside of the uterus — the endometrium — grows outside the uterus on other parts of the body. Endometriosis most commonly attach to the female reproductive organs such as ovaries, fallopian tubes and the outside of the uterus but can also involve the space between the bladder uterus/vagina and rectum. It is less common found on the bladder, bowel, intestines and appendix or rectum. Rarely, endometrial tissue may spread beyond your pelvic region.