This Endometriosis App Can Change The Way We View Women's Health
It took journalist Lizzie O’Leary 21 years to be diagnosed with endometriosis, even though her symptoms appeared shortly after her first period. “An entire person could have grown up and legally bought alcohol in the time it took for me to get diagnosed,” O’Leary explained.
She’s not alone. According to the Endometriosis Foundation of America, at least 200 million women worldwide have endometriosis, an estrogen-dependent chronic inflammatory disease that affects women starting at reproductive age. Tissue similar to the uterine lining grows outside of the uterus, causing painful lesions. According to Dr. Tamer Seckin, a prominent gynecological surgeon who operated on Lena Dunham’s endometriosis, the symptoms can vary widely, but among the most common are severe pelvic pain, loss of quality of life, and sub-fertility.
On average, women suffer with symptoms for 10 years before receiving a correct diagnosis. And even with diagnosis, the pain can continue, since there is no cure for the condition. Dr. Seckin noted that the most common treatments are hormones and the surgical removal of the lesions.
“It’s frustrating because there’s really not a whole lot of solutions out there,” said Noemie Elhadad, a professor of Biomedical Informatics at Columbia University. “Treatments are available, but we don’t know who yet who will respond in which way to what treatments. There’s still a whole lot of experimentation required and it’s really a burden on the patient.”
It was Elhadad’s own frustration with endometriosis, coupled with her research on the intersection of technology and medicine, that led her to study data sets on the disease. She discovered that there was a shocking dearth of information.
“There’s not ton of documentation in medical claims about how many surgeries women experience for endometriosis and what type of surgery is done for them, for example. It felt like we were missing actual relevant data to study better the disease.”
That need for data led Elhadad to create Phendo, an app that allows sufferers to track their endometriosis symptoms, treatments and self-management strategies.
“I want to change the mental model of the way the disease is diagnosed,” explained Elhadad. By asking patients directly to share their experiences, she and other researchers can build catalogs of symptoms, which in turn can help women get diagnosis and treatment at an earlier stage.
Currently Phendo has about 6,000 participants throughout the world who actively engage and track their symptoms and treatments. Besides helping create data for researchers, app users are easily able to reflect on their records and better advocate for their issues at the doctor’s office.
“There’s a lot of evidence by now of gender biases in healthcare where women in general are not being heard when they talk about their symptoms,” said Elhadad.
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The phenomenon is exacerbated with endometriosis because the associated symptoms, like pain and fatigue, can sound vague. In her struggle to get a diagnosis, O’Leary went to a hodgepodge of doctors, from gastroenterologists to surgeons to internists. At an early age, O’Leary even brought up the possibility of endometriosis, but gynecologists shot her down.
“And I was actually told, ‘No, you’re too young. It wouldn’t happen to someone your age.’ I think we know differently now, but it’s not like I didn’t raise the question,” she said. “I raised it myself a lot.”
Many women also struggle with sexism in health care, unable to make doctors understand the extent of their suffering. Elhadad is hopeful Phendo can change that.
The app “can show in a very nearly mathematical way, a graph of this is how your pain has been in the past few months, it feels like an accurate description and something that feels so objective about who they are and hopefully a way to get heard.”
Clarification: Language in this story has been amended to clarify what type of tissue causes lesions in endometriosis.
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Padma Lakshmi
Lakshmi recently told Entertainment Weekly that the condition may have contributed to her divorce from author Salman Rushie. “I think, yes, endometriosis was definitely a major reason that my marriage failed," she said.
"I don’t think either of us understood it at the time – for as smart and intelligent as Salman is. I think that’s also because I hid it to a certain degree. Not intentionally, but it’s weird to talk about your period all the time. It’s the least sexy thing in the world to do.”
Halsey
“Emo moment; but if any of you suffer from Endometriosis please know you aren’t alone. I know how excruciatingly painful it can be and how discouraging the disease can be. To feel like it’s gonna limit you because of how debilitating it is. To miss school and work, or even worse to GO and suffer through it anyway feeling like a prisoner in your own body. To maybe be worried about ‘never having kids,’ or dealing with crazy treatment suggestions. I was recently diagnosed after years of suffering and finding myself doubled over backstage in the middle of my sets, or fighting back tears on an airplane, or even being in so much pain I would vomit or faint. With doctors essentially telling me I was being a big baby about my period, or misdiagnosing PCOS, etc etc. Finding out that I have endo was the most bittersweet moment because it meant I wasn’t crazy! I wasn’t a ‘baby’! I had every right to be feeling like the world was caving in. But it was terrifying to find out. Just know I’m here if you want to vent. I have managed to live a wild, incredible, and unpredictable life with Endo, and I’m here for you! x"
Whoopi Goldberg
"It never occurred to me that somehow women didn't know about it," she said at the Endo Foundation's 2009 Blossom Ball.
"You have to take whatever stigma people think that is there," she said the same evening. "You have to take it. It’s not male or female. It has nothing to do with that. It has to do with, here’s a disease you don’t know about and you need to know about it. It’s that simple. It’s not rocket science."
She continues to be an advocate for raising awareness.
Lena Dunham
"I am currently going through a rough patch with the illness and my body (along with my amazing doctors) let me know, in no uncertain terms, that it's time to rest,” Dunham wrote in an Instagram post.
Soon after the post, Dunham was hospitalized for a ruptured ovarian cyst.
She wrote of her condition earlier in her 2014 memoir Not That Kind Of Girl, describing the pain as feeling like "someone had poured a drop of vinegar inside of me, followed by a sprinkle of baking soda. It bubbled and fizzed and went where it would.”
Tia Mowry-Hardict
"Despite my diagnosis I still wanted to try and have a baby, but not being able to have kids was an immediate fear," she told Parents. "It made me feel out of control."
The famous twin now has positively adorable four-year-old son, Cree.
Susan Sarandon
![“When all you know is pain <a href="http://endometriosis.org/news/congress-highlights/susan-sarandon-speaks-up-about-endometriosis/" target="_blank">you don’t know that that is not normal</a>," said Sarandon, who became aware of her condition in 1983 and has given advice for men on how they can help. <br /><br />Sarandon suffered from irregular bleeding and fainting. Though doctors <a href="http://www.ajc.com/videos/entertainment/first-look-susan-sarandon-on-the-pregnancy-that/v4FtW/" target="_blank">told her she wouldn't be able to bear children</a>, the acclaimed actress beat the odds and has given birth to three. <br /><br />"<a href="http://endometriosis.org/news/congress-highlights/susan-sarandon-speaks-up-about-endometriosis/" target="_blank">It is not a woman’s lot to suffer</a>, even if we’ve been raised that way," she said at the 2011 Blossom Ball, adding, “Suffering should not define you as a woman. And just because you’re a man it doesn’t mean that it doesn’t affect you.<br /><br />"Help [the woman in your life] to remove the taboos and the loneliness surrounding this disease; be understanding, show empathy, and don’t accuse her of being sensitive, delicate, or overly dramatic – this is a big opportunity for you guys to show that you care and to be a real man."](https://s.yimg.com/ny/api/res/1.2/Ia.vex2piYUlJAh8hT0Eog--/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MA--/https://img.huffingtonpost.com/asset/56e1bbe91e0000950070fb13.jpg)
Sarandon suffered from irregular bleeding and fainting. Though doctors told her she wouldn't be able to bear children, the acclaimed actress beat the odds and has given birth to three.
"It is not a woman’s lot to suffer, even if we’ve been raised that way," she said at the 2011 Blossom Ball, adding, “Suffering should not define you as a woman. And just because you’re a man it doesn’t mean that it doesn’t affect you.
"Help [the woman in your life] to remove the taboos and the loneliness surrounding this disease; be understanding, show empathy, and don’t accuse her of being sensitive, delicate, or overly dramatic – this is a big opportunity for you guys to show that you care and to be a real man."
Julianne Hough
"I know more than anything I want to be a mom and have kids," she said. "That's so important to me." The star underwent laparoscopic surgery in the middle of the 2008 season of "Dancing with the Stars."
Hough wrote about the event on her blog the same month. “Last week was more than just a tummy ache,” she wrote. “It turned out I ruptured a cyst that was on my ovary. I didn’t know, but I have endometriosis. I’ve apparently had it for a long time because I’ve had this pain for about the last five years. It hasn’t been as bad. Up till last week, I let it go and I was always too busy to get it checked out.”
Dolly Parton
"It was an awful time for me," she said. "Every day I thought, 'I wish I had the nerve to kill myself.'"
Meg Cabot
![In 2007, the author wrote that she was shocked to discover she had endometriosis. "[It] came as a shocking blow, of course, because <a href="http://www.megcabot.com/2007/12/still-ow-but-getting-better/" target="_blank">I never even knew I <i>had</i> endometriosis</a>. As a cybercondriac, it kills me that I’ve apparently had a disease for <i>twenty-eight</i> years and never even knew it. That is just so wrong."](https://s.yimg.com/ny/api/res/1.2/9hqOPxSQv7FZMWO1QzWLqQ--/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MA--/https://img.huffingtonpost.com/asset/56e1bc94150000ad000b198e.jpg)
Jillian Michaels
"I was always told that fertility would/could be a problem for me. Why do I have this? I’ve heard everything from “You have too much caffeine in your body” to “It’s genetic” to “You need to be put on birth control pill” — and I don’t believe in using synthetic hormones. In order to get pregnant, I know it would require surgery. For me, it becomes a sort of 'I can’t handle doing that.'"
Michaels became the mom of two children in 2012: A daughter adopted from Haiti and a son carried by partner Heidi Rhoades.
"Keep on top of how your body is feeling and don't worry about sounding like a hypochondriac," she wrote. "From your head to the tips of your toes we only have one body, let us all make sure ours our working in tip top condition, and take help if it's needed."
This article originally appeared on HuffPost.
