From the moment of her first menstrual period, Julie Bragg suffered pain.
But what does that mean, “pain,” when all girls everywhere are told a little cramping is normal. What’s “cramping?” And what’s “normal?”
But this was pain of a particular nature. Bragg was eventually diagnosed with endometriosis – a condition where the tissue that normally lines the uterus or womb grows elsewhere in the body. Symptoms include significant pain, pain during sex, infertility, fatigue and intestinal disturbances. In its early stages, endometriosis causes small but painful lesions. If left unattended, scar tissue can adhere organs to one another.
“Endometriosis affects every part of your life,” said Sarah Fox, who was diagnosed in 2012. “Every part.”
Yet no one talks about it, and hard numbers of how many women live with the disorder are hard to come by, but estimates are that they number in the thousands in Connecticut. Bragg, who founded a group, EndoConneCT, recently traveled to D.C. for a worldwide march to draw awareness to the disorder. While research exists, the disease is still overlooked or misdiagnosed – or dismissed entirely by people who should know better. In April, popular television personality Dr. Drew Pinsky called it a “garbage bag diagnosis” and implied sufferers who complained of pain were strictly reliving past sexual abuse. He had his head handed to him – and rightfully so.
The last thing women in pain need to be told is that the pain is anything less than what it is – debilitating and life-altering. Such dismissals make women less likely to speak up and act if they suspect the treatment they’re getting is appropriate. Fox said it felt like “glass shards” in her body.
Before her diagnosis, Bragg was prescribed birth control, which regulated the pain somewhat, but by her late 20s, she worried about the hormones she was ingesting, and went off the pill, only to be hit with excruciating pain, unintentional weight loss, nausea, and a host of other seemingly unrelated health issues.
For years, Fox was told that painful periods were part of being a woman. For years, she trusted her medical care, and now, she says, she is infertile because of that trust. Her endometriosis advanced to the point that earlier this month, she traveled to New York to endure an out-of-insurance-network 3½-hour surgery to remove the endometrium from throughout her body.
The biggest challenge is education for both patients and care providers, says Dr. Pinar H. Kodaman, an assistant professor at Yale School of Medicine’s department of obstetrics, gynecology and reproductive sciences.
“Part of the issue is that women having painful periods or pelvic pain is thought to be part of their process,” said Kodaman. “And then the other issue is that ultimately endometriosis is a surgical diagnosis. We don’t operate on every woman we suspect has endometriosis.”
She says it takes a proactive patient to follow up when more conservative measures don’t help, and to, as Kodaman says, “insist on alternative therapies and follow through with someone who is willing and able to do surgery.”
And then patients sometimes must be willing to endure more than one surgery, as have both Bragg and Fox. One of the doctors Bragg saw early on told her after surgery that the disease was “absolutely everywhere.” (A gynecologist told Fox, “I could cry for you, it’s so horrible.” And then the doctor told Fox there was nothing she could do.)
Some of the research going on at places like Yale, says Kodaman, seeks to find more non-invasive methods of diagnosis. What everyone agrees on is the earlier the diagnosis, the better.
To hasten that day, there’s a movement among women who’ve been diagnosed with endometriosis — like Bragg and Fox — and the doctors who treat them to be more open about the disease. Knowledge is good, and increased knowledge through research can only help, says Bragg.
Women who’ve been diagnosed talk about encouraging nursing schools to explore endometriosis more. Fox wants to see education starting in eighth-grade health classes.
“If there was one thing I could do, it would be to make sure every single girl knew about this,” said Fox.