Endometriosis 101: Breaking the silence
Endometriosis 101: Breaking the silence
How voice and self-advocacy can change the pace of diagnosis
For the 10% of women worldwide who have endometriosis, the stabbing, twisting, take-your-breath-away pain that accompanies their period is anything but ordinary, and the severe mood swings, depression, and anxiety can be debilitating.
The question is, at what point should you stop writing your symptoms off as “normal” and talk to a doctor? It’s a tough question to answer, which is a big reason why endo takes up to 10 years to diagnose, and why so many women suffer in silence before getting the help they need.
In honor of Endometriosis Awareness Month, we spoke with three women who know about endometriosis firsthand and can account for the complicated pieces of this chronic condition. Nina Baker and Kimberly Tronolone of Endometriosis Foundation of America (EndoFound), and Flutter Health founder and EndoFound board member Kristy Curry, break down the realities of this disorder and discuss how women can learn to self-advocate in order to get the treatment they need.
What is endometriosis?
Put simply, endometriosis is when tissue that looks and acts like the lining of your uterus (your endometrium) grows in places it shouldn’t. Because endometrial tissue reacts to hormonal changes that accompany your cycle, it causes cramping and inflammation wherever it appears.
Fight for your right to be taken seriously
Kristy Curry, the CEO and Founder of Flutter Health, an app for women who experience painful periods, explains that because endo symptoms mirror typical PMS symptoms, it can be hard to get the attention you deserve.
“I had been seen by many doctors who thought all periods were the same,” Curry told us, “and that my only problem was my inability to grin and bear the pain as well as the next woman.”
This fear of not being believed makes talking with a doctor more difficult than it should be. Baker stresses, “You know your body best. If you think something is wrong, speak up. Your health depends on it!”
Tronolone adds,”When you talk to your doctor, be firm about the severity of your pain, and don’t be afraid to switch doctors if you aren’t getting the care and attention you deserve.”
The difficulty of diagnosis
According to the EndoFound, the difficulty that physicians face when attempting to diagnose endometriosis is two-fold:
First, endometriosis is not usually covered at length in medical school, so doctors may not consider the condition when first examining a patient. Second, because endometriosis symptoms such as digestive problems, pelvic pain, and leg pain are shared with many other conditions, misdiagnosis is common.
If you think you might have endometriosis, the only way to definitively know is through diagnostic laparoscopy — a minimally invasive procedure in which a doctor looks uses a thin telescope to look into your pelvic area and search for visible signs. Diagnosis is then confirmed through pathology, which is the process of examining tissue samples to determine if the disease is present.
Endometriosis and fertility
The good news is that endometriosis is a highly treatable cause of infertility. “In my case,” said Curry, “I was lucky enough to get pregnant with identical twin boys, naturally, after my most recent excision surgery.”
Your voice matters
It’s hard enough for any woman to talk openly about her period. Even in 2018, menstruation is still taboo. It’s especially hard when you feel like your symptoms are extreme, and you’re worried others will judge you for complaining.
But this is precisely why it’s so important that we cultivate open conversation about endometriosis and its impact on women’s lives. When more people understand the reality of this disease, the stigma won’t stick.
As Curry reminds us, “Saying you have painful periods doesn’t mean you are weak or dramatic. It is being honest and responsible. You need to be proactive about your reproductive health.”
Look for help, and you’ll find it
If you think you might have endometriosis, it’s important to know you’re not alone. Organizations like the EndoFound are working hard to educateeveryone about endo, and online and IRL communities are thriving.
Getting help from others is important, but don’t forget to help yourself. Curry recommends tracking your symptoms and sharing every single detail — no matter how embarrassing — with your doctor. “It affects every part of your life and your future life,” she says, “especially family planning. You need to come up with a treatment that makes sense.”
Her dedication to this cause was the genesis of the Flutter Health app, which keeps track of symptoms, lets you export your tracking data so a doctor can see it, and can connect you with other women who are going through the same thing.