“It’s all in your head. It doesn’t hurt that bad. You need to man up.”
Imagine suffering from a chronic health condition, day in and day out, only to have your symptoms minimized or pushed to the side. Unfortunately, this experience is all too common for women across the nation who have endometriosis. Now is the time to stop that behavior, demand better care from physicians and health care providers, and take control.
March is Endometriosis Awareness Month, highlighting a condition that affects some 1 in 10 women and girls of reproductive age. Endometriosis occurs when endometrial-like tissue (similar to the tissue that lines the uterus) is found growing outside its normal location, typically in the pelvic cavity and around the outside of the uterus and ovaries.
This tissue responds to monthly hormonal changes and with time results in inflammation and crippling, chronic pelvic pain. Other symptoms of endometriosis are painful menses, pain during intercourse, pain going to the bathroom and severe abdominal bloating. While most cases are contained in the pelvic cavity, endometriosis has been found around the bowels and in the lungs and nostrils – even in the brain.
There is no cure for endometriosis, and the only way to definitively diagnose it is through invasive laparoscopic surgery. On average, the time between the onset of symptoms and diagnosis is seven to 10 years, leaving women in pain and untreated.
Why is that? There are many reasons, but often it all starts with ignoring women’s calls for help and dismissing their pain.
As a scientist studying endometriosis, I have spoken to and studied women with endometriosis for more than a decade. Their personal stories are heartbreaking and, sadly, repetitive of one another. Physicians have told them their period is simply heavy. The cramping and pain are normal. They need to stop complaining. Their symptoms are in their head. They are making up the pain because they want pain pills or have psychological problems.
Tell that to the women who can’t hold down a job because they have used up all of their sick days in three months. Or those who are fearful even to go on a date, knowing they’ll be sick for several days each month. This gaslighting is emotionally and physically draining. And ignoring their pain could be worsening their condition.
Many doctors are unprepared for or uneducated on how to care for their patients with endometriosis. They may not understand the condition, including how to diagnose it and treat it.
It isn’t easy, but it all starts with finding a gynecologist or health care provider who listens to them and is someone they can trust. Many women are forced to travel or resort to intensive research to find the “best” doctor. It can seem like an impossible journey, but I can only share words of encouragement and hope. There are good doctors out there who understand your pain and can help.
Second, stay vocal. Join support groups or online communities and participate – advocate for yourself. Grab a friend and start your own support group if you haven’t found the right one yet. There is power in numbers and relief in working together. Organizations like the Endometriosis Foundation of America are a powerful tool in bringing women together and providing them with the most up-to-date information and resources on the condition. Many organizations like the EFA have patient advocacy days during their annual conferences, and many offer lots of online support and information.
Finally, keep working toward getting a diagnosis. This is where the ROSE – or Research OutSmarts Endometriosis – research team hopes to make a difference. As mentioned, the only definitive way to diagnose this condition is through an invasive laparoscopic surgery, along with analyses of the tissue biopsies. Many women are hesitant to undergo this procedure, and insurance may not cover it.
Our team at the Feinstein Institutes for Medical Research, however, is developing a noninvasive diagnostic that uses menstrual effluent to study endometrial stromal cells that line the uterus and prepare the uterus for pregnancy. These cells have been found to be different in women with endometriosis compared with healthy controls, as well as other signs of endometriosis found in menstrual blood.
More than six years ago, we created the ROSE clinical study in which women who are either healthy, diagnosed with endometriosis or have symptoms of endometriosis and have not yet been diagnosed can provide their menstrual blood for research to develop the test. To date, we have enrolled almost 1,000 women across North America.
Our hope is to one day obtain Food and Drug Administration approval for our diagnostic test so that women and teens can avoid diagnostic surgery. With an early diagnosis, women and girls can get the treatment they need earlier and get on the path toward a healthier life, allowing them to achieve their full potential.
During this Endometriosis Awareness Month, I urge every woman and healthy ally to open their eyes and ears, stop dispelling someone else’s pain and offer support. One day, we’ll have a better, more widespread method to diagnose and treat this painful condition that affects so many.