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What I Wish You Knew About My Endometriosis

How to be more empathetic for those suffering from endometriosis, a poorly studied disease that affects more than six million people in the U.S., and nearly 200 million worldwide.

For over ten years, Madalene Zale suffered from debilitating pain. When she was only 15, the pain would come on suddenly, last for days, and leave her feeling exhausted and defeated. Nothing her doctors offered helped, and everyone she met said it was unfortunately just normal menstrual pain.  Finally, after years of feeling unheard while trying to manage her own painful symptoms, Zale got confirmation that she had endometriosis after an emergency appendectomy at 25.

Madalene Zale outside in sunshine

Madalene Zale

It was only after her diagnosis that she began to learn about the disease and how few effective treatments there are. Although it’s estimated to affect more than six million individuals in the U.S., it’s difficult to diagnose. A recent study suggested as many as 60% of adolescents with severe pelvic pain may actually have endometriosis. The disease can only be definitively diagnosed with surgical visual inspection with histologic confirmation, often a costly and inaccessible approach.

Recently, Zale published her own research in collaboration with Amy Leader and other Jefferson researchers. Their work showed that few providers know how common endometriosis is, and many stated feeling they lacked the training to accurately identify and treat patients with this disease. “These findings speak to the experience of many patients with endo – on top of the pain, we struggle with a lot of stigmas,” says Zale, who is a project manager and researcher in the College of Nursing at Jefferson.

We talked with Zale about what she wished others – from employers, to friends, to healthcare providers – knew about endometriosis.

I Wish You Believed Me When I Say it’s Not Just a Bad Period

In normal menstrual cycles, the lining of the uterus – the endometrium– sheds. However, in endometriosis, tissue similar to the lining of the uterus grows outside of the uterus and on other areas in your body where it doesn’t belong. The endometrial-like tissue can attach to the intestines, bladder, and bowel while acting like endometrial tissue, thickening, breaking down, and bleeding. But because this tissue has no way to exit your body, it becomes trapped. This “rogue” endometrial-like tissue can also connect unrelated organs, cause scar tissues and adhesions.

Uterine contractions during the menstrual cycle can be painful, but those same contractions and inflammation from misplaced tissue in endometriosis can cause debilitating pain as well as nausea, diarrhea, intense cramping and bloating, and painful urinary symptoms like frequency, urgency, and irritation. Patients also experience fatigue, back and leg pain, and pain with intercourse.

I Wish You Wouldn’t Use Ableist Language

“If I had a dollar for every time someone said ‘you don’t look sick’ to me, well, let’s just say that I’d have a lot more money to use towards endometriosis treatments,” says Zale. This plays into an inaccurate notion that someone’s physical health can be accurately assessed by visual inspection, when in actuality, invisible illnesses, like endometriosis, hide in plain sight; you don’t see the pain and the symptoms, nor do you see the scars that come from the (sometimes multiple) surgeries. By that same token, physical health is not an indicator of competence, work ethic, or aptitude. One should not feel the need to hide or downplay their diagnosis or symptoms to gain earned accolades or recognition.

I Wish You Were Patient With Me

Some of the most trying symptoms to live with on a daily basis, outside of pain, is chronic fatigue from being in pain all the time and the subsequent ‘brain fog.’ Patients have described brain fog as being more than forgetfulness. It can create an inability to focus or concentrate, making simple tasks feel like a much greater effort.  “When your body is in pain constantly, everything inside of you (your immune system, your nervous system) is working overtime. As a result, you feel like you ran a marathon every single day,” says Zale. “Despite getting eight hours of sleep, you never feel well-rested and rarely have the stamina or energy for day-to-day activities.” Zale often wishes others, from friends to family to colleagues, would practice patience with her.  When patience is offered in the form of a deadline extension, the ability to work from home, or understanding last-minute canceled plans or texts not answered right away; it can relieve a lot of stress this chronic disease causes.

I Wish You Trusted That I’m Not Being Dramatic

“This pain is downright incapacitating. Please trust me when I ask you to believe me,” says Zale. “No one wants to talk about how much you bleed or how you can’t zip up your pants because of ‘endo belly’ (the nickname for the bloat that commonly comes with endometriosis). But at the end of the day, this is a patient with endometriosis, and they need your help.” More often than not, patients deal with their pain quietly and alone, for fear of being dismissed or ignored, so when a person with endometriosis reaches out for help, “we need you to trust us that it’s real and that it’s bad.”

I Wish You Knew That You Don’t Have to Identify as a Woman to Have Endometriosis

People who identify as women aren’t the only ones who can have endometriosis. Anyone born with a uterus, or assigned female at birth, whether they now identify as a man, woman, non-binary, or transgender, can have endometriosis as well. “There’s a lot of discussion in endometriosis communities about a ‘sisterhood’ with posts addressed to the ‘ladies,’ but that kind of language can unintentionally marginalize and exclude and further perpetuate stigma and harm,” says Zale. The stigma faced by patients with endometriosis can be just as severe, if not more so, for non-binary or transgender patients. Instituting more inclusive language is a work in progress in both the medical and endometriosis communities.

I Wish We Were All More Proactive in Our Health Care

Although there is no cure for the disease, and traditional treatments are very limited, Zale says, “I wish there were more conversations about what existed outside of hormone-related or surgical offerings for patients with endometriosis. From pelvic-floor therapy to acupuncture or massage therapy for the pain, there are a number of things patients can do, either on their own or with support from their care team, to help manage the symptoms.” It’s also important to understand that a hysterectomy, or surgical removal of the uterus, is not a cure for endometriosis.

“Hysterectomy will help some women with anatomic distortion and scarring, and in these cases, removal of the ovaries as well is more effective at controlling pain than hysterectomy alone,” says Dr. William Schlaff, who oversees the department of obstetrics and gynecology at Jefferson and is an endometriosis researcher.  “But hysterectomy it’s rarely, if ever helpful for women who have less endometriosis. In fact, a hysterectomy can make the pain worse. If women are having neuropathic pain, and many women with endometriosis experience this kind of pain, hysterectomy can exacerbate it.”

“The discourse around hysterectomy often accompanies whether a patient would like to keep child-bearing potential, and so, it can be disheartening – for a number of reasons – when hysterectomy is offered as the only solution when all other treatment options have been less than successful up until that point,” says Zale. If you’re able to, do your research, cultivate awareness, and advocate for yourself every chance you get.”

From the Experts, Patient Perspectives, Research & Innovation