For 20 years, Emily Kischell of California suffered “unrelentingly painful and gruesome periods” before doctors found an “excruciating” chocolate cyst — a cyst containing old blood, fluids, and semisolid materials — on her left ovary that required surgery. A surgeon had to untangle her “mangled-by-adhesions fallopian tube” from the scar tissue that is a hallmark of the autoimmune disease endometriosis, in which tissue that normally stays inside the uterus grows outside of it and can be extremely painful and interfere with menstruation and reproduction.
Kischell was relieved to receive a diagnosis after years of vague answers from doctors.
But after the birth of her first child, she was hit with months of “severe joint and muscle pain” that began with what she thought was a sore throat and would later be diagnosed as an inflamed thyroid gland. “I could barely walk, every bone in my feet felt on fire, and I could barely lift my tiny newborn,” Kischell said.
Now her doctors had no answers for her — except to say that some women experience pain after childbirth. “I was completely frustrated and felt utterly nuts,” Kischell recalls. “How could I be suffering this acutely and not have something medically awry?”
It wasn’t until five years later, after the birth of her second child and the same acute pain flared up, that finally, after pressuring her doctor, she received a referral to a rheumatologist — a specialist in autoimmune diseases. A series of simple blood tests revealed that Kischell had a second autoimmune illness, Hashimoto’s disease, or autoimmune thyroiditis, where the immune system attacks the thyroid, leading to improper function of the gland. It’s common for autoimmune diseases to come in clusters.
If not for the ovarian cyst that revealed the endometriosis, she may have never been properly diagnosed: “My extreme monthly suffering for years would have continued to fall under the category of hysteria.” There doesn’t seem to be a similar term for men’s pain, and Kischell feels sure that if men were presenting with similar pain and symptoms in large numbers, “there would be more attention given to these diseases, and more medical professionals would have relevant training.”
Autoimmune diseases — where the body attacks its own tissues — are often the most baffling to doctors and the most difficult to treat. Considered incurable, those who live with them often must negotiate a life of chronic pain and debilitating fatigue.
Kent Holtorf, Philadelphia-based medical director of the Holtorf Medical Group and the nonprofit National Academy of Hypothyroidism, agrees that women are treated differently than men. He’s seen it in his own colleagues: “They’ll just say, ‘Oh, you’re stressed out,’ and you’ll get an antidepressant, when all along it’s an autoimmune disease,” Holtorf says. Whereas, his experience has shown him that “if a guy comes in with those symptoms, the doctor says, ‘Hey, there’s really something going on here.’”
Treatment for autoimmune diseases often include chemotherapy-like drugs that suppress the immune system and have numerous negative side effects, or “biologics,” drugs that target the inflammatory molecules of pain. Neither guarantee remission of the disease, and many people with autoimmune disease live with daily chronic pain that has to be managed with steroids and opioid pain medications.
So why is research so slow to catch up to a cure? Could it be that 78 percent of those afflicted by autoimmune disease are women? Medical research is still lagging in addressing the reality that women have greater vulnerability to illness and pain and different drug tolerance levels. In lieu of better research, the medical model still tends to treat women who report the kind of pain and fatigue associated with autoimmune diseases as emotional stress or hormones, often missing important diagnoses for years.