The alliance, which formed in November 2020, hopes to create a program that can address the many challenges of endometriosis. Their first plan of action: hearing from endometriosis patients themselves through a survey.
“The Alliance for Endometriosis is using the survey to inform and create an action page that we hope will educate, eliminate the stigma of endometriosis, and encourage conversation,” a partner in the alliance Charlotte Owens, MD, an OB-GYN and medical director for AbbVie, tells Verywell.
Endometriosis Impacts Everyday Life
Specifically, the alliance hopes to raise awareness about the impact of endometriosis on patients’ lives. In many ways, the effects of endometriosis can impact every aspect of a patient’s well-being.
One in 10 women of reproductive age has endometriosis. They may experience period pain, heavy menstrual bleeding, pain during sex, and sometimes infertility.
Symptoms can cause patients to miss out on time with family and friends or even opportunities for professional advancement.
“It’s more difficult to succeed and advance in your career when you’re unable to engage fully because of time off and absenteeism,” Owens says.
Many women do not feel fully acknowledged or heard by their loved ones and physicians.
“There’s a stigma associated with discussing menstrual issues," Owens says. “Period pain can be viewed as normal, or part of being a woman, even by loved ones and healthcare providers. They can be made to feel that, ‘Maybe there’s nothing wrong with me, or maybe this is all in my head.’”
Delayed Diagnosis Worsens the Problem
Many endometriosis patients experience symptoms for months or years before they receive a proper diagnosis.
“The diagnosis is not as straightforward as you may think because we still have to rule out other potential causes,” Owens says. “The time that it takes can be stressful, even if treatment is initiated in the beginning.” Some patients may need to see various other specialists in order to rule out other possible explanations for their symptoms.
However, the longer it takes to get a diagnosis, the more patients struggle, Paul J. MacKoul, MD, a laparoscopic surgeon at The Center for Innovative GYN Care in Maryland, tells Verywell. Endometriosis can progress and become more painful as patients wait for a diagnosis.
Beyond physical distress, the disease’s progression can also cause mental and emotional trauma.
“Mental anguish and frustration can be as severe as the progression of this disease clinically, and many patients begin to look toward narcotics for pain management, leading to potential opioid addiction,” MacKoul says. “This, in turn, can lead to depression, further anxiety, and of course the problems associated with infertility.”
Over time, these psychological and physical factors can lead to deterioration in an individual’s quality of life, Mackoul says, adding that “this can be very problematic for younger patients dealing with the usual difficulties they experience in this age range.”
How to Advocate for Yourself
“When you are not able to be your best self, continuing to suffer in pain is not the right thing to do,” Owens says.
Owens recommends patients keep a detailed journal of their symptoms, regardless of severity. Consider including details such as:
Whether the pain occurs with periods or intercourseWhat makes the pain better or worseA list of questions to bring to your appointment
She also advises patients to be open with providers about all symptoms they are experiencing.
“Speak to your doctor about all symptoms without filtering what you think is normal or abnormal,” Owens says. “We know that leads to a faster diagnosis, and that puts a name to the pain sooner. If you don’t speak up, we have no way of knowing.”
Continuing to track your symptoms after you have a diagnosis will also help your provider determine if your current treatment is working or not.
“The details matter when we’re trying to tailor a treatment plan for you,” Owens says. “Ask how your treatment options will work with your lifestyle. Discuss what makes sense for you now and in the future. Endometriosis is a chronic condition, so you want to plan for the long-term.”
Owens adds that endometriosis treatment is different for each person, so what worked for your friend or family member may not be suitable for you.
“What works for you is personal,” Owens says. “Individualizing your care plan is so important, not just for endo but for all health conditions that women may face.”
Finding a Specialist Who Understands
Patients who continue to experience symptoms should see a specialist with expertise in treating endometriosis.
“Move away from your OB-GYN if that healthcare provider is not listening to your concerns, and research surgeons who are specialists in the treatment of endometriosis,” MacKoul says. “An endometriosis specialist understands the disease and how it progresses and will also have the surgical skill needed to perform the surgery safely, effectively, and thoroughly using minimally invasive techniques that allow for fast recovery.”
That same specialist will be crucial in your management of the disease. “Post-surgically, that endometriosis specialist also understands the implications of proper management of this disease, both for fertility and long-term pain management,” MacKoul says. “That specialist will become the best resource the patient has to cope with the disease in the long and short term.”
