Key TakeawaysEndometriosis is a chronic gynecologic disease with a far-reaching impact on quality of life.Several women’s health advocates created the Alliance for Endometriosis to increase awareness of the disease and provide resources to those who suffer from it.Women living with endometriosis can experience debilitating pain, stigma, and in some cases, infertility.
Key Takeaways
Endometriosis is a chronic gynecologic disease with a far-reaching impact on quality of life.Several women’s health advocates created the Alliance for Endometriosis to increase awareness of the disease and provide resources to those who suffer from it.Women living with endometriosis can experience debilitating pain, stigma, and in some cases, infertility.
To put a spotlight on endometriosis, seven leaders in women’s health have create theAlliance for Endometriosis, a coalition of organizations that aim to amplify the voices of the women diagnosed with the disease.
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 allianceCharlotte Owens, MD, an OB-GYN and medical director for AbbVie, tells Verywell.
What Is Endometriosis?
One in 10 women of reproductive age has endometriosis.They may experience period pain, heavy menstrual bleeding, pain during sex, and sometimes infertility.
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.
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.
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Goals of the AllianceIdentify the specific challenges and needs of people with endometriosisReduce stigma surrounding endometriosisEncourage conversations that lead to faster diagnosesImprove the lives of people with endometriosis
Goals of the Alliance
Identify the specific challenges and needs of people with endometriosisReduce stigma surrounding endometriosisEncourage conversations that lead to faster diagnosesImprove the lives of people with endometriosis
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.
How Endometriosis Is Diagnosed
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.”
What This Means For YouIf you’ve been diagnosed with endometriosis, more and more resources are being developed to help you. The Alliance For Endometriosis is one of those new additions. If you’ve experienced endometriosis, you can take their surveyhere. Results will be available later this year.
What This Means For You
If you’ve been diagnosed with endometriosis, more and more resources are being developed to help you. The Alliance For Endometriosis is one of those new additions. If you’ve experienced endometriosis, you can take their surveyhere. Results will be available later this year.
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:
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.”
Can You Get Pregnant With Endometriosis?
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.
Endometriosis Is More Common in Teenagers Than Previously Thought, Study Finds
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.”
1 SourceVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.The American College of Obstetricians and Gynecologists.Frequently asked questions: endometriosis.
1 Source
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.The American College of Obstetricians and Gynecologists.Frequently asked questions: endometriosis.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
The American College of Obstetricians and Gynecologists.Frequently asked questions: endometriosis.
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