Nearly one in 10 women experiences the chronic pain of endometriosis, but for many, the symptoms are dismissed. Why is this still happening?
Despite endometriosis recently being recognized as one of the most potentially excruciating and destructive medical conditions on record, the lack of awareness of this debilitating condition contributes to many women suffering far too long before their diagnosis.
While women’s health concerns have been whispered with discretion for many decades, endometriosis awareness should be as common as our diabetes discussions, affecting so many today.
What this blog covers:
What is Endometriosis?
Symptoms and signs of endometriosis
Why does endometriosis cause so much pain?
Diagnosis and treatment options for endometriosis
The pain we ignore
Navigating relationships and fertility
Raising awareness and advocating for better care
What is Endometriosis?
Endometriosis is a condition in which tissue similar to the lining of the uterus grows outside the uterus, causing pain and inflammation.
This tissue can grow on the ovaries, fallopian tubes, and other areas of the pelvis.
The exact cause of endometriosis is not known, but it is believed to be related to hormonal imbalances and genetics.
Symptoms and signs of endometriosis
The most common symptom of endometriosis is pain, which can be severe and debilitating.
Other symptoms may include heavy or irregular periods, pain during sex, infertility, and gastrointestinal issues.
The symptoms of endometriosis can vary from person to person, and some may not experience any symptoms at all.
Endometriosis comes with a tangled knot of symptoms, many of which are characterized by extreme pain, painful sex, painful urination and bowel movements.
Menstrual cramps that cause stabbing pain and aches in the abdomen and lower back.
Gastrointestinal disruptions, like painful diarrhea and constipation, which patients often confuse for signs of another health issue.
Why does endometriosis cause so much pain?
This chronic disease occurs when tissue similar to the kind that lines the uterus, known as the endometrium, grows beyond the uterus and typically implants in the pelvis.
When those with endometriosis have a period, the same biochemicals that cause the uterus to contract also activate the endometrium in the pelvis, which can lead to intense pain beyond the uterus.
But the disorder also causes pain between periods.
Endometriosis can block fallopian tubes, trapping blood in the ovaries to form fluid-filled cavities known as “chocolate cysts” (because they contain thick, brown liquid) or endometriomas.
In rare cases, those cysts can rupture, causing sharp, intense aches. The disorder can also lead to adhesions, bands of scar tissue that cause organs to stick together.
Emerging research is investigating what causes endometriosis and why some people may be more susceptible than others.
Scientists are also exploring whether the disease is hereditary: Though the data is inconclusive, some doctors consider a family history of endometriosis to be a risk factor.
While some women experience symptoms during their first periods, others develop endometriosis later in life.
There are four stages of endometriosis, which the American Society of Reproductive Medicine classifies as minimal, mild, moderate and severe, based on the location, amount, depth and size of endometrial implants in the pelvis.
Diagnosis and treatment options for endometriosis
NOTE: At ELANZA, we believe that when it comes to endometriosis, there is not a best or only choice about which treatment options to pursue, there is just the solution that works for you. There are important considerations around every treatment plan and our single mission is to provide evidence and options so that anyone with endo has the ability to advocate for themselves and to make informed decisions about their care. We have no vested interest in any single treatment plan (i.e. surgery, medication, etc.). Our mission is to improve access to specialist care, whatever that entails.
Diagnosis of endometriosis can be challenging, and it often requires a combination of medical history, physical examination, and imaging tests.
Treatment options for endometriosis may include pain medication, hormonal therapy, or surgery.
Pain management techniques such as heat therapy, acupuncture, and yoga may also be helpful in managing endometriosis pain.
The pain we ignore
Despite the pain, doctors often point to other culprits first before homing in on endometriosis.
Most experience a long delay between when they start to experience symptoms and when they actually receive treatment.
That’s partly because there’s a lack of awareness in the medical community about how the disease manifests and partly because doctors are especially poor at identifying painful gastrointestinal symptoms as potential endometriosis.
Patients themselves often dismiss their own pain, shrugging off endometriosis as just a “bad period.”
Raising awareness and advocating for better care
Raising awareness about endometriosis is essential to improving care and support for those with the condition.
Educating healthcare providers and the general public about endometriosis can help reduce the stigma and improve access to care.
Ways to raise endometriosis awareness
Now that we’ve covered what endometriosis is and what to look out for, it’s time to go talk about it.
Of course, if you are concerned that you may be suffering from any of these symptoms and wondering if your experience may indicate endometriosis, this is a conversation best had with your doctor to begin getting the relief you need to get back to living life the way you want.
But how else can you raise awareness for this common condition?
Talk about endometriosis facts with your friends and family.
One of the easiest ways to raise awareness about this prevalent and painful condition is simply talking about it in your social circles.
Ask if other women have heard about it or experienced it for themselves. If not, share your knowledge on it and encourage them to be aware of how these symptoms may present in their lives.
If you know someone experiencing endometriosis, be curious about their personal experience and how it affects them.
This understanding can foster a lot of conversation with others, as well.
Share articles on social media
Everyone is on social media in some capacity, and many people have even admitted to getting most of their daily news from social media.
This popularity makes social media a great way to share information with many people in your social circles at one time.
Many official organizations like the Endometriosis Association, Endometriosis Foundation of America, and ELANZA Wellness share helpful information and resources about the painful condition.
Be active during endometriosis awareness month
The entire month of March is globally dedicated to Raising Endometriosis Awareness and is celebrated with yellow ribbons.
It began in 1993 and is now observed worldwide through activities such as educational forums and outreaches, fundraising of all kinds, and marches to raise both awareness and the funding needed to provide care and continue research on this condition.
Get political
Becoming an endometriosis advocate is an opportunity for you to use your voice to help promote policies that could benefit other women.
One way to make a difference is to join organizations and participate in their advocacy campaigns, which often prove successful.
Endometriosis Foundation of America’s UpEndo Coalition is an effort designed to promote advocacy, educate the public, and raise awareness.
Talk about your experience
If you have been diagnosed with endometriosis, you can help others learn about the condition and understand your medical journey by starting your own blog or sharing your story.
People are more likely to take the time to listen and understand when it comes from a personal connection, so every case is vital in the fight for awareness.
The takeaway
Endometriosis is a painful and often misunderstood condition that affects millions of women worldwide.
By raising awareness, advocating for better care, and providing support to those who live with endometriosis, we can improve the lives of those affected by this chronic condition.
Let us take endometriosis seriously and work together to provide better care and support for those who need it.
