If you have a family member with endometriosis, you know it’s more than just a bad period.
You’ve seen firsthand how chronic pain affects someone’s quality of life — and the toll it takes on their mental health. It’s natural to wonder if you’ll experience something similar too.
Here’s what we know: Your risk increases if you have a close family member with endometriosis. More research is needed to fully understand the link between genetics and the condition, but if you have a family history, there are steps you can take to stay ahead of it.
What is endometriosis?
Endometriosis is tissue similar, but not identical, to the lining of the uterus that is found elsewhere in the body. This tissue creates lesions that may cause pain, inflammation, organ dysfunction and infertility. Endometriosis is most often found in the pelvis, but has also been found in the bladder, bowels, diaphragm, lungs, kidneys and even the brain. It occurs in at least 7-15% of women, but due to the average time to diagnosis, experts believe it could be more like 25%.
Common symptoms of endometriosis include pelvic pain, heavy periods, painful sex, and pain during bowel movements. It’s also linked to infertility, as it can interfere with the normal functioning of reproductive organs, specifically the endometrium where an embryo attaches for growth.
What causes endometriosis?
The exact causes of endometriosis are unknown. Experts believe possible causes may include:
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Hormonal issues — Estrogen is linked to endometriosis flare-ups, which may indicate a connection between the condition and hormonal irregularities.
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Immune conditions — While endometriosis is not an autoimmune disease, some evidence suggests that there is a link between endometriosis and several autoimmune conditions.
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Scar tissue — Endometrial tissue can move from the uterus during surgery (such as a C-section) and settle in abdominal scars.
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Genetics — Research suggests genetics may play a role in endometriosis, and that having a family history can increase your risk.
What are the risk factors?
Factors like age, lifestyle, and reproductive history play significant roles in determining your risk for endometriosis. Other risk factors that increase the chances of developing endometriosis are:
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Starting your period at a young age
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Going through menopause later in life
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Never giving birth
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Periods lasting more than seven days
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Short menstrual cycles (less than 28 days)
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Being underweight
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Prolonged estrogen exposure
Is it hereditary?
Over the years, research has shown that women who have a first-degree relative (mom or sister) with endometriosis are more likely to develop the condition. The increased risk could be due to shared environmental factors, genetic predisposition, or a combination of both.
Although there is no one “endometriosis gene” to blame, recent research has found a genetic marker that could be the link. The BCL6 protein, which plays a role in immune responses, is commonly present in women with endometriosis during the phase of the menstrual cycle (luteal) when the endometrium is preparing for the embryo to attach . A positive BCL6 test indicates inflammation of the uterine lining and likely endometriosis. In fact, studies show a greater than 90% concordance between a positive BCL6 result and confirmed endometriosis by laparoscopy.
How’s it diagnosed?
There’s no single test for endometriosis. The current diagnostic best practice is laparoscopic surgery. This allows doctors to see endometrial tissue firsthand and remove problematic growths. Your doctor may run tests to gather more information before doing surgery, such as:
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A physical exam. During a pelvic exam, your doctor can check for masses or abnormalities in the reproductive organs.
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Bloodwork. Hormone levels and inflammatory markers can provide more information.
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Imaging. An MRI might look for infiltrative disease or cysts.
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Biopsy. The Receptiva Dx test examines tissue from an endometrial biopsy. It looks for the BCL6 protein, which indicates inflammation of the uterine lining and likely endometriosis.
How can you stay ahead of endometriosis?
While the exact cause of endometriosis isn’t fully understood, you can stay ahead of it by being familiar with the symptoms and advocating for yourself if something isn't right. It takes an average of 7-10 years to get a diagnosis — so talk to your OB/GYN if you’re experiencing any of these signs or unexplained infertility, as it could indicate "silent" or asymptomatic endometriosis.
If you have a close family member with endometriosis, consider some lifestyle changes to help reduce the risk of developing it yourself. Focus on choices that lower inflammation, like:
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Eating a Mediterranean diet
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Limiting alcohol and caffeine
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Getting regular exercise
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Reducing exposure to environmental toxins
Endometriosis is a complex condition and there’s no true way to prevent it, but getting diagnosed and knowing what to expect and how to manage symptoms can make life better. Connect with other women navigating life with endometriosis in the Rescripted community.
Alexa Davidson is a registered nurse and freelance health writer. She’s written for various women’s health companies, covering topics like natural hormone balance, fertility, and disease prevention. On her own fertility journey, Alexa has experienced profound loss and is passionate about supporting others with similar experiences. When she’s not researching or writing, Alexa can be found in the kitchen, where her specialty is making healthy versions of comfort foods. Nashville Hot Tofu, anyone?