I would wager that nearly everybody reading this article has heard of somebody with endometriosis, has had a family member affected by endometriosis or has personally had an experience with the disease. It is very common, and that's why we must talk about it.
What is endometriosis and how common is it
Simply put, the lining of the uterus responds hormonally every month to grow a thickened lining, and then you shed that lining during your period — if that same tissue that's normally inside the uterus grows outside the uterus, that is what we call endometriosis.
It is a chronic condition and can lead to a range of symptoms such as pelvic pain, infertility and complications that vary based on where the endometrial lesions land in the body. Understanding the challenges of diagnosing and managing endometriosis is crucial for improving patient outcomes and quality of life.
Endometriosis is incredibly common, affecting about 10% of women of reproductive age, which translates to around 176 million women worldwide. It often begins during the teenage years or early adulthood and can persist until menopause.
Despite its prevalence, many women suffer in silence, unaware that their symptoms may be linked to this condition.
Risk factors and common symptoms
Several factors can increase the risk of developing endometriosis, including:
- Early onset of menstruation (before age 11)
- Short menstrual cycles (less than 27 days)
- Heavy/prolonged periods
- Never having been pregnant
- Low body mass index (BMI)
- Height > 68 inches
- Family history of endometriosis (having a mother or sister with the condition increases your risk seven to tenfold)
On the other hand, factors that may reduce the risk include starting menstruation at a later age, having multiple pregnancies, breastfeeding for longer periods and exercising more than four hours a week.
The most common symptom of endometriosis is pain. Many women with the condition experience severe menstrual cramps, pain during sex, painful bowel movements or pain during urination. This pain can be debilitating, affecting daily activities and overall quality of life.
Additional symptoms may include irregular periods, infertility, fatigue, diarrhea, constipation, bloating and nausea.
It’s important to note that the severity of symptoms doesn’t always correlate with the extent of the disease. A woman with mild endometriosis may experience intense pain, while someone with severe endometriosis might have little to no symptoms at all.
Diagnosis of endometriosis
One of the challenges in diagnosing endometriosis is that its symptoms can mimic other conditions like irritable bowel syndrome (IBS), interstitial cystitis or fibromyalgia. Some patients have no symptoms, while others have mild symptoms they may dismiss as "just bad periods." Many women experience a delay in diagnosis, often suffering for years before receiving the correct diagnosis.
Even when patients bring up concerns to their obstetrician or family doctor, symptoms are sometimes overlooked or passed off as normal menstrual cycles.
Adding to the complexity, the only way to confirm an endometriosis diagnosis is through surgery, which many patients find daunting. There also isn’t a specific lab test for endometriosis.
But based on clinical exams, history and imaging, even without a confirmed diagnosis — when the whole picture is put together — if there's enough suspicion, treatment can begin.
Management options
There is no cure for endometriosis, but several treatments can help manage symptoms and improve quality of life. Treatment options vary depending on the severity of the disease and a woman’s desire to become pregnant.
- Pain management: First-line treatments often involve medical management, to control symptoms and manage pain. Non-steroidal anti-inflammatory drugs (NSAIDs), like Motrin or Advil, are commonly used to reduce the inflammation associated with endometriosis.
- Hormonal therapy: Hormonal medications like birth control pills, hormonal IUDs or gonadotropin-releasing hormone (GnRH) agonists can reduce or eliminate menstruation, preventing the endometrial tissue from bleeding and thus reducing pain and inflammation.
- Surgery: In cases where medication does not provide sufficient relief or when fertility is a concern, surgery may be recommended. Laparoscopic surgery is the gold standard for diagnosing and treating endometriosis, allowing doctors to visually confirm the presence of endometrial lesions and remove as much tissue as possible. However, even with surgery, endometriosis can recur. In some cases, a hysterectomy may be recommended for women who are done having children and continue to suffer from severe symptoms. The decision to remove the ovaries along with the uterus depends on factors such as the patient’s age and the risk of symptom recurrence.
Though endometriosis is chronic and often progressive, not all cases get worse. Some improve with conservative treatment and, in some instances, surgery is unnecessary unless symptoms resist initial treatment or are severe.
Looking to the future
Endometriosis remains a complex condition to diagnose and manage. The condition can have a significant impact on a woman’s physical and emotional well-being. The chronic pain and uncertainty about fertility can lead to stress, anxiety and depression. But ongoing research and advances in medical technology offer hope for improved outcomes in the future.
If you’re experiencing symptoms of endometriosis or if you’ve been diagnosed and need help managing the condition, it’s important to talk to your health care provider. Being informed, proactive and advocating for your health is key to managing endometriosis.
Learn more about women’s health care at Northside and find a provider.
