Endometriosis is a chronic condition where tissue similar to the inner lining of the uterus (endometrium) grows outside the uterus. This tissue can develop on the ovaries, fallopian tubes, the outer surface of the uterus, and other organs. Under the influence of hormonal changes, this tissue continues to menstruate just like the uterine lining, causing inflammation, scar formation, and pain that can range from moderate to very severe.
Severe pain from endometriosis can significantly affect lifestyle and relationships with others. Individuals often find themselves avoiding social events and limiting their activities, which can lead to isolation and a sense of alienation. This physical discomfort can also complicate maintaining relationships with loved ones and friends, as constant pain and emotional difficulties may cause irritation, misunderstanding, or tension in interactions. Individuals may feel that their condition is not taken seriously, exacerbating feelings of loneliness and social isolation. Chronic stress can also lead to depression, persistent sadness, and a loss of interest in activities that once brought joy.
Statistics
To clarify, in this article, when I refer to women, I mean those who were born with a uterus or who had one, that is, people with female anatomy at birth. Endometriosis affects approximately 10% of women of reproductive age worldwide, which equates to around 1 million Canadians.
We will discuss why hysterectomy does not always resolve the issue. On average, it takes women between 7 to 10 years to receive an accurate diagnosis. This delay is often due to symptoms being mistaken for other conditions or underestimated. Many women recall being told that their pain was just a normal part of being a woman, although this is not the case. Such pain is a signal of a serious problem, not a norm.
Endometriosis has a significant impact on society through productivity loss and medical costs. In 2011, the average annual social cost per patient with endometriosis in Canada was $5,200, with productivity and leisure time losses accounting for 78% of these costs, totalling $1.8 billion per year. Subsequent research on this topic has not been conducted.
Core Issues of Endometriosis
- Abnormal Tissue Growth: Endometriosis involves the growth of tissue similar to the endometrium (the lining of the uterus) outside the uterus. This tissue can develop on the ovaries, fallopian tubes, outer surface of the uterus, and other organs. Unlike normal endometrial tissue, which is shed during menstruation, this abnormal tissue continues to respond to hormonal changes, leading to inflammation and scar formation.
- Formation of Adhesions and Scar Tissue: The inflammation caused by the abnormal tissue can lead to the development of adhesions and scar tissue, which can bind organs and tissues together. This can result in pain, disruption of organ function, and difficulties in their operation.
- Chronic Inflammation and Pain: Menstrual blood from the endometrial tissue outside the uterus cannot exit the body, causing chronic inflammation and pain in various areas of the body. This persistent pain can significantly impact daily life and overall well-being.
- Impact on Different Organs and Systems: Endometriosis can affect the uterus, ovaries, fallopian tubes, bladder, intestines, external genitalia, lungs, liver, diaphragm, and in rare cases, other organs.
- Endometriosis of the urinary tract occurs in about 1% of individuals with endometriosis and can cause pain, difficulty urinating, blood in the urine, and recurrent urinary tract infections. Early stages may not present noticeable symptoms, making diagnosis challenging.
Myths and Facts About Endometriosis
- Myth: Retrograde menstruation theory suggests that during menstruation, blood containing endometrial cells flows into the fallopian tubes and abdominal cavity, where cells can implant and start growing.
- Fact: While retrograde menstruation may contribute to endometriosis, not all women with retrograde menstruation develop endometriosis, indicating that other factors are involved.
- Myth: Endometriosis only occurs in women over 30.
- Fact: Endometriosis can occur at any age, including in teenagers. The tissue of the endometrium is found even in newborns upon autopsy; it seems that the problem typically does not manifest until hormonal changes begin.
- Myth: Endometriosis is associated with infertility.
- Fact: Having or not having children is not a key risk factor for endometriosis.
Impact of Endometriosis on Women
- Chronic Pain: Daily pelvic pain and painful menstruation can significantly impact quality of life, physical activity, and psychological well-being.
- Ignoring Symptoms: Women often face misunderstandings of their symptoms, leading to neglect or misinterpretation of their condition. Teenagers may be suspected of seeking attention or skipping events.
- Diagnosis in Teenagers: Cyclical abdominal pain in teenagers can be a sign of endometriosis, and it is important to take this seriously. Endometriosis can manifest once hormonal changes begin.
- Infertility: About 30-50% of women with endometriosis experience infertility issues, creating additional stress and emotional challenges.
- Mental Health: Chronic pain, fertility problems, and lack of understanding from society can lead to depression and anxiety.
- Limitation of Social Activity: Endometriosis symptoms can restrict a woman’s daily life, including social interactions, work, and education.
Possible Causes of Endometriosis
- Environmental Factors and Endocrine Disruptors: Chemicals in the environment can disrupt the endocrine system and lead to an excess of estrogen.4o mini
- Genetic Predisposition: The risk of endometriosis increases among close relatives of the affected individual, indicating a possible genetic predisposition.
- Immune Disorders: Dysfunctions in the immune system may hinder the normal removal of endometrial cells located outside the uterus.
- Retrograde Menstruation: Endometrial cells shed during menstruation may flow back into the fallopian tubes and pelvic cavity, where they begin to grow.
- Endometriosis in Newborns: Evidence of endometriosis in newborns challenges the theory of retrograde menstruation. Symptoms might become apparent only with the onset of hormonal changes, although endometriosis could be present from birth.
- Metaplasia: Endometrial cells may originate from other cell types in the abdominal cavity or other tissues due to various factors.
Risk Factors for Endometriosis
- Family History: Having close relatives with endometriosis can increase the risk.
- Reproductive Organ Anomalies: Congenital anomalies, such as retroverted uterus, can raise the risk.
- Menstrual Characteristics: Early onset of menstruation, short menstrual cycles, and heavy periods may be linked to a higher risk.
- Nulliparity: Women who have not been pregnant may have a greater risk of developing endometriosis.
- Immune Disorders: Problems with the immune system can elevate the risk.
- Endocrine Disorders: High estrogen levels and hormonal imbalances may contribute to the development of endometriosis.
- Environmental Exposure: Exposure to toxins and pollutants could influence risk levels.
- Personal Medical History: Previous surgeries or infections in the pelvic organs may be risk factors.
When to See a Doctor
Women should consult a healthcare provider if they experience:
- Persistent or severe pelvic pain, especially if it is not relieved by painkillers.
- Painful menstruation that interferes with daily activities.
- Pain during sexual intercourse, bowel movements, or urination.
- Difficulty conceiving after 6-12 months of trying.
- Unusually heavy or irregular menstrual periods.
Diagnosis of Endometriosis
Diagnosing endometriosis can be a lengthy process. There is no specific blood test for endometriosis, but several laboratory tests can help exclude other conditions and provide indirect evidence of the disease:
Laboratory Tests:
- CA-125: This marker can be elevated in endometriosis, particularly in more severe cases. However, it is not specific to endometriosis and can also be elevated in other conditions like pelvic inflammatory disease or ovarian cancer.
- Hormonal Tests:
- Estrogen: Elevated levels of estrogen are often associated with endometriosis.
- Progesterone: This hormone may also be measured, often low in endometriosis.
- Anti-Müllerian Hormone (AMH): This test is primarily used to assess fertility and ovarian reserve, which can be informative for women with endometriosis. AMH levels are often reduced in endometriosis.
- Inflammatory Markers:
- C-Reactive Protein (CRP) and Erythrocyte Sedimentation Rate (ESR): These markers can be elevated in the presence of inflammation but are not specific to endometriosis.
- Anemia Tests: Chronic blood loss can lead to anemia, and blood tests may reveal low hemoglobin and iron levels.
Imaging Studies
- Ultrasound: Can detect cysts associated with endometriosis. However, ultrasound may not always accurately identify small or deeply located endometriotic lesions.
- Magnetic Resonance Imaging (MRI): Can help identify deeply infiltrative forms of endometriosis.
Laparoscopy and Biopsy
- This minimally invasive surgical procedure is the “gold standard” for diagnosing endometriosis. A thin instrument is inserted through a small incision in the abdomen to view the pelvic organs and take tissue samples (biopsy) for confirmation.
Why Diagnosis May Be Delayed?
- Non-Specific Symptoms: Endometriosis symptoms can resemble those of other gynecological and non-gynecological conditions, such as irritable bowel syndrome, urinary tract infections, or pelvic inflammatory disease. This makes diagnosis challenging as initial symptoms may be misinterpreted.
- Lack of Awareness: Limited knowledge about endometriosis symptoms among both women and healthcare providers can lead to underestimation of the problem. Many women believe that menstrual pain is normal, and doctors may attribute it to less serious issues.
- Dependence on Invasive Methods: Laparoscopy is the gold standard for diagnosis, but this invasive method may be postponed due to fear of surgery, lack of referral from a doctor, or resource limitations.
How to Avoid Delays in Diagnosis?
- Be Persistent: If symptoms persist or worsen, it is crucial to continue seeking medical help. Severe pain is not normal, and it is important to communicate the seriousness of your condition to your doctor.
- Keep a Symptom Diary: Regularly record the nature, duration, and intensity of your symptoms. Note the frequency and severity of pain on a scale from 0 to 10. This will help your doctor see the full picture of your condition.
- Seek a Second Opinion: If you feel that your doctor is not addressing your concerns or taking necessary actions, do not hesitate to consult another specialist.
- Educate Yourself: Learn as much as possible about endometriosis symptoms and diagnosis. Being prepared for your doctor’s visit and knowing key questions can help you discuss your condition more effectively.
Conclusion
Timely diagnosis of endometriosis can significantly improve quality of life and prevent complications. As endometrial tissue can grow over time and is subject to hormonal changes, it is crucial to pay close attention to your health and consult a physician at the first signs. Be prepared that an accurate diagnosis may require time and additional tests. Persistence in seeking medical help and awareness of symptoms are key to effectively managing this condition.
In the second part of the article, we will discuss the existing treatment methods for endometriosis.
Levy, A. R., Osenenko, K. M., Lozano-Ortega, G., Sambrook, R., Jeddi, M., Bélisle, S., & Reid, R. L. (2011). Economic burden of surgically confirmed endometriosis in Canada. Journal of Obstetrics and Gynaecology Canada, 33(8), 830-837. doi:10.1016/S1701-2163(16)34986-6