Endometriosis Explained: Causes, Symptoms, and Care

What is Endometriosis?

According to the WHO, endometriosis impacts approximately 10% (190 million) of women and girls of reproductive age worldwide. This condition often leads to severe pelvic pain, heavy menstruation, and fertility issues, significantly affecting the quality of life for those affected.

Endometriosis is a condition where tissue similar to the lining of your uterus, known as the endometrium, starts to grow outside the uterus. This misplaced tissue can be found on various organs within the pelvic area, such as the ovaries, fallopian tubes, and the outer surface of the uterus. In rare cases, it can also spread beyond the pelvic region to areas like the intestines, bladder, or even the diaphragm.

The endometrial-like tissue behaves similarly to the tissue inside the uterus. It thickens, breaks down, and bleeds with each menstrual cycle. However, unlike the tissue that is shed during a menstrual period, this blood has no way to exit the body. This trapped blood can cause irritation, inflammation, and the formation of scar tissue (adhesions). These adhesions can cause organs to stick together, leading to pain and complications.

When endometriosis affects the ovaries, cysts called endometriomas can form. These cysts can be painful and may interfere with the ovaries' function, potentially impacting fertility. 

Symptoms of Endometriosis

Common Symptoms

Endometriosis can present a variety of symptoms, which can range from mild to severe. The most common symptom is pelvic pain, often associated with menstrual periods. This pain can start before the period begins and extend several days into the period. It might also include lower back and abdominal pain.

Other symptoms include:

• Painful periods (dysmenorrhea)
• Pain during intercourse (dyspareunia)
• Pain during bowel movements or urination
• Excessive bleeding (menorrhagia) or spotting between periods
• Infertility
• Fatigue, diarrhea, constipation, bloating, and nausea

These symptoms can significantly impact daily activities and quality of life. For instance, pain during periods or intercourse can disrupt personal and professional life, while chronic fatigue can make even simple tasks feel overwhelming.

If you experience any of endometriosis symptoms, consider using a Symptom Checker tool for initial assessment of your condition. Remember, online tools are not a substitute for professional medical advice, diagnosis, or treatment. Always consult a professional before taking any action.

Causes and Risk Factors

Theories Behind Endometriosis

The exact cause of endometriosis remains unknown, but several theories attempt to explain how the condition develops. The theories were described in the International Journal of Reproductive Medicine:

One widely discussed theory is retrograde menstruation, where menstrual blood flows backward through the fallopian tubes into the pelvic cavity instead of exiting the body. This blood contains endometrial cells, which can attach to the pelvic walls and organs, leading to endometriosis.

Another theory involves transformed peritoneal cells. Peritoneal cells, which line the abdominal cavity, may transform into endometrial-like cells under certain conditions, potentially triggered by hormonal or immune system factors.

Embryonic cell changes suggest that certain cells present from embryonic development transform into endometrial-like tissue later in life. Hormones like estrogen might prompt these cells to change and grow outside the uterus.

Surgical scar complications can also lead to endometriosis. After surgeries like a C-section, endometrial cells might attach to the surgical incision and grow there, causing pain and other symptoms.

Finally, immune system conditions may prevent the body from recognizing and destroying endometrial-like tissue outside the uterus. A compromised immune system could allow this tissue to grow unchecked, leading to the symptoms of endometriosis.

There is evidence suggesting that endometriosis can run in families, indicating a potential genetic link. If you have a close relative with endometriosis, such as a mother, sister, or aunt, your risk of developing the condition may be higher. Researchers are studying specific genes that might make someone more susceptible to developing endometriosis, although no single gene has been identified as the definitive cause.

The largest genetic study to date, involving over 60,000 women with endometriosis, identified 42 genetic regions associated with the condition. These findings highlight the role of specific genes that are involved in pain perception and maintenance. 
 

Hormonal factors play a significant role in the development of endometriosis, primarily because it is a condition that affects women of reproductive age and is rarely seen in postmenopausal women not undergoing hormonal treatment. The growth of ectopic endometrial lesions is believed to be regulated by ovarian steroid hormones, similar to the eutopic endometrium.

Estrogen is a key driver of endometrial proliferation, and ectopic lesions may be more responsive to estrogen, promoting the development of endometriosis.

Risk Factors

Certain factors can increase the risk of developing endometriosis. These include:

• Early menstruation: Starting periods at a younger age.
• Older age at menopause: Going through menopause later in life.
• Short menstrual cycles: Having cycles shorter than 27 days.
• Heavy menstrual periods: Experiencing prolonged periods lasting more than seven days.
• Family history: Having a close relative, like a mother, aunt, or sister, with endometriosis.
• Low body mass index: Being underweight may also be a risk factor.
• Uterine abnormalities: Structural issues with the uterus or fallopian tubes can increase the likelihood of developing endometriosis.

Diagnosis and Tests

Diagnosing endometriosis typically starts with a thorough medical history and a physical examination. During the history-taking process, your healthcare provider will ask about your menstrual cycles, pain levels, and any family history of endometriosis or adenomyosis. This information helps in identifying patterns that might suggest endometriosis or its related condition, adenomyosis. This information helps in identifying patterns that might suggest endometriosis.

As per Yale Medicine, the average diagnosis time can take from 4 to 11 years due to symptom overlap with other conditions.

Pelvic Exam

A pelvic exam is usually the first step in the physical examination. During this exam, the doctor checks for abnormalities such as cysts or scars behind the uterus. However, smaller areas of endometriosis might not be palpable.

Imaging Techniques

Imaging techniques like ultrasound and MRI are valuable tools in diagnosing endometriosis. An ultrasound, which uses sound waves to create images of the reproductive organs, can identify cysts associated with endometriosis but might not detect smaller lesions. An MRI provides more detailed images and can help in mapping the extent of the disease, which is particularly useful before surgery.

Laparoscopy

A laparoscopy is considered the definitive diagnostic tool for endometriosis. This minimally invasive surgical procedure involves making a small incision in the abdomen and inserting a laparoscope (a thin tube with a camera) to visualize the pelvic organs. The surgeon can see the endometrial-like tissue directly and may take a biopsy (a small tissue sample) for further examination. Laparoscopy not only confirms the diagnosis but also allows for the treatment of endometriosis during the same procedure.

Accurate diagnosis of endometriosis is crucial for effective treatment and management. Misdiagnosis or delayed diagnosis can lead to prolonged pain and complications. Many symptoms of endometriosis overlap with other conditions like irritable bowel syndrome (IBS) or pelvic inflammatory disease (PID), making it challenging to identify the condition accurately.

Management and Treatment

There is no cure for endometriosis states NHS, so managing endometriosis effectively involves understanding the triggers and treatments to reduce the frequency and severity of flare-ups.

Medical Treatments

Managing endometriosis often begins with medical treatments aimed at relieving pain and controlling the progression of the disease. Pain management is crucial for improving the quality of life for those affected. Common pain relief methods include non-steroidal anti-inflammatory drugs (NSAIDs) and analgesics, which help reduce inflammation and pain.

Hormonal treatments are also widely used to manage endometriosis. These treatments can regulate or stop menstrual cycles, reducing the growth of endometrial-like tissue. For example, birth control pills can help reduce the severity and frequency of menstrual periods.

It's important to discuss the benefits and potential side effects of these treatments with your healthcare provider, as not all treatments are suitable for everyone, especially those planning to become pregnant.

Surgical Options

Surgery is another option for managing endometriosis, particularly when medical treatments are not effective or if there are significant anatomical issues caused by the disease. The two main surgical options are laparoscopy and hysterectomy.

Laparoscopy is a minimally invasive procedure that allows the surgeon to see and remove endometrial-like tissue through small incisions in the abdomen. This procedure is often used for both diagnosis and treatment. It can relieve pain and improve fertility by removing lesions, cysts, and adhesions.

In more severe cases, a hysterectomy might be recommended. This surgery involves the removal of the uterus and sometimes the ovaries and fallopian tubes. While a hysterectomy can provide significant relief from endometriosis symptoms, it also means that the individual will no longer be able to become pregnant.

Therefore, it is usually considered only when other treatments have failed and the patient does not wish to have children in the future.

Alternative Therapies

In addition to medical and surgical treatments, alternative therapies can play a role in managing endometriosis symptoms. Physical therapy can help alleviate pain by improving pelvic floor function and reducing muscle tension. Acupuncture is another option that some find effective for pain relief.

Lifestyle changes are also important in managing endometriosis. Regular exercise, a balanced diet, and stress management techniques can all contribute to overall well-being and help reduce the severity of symptoms. Dietary changes, such as reducing the intake of inflammatory foods and increasing the consumption of fruits, vegetables, and omega-3 fatty acids, can also be beneficial.

Incorporating endometriosis self-care practices can help manage symptoms and improve quality of life.

Complications and Long-term Impact

Infertility

Endometriosis can significantly impact fertility, with up to 50% of affected women experiencing difficulties conceiving according to Massachusetts General Hospital. 

The condition can cause scarring and blockages in the fallopian tubes, preventing the egg and sperm from meeting. It can also create an inhospitable environment for fertilization and implantation. Despite these challenges, many women with endometriosis can conceive naturally or with fertility treatments like in vitro fertilization (IVF). Early diagnosis and treatment improve fertility outcomes, so discuss any concerns with your healthcare provider.

Cancer Risks

Although the overall cancer risk for women with endometriosis is low, there is a slightly increased risk of specific ovarian cancers, such as endometrioid and clear cell ovarian cancers. Chronic inflammation and hormonal factors may contribute to this increased risk. Regular monitoring and check-ups with your healthcare provider are essential to manage and mitigate this risk. Stay informed and report any unusual symptoms promptly.

Chronic Pain and Management

Chronic pain is a common complication of endometriosis, affecting daily activities and quality of life. Pain can persist even after treatment and include chronic pelvic pain, lower back pain, and pain during intercourse. Managing chronic pain often requires a multidisciplinary approach:

• Medications: NSAIDs, analgesics, and hormonal treatments to reduce pain and inflammation.
• Physical Therapy: Exercises and therapies to improve pelvic floor function and reduce muscle tension.
• Cognitive-Behavioral Therapy (CBT): Techniques to manage pain-related stress and anxiety.
• Alternative Therapies: Yoga, and mindfulness practices to alleviate pain and enhance well-being.

Support and Resources

Having a strong support system is vital for those living with endometriosis. Joining a support group can provide emotional comfort and practical advice from others who understand what you’re going through. These groups can be found locally or online, offering a safe space to share experiences and coping strategies.

“The relationship between endometriosis and mental health is more complicated than we expected”, claims Renato Polimanti, PhD, MSc. Mental health resources are also important.

Living with chronic pain can lead to feelings of frustration, anxiety, and depression. Seeking help from a mental health professional can provide strategies to cope with these feelings and improve overall mental health. Cognitive-behavioral therapy (CBT), for instance, has been shown to be effective in managing chronic pain and associated emotional distress.

“It’s important for the public and health care providers to know there’s a common risk for endometriosis and mood disorders,” states Hugh Taylor, MD, chair and Anita O’Keeffe Young Professor of Obstetrics.