Endometriosis: Symptoms, diagnosis, and treatment options

What is endometriosis?

Endometriosis is a chronic condition where tissue similar to the inner lining of the uterus (endometrium) grows outside the uterus. This tissue can attach to various parts of the body, including the peritoneum, ovaries, fallopian tubes, and outer surface of the uterus. It may also be found in the bladder, bowel, intestines, vagina, vulva, cervix, rectum, and lungs. 

Like normal endometrial tissue, endometrial-like tissue situated outside the uterus thickens and bleeds during the menstrual cycle. However, unlike normal tissue, it remains trapped inside the body, resulting in pain, inflammation, and scarring.

What causes endometriosis?

While the exact cause of endometriosis is unknown, it’s believed to develop due to factors such as: 

• Retrograde menstruation: Menstrual blood containing endometrial cells flows back into the pelvic cavity, where they implant and grow on pelvic organs instead of being expelled from the body. Though retrograde menstruation is possibly common in many women, only some will subsequently develop endometriosis.
• Genetics: Family history and genetic predisposition play a role; having a close relative with endometriosis increases the likelihood of developing the condition.
• Immune system dysfunction: Some studies suggest that a malfunction in the immune system prevents the body from recognising and destroying the endometrial tissue growing outside the uterus.
• Blood or lymphatic system spread: Endometrial tissue is transported to other parts of the body via these carriers.
• Cell changes: Hormonal or other factors may cause cells in the body to transform into endometrial-like cells.

Who can get endometriosis?

Endometriosis can occur in any female who has menstrual periods. It's most commonly diagnosed in women aged 25-35 years; less frequently in younger females and post-menopausal women. Though extremely rare, endometriosis can also occur in males, with prolonged exposure to oestrogen therapy as one of several risk factors.

Risk factors

While the exact cause of endometriosis remains unknown, a person’s risk of developing the condition may increase due to their:

• family history: Having a grandmother, mother, sister, or aunt with endometriosis
• early menstruation: Starting periods before age 11
• late menopause 
• short menstrual cycles (less than 27 days between periods)
• heavy and prolonged periods: Bleeding that lasts more than 7 or 8 days
• never having given birth
• low body mass index (BMI) 
• reproductive tract abnormalities and other conditions that block menstrual flow. 

Endometriosis signs and symptoms

Endometriosis can cause a wide range of symptoms. The most common are pelvic pain and cramping, which may worsen before or during your menstrual period. Other signs and symptoms might include:

• Pain with urination or bowel movements
• Bowel problems, such as bloating, diarrhoea, or constipation
• Pain during or after sex
• Sub-fertility or infertility
• Tiredness and low energy (lethargy)
• Abnormal menstrual bleeding, such as heavy bleeding or bleeding between periods.

Some may not have symptoms and only discover they have endometriosis when they can’t get pregnant or experience other medical concerns.

The severity of symptoms does not reflect the extent of the endometriosis. Individuals with mild endometriosis may experience severe pain, while those at a more severe stage may have less painful symptoms.

How is endometriosis diagnosed?

Diagnosing endometriosis can be difficult as the symptoms often overlap with other conditions. The only sure way to diagnose it is through laparoscopy (keyhole surgery). 

You will undergo tests before this procedure to rule out other conditions and help with surgical planning. These tests can include:

• Physical exam (pelvic exam) 
• Ultrasound to help detect endometrial cysts and other signs of the condition
• Magnetic resonance imaging (MRI) to check for endometrial growths on organs and tissues within the pelvis.

Delays in diagnosis

Endometriosis can be a tough condition to manage, both physically and emotionally. For many sufferers, the symptoms can impact their daily life, work, and relationships. 

Among the challenges for those living with endometriosis is the delay in diagnosis, which averages more than 9 years, according to Endometriosis New Zealand. Delays in diagnosis can be due to normalising and dismissing symptoms, lack of knowledge about endometriosis, and time lags in government-funded healthcare. Some patients struggle to even get on the waitlist to see a specialist.

These delays contribute to prolonged suffering, as undiagnosed and untreated endometriosis can worsen over time, leading to increased pain and more severe complications. 

For those who are seeking quicker access to tests and treatment, having the best health insurance can make a significant difference. Comprehensive health insurance can help cover private hospital expenses and costly surgeries, enabling patients to receive treatment sooner.

Endometriosis treatment options

There are various treatment options available for managing endometriosis, although none provide a permanent cure. Treatment approaches typically depend on the extent of the condition, severity of the symptoms, the woman's age, overall health, and her desire for fertility preservation. 

Treatments can range from medication to surgical options, and a combination of these may be used to control symptoms and improve quality of life.

Medications

• Pain relief: Non-steroidal anti-inflammatory drugs (NSAIDs), like ibuprofen, can help alleviate pain
• Hormonal treatments: These help control endometriosis growth. Hormonal treatments may include: 
  • Combined oral contraceptives, which help regulate hormones and reduce bleeding
  • Progestogens, which lower oestrogen and suppress ovulation.

Endometriosis surgery

The following surgical procedures are used to help manage endometriosis:

• Laparoscopy: A minimally invasive procedure where a tiny camera is inserted through a small incision in your abdomen, allowing your surgeon to see the pelvic organs and take biopsies for testing. Your surgeon will also remove endometriotic lesions and adhesions
• Laparotomy: A more invasive surgery involving a larger incision in the abdomen to remove endometrial tissue; typically reserved for severe cases
• Hysterectomy: Removal of the uterus, sometimes including the ovaries, is usually considered in severe cases, and if the patient doesn't want to preserve fertility 
• Oophorectomy: Removal of one or both ovaries, with or without hysterectomy, which may be necessary if endometriosis has spread to the ovaries.

While endometriosis surgery is available in the public health system, some patients are opting for private surgery to get faster access to care. Depending on the type of procedure, endometriosis surgery can cost from $11,000 to $50,000. If you have health insurance that covers private hospital treatments, ask your insurer if your policy can pay for a portion or all of the costs.

RECOMMENDED READINGS

Health cover for those with pre-existing conditions

Cost of private surgery in NZ

Long waiting lists in NZ's public health system: Causes and impacts on patients

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