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About Endometriosis

Endometriosis is a chronic, inflammatory, systemic disease characterised by tissue resembling the lining of the uterus (the endometrium) growing in places outside of the uterus1,2.

Endometriosis deposits are most commonly found in the pelvis but can potentially be found almost anywhere in the body with bowel, liver, and even lung involvement reported. Rare cases have even been reported in people assigned male at birth3.  The causes are as of yet unknown with multiple theories proposed. The first widely accepted theory was related to “retrograde menstruation”, with the belief that period blood travelling into the pelvis through the uterine tubes was creating endometriosis deposits. We now know that this cannot explain the disease in a large proportion of patients. More recent theories include errors with tissue development during fetal growth, links to autoimmune diseases, and general inflammatory causes. It is possible that a combination of factors in people with a genetic vulnerability is the cause, with research ongoing.

People with endometriosis can experience a range of symptoms with the most predominant being pelvic pain, but can also include fatigue, gastrointestinal symptoms, and infertility. The severity is often unrelated to the degree of endometriosis, with “severe” endometriosis being discovered while investigating unrelated problems and “minor” endometriosis causing debilitating symptoms.

To date the only definitive diagnosis is surgical, with lesions presumed to be endometriosis removed and sent to a pathologist for microscopic examination. Imaging techniques such as ultrasound and MRI can be very useful in detecting disease and planning surgery, though normal findings do not exclude a diagnosis of endometriosis. While there are many potential treatments ranging from surgical, hormonal, medical, and complementary, their efficacy is limited and varies from individual to individual.

There is no cure for endometriosis but there are treatment options for managing symptoms.

 

  1. Agarwal SK, Chapron C, Giudice LC, Laufer MR, Leyland N, Missmer SA, et al. Clinical diagnosis of endometriosis: a call to action. American journal of obstetrics and gynecology. 2019;220(4):354.e1–354.e12.
  2. Becker CM, Bokor A, Heikinheimo, O, Horne A, Jansen F, Kiesel L, et al. ESHRE guideline: endometriosis. Human Reproduction Open. 2022;2022(2).
  3. Rei C, Williams T & Feloney M. Endometriosis in a man as a rare source of abdominal pain: A case report and review of the literature. Case Reports in Obstetrics and Gynaecology. 2018;2018:2083121.

SYMPTOMS

TREATMENTS

As there is no cure for endometriosis, treatment is aimed at reducing and managing symptoms and includes medications, surgery and complementary treatments.

 

Medications

Medications used to treat endometriosis include hormonal or non-hormonal medications.

Hormonal therapies indicated for the treatment of endometriosis include oral pills, intrauterine devices, depot injections and implants. These medications work to suppress ovulation thus reducing the inflammation and scarring that is associated with periods in the long-term and pain in the short-term. Not all medications are listed on the pharmaceutical benefits scheme meaning greater financial costs for the person taking them. Currently available hormonal therapies include:

  • Dienogest (Visanne, Dinasane)
  • Goserelin (Zoladex 3.6 mg implant)
  • Estradiol, norethisterone acetate, relugolix (Ryeqo)
  • Levonorgestrel (Mirena IUD)
  • Norethisterone (Primolut N)
  • Medroxyprogesterone acetate (Ralovera, Provera, Depo Provera, Depo Ralovera, Cipla medrosypregesterine, Deprocip, Medprocip)
  • Nafarelin (Synrel)

Non-hormonal medications are mostly aimed at pain relief:

  • Paracetamol: for pain relief
  • Non-steroidal anti-inflammatories (NSAIDs) e.g. mefenamic acid (Ponstan), naproxen (Naprogesic), indomethacin (Voltaren), ibuprofen (Nurofen)
  • Break-through strong pain relievers such as codeine, oxycodone
  • Pain modulator medications such as amitriptyline (Endep), duloxetine and gabapentin

 

Surgery

Surgery is performed by Specialist Gynaecologists. The procedure is called a laparoscopy and is performed under general anaesthesia so that you are sleeping. It involves making 3 small incisions (cuts) called ports on the abdomen, the cavity is then filled with gas (carbon dioxide) giving the surgeon room to see, and a camera and tools are then used to remove endometriosis tissue through the small ports. In the past, endometriosis has been ablated (burned off) as opposed to excised (cut out) and research can be conflicting on whether one technique is more superior. Expert advice and anecdotal experience of many with endometriosis have found excision to be more effective at reducing symptoms and recurrence. Some people may have complex disease which may require the skills and experience of an Advanced Laparoscopic Surgeon and others may have disease that has involved their bowels and may require a bowel surgeon to be involved in the surgery.

 

Complementary Treatments

These include services such as physiotherapy, psychology, acupuncture, and complementary medicine.

Pelvic physiotherapy involves a physiotherapist who has undergone a Masters in Pelvic Physiotherapy in addition to their physiotherapy degree. They provide holistic input in managing chronic pelvic pain, tight pelvic floor muscles, pain with sex and urinary and bowel symptoms. The treatments themselves may involve a manual release of pelvic floor muscles, exercises and lifestyle modification advice.

Psychology can be useful for learning to cope with chronic pain in the long-term. This does not take the pain completely away or invalidate the persons experience. The pain is very much real and not “all in the head.” A normal pain process involves detection of signals by nerves which then relay the pain message back to the brain. The brain then determines how much pain is felt. In endometriosis, repeated stimulation of these nerves can scramble this pain signal leading the brain to overreact to them. This is called central sensitisation and may be the reason many people with endometriosis are also diagnosed with chronic pain conditions such as fibromyalgia. Other factors in life can also add to the brain wrongly processing pain signals, this can be stress, lack of exercise, and poor sleep and diet. In particular, people with endometriosis may experience more psychological, financial and relationship stress than those without the condition. Psychologists can work with you to learn how to manage these stressors and develop healthy coping mechanisms to address pain.

Some treatments like acupuncture and complementary medicine may not be well-evidenced in scientific research, however, if a person finds these treatments beneficial and they are not too financially burdensome or potentially harmful, then most experts agree to continue them.  Just make sure to consult your doctor first as interactions can occur.

COMMON MYTHS

MYTH: People with stage 1 disease will only experience mild symptoms

FACT: There is no correlation between the stage of the disease and the severity of symptoms

MYTH: People with endometriosis cannot have children

FACT: People with endometriosis are more likely to have fertility problems

MYTH: Pregnancy cures endometriosis

FACT: Depending on the person, pregnancy can make things better, worse, or can have no effect

MYTH: Endometriosis is diagnosed on ultrasound

FACT: While some scans can be very suggestive, endometriosis can only be definitively diagnosed surgically

MYTH: Endometriosis can just be burned away at surgery

FACT: Excision of endometriosis is generally recommended for surgical management of endometriosis, especially for deeply infiltrative disease, and disease recurrence is often unpredictable

MYTH: Period pain is normal

FACT: Period pain that interferes with your life is not normal and should be investigated

MYTH: Adenomyosis is the same condition

FACT: Adenomyosis is when the lining of the uterus grows deeper into the muscular wall of the uterus

SELECTED RESOURCES