Endometriosis is a chronic condition where endometrial tissue, which should only grow in the uterus, is also found in places outside of the uterus. It is a common condition that affects up to 1 in 10 people in New Zealand.

During a regular menstrual cycle, hormones from the ovary trigger endometrial tissue to grow within the uterus. This tissue lines the womb, preparing it for ovulation and potential pregnancy. If no pregnancy occurs in that cycle hormones levels will decrease and the endometrial tissue is shed, causing a period.

In endometriosis, endometrial tissue grows outside of the uterus. When people with endometriosis have their period, endometrial tissue that has grown outside the uterus will also break down and bleed. This can be very painful. When endometriosis is left untreated it can cause scarring, cysts, fertility problems and other complications. Early diagnosis and treatment are important.

Causes

The cause of endometriosis is not fully understood. It is thought there is a strong genetic component, and the disease can run in families.

Symptoms

The most common symptom of endometriosis is pelvic pain, usually during periods (dysmenorrhea). For some people, the symptoms of endometriosis are severe, preventing them from living their normal life. Others may have no symptoms at all, although this is less common.

  • painful periods (dysmenorrhoea)
  • bowel problems (diarrhoea, bloating, constipation, painful wind, painful bowel movements)
  • pain during sex (dyspareunia)
  • infertility (inability to conceive) or sub-fertility (delayed conceiving)
  • fatigue, tiredness, low energy
  • pain in other places, such as the lower back
  • pain at other points in the menstrual cycle (often with ovulation)
  • premenstrual syndrome (PMS)
  • abnormal menstrual bleeding
  • bladder issues (pain before/with urinating, recurrent urinary tract infections (UTIs), interstitial cystitis).

Diagnosis

Endometriosis can be difficult to diagnose as the only way to confirm the diagnosis is through laparoscopy. This is a key hole surgery performed in hospital under general anesthetic.

Doctors may also perform physical examinations, scans, blood tests and examine your medical history. These do not diagnose endometriosis but are useful in ruling out other conditions and determining next steps.

Diagnostic Delays

Endometriosis has a long delay between the presentation of symptoms and diagnosis. Internationally, the average time between the onset of symptoms and a diagnosis is 8+ years. This delay means that many people with endometriosis experience the disease progressing, greatly affecting their quality of life and fertility.

A gendered issue

It is estimated 10% of people in New Zealand have endometriosis, yet is still a largely ‘invisible illness’ with significant diagnostic delays.

  • Stigma and embarrassment around discussing periods has meant endometriosis has largely been an ‘invisible’ illness, which people will suffer through silently
  • People may think pain during menstruation and/or sex is normal due to cultural understandings that pain is expected or that women who complain of pain are overreacting
  • Doctors may delay referral to specialist gynecologists’, misdiagnose symptoms as other diseases (e.g. irritable bowel syndrome, pelvic inflammatory disease), or prescribe hormonal contraception to mask symptoms without further investigation.

If you are experiencing the symptoms of endometriosis you need to see your doctor.

Treatment

Treatment consists of a holistic approach, incorporating medical and surgical practices as well as lifestyle changes.

Surgical Treatment

Laparoscopic surgery is a keyhole surgery performed under general anaesthetia. It is the only way to definitivley diagnose endometriosis. The surgeron will remove any endometriosis found during the surgery.

It’s not uncommon to need a few weeks or months to feel the benefits of laparoscopy. Try to get as much rest as possible and work alongside your doctor to support your recovery.

Hysterectomy (removal of the uterus) and oopherectomy (removal or one or both of the ovaries) may be considered in cases of severe endometrisosis.

Medical Treatment

Medical treatments can not cure endometrisosis, but they are a good first treatment option and can help support recovery.

  • Pain medications can help manage symptoms. Your doctor may reccomend you try a combination of different pain relief methods.
  • The contraceptive pill can assist in regulating your cycle and managing symptoms. Your doctor will reccomend the best contraceptive pill for your condition.
  • GnRH (gonadotropin-releasing hormone) analouges are often prescribed.
  • Intrauterine devices (IUDs) such as the Mirena can help with bleeding and managing symptoms. The Mirena device is now free in New Zealand for people eligble for funded health care.
  • Some people find success with natural remedies like magnesium supplements. If you are trying natural remedies it’s best to seek help from a professional and let your doctor know which supplements you are taking.

Lifestyle Changes

Making changes to your lifestyle can manage endometriosis. Eating a healthy, balanced diet and keeping active can be helpful. Many people find success with a low FODMAP diet, which can be particularly helpful for bowel issues.

You can also try complementary therapies like naturopathy, physiotherapy, massage, accupuncture and meditation. There is less evidence to support whether these therapies are effective but many people find them helpful for managing symptoms.

Endometrisosis is a chronic condition and coping with pain has an effect on mental state. It’s important to nurture your mental health. Be gentle on yourself, practice good sleep hygiene, build a support network and incorporate self care routines.

Useful Links & References

Endometriosis NZ  »  a charitable trust supporting people with endometriosis in New Zealand. They have helpful information on diagnosis, treatment and management. The story archive shares personal stories from people with endometriosis. They also offer support services.

Insight Endometriosis  »  a charitable trust offering education and community support, including coffee groups and seminars.

Health Navigator » reliable and trustworthy information about endometrisosis in New Zealand.