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Endometriosis is a chronic condition where tissue that is similar to the lining of the uterus grows in places outside of the uterus. Endometriosis is commonly found in the pelvic region on the thin pelvic lining called the peritoneum. It may be also be found on the pelvic ligaments, ovaries and bowel. It is a common condition that affects up to 1 in 10 people in New Zealand.
For people with endometriosis, tissue that is similar to endometrial tissue grows outside of the uterus. For people with regular periods, this endometrial tissues grows inside the uterus and is shed as a period each month when there is no pregnancy. When people with endometriosis have their period, the 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. Without treatment, it will usually persist and worsen over a person’s reproductive years.
Causes of endometriosis
The cause of endometriosis is not fully understood. It is thought there is a strong genetic component, and the disease can run in families. Those who have a first-degree relative (mother or sister) with endometriosis are seven times more likely to develop endometriosis than those who do not have a close relative with the condition.
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). Often this is the most common symptom.
- 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, including very heavy periods
- bladder issues (pain before/with urinating, recurrent urinary tract infections (UTIs), interstitial cystitis).
Diagnosis of endometriosis
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, ultrasound scans, pelvic MRI, blood tests and examine your medical history. These methods are not able to diagnose endometriosis on their own 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 women/people in New Zealand have endometriosis, yet it is still a largely ‘invisible illness’ with significant diagnostic delays.
Causes for the delay include:
- People may think that pain during menstruation and/or sex is “normal.” This can be due to cultural understandings that pain is expected, or that women who complain of pain are overreacting.
- Women are told that symptoms are “normal.” Even after seeking medical help, often people are told by their doctors or GPs that their symptoms are normal, and to simply take pain relief. 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. Many people who finally get an endometriosis diagnosis have had to see several GPs in the process.
- Stigma and embarrassment around discussing periods has meant endometriosis has largely been an ‘invisible’ illness, which people will suffer through silently.
- Hormonal drugs (like the oral contraceptive pill) can provide temporary relief from symptoms, but many women/people still do not have a diagnosis.
If you are experiencing the symptoms of endometriosis you need to see your doctor.
Treatment
Best practice treatment is considered to be a multi-disciplinary, holistic approach, incorporating medical and surgical practices as well as lifestyle changes.
Medical Treatment
Medical treatments cannot cure endometriosis, but they are a good first treatment option and can help support recovery.
- Pain medications can help manage symptoms. Your doctor may recommend you try a combination of different pain relief methods.
- The contraceptive pill can assist in regulating your cycle and managing symptoms. Your doctor will recommend the best contraceptive pill for your condition.
- GnRH (gonadotropin-releasing hormone) analogues 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 eligible for funded health care, although there are often costs associated with the insertion and removal of the device.
- 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 help to 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, acupuncture and meditation. There is less evidence to support whether these therapies are effective but many people find them helpful for managing symptoms.
Endometriosis 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.
Surgical Treatment
Laparoscopic surgery is a keyhole surgery performed under general anesthesia. It is the only way to definitively diagnose endometriosis. The surgeon 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 oophorectomy (removal or one or both of the ovaries) may be considered in the most severe, painful and longstanding cases of endometriosis. It’s important to know that whilst the symptoms of endometriosis are often eliminated or reduced after hysterectomy, this does not “cure” endometriosis and symptoms may persist.
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.
Healthify » reliable and trustworthy information about endometriosis in New Zealand.
Dr Michael Wynn-Williams is a leading surgeon/specialist on endometriosis in New Zealand and has good information about treatments on his website.