September 1, 2022

Endo: The invisible problem debilitating women

Endometriosis (or Endo) is a chronic inflammatory disease within the uterus, and due to its placement this painful and debilitating problem often goes unseen and therefore, untreated. However to shine a light on Endo, Endometriosis New Zealand recently sat down with Dr Michael Wynn-Williams to discuss effects this disease is having on New Zealanders.

Dr Michael Wynn-Williams MBChB (Otago) FRANZCOG is a Board Member for Endometriosis New Zealand and is an Auckland based Gynaecologist & Endometriosis Specialist with extensive experience in minimally invasive pelvic surgery. He favours a multidisciplinary approach to managing complex endometriosis and persistent pelvic pain. 

As Aotearoa's national endometriosis organisation, Endometriosis New Zealand is committed to providing up to date, expert, relevant, accurate endometriosis information to the community. 

When does itit usually begin?

Endometriosis is generally considered to affect people in their reproductive years. It can be as early as their first menstrual period, whereas, for others, it could begin to occur much later in life, and the effects sometimes continue beyond menopause.

How many womenwomen are affected by it in New Zealand?

Endometriosis affects an estimated 1 in 10 women, girls and those assigned females at birth. Over 120,000 people are living with endometriosis in New Zealand.

What are thethe symptoms of endometriosis?

The symptoms of endometriosis can include pain with periods, pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, bowel problems, fatigue, and fertility problems. They can impact general physical, mental and social wellbeing. Some people won’t experience any pain or symptoms. About a third of patients with endometriosis may experience difficulty or delay getting pregnant.

How do youyou get a diagnosis?

Traditionally the Gold Standard for diagnosis is histology obtained at laparoscopy.

During Laparoscopic Surgery (key-hole surgery) a long, thin viewing instrument, called a laparoscope, is inserted into the abdomen through a small, surgical incision. This allows your doctor to view tissue or take a tissue sample, called a biopsy.

More recently, we can use ultrasound and MRI to potentially diagnose. About 20% of people with more advanced stages (stage 3-4) of endometriosis may be diagnosed this way. It is essential to realise that negative ultrasound does not rule out endometriosis being present in the pelvis or outside the pelvis.

Diagnosing endometriosis before a laparoscopy, particularly in severe or advanced endometriosis, makes sure the patient is aware of the extent of any surgery that needs to be performed and that an appropriately trained surgeon is performing it.

If you areare diagnosed early, can it make a difference?

Endometriosis is a chronic lifelong condition with no cure. There is a range of therapies, including medical, complimentary, hormonal treatments and surgery, which can help patients live their lives to the fullest. Early diagnosis can help empower those diagnosed with endometriosis to seek care from supportive and experienced practitioners. Unfortunately, the reality is that the diagnosis is significantly delayed. The latest NZ research would suggest a delay of eight-plus years.

What kinds ofof treatments are available?

A multi-disciplinary patient-centred approach is considered best practice treatment. This includes medical, surgical and sound self-management practices.

Complementary therapies such as acupuncture and Chinese herbal remedies can help manage some of their pain symptoms. It is best to work with your general practitioner and endometriosis specialist to consider the best treatment options. 

How does endometriosisendometriosis affect your fertility?

We know that 50% of women who experience infertility may also have endometriosis. About 30% of women who have endometriosis may have issues with their fertility. Endometriosis is a chronic inflammatory condition that can affect the success of natural conception and artificial assisted reproduction. As endometriosis progresses in severity, it can cause adhesions that affect the anatomy of the pelvis.  

Why do onlyonly some women get it?

The cause of endometriosis is not fully understood.

We understand that is multifactorial; endometriosis appears to run in families, so you are more likely to have it if there is a family history. It is important to remember not everyone who has had symptoms will have been diagnosed, but they may have experienced the symptoms.

What's the biggestbiggest misconception about endometriosis?

That pregnancy is a cure for endometriosis”

What should II do if I think I might have endometriosis?

If you feel like you have some of the symptoms, it is essential to talk to your GP, discuss this, and ask for a specialist referral.

Have the confidence to talk to your GP. There is a significant diagnostic delay with endometriosis, so it is important to trust yourself and seek help from your GP. 

What can parentsparents do for their teenager if they have endometriosis?

The teenager should be under the care of a supportive GP or specialist to ensure that they can manage the endometriosis symptoms the best they can and improve their quality of life. Parents should become informed about endometriosis to support and advocate for their teenager.

What does thethe future look like for recently diagnosed endometriosis sufferers?

The New Zealand Government needs to develop an endometriosis action plan in conjunction with the new Women's Health Plan, similar to what was done by the Australian Federal Government in 2017. I would hope that all women will have access to excellent evidence-based endometriosis and pelvic pain care no matter where they live in New Zealand.