Periods are bad.

The pain, the PMS, the bleeding… nothing about it is fun.

Well, imagine your worst period, but on steroids. This is what I imagine having endometriosis is like.

March is Endometriosis Awareness Month, a debilitating, incurable chronic illness that affects 1 in 10 people assigned female at birth (and often seems to start in adolescence).

Endometriosis New Zealand CEO, Tanya Cooke, speaks to Billie to explain what exactly endometriosis is.

What is endometriosis?

Endometriosis is a chronic inflammatory disease in which tissue similar to the lining of the uterus (endometrium), is found in places outside of the uterus.  

Endometriosis is commonly found in the pelvic region on the thin pelvic lining called the peritoneum. It may also be found on the pelvic ligaments, ovaries and bowel. Endometriosis is occasionally found in places outside the pelvis such as in scar tissue, the bellybutton or lungs.

When does it usually begin?

Endometriosis is generally considered to effect people in their reproductive years, 

It can occur at different stages throughout individuals lives. For some 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.

Endometriosis seems 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.

How many women are affected by it in New Zealand?

Endometriosis affects an estimated 1 in 10 women, girls and those assigned female at birth. There are over 120,000 people living with endometriosis in New Zealand and an estimated 176 million people worldwide. 

What are the 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, fertility problems and can have an impact on general physical, mental and social wellbeing.  

How do you get a diagnosis? 

A doctor may suspect you have endometriosis based on your medical history and symptoms. A physical examination is often performed and scans, blood tests and other investigations may be recommended. These tests do not diagnose endometriosis but can be useful in determining treatment and next steps.

Endometriosis is diagnosed by viewing the pelvic cavity at laparoscopy (key hole surgery). This is done in hospital under general anaesthetic and is best performed by a gynaecologist with expertise in treating endometriosis.  

Internationally, there is a diagnostic delay of 8+ years from first presentation of symptoms to a doctor with diagnosis.

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

Endometriosis can occur from a person’s first menstrual period. Early intervention is vital to improve quality of life, halt the progression of the disease and ensure fertility is not compromised.

Unfortunately millions of people from generations past and still today may have suffered a whole lifetime but never have had a diagnosis or suitable treatment and the effects sometimes continue beyond the menopause.

Can it be fully cured?

There is no cure for endometriosis, but there are many tools available to help manage the condition.

What kinds of treatments can you receive for it?

A multi-disciplinary holistic approach is considered best practice treatment.  This usually includes medical, surgical and sound self-management practices. This could include; surgery, medication, nutrition changes, supplements, exercise, therapies and other practices. Endometriosis can be well treated and managed. 

In New Zealand, you can access an appointment with a gynaecologist by getting your GP to refer you to the DHB in your area.  If you have private health insurance you can refer yourself to a specialist gynaecologist by directly making an appointment.  However, a letter of referral from your GP is recommended.

Is it only during your period or can you experience endometriosis the rest of the month?

No, pain can occur at any time depending on the individual. The chronic nature of endometriosis and associated symptoms can be difficult to cope with and can affect relationships, work productivity and general wellbeing.

Many people experience pain outside of their menstrual cycle. Pain during sexual intercourse or afterwards can be common. 

How does endometriosis affect your fertility?

Endometriosis can compromise fertility, but many with the condition have no problem conceiving and carrying the baby to full term. 1 in 3 people with endometriosis are likely to experience fertility problems.

Why do only some women get it?

The cause of endometriosis is not fully understood; however, it is now generally considered multi-factorial with a strong genetic link, possibly also how genetics behave with other influences. Thus, there is a higher risk of developing endometriosis if their mother and/or sister (s) are also affected. 

What’s the biggest misconception about endometriosis?

There are many misconceptions and myths surrounding endometriosis. 

Firstly is that endometriosis is just painful periods. Endometriosis can affect individuals in a variety of different ways including pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, bowel problems, fatigue and fertility problems. Endometriosis does not only affect the pelvic region, it can occur anywhere in the body. 

Secondly, that endometriosis is preventable. There is no clearly understood cause for endometriosis, so there is no known way to prevent it. Those suffering with endometriosis can manage their condition, but there is no cure and every individual can be affected by endometriosis in different ways outside of their control. 

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

Talk to your doctor if you think you might have endometriosis. They'll ask you about your symptoms and do a pelvic exam to check for cysts or scars. They may also do an imaging test like an ultrasound or MRI.

Endometriosis New Zealand is Aotearoa’s national endometriosis organisation, representing tens of thousands of women, girls and those assigned female at birth living with endometriosis. We encourage people with endometriosis to talk, share, access best-practice treatment and do what they can to live life to the full despite their disease.

We operate unique services not offered by any other provider in New Zealand. Our services include education, support, advocacy, foster collaborative research and work with stakeholders involved in improving health outcomes for those with endometriosis. 

For more information visit - www.nzendo.org.nz