Endometriosis often undiagnosed

By KATHERINE HOBY

It took three long years of misdiagnosis and being fobbed off by medical professionals before Deb Bush found out she had endometriosis.

She was told it was "women's troubles", that it was "bad period pain" and even that she had a psychosomatic disorder.

She was finally diagnosed with endometriosis, commonly known by sufferers as "the thorn within", in 1985.

Not long after her diagnosis, Ms Bush met two other endometriosis sufferers and formed the New Zealand Endometriosis Foundation.

"We decided that we didn't want other women to go through what we've been through.

"There needed to be more information, more resources, and more awareness."

Ms Bush says more medical professionals are now awake to endometriosis and what it is, although general awareness of the condition is still not high.

Endometriosis occurs when fragments of endometrial-like tissue (the tissue that lines a woman's uterus) grows outside the uterus. It is usually found in the pelvis.

These displaced fragments still respond during menstruation, and still bleed.

This blood cannot escape and causes the formation of slow-growing cysts, which may grow as large as a grapefruit.

These cysts are responsible for much of the pain associated with endometriosis. Some sufferers may have no symptoms at all, while others have painful periods, pain during sex, irregular periods, extreme tiredness, pain when going to the toilet, or backache.

Anywhere from 10 to 20 per cent of women in New Zealand may have endometriosis. The figure is uncertain because it so often goes undiagnosed.

Ms Bush says while the condition is better recognised now, the average length of time taken to diagnose is "appalling".

Statistics from the United States, Australia and Britain reveal an average delay in diagnosis of seven to 11 years.

Anecdotal evidence from the NZEF suggests diagnostic delay could be as high as 27 years in some cases.

Why? "Endometriosis is poorly understood, poorly diagnosed, and poorly treated," Ms Bush says.

"Many doctors have only a limited understanding of the disease and it often masquerades as other conditions.

"But the pain and possible infertility associated with it are so cruel we should want to know about it."

How endometriosis causes infertility is not known but about 10 to 15 per cent of infertility patients have the condition and about 30 to 40 per cent of those suffering from endometriosis are infertile.

Laparoscopy (examination of the abdominal cavity with a viewing instrument) confirms diagnosis. Treatment depends on factors like age and health of patient and severity of condition. Some cases are mild and require no treatment.

Drugs may be given to prevent menstruation.

In severe cases, surgical removal of cysts may be necessary in addition to drug therapy.

A woman who does not want to have children or who is nearing menopause may consider having a hysterectomy.

The NZEF has set up an education programme for schools.

Ms Bush says it has been working successfully in schools in Canterbury and some parts of Manawatu. It is designed to help young women recognise unusual symptoms during menstruation.

"We don't want to scare them, but we do want to inform them."

The programme is the first of its kind in the world and has received acclaim and overseas interest.

Ms Bush would like to see it in schools throughout New Zealand, but says the foundation lacks the funding for that.

One of the aims of the school programme, and one of the key goals of the NZEF, is to address the internationally recognised and unacceptable average diagnosis time of 7 to 11 years.

Ms Bush says new evidence from the world's largest registry on endometriosis shows that women with the disease and their families have heightened risk of breast cancer, ovarian cancer, and non-Hodgkin's lymphoma.

The risk of the following cancers was greatest in families of women with endometriosis - 9.8 per cent of melanoma (0.01 per cent in the general population), 26.9 per cent of breast cancer (0.1 per cent ), and 8.5 per cent of ovarian cancer (0.4 per cent ).

Ms Bush recently initiated an education programme with Maori women - attempting to knock back another myth about the condition - that only white middle-class women get it.

She says it can be a scary condition but lack of knowledge is even more frightening.

"Let's get it out there and talk about it. It's not just 'women's problems'. It's an issue for all of us."

Facts, myths and help

* It is most prevalent in women aged 25-40.

* It may cause infertility.

* A teenager with painful periods needs to see a doctor if: pain relief or the contraceptive pill does not help, she is having a significant amount of time off school or other symptoms such as pain when urinating, or a family history.

* Myth: "You'll be all right once you've had a baby." Not necessarily.

* Myth: It doesn't affect teenagers. It can do. Girls can get undeveloped endometriosis before they start menstruation.

* 90-95 per cent of women get significant relief from the pain of endometriosis from laproscopic surgery.

* The mean time taken to diagnose is 9.28 years.

* 79 per cent of patients are unable to continue normal work.

* 71 per cent rated their pain as moderate to severe.

* 45 per cent are seen more than five times by a doctor before diagnosis.

* The delay in reaching a specialist averaged 4.65 years.

* A specialist centre for the treatment of endometriosis has just opened at the Ascot Hospital in Remuera. The centre aims to provide a multi-discipline solution to the treatment of the condition. The centre can be contacted on (09) 520-9528.

The NZEF can be contacted at P O Box 1683, Palmerston North, on (06) 359-2613 or 0800 733-277 (support line). email nzendo@xtra.co.nz

The New Zealand Endometriosis Foundation

- Information provided by the Endometriosis Foundation.

nzherald.co.nz/health