“This publication is the first one to specifically address the issues of diagnosing and effectively managing this life-changing disease in New Zealand and I am very proud that we have made it so far,” says Deborah.
“The taskforce was created in 2015, so it has been five years of hard work to get to this point, and our work is not over yet.”
Endometriosis affects up to 1 in 10 women and girls. The most common symptom is pelvic pain, which can be severe. Other symptoms include lower back pain, bowel problems (like IBS), painful intercourse, sub-fertility or infertility, and abnormal menstrual bleeding.
“If we can raise awareness and increase the suspicion of endometriosis, as well as providing GPs and hospital doctors a tangible management plan to enact, we could prevent more evasive treatments later on in life.”
Delayed diagnosis of the condition has been a significant problem for sufferers, with many not receiving the help they need to effectively manage the condition to prevent more long-term and devastating effects such as infertility.
“The major issue we need to overcome is that endometriosis starts young, but it generally isn’t being diagnosed young,” says Deborah. “It was known as the ‘career woman’s disease’, and women were having to deal with severe health issues that could have been avoided or lessened had it been picked up earlier.”
Endometriosis New Zealand began its major educational programme in schools in the late 1990’s to help young people discuss menstrual health and recognise symptoms that strayed from the norm.
This was followed up with Canterbury study published in a 2017 issue of Australian and New Zealand Journal of Obstetrics and Gynaecology, which found that 27% of teenage girls do not attend school every or most months because of debilitating period pain. Follow up data from a tertiary referral centre suggests that 98% of those young patients under 20 presented with suspected endometriosis were diagnosed with the disease.
“Sufferers can experience effects that go far beyond what can be commonly considered just period pain,” says Deborah. “Repeated visits to the doctor without any real resolution impacts significantly on their self-confidence, damages their self-esteem and can affect their friendships, schooling, and mental health.
“It is vital that we educate doctors so they can recognise the symptoms early and intervene in a timely manner with a management plan that can improve and enhance the quality of life for these young women.”
She says doctors need to take a more holistic approach when talking to patients, listen to their story and family history, examine (if appropriate) and investigate further to improve diagnostic rates. At this stage, test results are often unremarkable.
“We are asking them to please, please be suspicious when a young woman presents with complaints of extensive pelvic pain and other likely symptoms such as bowel issues,” says Deborah. “It may be more than just cramps associated with the menstrual cycle.”
Adopting a multi-disciplinary team approach to endometriosis care is recommended and includes engaging allied health professionals – pain teams, pelvic physiotherapy, dietitians, clinical psychologists and well-health coaching. This is particularly the case when patients have developed persistent pelvic pain.
Endometriosis NZ are continuing to raise awareness with the intention of taking the Canterbury educational programme model nationwide, and helping make access to treatment services easier.
“This publication is the first one to specifically address the issues of diagnosing and effectively managing this life-changing disease in New Zealand and I am very proud that we have made it so far”
“We have wonderful doctors, specialists and clinicians in New Zealand, who are recognising the early onset of endometriosis but cannot access the treatment their patient’s need,” says Deborah. “There can be high levels of patient frustration, distress and anger at the lack of treatment equity across the country.”
These issues and the lack of priority and enthusiasm given to endometriosis are driving the next stage of the pathway - implementation of the guidance and the recommendations made.
“If we can raise awareness and increase the suspicion of endometriosis, as well as providing GPs and hospital doctors a tangible management plan to enact, we could prevent more evasive treatments later on in life,” says Deborah. “We know doctors want to help, now the challenge is to provide tools so they can do just that.”