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‘Very bad period or pelvic pain is not necessarily normal’

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One in nine women and girls in Australia is affected by endometriosis, a chronic – and often debilitating – inflammatory condition.
 
Yet despite being relatively common, diagnosis can take between seven and 12 years.
 
But there is new hope with the release of the first Australian clinical practice guidelines for the diagnosis and management of endometriosis.
 
Commissioned by the Federal Government as part of the National Action Plan for Endometriosis, the guidelines draw on the latest scientific evidence.
 
Facilitated by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), the work was developed by the multidisciplinary Endometriosis Expert Working Group (EEWG), chaired by RANZCOG Professor Jason Abbott and including GP Professor Danielle Mazza.
 
‘The endometriosis consumer groups have rightly pointed out that there is an unacceptable delay from women seeking care for their symptoms to diagnosis and management being put in place,’ Professor Mazza told newsGP.
 
‘They really wanted that to be addressed, and for there also to be better education for women and girls that very bad period or pelvic pain is not necessarily normal and doesn’t need to be put up with.’
 
Endometriosis involves cells similar to those that line the endometrium growing in other parts of the body, such as the pelvis, and in some cases other tissue and organs, resulting in a range of symptoms from pelvic pain to infertility.
 
The condition accounted for 34,200 hospitalisations in Australia in 2016–17, with 95% of presentations involving at least one procedure.
 
While GPs are often the first port of call for patients, Professor Mazza would ‘hesitate to say’ that women presenting with symptoms of endometriosis are being turned away. She believes, rather, the delay in diagnosis may at least in part be the result of symptoms being addressed without a diagnosis.
 
‘I think the issue for general practice is [that endometriosis] is a bit of a multi-faceted problem because first of all there may be a delay in women and girls … coming forward, presenting with symptoms,’ Professor Mazza said.
 
‘And often GPs may be offering management, like girls commencing on contraception for difficulties with their periods more broadly, and many of the contraceptive products that we utilise can also be utilised as a treatment for endometriosis.
 
‘So it may be that symptoms subside or are treated without a diagnosis ever necessarily having been made, and that’s not problematic – if women are asymptomatic because they’re using hormonal products, then that’s a good thing.
 
‘But it’s when they come off those hormonal products and want to become pregnant that their endometriosis may recur, or there may be scarring from previous endometriosis.’
 
Professor Mazza says the guidelines are a step in the right direction and can assist GPs in becoming more aware of symptoms to look out for, including:

• persistent pelvic pain
• dysmenorrhea affecting daily activities and quality of life
• deep pain during or after intercourse
• period-related or cyclical gastrointestinal symptoms
• period-related or cyclical urinary symptoms
• infertility in association with one or more of the above.

‘One of the very simple things, first up, is how to manage period pain and how to manage heavy bleeding in women,’ Professor Mazza said. ‘We’ve got the tools in general practice to do that and the recommendations in the guidelines in relation to that, there’s no earth-shattering new advances in that sphere.
 
‘The simple measures that we’ve got are non-steroidal anti-inflammatories for pain and the hormonal treatments that we’re all very familiar with in general practice, which are the pill, the Mirena, IUD, Depo [Provera], Implanon – all of those hormonal products that can help to treat the endometriosis.’
 
If a GP suspects a patient may have endometriosis, Professor Mazza suggests asking them to keep a symptom diary, as well as offering abdominal and pelvic examinations, and information about the condition.
 
However, she says it is important to be aware that a normal abdominal or pelvic exam, ultrasound, CT scan or MRI ‘does not exclude the possibility of endometriosis’.
 
‘So keep encouraging the woman to come back if her symptoms are not resolved, and then appropriate referral can take place,’ Professor Mazza said.
 
It was recently revealed in the ABC’s latest Australia Talks National Health Survey that 36% of women, compared to just 16% of men, feel they have had their health concerns dismissed by a GP, including issues such as unexplained pelvic pain.
 
To better understand women’s experiences when it comes to endometriosis specifically, Professor Mazza says further investment into research is needed.
 
‘There needs to be, as with everything, an improvement in the evidence base of general practice and the recommendations that are provided,’ she said.
 
‘But most of the research focus has been on how to treat endometriosis in hospital or specialist settings. So we don’t really have a clear picture of how many women are presenting in general practice, what they’re being offered currently as first line management, if they’re being investigated, and how they’re being investigated – or where referrals are occurring.
 
‘I personally would like to see, if the MRFF [Medical Research Future Fund] would like to do another funding round on endometriosis, there should be a focus on primary care aspects because that’s where women present first.’
 
As well as addressing the detection, diagnosis and treatment of endometriosis, the new clinical practice guideline also includes adenomyosis, a related condition where cells similar to the lining of the uterus present in the muscle wall.
 
To aid the implementation of the guideline, RANZCOG has confirmed that there will be further GP-specific tools developed.
 
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adenomyosis chronic disease endometriosis national guidelines pelvic pain period pain

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