Advertising


Feature

How a GP’s questions changed this 15-year-old’s life


Anastasia Tsirtsakis


23/03/2023 4:59:16 PM

Charlotte suffered from debilitating periods. But it wasn’t until her doctor started putting the dots together that everything started to make sense.

Charlotte
Charlotte is among more than 830,000 Australians believed to be living with endometriosis.

Since commencing her menstrual cycles, pain and heavy bleeding every month, sometimes lasting in excess of a week, was the norm for Charlotte. In addition to severe pelvic pain, her periods would also come with debilitating nausea.
 
‘I would … sometimes vomit from the pain if I hadn’t had a painkiller,’ the 15-year-old told newsGP.
 
Despite this, Cathy, Charlotte’s mum, admits that it did not cross either of their minds that there might be something wrong.
 
‘I knew Charlotte had been sick a couple of times from pain, but I checked in with my mother-in-law and she said, “Oh yeah, that used to happen to me sometimes”,’ she told newsGP.
 
But knowing what they know now, Cathy says there was clearly a problem.
 
More than 830,000 Australians live with endometriosis, and Charlotte is one of them.
 
A progressive chronic condition with no known cure, endometriosis occurs when cells similar to those that line the uterus grows in other parts of the body, such as the pelvis and can also be found in the bowel and bladder, and less frequently in muscle, joints, the lungs and even the brain.
 
Symptoms are variable, with some of the most common presentations including abdominal or pelvic pain, heavy periods, irregular bleeding, bloating, fatigue and trouble conceiving.
 
Despite affecting an estimated one in nine people who menstruate, there is often a significant delay in diagnosis from a patient’s first presentation, which can take seven years on average.
 
Reflecting on these statistics, Charlotte is thankful to be among the minority.
 
While she did live with symptoms for four years, it took just under a week to receive her diagnosis – which she largely attributes to her GP, Dr Deborah McWilliam, whose role she says was ‘really crucial’.
 
Charlotte had presented with a concern unrelated to her period pain – or so she thought – but it was Dr McWilliam’s enquiring mind and connecting of the dots that led her to refer the 15-year-old for a pelvic ultrasound. Just three days later, Charlotte was diagnosed with endometriosis.
 
‘So, it wasn’t the periods themselves that we even considered because it was still like, “Oh well, she’s young, there’s variation”,’ Cathy said.
 
‘It wasn’t until Deb started asking Charlotte a few more questions ...’
 
While not all cases of endometriosis can be seen on ultrasound, with laparoscopic surgery still the gold standard for definitively diagnosing the condition, evidence suggests that when conducted by a specialist sonographer, endometriomas and deep disease – where the deposits penetrate further than five millimetres beneath the peritoneum – can be seen with an accuracy of more than 90%.
 
Dr McWilliam told newsGP the reasons for the usual delay in diagnosis are multifactorial, and complicated by the fact that period pain can also be common among those who do not have endometriosis.
 
‘I also think there is a general perception that periods are supposed to be painful and heavy, and women are supposed to just put up with this and carry on, so they may delay seeking help or may feel that their symptoms are dismissed by some healthcare professionals,’ she said.
 
The Melbourne GP said costs of organising investigations, such as private tertiary level ultrasounds, can prove costly and be a barrier for some patients.
 
Researchers from the Murdoch Children’s Research Institute (MCRI) have previously found that there is a lack of awareness among clinicians, who may overlook and misdiagnose the condition as a result.
 
Dr McWilliam says as the first port of call for patients, the role of the GP is ‘imperative’.
 
‘It takes the right doctor to take the time to ask the right questions and to organise appropriate investigation to help make the diagnosis and treat appropriately,’ she said.
 
‘It is paramount that the GP listens to the patient and is not dismissive of their symptoms.’
 
To help get a clearer clinical picture, Dr McWilliam recommends doctors ask a number of questions to make their assessment about next steps:
 

  • Assess the level of period pain and bleeding – does the pain impact on work, study or regular activities?
  • Ask about other pain – do they experience:
  • pain during or after sex?
  • ovulation pain?
  • pain with opening bowels or urination?
  • diarrhoea or nausea with periods?
  • lower back or leg pain?
  • general tiredness?
  • Check for any family history of endometriosis
While Cathy admits that it came as a shock to discover her daughter has endometriosis, she says they are both relieved to have answers.
 
‘That day that we found out, we both cried,’ she said.
 
‘But by the end of the day, Charlotte and I were both like, “Well thank God we know – we can do something about it now” – and thank God that we talk to each other [and] we’ve got a good GP.
 
‘We’re acutely aware that there will be young people who don’t have access to good care or who maybe can’t talk to their parents [and] may go a long time without anybody caring enough to question them.’
 
For Charlotte, the diagnosis has been empowering, and in a short time made a marked difference to both her symptoms and quality of life.
 
‘Since being diagnosed I’ve been able to have access to different medication, which has made a significant difference,’ she said.
 
‘[It] meant that last year, in year nine, I was able to go on the excursion to Cape York with some of my friends. Previously, if I hadn’t been diagnosed, I might have just not put my hand up for that. I would have just thought in a really remote place, if I have my period, then that’s not going to work.
 
‘And even knowing about it, it’s made me think that what I was going through, I didn’t have to be going through that; it’s not considered normal and it’s not something which someone should have to live with.’
 
But one thing Charlotte says she can’t underestimate is the role of her GP.
 
Dr McWilliam says it is all about taking the time with patients, being understanding and supportive, and validating their experience.
 
‘Sadly, I know of patients who have found some other healthcare professionals dismissive of their symptoms,’ she said.
 
‘It is also important to be up to date with current guidelines and services, as well as using trusted radiology and specialist services when required.
 
‘Like many scenarios in general practice – good rapport, instilling hope and providing continuity of care are key to great outcomes.’
 
To help improve the care and management of endometriosis, period and pelvic pain, Charlotte is one of 3000 young Australians taking part in a trial being run by MCRI.
 
Meanwhile, to coincide with Endometriosis Awareness Month, the Federal Government announced the opening of 20 endometriosis and pelvic pain clinics this week.
 
The first of their kind in Australia, the clinics have been set up in existing general practices to provide expert, multidisciplinary services to those living with endometriosis and pelvic pain, with at least one clinic in each state and territory, and a mix of metropolitan and regional locations.
 
Dr McWilliam is cautiously optimistic.
 
‘I welcome the announcement as dedicated clinics are well overdue,’ she said.
 
‘As with many other government announcements though, I will reserve my full evaluation until after these clinics are actually implemented, to see how readily they are staffed and how far the dollar goes.
 
‘I am concerned that several areas miss out on these clinics, but it is a start and hopefully more clinics will follow to improve access.’
 
Log in below to join the conversation.



endometriosis Endometriosis Awareness Month menstruation pelvic pain women’s health


newsGP weekly poll Would you be interested in participating in general practice advocacy?
 
59%
 
22%
 
17%

Advertising


Login to comment

Dr Bethany Reynolds   24/03/2023 11:21:25 AM

I can ask the questions and recognise the symptoms, but can I get my patients access to quality ultrasounds, diagnostic laparoscopies and gynaecology opinion?
Even if they have the money to pay for private many of the gynaes near me have 4-6 month waits at the moment.
I spend a lot of time educating women (and parents of young women) about the role of OCP in management, but there is a lot of information/fear out there that makes many reluctant to use and/or feel as though I'm just 'masking their symptoms'.
I wish medicare adequately reimbursed usfor the time it takes to have these conversations....