A wrap-around approach to managing endometriosis

March is Endometriosis Awareness Month. With a new treatment now available, here’s how pharmacists can help to detect the ‘missed disease’, provide appropriate treatment options and help to close the gender pain gap.

Now that the Therapeutic Good Administration has approved Ryeqo to treat endometriosis, Australian Pharmacist examines how pharmacists can screen for the condition, discuss treatment options and appropriately refer on.

Identifying endometriosis

Endometriosis is a difficult condition to diagnose, said Nicolette Ellis MPS, President of Chronic Pain Australia. 

Nicolette Ellis MPS

‘Many people with endometriosis go undiagnosed for years, with the condition taking an average of 7.5 years to diagnose,’ she said. 

According to Ms Ellis, most pharmacists are aware of the typical signs of endometriosis, including:

  • painful periods lasting for a few days during menses
  • heavy periods
  • pain with bowel movement or urination 
  • pain during sex. 

But no two cases of endometriosis are the same, with the location of pain often varying between individuals. 

‘Some experience lower back or loin pain, and many I have worked with experience rectal pain and proctalgia,’ she said. 

It’s therefore important pharmacists don’t limit questioning to pain during menses. 

‘People with endometriosis experience pain at different times during their cycle, particularly during ovulation,’ she said. 

The gastrointestinal tract is the most common location of extra pelvic endometriosis, with symptoms of constipation or diarrhoea likely to disrupt and aggravate the condition, said Ms Ellis.

‘Unfortunately many people are misdiagnosed with Irritable Bowel Syndrome (IBS) because of the pathology of endometriosis.’

Another key line of inquiry is asking patients how these symptoms impact their daily life.

‘It will tell you a broader story that maybe they are unable to work or go to school for a few days each month, or when experiencing a flare they are incapacitated by pain and stay in bed with a heat pack on,’ she said.

‘All pharmacists should be familiar with the overuse of heat packs to manage pelvic pain.’

What is the government doing about women’s pain and endometriosis?

Chronic pain is reported more in women than in men, with a recent survey of more than 1,750 women in Victoria finding 40% live with chronic pain.

Victoria is conducting a landmark Inquiry into Women’s Pain to address the challenges faced by girls and women seeking care for pain. The PSA is formulating a submission, open to consumers, clinicians, and health service organisations from 30 January to 31 July 2024.

As around one in seven South Australian women will experience endometriosis, the state is conducting an inquiry into how widespread the condition is, the barriers to treatment, and how healthcare professionals and employers can best support women living with endometriosis.

Ensuring women’s pain concerns are heard

According to insights gleaned from Chronic Pain Australia’s National Pain survey over the years, many Australian women feel unfairly labelled as hysterical, emotional, or dismissed when seeking help for their pain, leading to feelings of being gaslit or labelled as drug seekers, said Ms Ellis.

People with endometriosis experience pain at different times during their cycle, particularly during ovulation.’

nicolette ellis MPS 

‘Each person’s pain experience is unique, and it’s crucial to believe and validate their experiences and the impact on their lives,’ she said.

‘Listening attentively and validating their experiences is essential because pain can be an isolating experience.’

Reflective statements such as ‘I understand this must be distressing to not have answers for your ongoing pain’ can go a long way by showing empathy and support. 

Pharmacists also play a vital role in healthcare navigation and can guide individuals towards further support, including:

  • publicly funded general practice pelvic pain clinics
  • GPs with expertise in women’s health
  • allied health professionals, particularly specialised physiotherapists focusing on pelvic pain conditions. 

‘These professionals are readily accessible through a quick Google search, providing essential support and management for individuals dealing with pelvic pain,’ she said.

Populations that are being missed

Stigma has long impeded access to healthcare for both women and members of the LGBTQIA+ community living with chronic pain, with more than half (52.6%) of the respondents in the National Pain Survey 2023 indicating they have felt stigmatised against by healthcare professionals.

But those who are transgender and gender diverse are particularly at risk of underdiagnosis and stigma.

‘A significant proportion of the transgender and gender diverse community who transitioned from male to female also experience pelvic pain,’ said Ms Ellis.

Diagnosis and treatment of endometriosis needs to be more inclusive and individualised, gynaecologist Dr Charlotte Reddington  told the ABC.

‘It can be very challenging for somebody who is transgender or gender diverse accessing care through a gynaecologist, which has traditionally been seen as something for female people to be accessing,’ she said.

‘It brings up a lot of their own identity issues discussing anatomy, and if they’ve had a previous poor experience in a health care setting, they might not feel included.’

What is Ryeqo?

Ryeqo (estradiol and norethisterone) has been available in Australia since 2022, initially approved for treating uterine fibroids. The medicine comprises lower doses of estradiol and norethisterone compared to combined oral contraceptive pills, alongside an active ingredient, relugolix, which inhibits the pituitary gland from releasing luteinizing and follicle-stimulating hormones, said Ms Ellis. 

‘These components collectively regulate oestrogen and progesterone levels in the body, addressing factors contributing to endometriosis pathology,’ she said.

Patients should begin treatment with Ryeqo within the first 5 days of the start of their next period. Initiating the medicine outside of this timeframe could lead to irregular or heavier bleeding.

It’s also important to take Ryeqo consistently at the same time each day and avoid simultaneous use with contraceptive pills, said Ms Ellis. 

‘While it contains norethisterone and can act as a contraceptive, it requires at least one month of treatment to become effective.’

Unfortunately, at this stage, the cost of the medicine is prohibitive. ‘At $135 for one-month’s supply, and unavailability on the Pharmaceutical Benefits Scheme (PBS), pose significant barriers for people with endometriosis,’ she said.

Gedeon Richter Australia has made a submission to the Pharmaceutical Benefits Advisory Committee, with a decision expected on PBS subsidy of the medicine this month.

What are the other treatment options for endometriosis?

While Gedeon Richter has stated that Ryeqo is the first new medicine for endometriosis available in Australia in 13 years, each active ingredient has been accessible since at least 2019.

There are also other treatments that have recently become available, including:

In addressing endometriosis, gynaecologists also often advocate for treatments such as contraceptive pills or intrauterine devices (IUDs) such as Mirena (levonorgestrel IUD) to mitigate excessive uterine lining production, said Ms Ellis. 

‘Undiagnosed endometriosis can lead to secondary issues such as central sensitisation or bowel dysfunction,’ she said. ‘While there’s a lack of studies assessing the efficacy of neuromodulators such as SSRIs or tricyclic antidepressants, they are frequently prescribed to alleviate pain, improve sleep, and enhance mood.’

While managing flare-ups typically involves analgesia,  some individuals require immediate-release opioids for symptom control, she said.

‘Vaginal pessaries containing diazepam are also a viable option for managing severe flares.’

How the endometriosis is diagnosed may also undergo a shift. Just today (27 March) the CHARLI app was launched in collaboration with Endometriosis Australia that uses AI to assist with pre-diagnosis of the condition.

‘We know there are many Australians living with the symptoms of endometriosis undiagnosed for years, especially in rural and remote areas,’ said app co-founder and medical director at Endometriosis Australia, Associate Professor Anusch Yazdani.

‘CHARLI aims to address this by identifying abnormal patterns and prompting women to discuss with their doctor.’ 

Rehabilitation is key

The significance of a pelvic pain physiotherapist to manage endometriosis cannot be overstated, said Ms Ellis.

‘Aberrant muscle tone and sensitisation frequently accompany endometriosis,’ she said. 

‘These specialised physiotherapists possess effective tools and strategies to address this pathology.’

Retraining the nervous system and muscles requires patience, making active self-management essential.

‘Following surgery or while on medications, many people with endometriosis continue to experience ongoing pain without being informed about the crucial role of self-management and necessary rehabilitation which takes regular daily practice,’ she added. 

For more information, refer to PSA’s recent CPD Are unconscious gender biases widening the Australian gender pain gap?