Supporting patients with endometriosis

Suspected of drug-seeking behaviour. Told their excruciating pain is ‘normal’. Waiting years for a diagnosis. These experiences are all too common for women with endometriosis, but pharmacists can be important allies for the hundreds of thousands of ‘endo warriors’ across the country.

When 24-year-old Jane* came into the pharmacy where Sepehr Shafizadeh MPS was working in Mackay, Queensland complaining of intense period pain and bad irritable bowel syndrome (IBS) symptoms, he suspected there was more to the story. 

‘She was asking for Ponstan for period pain,’ Mr Shafizadeh told Australian Pharmacist.

‘I asked about the timing of the pain, and she mentioned that previously it occurred just before menstrual bleeding but now it was happening a few days before as well.’

Mr Shafizadeh ascertained Jane had suffered from IBS ‘for a long time’ and that the symptoms, including painful bloating, were often worse during her period. She was taking 10 mg of Lexapro per day and using Iberogast.

‘She was very distressed and said her IBS wasn’t really under control,’ Mr Shafizadeh said. ‘She said it was really affecting her quality of life and that the antidepressant wasn’t providing any relief.’

Looking at Jane’s history, Mr Shafizadeh could see she had been using NSAIDs regularly and wanted to find out more. He asked if she was happy to speak in the counselling room.

‘I asked if she could explain the pain and how it felt, and whether she had pain passing urine, pain in the belly during intercourse and pain while defecating,’ he said. ‘Her answer to every question was yes.’

Jane also said the Ponstan didn’t seem as effective as it once was.

‘One of the differential diagnoses of endometriosis is IBS,’ he said. ‘So I was thinking she’s not responding to the IBS treatment, and the timing of the pain doesn’t meet the criteria for primary dysmenorrhea – this might not be IBS.’

After their conversation, Mr Shafizadeh wrote Jane a letter to take to her GP outlining what they had discussed. She returned to the pharmacy a few weeks later with a prescription for an oral contraceptive pill and a plan to see a gynaecologist. 

‘The GP had done a pelvic examination and believes she is suffering from endometriosis,’ he said. ‘The GP is referring her to a specialist so they can do an ultrasound and confirm the diagnosis.’

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Periods shouldn’t be this painful

Many women aren’t as fortunate as Jane. In fact, it can take up to 8 years for those living with endometriosis to be diagnosed. 

One reason for this is the misconception that painful periods are ‘normal’, said Endometriosis Australia CEO Alexis Wolfe.

‘I think that’s probably one of the biggest stigmas we have within society and what actually prevents many individuals from seeking treatment,’ Ms Wolfe told AP. 

‘We have been conditioned to think that missing work, social occasions and school due to painful periods is normal, which is absolutely not the case.’

For those who do have a diagnosis of endometriosis, symptoms including pain, cramping, bloating, fatigue and nausea lead many to report a physical quality of life similar to that of cancer patients. 

Master of Pharmacy student Jade White, who is the Western Australia Coordinator for Endometriosis Australia, said women seeking relief for their pain aren’t always taken seriously and can be written off as engaging in drug-seeking behaviour.

If a patient is coming in regularly for NSAIDs or over-the-counter medicine, Ms White said a good first step is to ask if there is a specific type of pain the patient is trying to manage, and whether it is being managed well.

‘Particularly before they’re diagnosed, there’s a common perception that these patients just have a low pain tolerance and that it’s normal,’ she told AP.

‘Especially because it can run in families, if your mother has it but hasn’t been diagnosed, and she’s told you from a young age that [the pain] is normal, because it’s normal for her, it can take a long time to get a diagnosis.’

Ms Wolfe advised asking patients what their pain feels like. 

‘They might say it’s a stabbing pain or feels like barbed wire or like lightning bolts in the stomach,’ she said. ‘These pain responses are not normal.

‘If pharmacists can lend an ear, they may be able to pick up that this person is actually experiencing extreme pain and not only help them with a short-term solution on the day but also encourage them to seek out a GP or a specialist.’

* Name has been changed