Queenie’s period pain gets so excruciating her legs shake – but her GP dismissed it as normal

Queenie Main’s period pain gets so extreme that her legs shake, rendering her unable to walk or even stand.

Neither can the 18-year-old find any other position in which her body feels less gripped by agony, in regular episodes of suffering that her mother, Brigid Niall, finds difficult to witness.

Queenie Main with her mother, Brigid Niall.Credit: Jason South

“Often when I get my period, I can’t walk because my legs and lower half are in so much pain; I can’t really move, but lying down, sitting up – any position – doesn’t help,” said Main, who has just completed year 12 and hopes to study nursing.

“Literally nothing will help the pain go away. Often, it gets bad in my lower back as well … [but] I would say I have quite a high pain tolerance.”

When she started getting her period, just before year 9, the pain in the lead-up to Main’s cycles was bad enough to make her vomit. But when Niall took her to the doctor, they were told this was “normal” period pain.

Niall said battling to have her daughter’s pain treated seriously made the ordeal worse. She was put on birth-control pills at 14, and her bleeding would go for 12 days.

“We chose a female doctor at our medical centre, and she just dismissed it outright as, ‘You don’t have endo [endometriosis] because you don’t get endo when you’re menstruating’,” Niall said.

The message Main received was “dismissive ... ‘no you don’t have endo, all women get cramps, it’s normal’.”

The pair participated in a world-first study by the Murdoch Children’s Research Institute looking into the impact of severe period pain on individual adolescents and on their families.

The Missing and Dismissing the Impact of Periods study found parents felt GPs were often inexperienced in providing appropriate pain relief to young people who really needed it, school-based sexuality education failed to give more than anatomical information about menstruation, and enduring stigma made it hard for girls in debilitating pain to receive adequate support.

Dr Courtney Munro said the research team was shocked to hear GPs had told girls and parents that symptoms including pain, nausea, vomiting, diarrhoea and dizziness were normal and that they might need antidepressants.

“The mental health burden [of their symptoms] was significant, but there was that dismissal of, ‘Here, have some Panadeine Forte’, when for period pain, and for a teen, that is really inappropriate therapy. I don’t know that [some] GPs know what to do,” said Munro.

Though the psychological effect of severe period symptoms on young people could be huge, Munro said it was often trivialised.

Parents found it difficult to manage their daughters’ symptoms – “especially when doctors minimised the severity of their young person’s experience, saying the pain was normal when associated with early menstrual cycles” – and were more worried about their child being cut off from their peers and wider life by the menstrual pain than they were about them missing days of school.

Professor Sonia Grover, a paediatric and adolescent gynaecology and pain medicine specialist, said parents with children suffering from severe period pain found it very distressing.

“I had a relatively recent encounter with a father who just could not believe his daughter, who was clearly getting lots of pain, had been told, ‘Oh, she’ll be fine, just take some Panadol’,” she said.

“He attended [her] appointment with me because he was so distressed at seeing how poorly his daughter had been managed.”

Grover said many people did not realise paracetamol painkillers were not good for period pain, and that non-steroidal anti-inflammatory drugs such as Naprogesic and Ponstan were “vastly better”.

“And people don’t know how to use them optimally: they save it for ‘when my pain’s horrible’, and that’s too late.”

Munro said it was hoped the long-term research would help improve understanding of why a disproportionate number of women experienced chronic pain compared with men, what connection there might be between early pelvic pain and longer-term disease such as endometriosis, and how treating adolescent pain might help prevent pain conditions worsening.

Grover said about 20 per cent of girls missed out on school activities because of their periods.

In May, analysis of the federally funded longitudinal study, Growing Up in Australia, by Deakin University researchers found a large proportion of teenage girls experienced period pain that affected their engagement in regular activities, including school attendance.

“Recognising adolescent period pain is important not only for enhancing their immediate quality of life with appropriate support and interventions, but also as part of early screening for chronic health conditions such as endometriosis,” they wrote in the Medical Journal of Australia.

After Brigid Niall and Queenie Main changed clinics, they found a doctor who helped provide effective treatment.

Main hopes research into severe period symptoms continues and that more information about pain management is provided – including spreading awareness that standard painkillers such as paracetamol are not effective for this type of pain – to benefit the next generation of girls.

“If I end up having kids, and I have a daughter who goes through this, I don’t want to be as helpless [as many parents feel now],” she said.

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