New consumer advisory member –
Deirdre Pinto  

In each edition of eNews we will feature a consumer who lives with chronic pain, their individual journey on how they manage their conditions.

This month we spoke to Deirdre Pinto from Victoria who joined our expanded Consumer Advisory Group late last year.

Deirdre’s journey with chronic pain began at the age of 11 when she began experiencing severe cyclical period pain, which didn’t resolve until her early 50s. It wasn’t until she was 25, after 14 years of experiencing severe pain that she was finally diagnosed with endometriosis.

As a co-founder of Chronic Urinary Tract Infection (UTI) Australia - and having had over three decades of experience as a government program manager, policy advisor and strategic planner – Deirdre is well versed in her understanding and personal experience of chronic bladder and pelvic pain, which unfortunately her daughter also manages.

“Despite the pain I experienced being cyclical, it was quite disruptive, and I was in significant pain for 10 days every month. But at least it wasn’t constant,” said Deirdre.

“One of the most useful things I did to manage my cyclical pain conditions was to map, pace and organise my life according to when I knew I’d be in pain. So, this meant as much as possible with important things, to plan them for the time during the month when I knew I wouldn’t be in pain.”

Deirdre said she got very used to being at her most productive during the first two weeks of her cycle, and then much less so in the second half of her cycle. While the pain from chronic UTIs can be constant and flare ups much less predictable, Deirdre mentioned that members of her organisation Chronic UTI Australia, do notice patterns of triggers which may set off flares of pain, so they utilise similar methods of pain management, including pacing.

When discussing other strategies to manage her pain, Deirdre emphasised how important it was to act immediately at the “slightest indication of pain”, to get on top of it before the pain escalated. She said she uses pain medication combined with surgery, and while she realised surgery was extreme, it was more effective and made her feel better than the medication did.

When asked about what her biggest challenge with chronic pain was, Deirdre said it was getting medical professionals to take her seriously and having them be on board with evidence-based diagnosis and treatment. While endometriosis is now better recognised than it was when she was young, chronic UTI patients are routinely gaslighted by professionals who dismissed their pain – often because inaccurate UTI tests falsely indicate that there is no infection.

“What UTI and endometriosis have in common is that the person’s pain may be minimised, with some health professionals still telling women that pelvic pain and severe pain with periods is normal."

“I got told I had to just suck up the pain, and that there was nothing wrong with me,” said Deirdre, “so it upsets me when I hear that women are still experiencing this.”

Connecting with people with similar experiences is something that Deirdre strongly emphasises the importance of, to help reduce the stigma of chronic pain.

“Support groups and patient organisations are where you can find the most up to date knowledge, fantastic specialist recommendations and the most practical advice for managing the condition. Nothing really compares to getting support from other people who know exactly what it’s like and can empathise with what you are going through,” she said.

If you have your own story about chronic pain that you’d like to share with us, please get in touch via email at admin@painaustralia.org.au