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What do people with pelvic pain need to know?

By Noigroup HQ Pain awareness, Women's health, Pelvic pain 25 Sep 2024

Dr Amelia Mardon’s research focuses on improving the evidence base for management strategies for pelvic pain. The pelvis plays a critical role in functions such as urination, menstruation, sexual health, and reproduction. Societal taboos surrounding topics like menstruation and pelvic health result in a lack of open conversation and understanding of what is normal. Persistent pelvic pain, often linked to conditions such as endometriosis, vulvodynia, and bladder pain syndrome, remains under-researched despite its prevalence. This important research has identified four essential insights that can help individuals manage their pelvic pain. To find out more about the study, you can read the full paper here

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Unfortunately, many people do not know much about their pelvis. Despite the pelvis being home to important organs and bodily functions (such as peeing, pooing, sex, and reproduction), people generally do not know much about what happens down there. Pelvic organs are often thought to be embarrassing, with functions such as menstruation considered dirty and taboo. Because of this, people don’t talk about the pelvis or learn what is considered normal. 

So, what happens when things aren’t quite so normal – like period pain that requires time away from school or work? Or pelvic pain that happens on more days than not? Persistent pelvic pain, defined as pain in the pelvis lasting longer than three months, is associated with various conditions, including endometriosis, vulvodynia, and bladder pain syndrome. Pelvic pain is common, affecting approximately 1 in 4 females and 1 in 12 males.  

People have said that they want to learn more about their pelvic pain. However, there has been little research on what specifically should be taught about pelvic pain

We conducted 20 interviews with people who have pelvic pain to learn about their experiences. We then analysed the interviews to find out what information was most important for them to know about pelvic pain. These were the four key concepts that were identified as most beneficial to learn were: 

A sensitised nervous system leads to overprotective pain

People with pelvic pain reported that understanding how the brain and nervous system contribute to pain, and how the pelvis becomes more sensitive over time, was crucial. This concept validated that their pain was real, not imagined.

  1. A sensitised nervous system leads to overprotective pain
    People with pelvic pain described learning about how the brain and nervous system is involved in pain and that their pelvis becomes more sensitive over time. This concept was important to learn because it validated that their pain was real and not imaginary.
  2. Pain does not have to mean my pelvis is damaged (although sometimes it does)
    This concept was important to know because it reassured people that pain flares did not mean that their pelvis was being damaged. However, participants with endometriosis did say that it was still important to understand that pelvic pain can sometimes be a sign that something is going wrong.
  3. How I think, feel, and see my pain can make it worse
    Participants said it was important to know that many different things can impact pelvic pain because it helped them find different ways to manage their pain. Without this explanation, these strategies would seem counterintuitive or dismissive of their pain.
  4. I can change my pain… slowly
    Learning that pelvic pain can change and improve was important because it provided hope that pelvic pain can get better. While participants did say that it is hard to get their pain to change, knowing that it was a possibility provided motivation to keep going with their pain management strategies. 

These important insights from people who have experienced pelvic pain give researchers and clinicians a foundation to provide high quality pain education. 

– Dr Amelia Mardon
Postdoctoral Researcher in Reproductive Health
NICM Health Research Institute
Western Sydney University
m.mardon@westernsydney.edu.au

Feature image sourced from a paid subscription to Envato Elements.

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