Amie’s Story

Hi, I’m Amie and I have endometriosis, adenomyosis and pelvic dyspareunia. From the age of 11, I experienced crippling periods that were long and heavy in duration and in frequency, often bleeding 3 times a month.  Back in the early. 90’s, research and education surrounding endometriosis was limited. Detection was non existent and the pill (similar to today), seemed to be the most non invasive way to treat it. It was simply ‘a get on with it’ scenario. For over 3 decades, I’ve managed the symptoms to the best of my ability, knowing that for approximately a week out of a month, I would be impacted significantly.  Back then, I would schedule my work around this, ensure that I wasn’t client facing due to the huge fatigue, brain fog and cramping during my bleed. I would be transparent to managers and share my experiences hoping for understanding. However, there was such a huge lack of awareness, especially from female managers who didn’t experience painful periods.

 One of the hardest things for me was the acknowledgment of pelvic dyspareunia, that is pain during intercourse. For me personally, it isn’t simply pain during sex, but the pain and cramping that occurs within the pelvic region and uterine region for days after, that is debilitating and crippling. The lack of education and the lack of resources to help support women is still so limited. Worse still is the lack of empathy surrounding this and that women themselves had to go through great lengths to manage it in a world that creates so much shame around such a condition. Intimacy is such an important aspect of life and human connection, yet even in this day an age, we seem to lack the research around this. 

 With my first pregnancy, I experienced pelvic instability and pubic symphysis which was painful, but the symptoms disappeared as soon as I gave birth.

 With my second pregnancy, I experienced this again which resulted in minute crack fractures within the pelvis, plus two prolapses. The pain was extensive, rehabilitation was long winded and it took me years to recover from the pelvic pain. Around this time, I was seeing a marriage counsellor with my first husband. Despite all my symptoms and experiences, it was implied that I was the one at fault for the demise of our relationship and it was my job to satisfy my husband, even though though I struggled with pelvic instability, pubic symphysis, endo, adeno, prolapses which further contributed to painful experiences of sex. My experiences were dismissed, yet his needs to be satisfied were somehow valid. It made me question, how and why do these narratives still exist? It also made em think, why is women’s health, women’s pleasure a secondary thought?

 Endo and adeno can impact sex and intimacy and I find, even to this day, in 2025, there is little discussion around this point. The stigma attached to this means that women often struggle with this alone and hide in shame, especially with this old verbiage that says its a women’s job to satisfy her man and when she doesn’t, she’s to blame for him straying.

 Whilst I was fortunate enough to have two beautiful kids, I truly believe that the long term experience on pain contributed to the onset of fibromyalgia.  Long term pain has causes immense pressure on my entire body, including my mental, physical  and emotional body. With the changes in my body, the onset of peri-menopause, the symptoms seem to vary and can now occur for up to 2-3 weeks out of a month, with pain from ovulation until post period.

The Dismantling of Labels.

Society’s reactions and labels attached to having an invisible illness or chronic pain disorder are the reasons why we feel like we are broken. We hear over and over again that our body isn’t working, that we are the reason why our mental health is impacted, that we aren’t coping, that our symptoms are worsening, that it is women that is the issue.

 Yet we fail to address that many people have never been given the resources to know how to process and cope with a diagnosis (or numerous ones), what to do with it. We don’t give people the ability to explore all the emotions attached to being diagnosed with a pain condition.

 We are simply diagnosed and then sent away.

Because of this, there are so many people who fundamentally think that they are broken.

 In addition to this, so much of the pain literature is focussed on eliminating pain and whilst this is what we all desire the fact is, many of us who continue to experience pain feel like failures. We feel ashamed that we continue to experience pain. We carry the emotional load within our body and this just perpetuates further cycles of mental and physical pain and anguish. Instead, we also need to be providing people with the skills on how to process their loss and grief, their identity and how they can arrive to a place of peace and acceptance of not only their condition, but themselves.

 I recently published my first book ‘Breaking the Rules of Pain” to break the rules around chronic pain and invisible illness. In sharing my story, I hope to dispel and dismantle some of the stigmas attached to endo, adeno, pelvic pain and chronic pain. It is time to abolish the societal stigmas and narratives aka ‘rules’ that cause women to feel ashamed of their body and their experiences, including the shame around intimacy and sex with conditions such a pelvic pain and endo.

In writing ‘Breaking the Rules of Pain”, I delve into how we as women can take back our power and our medical authority. By this I mean:

•     The current approach of pain management can be limiting and disempowering. Instead of solely relying on practitioners to tell us what to do, how can we innately connect with ourselves and our body to navigate our options and combine this with Western Medicine? This approach focusses on our strengths, our wisdom, our body’s innate capabilities to heal etc

•     How can we explore the body as a whole, as opposed to the experience of one symptom. Western medicine often focusses only on the symptom  and this can be narrow minded and restrictive. When we start to look at the whole body, we can explore the relationship between the mind and the body.

•     How can we take more authority in advocating for ourselves and our body? Instead of solely relying on practitioners to tell us what to do, how can we use our voice and how can we connect with ourselves and our body to navigate our options and combine this with Western Medicine? This approach focusses on our strengths, our wisdom, our body’s innate capabilities to heal etc.

•     When we start to delve into our subconscious, we can start to explore how ones thoughts and beliefs impact govern what we believe about our body.

•     For those with Invisible illness and disability. How can we start to break away from the stigmas and the shame attached to our condition or our diagnosis and more importantly

•     How can we celebrate our uniqueness and learn to love ourselves.

About the Author

Amie Rule is a health and chronic pain coach with an interest in psychotherapy and understanding the impact of trauma on the mind, body, and spirit. After nearly a decade of struggling with chronic pervasive pain, she identified a gap in the market regarding how pain is perceived and approached, writing Breaking the Rules of Pain to address the gaps and challenges people with chronic health and autoimmune conditions face. Amie has a bachelor's degree in psychology, with a focus on loss and grief. When working with clients, she uses a person-centred trauma-informed approach.Amie lives with her husband and two children on the Mornington Peninsula, Victoria.

To purchase Amie’s book, please go to www.amierule.com.au