A note from Astrid: There are few communities as passionate, resilient and outspoken as the endometriosis community.
March marks Endometriosis Awareness Month, a time when conversations about the disease become more visible, but not always more accurate. While awareness is important, many patients and advocates feel that the broader discussion still misses the lived reality of people navigating this condition every day.
This piece has been written by endometriosis warrior and advocate Rachel Bishop of Endo Geelong. While the views expressed are Rachel’s own, we recognise they may resonate with many people living with endometriosis across Australia.
We’re grateful to Rachel for sharing her perspective, and for the work she continues to do advocating for patients and amplifying voices within the community.
For many endometriosis patients and advocates, there is a significant feeling of dread every year when March rolls around.
Endometriosis Awareness Month brings with it many complicated feelings. Whilst it is recognised amongst the patient community that there is a dire need for awareness and understanding, there is a distinct lack of accountability and responsibility from many practitioners, the mainstream media, organisations and politicians when it comes to reporting facts and evidence.
March is a prime opportunity for people to jump onto the endo bandwagon, which often perpetuates the cycle of misinformation and leads to further harm within the patient community.
Historically, endometriosis has been conceptualised and documented as being a disease primarily affecting women and those assigned female at birth (AFAB)’s reproductive organs, peritoneum and pelvic region. However, contemporary evidence has fundamentally challenged this narrow view. Overwhelming evidence is showing that endometriosis is not only a full-body inflammatory disease affecting all major organs, systems and tissue, but that endometriosis has also been documented and diagnosed in all genders, in unborn fetuses, and in animals.
Despite this evidence, the representation of endometriosis within the wider community and globally remains in the binary landscape of affecting women/AFAB only, with depictions of uteruses and ovaries plastered across marketing and promotional material. This leads to patients bearing the responsibility of educating not only those that should be leading the open and inclusive discussions, but other patients who have taken what is presented to them as gospel. And why shouldn’t they? We rely on the medical profession and those organisations who claim to act in our best interests to be the pioneers of evidence and yet here we are, fighting the same battles that many advocates and patients have fought before us; the fight to be heard.
If the triggering nature of “endo month” wasn’t enough already, recent events, regarding a disgraced surgeon’s corruption and malpractice, have created additional trauma. Not only for the individuals who have suffered directly as a result of his actions, but for the entire community, with many now questioning the ethics and conflicting interests of major hospitals, practitioners, and organisations.
Additionally, the media and some practitioners are now conflating the issue with the notion that surgery is being over-utilised in endometriosis treatment.
This broader recognition of endometriosis as a systemic disease with multi-organ potential has important implications for clinical diagnosis and management. The management of endometriosis presents significant clinical challenges. While medical therapies can provide symptom control, surgical intervention remains a cornerstone of treatment, particularly for patients with deep infiltrating disease or those refractory to medical management (Singh et al., 2020).
Whilst it is necessary to continue the exploration of disease aetiology, diagnosis and symptom management, consideration must be made to the similarities between the way endometriosis lesions and cancer exist within the human body. In both cases, without surgical intervention via excision surgery, many patients would continue to experience the spread of disease throughout the body and the destruction of major organs, systems, and tissue. Placing wider restrictions on accessibility to expert excision surgery puts patients at risk of serious injury and even death, as shown in extreme cases such as that of fallen endo warrior Jahmby Koikai who passed away at age 38.
The historic and misogynistic view of endometriosis as being a disease affecting a woman’s menstrual cycle has resulted in obstetricians and gynaecologists being the primary care team when addressing endometriosis treatment and symptom management. Whilst these disciplines are essential for those patients experiencing signs and symptoms of endometriosis of the reproductive organs and pelvis, it is no longer appropriate for them to oversee the treatment guidelines, given the prevalence of extrapelvic endometriosis and the presentation of endometriosis in all genders, inclusive of cis-males.
In considering the term endometriosis, it stands that the name ‘endometriosis’ itself is a misnomer, as it directly translates to ‘condition of the endometrium’. Disease names are often precisely descriptive of pathophysiology; polycystic kidney disease, for example, simply creates the image of a kidney with multiple cysts. Similarly, the name ‘endometriosis’ tends to automatically define the disease in terms of the endometrium, which is a misleading simplification, if not completely incorrect. There is conclusive proof that medical misnomers can create unconscious biases in the minds of clinicians, which can impact judgement and create a cycle of misinformation (Fatima O, Shams A. 2025).
This impairment of judgement and cycle of misinformation directly harms patients in several ways, such as:
- Those seeking a diagnosis wait 7-10 years on average to be adequately diagnosed, experiencing dismissal, invalidation, and gaslighting and/or pressured to take hormone-altering medications, which serve only as a Band-Aid for the symptoms and have no bearing on the spread of the disease. Patients are usually unaware of this until these medications are ceased, after which time the condition can become almost unmanageable. Other medications come with a raft of side effects, such as altering bone density, affecting mental health, and other complications or interactions.
- The limitations and guidelines put in place by clinicians restricting endometriosis to a woman’s pelvic region and reproductive organs can seriously hinder a patient’s chance of recovery and a better quality of life. Whilst multidisciplinary modalities such as yoga, pelvic physiotherapy, and meditation can be useful in managing a patient’s symptoms, the issue remains. Unless the lesions are removed by an expert excision specialist, the problem is far from solved.
- The continued misrepresentation of the disease as being solely a “women’s disease” or “period disease” often pits patients against each other, with educated advocates frequently being the targets of abuse and criticism from within the patient community, simply for citing evidence and research that speaks to a more inclusive narrative.
Ultimately, it should not be the responsibility of patients-turned-advocates to consistently educate those within the community, profession, media and industry. We are tired of only being contacted or listened to during periods of high exposure in the press, and tired of the same faces of misinformed poster-children being splayed across our televisions, social media feeds, and newspapers because it is more palatable for the public than the truth.
Despite having access to the same evidence, I am yet to see any of our major “advocacy” organisations or high-profile clinicians speaking out on the existence of endometriosis in all genders, or to the true extent to which the disease impacts on the body as a whole. What I see is a misappropriation of patient donations, redundant studies, self-serving practices or ego, and the inability of those with the time and abundant resources to do their own research for the truth about endometriosis. As a patient who has experienced a 22-year diagnosis delay, still suffers from the disease, and spends their personal time outside of a full-time job fielding questions from distressed patients looking for help; I am exhausted. I am one of many.
We are not your headline, your token gesture or your political tool.
We are suffering.
Rachel shares a number of resources, organisations, and voices that she believes are helping push the conversation around endometriosis forward with authenticity and true advocacy on her Instagram, @pinchiegram.
Resources and organisations
Community based organisations
Further reading
- Endometriosis: From Harm to Hope by Casey Berna, LCSW
