Endometriosis:
A gender-affirming guide
Why a gender-affirming & gender neutral approach?
At Progressive Therapeutic Collective, we believe that everyone deserves access to comprehensive, inclusive, and affirming healthcare information.
Endometriosis is a condition that affects many individuals, yet the traditional narratives and resources often overlook the diverse experiences of trans, non-binary, and gender diverse individuals.
By creating a gender-affirming and gender-neutral page on endometriosis, we aim to bridge this gap, ensuring that all individuals receive the support and understanding they need.
Our commitment to inclusivity means recognising that endometriosis is not confined to cisgender women. Trans men, non-binary individuals, and others assigned female at birth can also experience the pain and complications of endometriosis.
Unfortunately, these individuals often face additional barriers to diagnosis and treatment, including misgendering, stigma, and a lack of tailored resources. Our gender-affirming approach strives to validate these experiences, providing accurate, respectful, and relevant information for everyone affected by this condition.
What is Endometriosis?
Endometriosis occurs when tissue similar to the lining of the uterus (the endometrium) starts to grow outside the uterus, commonly on the ovaries, fallopian tubes, and other pelvic organs - but can also grow in all areas of the human body. It has been located in the lungs, brain and spinal cord.
These growths respond to the menstrual cycle's hormonal changes, leading to inflammation, scarring, and painful adhesions. Symptoms of endometriosis can vary widely but often include chronic pelvic pain, painful periods, pain during intercourse, and fertility issues. For many, these symptoms can be severe enough to disrupt daily life, making simple activities impossible.
Challenges with Diagnosis and Treatment
One of the most significant challenges in managing endometriosis is the difficulty in obtaining an accurate diagnosis. On average, it takes seven to ten years from the onset of symptoms for individuals to receive a definitive diagnosis. This delay is often due to a combination of factors, including the normalisation of menstrual pain, lack of awareness among healthcare providers, and the need for laparoscopic surgery to confirm the presence of endometrial-like tissue.
Misdiagnosis is also common, as symptoms of endometriosis can mimic those of other conditions such as irritable bowel syndrome (IBS) and pelvic inflammatory disease (PID).
Treating endometriosis is equally complex. There is no cure, and treatment focuses on managing symptoms and improving quality of life.
Current approaches include hormonal therapies to reduce or eliminate menstruation, pain management through medications or physical therapy, and surgical interventions to remove endometrial growths.
However, these treatments can have varying degrees of effectiveness, and many individuals may require a combination of therapies. Additionally, trans men and non-binary individuals may face additional barriers to accessing appropriate care due to gender dysphoria and discrimination in medical settings.
Current Approaches and the Path Forward
The management of endometriosis is gradually improving with advancements in medical research and greater awareness. Hormonal treatments, such as birth control pills, GnRH agonists, and progestin therapy, are commonly used to manage symptoms.
Surgical options, such as laparoscopic excision surgery, may provide some relief by removing endometrial lesions.
Pain management strategies, including nonsteroidal anti-inflammatory drugs (NSAIDs) and physical therapy, are also critical components of a comprehensive treatment plan.
To address the needs of all individuals affected by endometriosis, it is essential to adopt a gender-affirming approach. This involves recognizing the unique experiences of trans men, non-binary individuals, and others assigned female at birth, and ensuring they receive respectful, knowledgeable, and inclusive care.
Increasing education and awareness among healthcare providers and the public can help reduce diagnostic delays and improve treatment outcomes. By fostering a more inclusive understanding of endometriosis, we can better support all individuals in their journey toward managing this challenging condition.
Jack, 34
“Living with endometriosis has been really tough for me. For years, I had horrible pain, felt exhausted all the time, and had heavy bleeding. Doctors often didn’t take me seriously because I’m non-binary, and they kept misdiagnosing me.
Eventually, I found some great online support groups where people understood what I was going through. It made a big difference to know I wasn’t alone. Now, I’m determined to raise awareness about endometriosis and push for better, more inclusive healthcare for everyone, no matter their gender identity.”
DIAGNOSIS
Diagnosing endometriosis can be challenging due to its varied symptoms and the overlap with other conditions. The diagnosis is often confirmed through a combination of clinical evaluation, imaging studies, and surgical procedures. Here is the diagnostic criteria for endometriosis:
Clinical Evaluation
Medical History: A detailed medical history focusing on menstrual cycles, pain symptoms, and any family history of endometriosis.
Symptom Assessment: Common symptoms include:
Chronic pelvic pain
Dysmenorrhea (painful periods)
Dyspareunia (pain during intercourse)
Dysuria (painful urination) and other urinary symptoms
Painful bowel movements or other gastrointestinal symptoms
Infertility
Physical Examination
Pelvic Exam: A pelvic exam to check for abnormalities, such as tenderness, nodules, or cysts in the pelvic region. However, a normal pelvic exam does not rule out endometriosis.
Imaging Studies
Ultrasound: Transvaginal or pelvic ultrasound can help identify ovarian cysts (endometriomas) related to endometriosis but may not detect smaller lesions.
MRI: Magnetic Resonance Imaging (MRI) can provide detailed images and help in the mapping of endometrial lesions, especially in complex cases.
Laparoscopy
Laparoscopy: The definitive diagnosis of endometriosis is made through laparoscopy, a minimally invasive surgical procedure. During the procedure:
A small incision is made in the abdomen, and a laparoscope (a thin, lighted tube) is inserted to view the pelvic organs.
The surgeon can directly visualize endometrial lesions, adhesions, and endometriomas.
Biopsy samples of suspected endometrial tissue may be taken for histological confirmation.
Histological Confirmation
Biopsy: Histological examination of tissue samples obtained during laparoscopy can confirm the presence of endometrial-like tissue outside the uterus.
Exclusion of Other Conditions
Differential Diagnosis: It's essential to exclude other conditions that can mimic the symptoms of endometriosis, such as irritable bowel syndrome (IBS), pelvic inflammatory disease (PID), and ovarian cysts.
Diagnosing endometriosis often requires a multidisciplinary approach, involving gynecologists, radiologists, and sometimes pain specialists. Early and accurate diagnosis is crucial for effective management and improving the quality of life for those affected by endometriosis.
Misconceptions of endometriosis
Endometriosis is often shrouded in misconceptions and misunderstandings that can hinder timely diagnosis and effective treatment. One of the most pervasive myths is that severe menstrual pain is normal and something individuals must simply endure. This misconception leads many to dismiss their pain as an unavoidable part of menstruation rather than a sign of a serious medical condition.
As a result, individuals with endometriosis may suffer in silence for years, believing their pain is just an unfortunate but typical aspect of their menstrual cycle.
Another common misunderstanding is that endometriosis only affects cisgender women. This belief excludes trans men, non-binary individuals, and others assigned female at birth who also experience endometriosis.
The lack of inclusive information and support can make it even more challenging for these individuals to seek and receive appropriate medical care. This oversight in the medical community perpetuates the stigma and isolation felt by many who do not fit the traditional patient profile, delaying diagnosis and exacerbating their symptoms.
Additionally, many people incorrectly assume that endometriosis always causes visible abnormalities that can be easily detected through routine pelvic exams or standard ultrasounds.
However, endometriosis lesions can be microscopic or hidden in less accessible areas of the pelvis, making them difficult to detect without specialized imaging or surgical procedures like laparoscopy.
This misconception can lead to frustration and discouragement for individuals whose symptoms are dismissed due to a lack of visible evidence, underscoring the need for comprehensive and thorough diagnostic approaches.
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Pay the Rent & Mutual Aid
The Pay the Rent movement calls for non-Indigenous individuals and businesses to regularly contribute financially to Indigenous organisations as part of reparations and restorative justice. This movement aims to provide tangible support to Indigenous communities, addressing historical and ongoing injustices while fostering a sense of accountability and solidarity.
At Progressive Therapeutic Collective (PTC), we've been paying the rent since our inception four years ago.
Each year, we allocate 1% of our annual profit to The Westerman Jilya Institute for Indigenous Mental Health and another 1% to Decolonise Sex Work Australia, a Blak mutual aid fund for sex workers. As a white-owned business, we believe it’s crucial to acknowledge and address systemic injustices against Indigenous communities. Our commitment to mutual aid is about taking concrete actions to bring aboug meaningful and genuine social change.
