Understanding Pelvic Pain and Endometriosis in Transgender, Gender Diverse, and Non-Binary Individuals

‍

Pelvic pain can be a distressing and disruptive experience, significantly impacting daily life, reproductive, and sexual health. It's abroad term that can encompass various sensations, including a dull ache, sharp stabbing pains, pressure, or cramping in the lower abdomen and pelvis. This pain can be constant or intermittent and may worsen with certain activities like menstruation, intercourse, or even exercise. Common symptoms include dysmenorrhea (severely painful menstruation) and dyspareunia (painful intercourse).

One specific and often debilitating cause of pelvic pain is endometriosis. This chronic inflammatory condition is characterised by thepresence of endometrial tissue—tissue similar to the lining of the uterus—growing outside the uterus. This misplaced tissue can cause pain, inflammation, and potentially lead to infertility and organ damage. While endometriosis affects approximately 10% of individuals assigned female at birth (AFAB), it is significantly underreported within transgender, gender diverse, and non-binary (TGDN) people due to specific barriers this population experiences in gaining access to supportive, gender-affirming healthcare.

The Barriers to Endometriosis Diagnosis for TGDN Individuals

One of the biggest hurdles is a lack of awareness among healthcare providers about endometriosis in TGD individuals. Many healthcare systems are designed in a cisnormative frame, leading TGD individuals feeling excluded or uncomfortable seeking care. This often results in delayed diagnoses, with some TGD individuals experiencing a median delay of 12 years.

"Medical gaslighting," where healthcare professionals dismiss symptoms, is also a common and problematic experience. This can lead to inadequate physical, emotional, and mental support, causing many to delay or avoid seeking care altogether. Furthermore, for many TGD individuals, pelvic pain and gynaecological care can exacerbate gender dysphoria, making it even harder to seek necessary medical attention.

Practical Tips for Managing Pelvic Pain in TGDN Communities

• Seek Gender-Affirming Healthcare: Look for healthcare providers who are knowledgeable and affirming of TGD identities. Organisations and community groups often have resources or directories of inclusive providers. Don't be afraid to ask about a provider's experience and understanding of TGD health before your appointment.
• Be Your No.1 Advocate: Advocating for yourself can be tiring but necessary. Be prepared to clearly describe your symptoms, even if you feel dismissed. Keep a pain journal to track when and where your pain occurs, its intensity, and any triggers. This can provide valuable information to your healthcare provider. If possible, use a support person who can also champion you, with the data you’ve collected, to ensure you are taken seriously.    
• Discuss Testosterone Use (if applicable): If you are on testosterone therapy, discuss any new or persistent pelvic pain with your doctor. While some individuals experience symptom relief with testosterone, others may develop new pelvic pain, and the link to endometriosis is still being researched. It's crucial for your healthcare team to consider this in your overall care.
• Explore  Pain Management Strategies: While more research is needed for TGD-specific endometriosis treatments, current pain management options tried by some participants included paracetamol, heat therapy, pelvic floor physiotherapy, and psychological pain management strategies. In some cases, menstrual suppression therapies can be considered.
• Seek Emotional Support: Dealing with chronic pain and healthcare barriers can be emotionally draining. Connect with support groups, therapists, or trusted friends and family who understand your experiences. Addressing the psychosocial impact of endometriosis is crucial for overall well-being.

Ultimately, creating a more supportive and gender-affirming healthcare environment for TGD individuals with endometriosis is essential for improving diagnosis, treatment, and access to care. This includes comprehensive education for healthcare providers and the establishment of gender-inclusiveclinical guidelines.

‍