Endometriosis Care for Transgender Communities

In this webinar we hear from Dr Rich Flint who is the Endometriosis Lead at the Chelsea Centre for Gender Surgery, and Jason Barker from Gendered Intelligence. 

This webinar explores culturally competent care for transgender and non-binary people with suspected or diagnosed endometriosis, as well as treatment pathways, the effects of hormonal treatments, and strategies that patients and clinicians can use to reduce dysphoria during medical appointments. 

 

Campaigning for Endometriosis Change: How you can get involved

With endometriosis taking on average nearly 9 years to diagnose in the UK and gynaecology waiting times at an all time high, it's never been more important for Endometriosis UK to use our voice for change. 

There are a number of ways that you, as a supporter of the charity, can engage in our campaigning activities and use your voice to help bring about much needed change for the endometriosis community.

If you're interested in learning more about our policy and campaigning work, and how you can get involved this Action Month and beyond, please come along to our webinar!

Orla's Story

This is Orla's story.

Content note: Orla's story touches on her experience of fertility treatment.

My experience with endometriosis began in my last years of primary school. I noticed symptoms such as heavy bleeding, severe pelvic pain, and associated nausea and vomiting. One of my earliest memories of what I didn’t yet realise was abnormal was collapsing in the school corridor. These episodes occurred like clockwork every month, leading me to make excuses to avoid school out of fear of becoming unwell and feeling embarrassed by my symptoms. At the time, I believed that these symptoms were just a normal part of having a period. I delayed seeking medical help, assuming that all women went through the same pain and distress.

By the age of 15, my school attendance had worsened significantly, and my academic performance suffered as a result. When I finally visited my GP, I was told that my symptoms were a “normal part of womanhood”. I was prescribed a contraceptive pill and an anti-inflammatory painkiller, neither of which proved effective.

At 16, I read a story in a magazine about endometriosis. When I asked my GP about the condition, I was advised to return when I was trying for a baby. Feeling dismissed, I continued to struggle, which took a significant toll on my education, relationships, and general physical and mental health.

At 24, while struggling to conceive, I was referred to a fertility clinic for investigations. Within five minutes of describing my symptoms, the consultant immediately suspected endometriosis and referred me for a diagnostic laparoscopy. During the procedure, I was officially diagnosed with severe endometriosis, and adenomyosis in the most severe stage. I was devastated to learn that earlier intervention could have prevented lasting damage and possibly preserved my fertility.* I felt anger at the years of suffering I had endured, yet I was also relieved to have confirmation that my pain was real and valid.

My experiences with healthcare professionals have been mixed. As a teenager, I often felt dismissed and unheard, which delayed my diagnosis and access to proper care. Now, having an official diagnosis, I find that my concerns are taken more seriously. However, the fact that so many wait years for a diagnosis highlights a critical flaw in how women’s health issues are handled.

Since my diagnosis, I have undergone three surgeries to remove endometriosis and have had several rounds of fertility treatment. Thankfully, one of these treatments resulted in the birth of my daughter. While I am private in many aspects of my life, I am committed to sharing my endometriosis journey to help others feel less alone.

With my daughter, I talk openly about elements of the condition so as not to frighten her, but to make her aware that if she feels that something isn't right, it probably isn't and so she understands I will always encourage her to use her voice, and be her voice when she can't.

My journey has inspired me to use my voice to raise awareness and drive change, particularly in the workplace. Endometriosis is a debilitating condition that affects productivity, attendance, and overall well-being, yet it remains largely misunderstood by many employers.

I am actively working to improve awareness within my company by working with a network towards a Female Health Policy that supports employees with endometriosis and other reproductive health conditions. My goal is to ensure that women experiencing endometriosis feel heard, accommodated, and empowered in their professional lives.

Thank you Orla for sharing your story. Orla highlights the vital need for understanding of menstrual health conditions in the workplace. 

For resources to support employees with endometriosis, click to find out more about our Endometriosis Friendly Employer Scheme or access our Menstrual Health at Work Resources.

*For information on Endometriosis and Fertility, please click here.

Endometriosis Explained

We are pleased to be joined by Joanne Hanley (Endometriosis UK's Specialist Advisor and Advanced Clinical Nurse Practitioner), Zoe Lapwood (Endometriosis Nurse Specialist and Nurse Support Line Advisor), and Elsa Palmer (Endometriosis Nurse Specialist in Endometriosis and Nurse Support Line Advisor). Jo, Zoe and Elsa will be discussing Endometriosis, its symptoms, treatment and management, and how it is diagnosed.
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