Alice

I first went to my GP about severe period pain when I was 14, during the second period I ever had, but it took until I was 26 to get a diagnosis of stage 3 endometriosis that spread from my ovaries to my kidneys. By that point, I had already developed debilitating and disabling chronic pain that affected me every single day. I missed out on lectures, social events, and even had to quit my job due to the pain I was in.

I firmly believe that this could have been avoided if I had been listened to when I spoke to medical professionals about my pain and symptoms. Instead, I was dismissed time and time again, referred to non-specialists and told to "try sit ups" for the pain, and I even faced homophobic rhetoric when I expressed my concerns about my health.

However! I am now almost three years post-excision surgery, and my life has never been better. My experiences made me want to learn more about how I could fight for equal healthcare for all, and that led me to completing a Master's in Public Health which I absolutely loved. My dissertation was written about medical gaslighting and its effects on women's health, and cited Endometriosis UK's fantastic research reports as supporting evidence. I also work in a health and wellbeing department of a national drugs and alcohol recovery charity, using every day as an opportunity to fight health inequalities.

I'm really honoured to now be a volunteer for Endometriosis UK. This is something that is really special to me, and if you would like to chat then I hope to meet you soon in the LGBTQ+ online support group!

Haz

Maxine

Rebecca

I have struggled with endometriosis since the age of 16 and it became increasingly painful and unmanageable over time. I had my first surgery at the age of 31 last year. Endometriosis is such a complex disease with so many layers that can impact all aspects of a person’s life. I have found and continue to find that endometriosis can make my world feel very small at times and it’s often the isolation and feelings around not being believed or understood that make living with the condition even harder.  Being part of the LGBTQ+ community can also add an additional layer of complexity when navigating the health care system and day-to-day life with chronic health issues.

Wanting to create a sense of community with LGBTQ+ people who suffer with endometriosis is what has encouraged me to volunteer and to help create an LGBTQ+ support group. I hope to help create a safe, inclusive community of people who have some shared experiences, where we can just be and know that we’re not going through this alone.