This is Kate’s Story
I first started experiencing painful periods around the age of 14. The pain was so severe that most mornings I would have to crawl to the bath, desperate for any form of relief. I missed school days regularly and often had to carry a hot water bottle with me just to get through the day. I was put on the mini pill, but even then, I still experienced painful withdrawal bleeds. At such a young age, the frequent leaking and unpredictability of my cycle was deeply embarrassing and isolating.
As the years went on, new symptoms appeared - particularly problems with my bowels. Over time, I sought help from different specialists, but my concerns were often dismissed. Across three separate gynaecology appointments, I was told things like “there’s nothing wrong with you,” “is it possible this is all just in your head?” and “it must be IBS.” Each time, I left feeling unheard, disheartened, and still in pain.
Now at 27, my symptoms have escalated to the point where I have been admitted to hospital due to severe pain that even a combination of strong painkillers, and a muscle relaxant could not ease. I have recently undergone laparoscopic surgery where I was informed of “severe stage 4” endometriosis by my surgeon. I was told this has deeply infiltrated my bowel also. I’m now sitting in another waiting list to see if a bowel surgeon can do anything to save my bowel.
Endometriosis has touched every part of my life. Day to day, I live with the uncertainty of when symptoms will strike, sometimes waking in agony or completely drained from fatigue. I’ve had to cancel plans at the last minute, avoid certain foods in case they trigger a flare-up, and adapt almost everything I do around managing pain.
My mental wellbeing has taken a hit from years of being dismissed, and the unpredictability of symptoms can feel isolating, but I’m determined to speak openly, raise awareness, and push for better understanding and care for everyone living with endometriosis.
My journey has been long, frustrating, and at times, incredibly lonely. I came across Endometriosis UK fairly recently and have definitely found some relief in feeling I’m not alone. I hope to share my story in the hope that other people experiencing similar symptoms will feel less alone, and to raise awareness of the urgent need for better understanding, diagnosis, and treatment of endometriosis. No one should have to spend years being dismissed before receiving the care they deserve.
Kate's story highlights the urgent need for change to endometriosis diagnosis and care. Help us gather the information we need to campaign for the change you deserve by completing our Diagnosis Survey today.
