This is Louise's Story.
I have suffered with heavy periods since they started when I was 13 years old. I remember going on the pill at 14, which led to a cycle of different contraceptives and various side effects. I began to seek medical attention for my symptoms when I was 18 years old - I wasn't aware of endometriosis and was consistently told that 'some women's periods are just painful'. During this time, I was diagnosed with irritable bowel syndrome, anxiety, depression and 'visceral hypersensitivity', I was tested for ulcerative colitis, coeliac disease, diverticulitis, and many more.
In the years before I was diagnosed, I constantly felt that I had to justify my pain and fatigue to friends, family and colleagues. The constant medical investigations always turning out negative was a difficult thing to navigate - my family were happy nothing was found - but I felt very mixed emotions. My 20s were a difficult time in my life and after those negative tests, I believed I was mentally unwell and was even accused by some of ‘wishing’ for a terrible disease. I met my Husband when I was 29 and it was only then that I felt validated and safe to share my symptoms. I had come off of contraceptives and my symptoms worsened, and sex became increasingly painful.
I finally saw a kind GP at the age of 34, who informed me that no, periods are not supposed to be incapacitating. Despite being a Registered Nurse, I had never once thought that what I was experiencing was actually abnormal, and I cried!
I had a diagnostic laparoscopy privately in June 2024 and I was diagnosed with superficial endometriosis. I was so happy that something had been found, however different obstacles appeared. I was referred to an endometriosis specialist who was kind, patient, and caring. He organised an MRI scan which showed that my superficial endometriosis was in fact, deeply infiltrating my pelvic nerves, bowel, vagina and uterosacral ligaments. Unfortunately, this specialist was unable to perform the surgery due to the presence of disease on the nerves, and I was referred elsewhere.
After some setbacks, I finally met the surgeon who would change my life. I had excision surgery to remove endometriosis in October 2025 - was also diagnosed with adenomyosis - and life is improving again.
I accessed Endometriosis UK following my first laparoscopy in 2024. I found the information and support available invaluable, and it has also helped my husband understand the condition much more. So much so, he is now running a marathon in 2026 to raise money for Endometriosis UK!
My message to those with endometriosis, or those who suspect they may have it is that your pain is real, and it matters, and even if you’ve been let down, keep going. Keep speaking up, keep seeking answers and keep advocating for yourself. You deserve to be heard, believed, and supported. You are not alone.
Thank you Louise for sharing your story.
Like Louise, too many experiencing endometriosis symptoms are left waiting for answers for far too long. That's why we're calling on the government to drive down diagnosis times and improve access to care. You can read our suggested roadmap for change in our Diagnosis Survey.
If you are struggling with endometriosis and need support, we are here for you. Click here for support options.
