In 1981 my sister, Ailsa Irving, who has died aged 82, placed a notice in the personal columns of the Guardian proposing the creation of a self-help group for people with endometriosis, a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. The response to the idea was so positive that Ailsa went ahead and set up the UK Endometriosis Society that same year, and it eventually became the national charity Endometriosis UK.
Ailsa herself had the long-term condition which, among other things, can lead to debilitating pain. Prior to the setting up of the society, sufferers had generally found little support for, or understanding of, endometriosis in the medical profession. In part due to Ailsa’s efforts, that situation has changed dramatically.
She was born on the Ardnamurchan peninsula in Argyll, the daughter of Bobby Irving, a forester, and his wife, Peggy (nee Jardine). Her early years were spent in various locations in Scotland, including the Isle of Arran, where she made friendships that were to last a lifetime. With the early death of our father, the family returned to live in Canonbie, near the English border, where our parents had grown up. After her secondary schooling at Langholm academy, Ailsa moved to Glasgow, where she joined the Inland Revenue in 1959 as a shorthand-typist, relocating to London in 1976 to become personal secretary to one of the chief inspectors of taxes in Brixton.
From her late teens Ailsa suffered from recurring abdominal problems, which went unresolved for many years. Eventually she was diagnosed with endometriosis, and underwent several operations in the 70s and early 80s. Frustrated by the apparent lack of knowledge among the medical profession and the absence of effective treatments for this condition, in 1981 she set about placing her notice in the Guardian.
The Endometriosis Society that grew out of that initiative was to become the major focus of her life over the next 10 years or more, as she had contact with hundreds of women suffering from the condition, made many lasting friendships and helped enormously to raise the profile of a disease that few had previously heard about. Initially running the society more or less singlehandedly, when it became a registered charity in 1982 she was one of the trustees.
Ailsa retired from the Inland Revenue on health grounds at the age of 50 in 1990, and two years later also stepped back from frontline involvement in the society, which in due course became Endometriosis UK. She was justifiably proud of what she had achieved, and earned the deep gratitude of the many women she had helped over the years.
She lived in the same flat in Herne Hill, south-east London, from the time she moved to London in 1976 until she had to go into the Tower Bridge care home in 2021 after a stroke.
She is survived by her niece, Laura, nephew, Andrew, a great-niece and great-nephew, and me.