Part of the debate – Senedd Cymru am 6:39 pm ar 29 Mawrth 2023.
Well, much progress has been made, but there's still a hell of a lot to do. Why is it, when 1.5 million people in the UK suffer from endometriosis, we do not know what causes it? So, there's an awful lot of research to be done, by both the expert patients and the clinicians.
Last week, I chaired an online discussion with a panel of experts, including two very experienced consultants—Nahid Gul, a surgeon, and David Rowlands, a gynaecologist—both with a specialist interest in endometriosis, both training in minimal access surgery, including endo surgery. Together, they're building the team required to operate three diagnostic units and a surgical centre for the population served by Betsi Cadwaladr University Health Board. There's another specialist team being developed in Swansea, which is taking the load off Cardiff, which, until now, has been the only secondary and tertiary unit in Wales.
The specialist endo nurses are improving the education of GPs and gynaecologists, so that women no longer have to wait an average eight years to even get diagnosed. For many women, endo dominates their lives and, on the EndoMarch last Sunday, I met Karla Edwards, whose endo severely restricts everyday activities most of us take for granted. But modern telecommunications enable her to be part of the international research team, headed by Dr Nezhat, the most experienced endo surgeon in the world and founder of the worldwide EndoMarch. His endometriosis risk app helps women identify endo faster. And, in Hungary, endo warrior Adrienn Salamon has developed a menstruation app called Lucy, with the gynaecologist Dr Bokor. These apps won't cure endometriosis, but they help women advocate for themselves at medical appointments, where people are being gaslighted.
Most treatments involve hormones or invasive surgery to keep endo at bay. Nobody knows why it has developed, and it doesn't cure them. Interestingly—