In May 2014, Lesley decided to find out more about the cutting edge of Endometriosis research and treatment. She obtained a list of Australian doctors, scientists, and educators who attended the 13th World Congress of Endometriosis in Sao Paulo. Several generously shared their experience of the Congress and their knowledge of Endo.
As Syl lay on the couch in agony from her recent surgery, Lesley refilled her hot water bottles and read the abstracts: 400 pages of medical and scientific research, and reports on Endo from all over the world. Several papers were on Dienogest, marketed as Visanne – this drug was getting good reviews overseas and she wondered if it was available in Australia.
She began calling Bayer Pharmaceuticals to ask: is it available, and if not, why not? It took five weeks for them to respond. In the meantime, Sylvia and Lesley travelled to the Endometriosis Clinic in Canberra Hospital and spent a few precious hours with Melissa Parker RN. Melissa mentioned that she knew some gynaecologists who would love to have Dienogast (Visanne) as part of their repertoire of treatments for Endo.
Lesley offered to help – she thought that would be simple and probably take no more than a week. In August 2014, Lesley mounted a petition on Change.org. Syl gathered the courage to describe publicly her experience of life with Endo. Within 6 weeks, we had 74,500 signatures and 19,000 comments.Bayer said YES, and Visanne was released to Australia in March 2015.
Most comments were from people who either suffer from Endo, or are directly related to them. Their heartfelt pleas for help made it very clear there is a need for something more than a drug: there is a need for community support, awareness, and information on this horrible, silent disease. And so we started EndoActive.
EndoActive aims to be an effective advocate at state and national level for women and girls with Endometriosis.
