Weaving A Red Web by Giuliana Serena

“…there are fewer than 100 surgeons in North America who have been identified as doing effective surgery for endometriosis.”

Guest Post by Philippa Bridge-Cook, PhD

Endometriosis has had more press attention in the last several weeks than it has had in years, thanks to Girls writer/producer/actress Lena Dunham’s announcement that she was not going to be doing press for the new season of her hit television show due to her endometriosis symptoms. Whether or not this is a good thing for endometriosis can be debated, since many of the articles that ensued following her announcement have contained a lot of misinformation about the disease, which can perpetuate many of the problems that women with endometriosis face. However, that is a topic for another article, and several excellent articles have already been written discussing the misconceptions currently being circulated by the media.

With all the misinformation circulating, in this article I would like to offer my Top Three Important Facts about Endometriosis that come to mind when I read the articles about Lena Dunham. These facts are important for both patients and for the general public to understand.

1.    Lupron:

There is currently no drug therapy that cures endometriosis. Lupron in particular has significant limitations in its use as a treatment for endometriosis, and it is not recommended as a first-line treatment by any national or international guidelines on the management of endometriosis. Lupron is notorious for having a whole host of side effects, some serious, and some can even persevere permanently after the treatment course is finished. Some women feel that they incurred serious harm from taking this drug. In addition, although it may suppress symptoms during treatment, endometriosis symptoms usually recur after treatment. Lupron is only recommended by the manufacturer for 6 or 12 months over a lifetime, and the long term safety data for greater than 12 months of use are very sparse.

2.    Surgery:

Expert laparoscopic excision surgery is an excellent option that offers many women the best chance at long-term relief from endometriosis symptoms. Excision surgery cuts out all of the endometriosis at its root, and is associated with a much lower recurrence rate than other methods of surgery such as ablation. However, there are fewer than 100 surgeons in North America who have been identified as doing effective surgery for endometriosis. Therefore, it is important for women to seek out the best surgical expertise they can, since effective pain relief depends upon effective surgery.

3.    Adjunct Treatments:

For many women, a multidisciplinary approach is required in order to get full relief from symptoms. Endometriosis is associated with a higher risk of having other diseases that can cause pain and other symptoms in the pelvis, such as adenomyosis, interstitial cystitis, vulvodynia, dyspareunia, inflammatory bowel disease, and pelvic floor dysfunction. These diseases need to be diagnosed and treated by the appropriate medical professionals.

More and more, women are speaking up about their experiences with endometriosis. In many ways this is excellent, as this disease that affects one in ten women has been in the shadows for far too long. However, we all share a responsibility to communicate accurate information about the disease, as there is no other way to move forward and improve the lives of women with endometriosis.

Philippa Bridge-Cook is a scientist and writer currently working as the interim Executive Director of The Endometriosis Network Canada, a non-profit organization whose mission is to provide education, awareness, support, and hope to people affected by endometriosis. Philippa has previously worked in molecular diagnostics at Luminex in Toronto, Canada, and as a consultant for Scientific Insights Consulting Group, in many different areas of medicine including pharmacogenetics, diagnostics, cancer, infectious disease, and endocrinology. Philippa’s academic experience includes a PhD in Medical Genetics and Microbiology from the University of Toronto.