When we talk about women in this book, we refer to our many years of experience working with women with endometriosis plus the series of in-depth interviews we conducted prior to starting writing. We could not hope to replicate even a fraction of all we’ve been told but hope that the main themes are captured. When we refer to ‘clinicians’, we similarly refer to the many clinicians in diverse clinical roles with whom we have worked and those with whom we conducted similar interviews.
Endometriosis is a gynaecological disease – which means it’s related to the female reproductive system – when cells similar (but not the same) as those that line the uterus (womb), grow in other places. These usually grow in the pelvis but on occasion grow elsewhere in the body. These areas of abnormal tissue respond to hormones and are thought to ‘bleed’ on a monthly basis, causing symptoms such as pain and resulting in scarring and inflammation. Endometriosis is not cancer, nor is it an infection. The cause of endometriosis remains unknown.
These growths are commonly referred to as lesions and nodules, and occasionally implants. You may also hear the term endometrioma, which specifically refers to endometriosis in the ovary.
Symptoms of endometriosis vary, however, if you experience any of these it could be endometriosis:
This enigmatic, rather mysterious disease has been subject to various classification systems over the years, none of which are wholly satisfactory.
When we refer to superficial disease, we refer to disease that does not penetrate deeply into the surface of organs. Some classifications refer to this as ‘minimal’ or ‘mild’ disease, or disease stages 1 to 2. It may be in isolated areas or widespread.
When we refer to deep disease, we refer to deeper lesions. Some classifications refer to this as ‘moderate’ or ‘severe’ disease, or disease stage 3 or 4. Again, it may be in isolated areas or widespread. It may involve the ovaries, forming ‘cysts’ or ‘endometriomas’, sometimes referred to as ‘chocolate cysts’ and/or have penetrated organs, such as the bowel or bladder.
It is important to acknowledge upfront that none of these classifications describes in any way either the extent to which a woman experiences symptoms from this condition, or the level of disability. There is absolutely no discrimination. Deep disease can, on occasions, be silent and symptomless; superficial disease can be disabling, and vice versa.