With an average delay in diagnosis of 7 years and affecting 10% of the female population, Endometriosis must be one of the most under recognised problems facing Australian women.
Endometriosis is a disease that generally affects women in their reproductive years, it can cause a range of pain symptoms in the pelvis and occasionally can lead to difficulty conceiving. Painful periods are the most common symptoms but often pain during sex, going to the toilet, or between periods occurs as well. Despite knowing about the disease for decades it continues to cause confusion about where it comes from and why. To make it worse, the amount of pain experienced doesn’t tell us how much Endometriosis is there, with some women having a couple of little dots and others having large amounts for the same level of pain.
One of the greatest barriers to improving care for women with Endometriosis is knowledge. For too long now there has been an inability in both the medical and general community to recognise the early symptoms. If we truly are going to identify women with Endometriosis, then we need to start having better conversations about pelvic pain. Start talking to your friends, to your relatives, to other women in social medical support groups. Too many times have I heard stories of young women with horrendously painful periods or pain during sex who were told it was normal and they should battle on. Often a young woman’s pain is dismissed so quickly she will hide it for years. Please start talking about it at home. Although painful periods are common, severe pain which leads to strong pain killers or days off school or work flag a possible problem. If you do decide to see a doctor, don’t allow your pain to be dismissed as “normal”. Instead see someone who will look for answers with you. The right doctor will take a thorough pain history, perform an initial examination, and organise an ultrasound followed by a treatment plan.
Occasionally I am asked to see women who are worried they may have Endometriosis but don’t have any symptoms. Whilst most gynaecologist can understand the concern, we should only be investigating and treating women when there are symptoms of disease. Otherwise we may cause more harm than good. In women who do have symptoms, the first line of therapy should always be non-surgical, which may include changes in diet and exercise, physiotherapy, pain relief, and other medications like the oral contraceptive pill. When these treatments fail, laparoscopic (key-hole) surgery is then recommended to look for and remove disease and should be done by a gynaecologist experienced in Endometriosis.
Occasionally, Endometriosis is not seen at surgery despite the pain or it may return. If this happens your doctor should reassess other possible causes of pelvic pain but another operation is generally not the answer, particularly if less than a year from the first surgery.
Endometriosis can lead to ongoing pain due to over active pain nerves or over active pelvic floor muscles which require medical treatment and physiotherapy. Incomplete removal at surgery may be a cause though and I would recommend seeing a gynaecologist experienced in Endometriosis prior to any operation and always asking for the photos of any surgery at the end. Ongoing pelvic pain can be difficult to manage but your gynaecologist will continue to work with you to provide answers and relief.
Endometriosis Australia (www.endometriosisaustralia.org) is a great resource for more information for those looking for more information.