“It could be worse”… “At least it’s not fatal”… “Just have a baby then you’ll be fine”… These are just some of things that as a sufferer of Endometriosis people say to you, and are some of the worst things you could say to me and the other 176 million girls and women who live with this disease.
Why? Well because this disease has no cure, no effective treatment other than surgery, causes debilitating pain, a raft of other symptoms and often, infertility.
Telling sufferers of this disease to be grateful that it’s not something worse is hard to hear and can be just as hurtful as the pain itself. Pain that is unrelenting and can rule your life may not be terminal, but it is a life sentence that you cannot escape.
What is Endometriosis?
In a nutshell, it is the abnormal growth of endometrial cells (normally found inside the uterus) found on locations outside of the uterus that causes pain. It can be found on other organs throughout the pelvis including the bladder, bowel and ovaries. In rare cases it has been found on the lungs, brain and even the hip. It can cause excruciating pain, heavy periods, excessive bleeding throughout menstruation along with unbearable cramping, ovarian cysts, pain during sex and often infertility or trouble falling pregnant. The only true diagnostic test is laparoscopic surgery and effective treatment is the excision or burning off of the endometrial cells. Some hormonal treatments work for a period of time but are not a cure.
Most women have an average delay in diagnosis of 7-10 years. 1 in 10 women has the disease which equates to 176 million girls and women worldwide suffering from it and over 558,000 of those in Australia. I say girls and women because unfortunately there are many young girls in their teens being diagnosed with Endo. I personally know of a 13-year-old who has just had surgery and was riddled with the disease and had been in so much pain she could barely walk. Sadly not even having a hysterectomy cures the disease. Many women who have battled this disease and had surgery after surgery plus managed all the other problems that come hand in hand with Endo (bowel problems, bladder problems, back, hip and leg pain) feel helpless and can develop depression. And honestly, how couldn’t you? With a lifetime of pain and suffering with no hope of a cure or even successful treatment, even the strongest of people reach breaking point eventually.
Working can be very difficult if not near impossible for some sufferers, either because of the amount of time off required when unwell or requiring treatment, the stress or pain of their actual job or a workplace that is unsympathetic. Whilst the impact on Australia’s economy isn’t yet known, figures out of the U.S. in 2012 indicated a cost of $119 billion per annum on their economy.
Despite all of this, one of the silver linings of this disease is the supportive online community of fellow sufferers that’s available now. When I was first diagnosed 16 years ago there was very little in the way of support and I certainly felt alone and overwhelmed. However in recent times, with the emergence of social media and the ability for people to connect from all corners of Australia (and the world) and some passionate and caring people, there are many opportunities to receive support. The key is support from others who understand exactly what you are going through. As much as family and friends try their best to help, having somewhere to go where you can just say you are struggling and have a group of supportive women understand is very therapeutic. It can be as equally beneficial to be able to support others who are struggling when you have the strength to do so.
The strength of women who fight this disease never ceases to amaze me, with women around coming together globally for Endometriosis Awareness month during March. A new campaign in its inaugural year called Million Women March for Endometriosis aims to bring together 1 million people around the world at events run by volunteers. The brainchild of Dr Camran Nezhat in Washington DC has spread to now include 56 countries. In Australia there are 7 events around the country being organised by an amazing group of women who despite having the disease, have poured their time and energy into creating a variety of events for women and their family and friends to attend to show their support and raise awareness.
If you or someone you know suffers from Endometriosis then come along to an event near you and join other women in fighting against this disease.
All events globally are being held on March 13th and in Australia there are events planned in the Gold Coast (two events), Adelaide, Bendigo, Hamilton (VIC), Mornington (VIC) and Perth.
Wear something yellow to show your support and spread the word to help reach the target of 1 million participants worldwide!!
For more information on the campaign and the events go to www.millionwomenmarchaustralia.com or like the Facebook page at www.facebook.com/millionwomenmarchaustralia and join one of the events. If you would like to know more about Endometriosis there are fact sheets and some great information available at www.endometriosisaustralia.org
Teena Hantke has suffered from Endometriosis for over 16 years and had a miracle baby through IVF and egg donation. She works part-time, runs a small online business, runs a Facebook support page and is the Country Affiliate Partner for the Million Women March for Endometriosis and organiser of the Adelaide event.