A lot of you may not, and I don’t blame you, it isn’t really given much exposure. I had friends in the past that suffered, but I never really understood how bad it could be or how common it really is.
According to current statistics, Endo affects one in 10 women and 176 million women worldwide. Crazy, I know!
So why is it that many of us still don’t really know much about it? Why isn’t it something we are discussing more?
The reason why this illness isn’t usually talked about openly comes down to two main factors; Endometriosis can be very hard to diagnose, and, well basically, it involves women and their periods!
I know we’re not living in the 1950’s, but periods are still a bit of a taboo topic for many people, which actually baffles me when half the population will menstruate.
The other problem is, and this will blow your mind as it did mine, the medical industry is still trying to understand the disease. It can take several years for sufferers to be diagnosed, if at all, with many of them going from doctor to doctor just to be misdiagnosed, or even told to “suck it up” with their painful symptoms.
For those who don’t know what Endometriosis is, it’s a disease that only affects women, when the tissue that normally grows inside the uterus (endometrium) grows outside it. Most often this is on the ovaries, fallopian tubes, and tissue around the uterus and ovaries. However, it can also occur in other parts of the body, including the stomach and bowel.
This disease can be crippling to the individual and around one-third of the 176 million women suffering will have difficulties with fertility.
I spoke to a Perth local, Mon, when I first decided to write this article. She was my inspiration behind it, to tell you the truth. Mon is part of a sisterhood in Perth, called Perth Endo Sisters and Endometriosis Perth Sisterhood of Support which has been set up to offer a network of support to sufferers through their private Facebook page.
The members of this group inspire and support one another, with their main goal to raise awareness about the illness. Make sure you join Perth Endo Sisters if you are looking to speak with other battlers.
For sufferers, this disease can affect their entire life. Many have lost jobs because of sick leave and others have had their relationships fail.
Speaking to Mon about her experience with Endo, she said the disease impacts on nearly every aspect of her life.
“The pain is constant. I’m always fatigued and suffer headaches, low immune system and nausea,” she said.
“Endo affects every aspect of my world. What I eat, drink, my job, love life, social life and my mental health.”
All symptoms are different and I have heard Endo referred to as, “the individual’s disease.” Some women are in severe pain and others won’t have any symptoms at all, with the disease attacking their reproductive organs, and therefore their fertility, in silence.
Our hit92.9 Publicist, Sam Kelly, is also an Endo sufferer but again, had completely different symptoms to Mon and therefore, a different journey all together.
“My Endo, whilst still located on my reproductive organs, mainly attacked my stomach. Because of this, my initial symptoms of severe bloating and stomach pain were misdiagnosed as IBS,” she said.
“Luckily, the doctors decided to do a bit more investigating once the Endo changed its target and period related symptoms came along. The tricky bit didn’t end there though because Endo doesn’t always show up on a scan unless there is a cyst, so they had to operate to even know for sure if was there!”
“It was basically, ‘I may wake up fine or I may wake up with a horrible prognosis. Who knows?’ So, I just had to mentally prepare myself for any outcome.”
Whilst researching Endo, I came across a TED talk by Miranda Bond, known as “My Endo Coach,” who has suffered from it since her 20’s. In Endo circles, she is seen as a goddess and has spent years speaking and sharing her knowledge all around the world.
Whilst every sufferer’s journey is different, Miranda has a very interesting story to share in regards to her fertility issues from Endo. If you are facing challenges in this area, it might be worth adding her talk to your research list.
I hope just by sharing their stories and the little information I know on Endo, that we can help raise awareness of this diseases, helping in easier diagnoses and taboo. These women really do need our support!
Next month in Endo March for more info http://www.endomarchaustralia.com.au/
There’s a Facebook group for ladies in Perth with endo – https://www.facebook.com/groups/Perthendosisters/