Why are we still so silent on endometriosis?

Today is World Autism Awareness Day. It's a day I probably wouldn't have given a second thought if their awareness campaign didn't include taking a selfie while wearing blue, and I hadn’t just dyed my hair blue yesterday.

Good marketing ploys aside, it’s important that we learn more about this condition that is so little-understood, so that children can grow up to reach their full potential, and we can empathise with those who interact with society in a way that we don’t understand. I honestly don’t really know much about autism, apart from it having an effect on behaviour and learning difficulties, so I decided to look up some facts online.

Roughly 1 in 100 people have autism. 1 in 100.

Endometriosis is five times more common than autism. 1 in 10 women.

So why is it, that when I mention endometriosis, every second person I talk to says “Endo-what?” Why do the people I do mention it to say that I should “just have a hysterectomy”. (Like anyone would ever expect a guy to cut off his testicles to ‘cure’ a non-cancerous disease.) It’s exhausting.

But I can’t help feeling that we are 10 steps behind them with endometriosis awareness. If half of the community doesn’t even know that endometriosis exists, how can they even begin to understand the condition, or have empathy and support for those that suffer from it?

Last month was my three year anniversary of waking up from my anaesthetic to hear my doctor say “You have endometriosis.” At that time, there was one endometriosis network (on Yahoo groups) and no endometriosis charity active in Australia. Things have changed for the better in those three years. Out of a hunger to meet others like us, Katie and I got the ball rolling with the Canberra Endometriosis Network. Then, soon after, Endometriosis Australia was founded. Last year, with the petition for Bayer to release Visanne in Australia, EndoActive was founded, then the Pelvic Pain Foundation of Australia, and most recently KnowEndo in Sydney. There are plans to set up an Adelaide network and many other local networks have popped up around Australia.

I am encouraged by the exponential growth of pelvic pain organisations in Australia. It makes me hope that one day in the near future I won’t have to explain my disease every time it comes up in conversation, and the diagnostic delay will decrease. But we can’t afford to sit on our laurels. There is still misinformation and poor treatment even among those conscious of endometriosis (including GPs and gynecologists). Regularly new women join the Canberra Endometriosis Network facebook group and demand to know why their doctors won’t just rip out their uterus already. They ask how we cope with dealing with the fact that the doctors can’t help us beyond oral contraceptive pills and surgery.

They’re wrong. This is not a hopeless disease. My quality of life is a thousand times better (not an overstatement, just ask my parents) than it was 3 years ago when I was diagnosed. I’ve gone from bedridden and depressed to having the time of my life on the other side of the world. But it’s been a long road from there and it’s far from over. I’m going to live with this disease and its effects for the rest of my life. (Even after menopause I’m expecting to have to manage the scar tissue, nerve damage and pelvic floor dysfunction.)

In the meantime, to stay as healthy as I can I:

• Eat a (mostly) gluten, caffeine, alcohol, soy and processed-food free diet to reduce inflammation and alleviate digestive symptoms
• Take daily drugs to return my over-sensitive nerves to normal functioning
• Take agomelatine daily to deal with the fatigue and mood swings that come with chronic pain
• Take an oral contraceptive pill to try to slow the growth of the endometriosis, reduce the likelihood of further ovarian cysts (endometriomas) forming and to lighten my periods [the research on this is inconclusive though some people can find it helpful]
• Take krill oil daily to reduce inflammation
• Do stretches, use trainers and see a pelvic floor physiotherapist to treat my pelvic floor dysfunction
• Occasional Botox injections into my pelvic floor and sidewall to relax permanently tense muscles
• Make wise decisions about how and where I spend my energy
• Have excisional surgery when all the other treatments aren’t keeping the pain at a manageable level

Increased awareness would mean more funds and more resources. Today, the available treatment options (as detailed above) focus on the symptoms. A substantial research effort would likely result in the discovery of a drug that works on the root cause of endometriosis instead. This could lead to the development of a routine blood test for endometriosis for girls when they have their first period. If this test came back positive, they could take the targeted drug, which would help correct the rogue DNA pathways responsible for the disease. There would be no nasty complications (oversensitive nerves, pelvic floor dysfunction, scar tissue, infertility) from years of chronic pain and inflammation because there would be no endometriosis. I hope that world is our future.

So if you’re new to being diagnosed, you’re coming in at an exciting time. Join all the networks, read all the books, seek out an endometriosis specialist. Use your newfound knowledge to educate those around you. You will need all the support you can get.