“All women get period cramps, you need to just take an ibuprofen and deal with it”. Sound familiar? If you have endometriosis, then it probably does.
According to Endometriosis Australia, it is the most aggressive benign and debilitating disease facing Australian women today.
So it should come as a surprise that the average delay for a diagnosis takes seven to ten years.
In my case, it took nine.
I can remember my first period like it was yesterday. The pain was so horrific that I spent three days keeled over the toilet, vomiting profusely.
It felt like someone was holding me upside down and pouring lava straight into my hoo-ha, while Wolverine clawed at my insides. I couldn’t even keep down a glass of water.
That excruciating pain, is only the beginning…
Along with the agonising cramps, comes a myriad of symptoms. They include extreme bloating, heavy bleeding, bowel issues, pain during intercourse, nausea, and even infertility.
You would think that with a list of symptoms so long, that the path to a diagnosis would be a cinch. But that couldn’t be further from the truth.
“There is a delay in diagnosis of between 7 and 10 years. This is due to girls and women normalizing symptoms as well as doctors normalizing symptoms when women do finally seek medical assistance” -Endometriosis Australia
The Same Old Story
The tale seems to be as old as time. So often, women are still being dismissed, disregarded, and denied basic support by medical professionals.
Claudia, a 23 year old woman, explained that she got her first period at the age of 11. It was extremely heavy, and the pain was unbearable. She saw countless doctors who wrote her scripts for birth control and said the same thing:
“All the doctors I saw basically told me I was a girl and girls go through these things all the time- and I need to just get over it and learn to manage it.
“By the time I was 16 I had been on about 5 different types of birth control pills and none of them did a thing”
It took Claudia ten years just to get a referral to a specialist. And she isn’t alone.
Another woman, JB, reached out to tell the tale of her ongoing battle for a diagnosis:
“My first period was so bad I thought I had appendicitis. I thought I was dying. I was basically told ‘this is womanhood, good luck!'”
Ten years later, JB received a referral, but explained that after years of being ignored, she feared what was to come.
“I am concerned about what might be happening inside me that is going unchecked. And the experiences of other endo sufferers I know makes me afraid to pursue it because I’m in for a long journey full of being dismissed even more.”
“It’s all in your head”
Another woman in her twenties, Courtney, underwent “minimally” (that’s debatable!) invasive surgery to diagnose endometriosis, only to be told it was all in her head.
“They told me they couldn’t find anything, and basically all my symptoms were in my head – go see a psychologist… This played a massive part in my mental health”
Despite what had happened, Courtney refused to accept this. So after another two specialists, and another surgery, endometriosis was confirmed.
My story, went down a similar path. Countless GP’s and trips to the ER, four specialists, two surgeries with painful recoveries, eight forms of contraception, and nine years later, I finally have a diagnosis. But the story doesn’t end there.
There is no cure, only management options. Many of which have their own cocktail of side effects that add to the pain and discomfort of every day life.
The need to be heard
One in ten women suffer from endometriosis, and yet every day women are accused of being dramatic, and “bunging it on”. We are told to suck it up and get over it, without even being heard.
Endometriosis doesn’t just impact your life because of the pain, but it disrupts all aspects of your life. Your relationships, your intimacy, your ability to work and study, your social life, your mental health, and your ability to start a family – it all takes a hit.
Studies have shown that 30-50% of endometriosis sufferers, are faced with infertility.
According to Endometriosis Australia, early diagnosis is the most effective way to reduce the impacts of endometriosis and frequency of invasive treatments and fertility treatments.
So, pair that with the absurdly long struggle for a diagnosis, and it’s no wonder that so many women are suffering.
Know your body, trust your gut.
We are taught that doctors hold the answers to all. We are taught that they can be trusted to help us when we are in need. But women with endometriosis often follow a different narrative.
If you, or someone you love is suffering without any answers, then don’t give up. Know the symptoms, know your body and trust your gut.
Do not quit until you have the answers you are looking for. There may not be a cure for endometriosis, but that doesn’t negate your right to a diagnosis and the best medical treatment available.