We all need to know about endometriosis

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This March is endometriosis awareness month. My eight year journey to receiving diagnosis was a road paved with misdiagnoses, misinformed doctors, medical professionals disregarding my pain (some being outright rude) and poor education of gynaecological health. No one should suffer this road and, most importantly, no one should suffer it alone. Statistics show that endometriosis is very common, so chances are you know someone with endometriosis.

Stylised fact sheet on endometriosis with figures discussing it (Getty images)

I have struggled to be heard by the media, by doctors and simply in everyday life when I try to talk about gynaecological health issues. I couldn’t count how many times I have been shut down and told every menstruator has period pain so ‘just live with it’.

Endometriosis is an inflammatory disease where tissue, ‘similar to which normally lines the uterus, grows in other parts of the body.’

I experienced painful periods from day one and was told by doctors it was ‘normal’. But what is normal? I was unable to get of bed for about three to seven days each period. I missed weeks off school. I was prescribed higher than the recommended doses of period pain medications as well as the pill but I still struggled.

A major issue with misdiagnosis of endometriosis is the normalisation of period pain. The fact that we are discouraged from talking about menstruation meant that I didn’t realise what I was suffering was abnormal.

So, why can’t we talk about gynaecological health openly and freely? There needs to be more accessible information and open conversations. These are lives being dismissed just because it makes some people uncomfortable.

 

'I felt lost, confused and mistreated for so many years. Unfortunately, my story is not unique. Studies show the average time from onset of symptoms to diagnosis is seven to twelve years.'

 

About a year after my first period I sought help from a gynaecologist. But she had old information on the illness and informed me that ‘if you have bad periods from day one, then you can’t possibly have endometriosis because that grows over time’. 

But this is wrong. Research on endometriosis has found that it can start during all hormonal stages: premenarcheal (pre-menstration), reproductive and postmenopausal. At the time I was relieved and I took this expert doctor’s word as gospel truth. Unfortunately, this led to suffering another seven years before I received my diagnosis.

During these seven years I continued to tell doctors how I was still struggling every month and the pill wasn't stopping the pain. All they did was shrug their shoulders, increase my dose and tell me ‘sorry, that is just how it is’. I felt I was weak. Everyone else had periods but managed — why not me?

Endometriosis is an invisible illness which can only officially be diagnosed through invasive and expensive laparoscopic surgery. Diagnosis can be very difficult as most of us experience different symptoms and types of pain. Thus, it is commonly misdiagnosed as other conditions, such as irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia, chronic pain, bladder issues, pelvic issues or sexually transmitted diseases. These conditions along with hypothyroidism, autoimmune diseases, allergies and asthma have been found to be significantly more common in people with endometriosis. Therefore, many people with these conditions may think they have found the root cause of their problem, when in fact there can be another underlying health issue, endometriosis, which is being overlooked.

A few years after my periods began, I was told I had chronic fatigue syndrome and I eventually became bed bound at 18. In 2019, I insisted on a referral to another gynaecologist as I realised the way I was suffering was not normal. Enough was enough. Within less than 30 minutes of discussing my symptoms and my health story with the gynaecologist, he stated that he was 99 per cent sure I had endometriosis. 

Hearing those words I felt my world crash down. I felt lost, confused and mistreated for so many years. Unfortunately, my story is not unique. Studies show the average time from onset of symptoms to diagnosis is seven to twelve years.

Long periods between onset of symptoms and diagnosis can lead to major long term effects. Not only on people’s bodies, minds and fertility, but also economic costs of healthcare and lost work productivity. Studies have found the average cost to someone with endometriosis is over $12,000 AUD per year.

Endometriosis does not have a cure, but there are treatments that can ease pain and symptoms. However, treatments are limited and can become quite costly on the patients, as the healthcare system doesn’t greatly assist. Treatments include drug therapy for pain relief, surgery (excision surgery is regarded the best but is the most expensive), physiotherapy, acupuncture and lifestyle changes such as exercising, diet and reducing stress.

I was never taught about gynaecological health and menstruation in school or by doctors. When I was finally exposed to endometriosis, I was misinformed by a specialist. We need to start educating everyone on endometriosis, not just those who experience it. Raising awareness is essential to reduce the wait to finally receive a diagnosis.

 

 

Susie RaySusie Ray is a psychology student, writer and blogger from Brisbane. She is passionate about encouraging people to find their own hope and advocating for chronic and invisible illnesses. You can find her at findyourownhope.com and IG:@findyourownhope.

Main image: Stylised fact sheet on endometriosis with figures discussing it (Getty images)

Topic tags: Susie Ray, endometriosis, chronic illness

 

 

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Existing comments

So that endometriosis sufferers don't become victims of other myths it should be stated that physiotherapy, acupuncture, exercise , diet modifications and stress reduction have no effect whatever as treatments for the disorder. They are simply money spinners for charlatans taking monetary advantage of the sick. There are, however, those patients who do benefit symptomatically but without cure of the disease from such useless placebos because of the belief/hope that the placebo will help - nothing but a psychological delusion- a potent trick of the human mind.
john frawley | 01 March 2020


Thank you so much for sharing your story! This is a conversation that definitely needs to be started and it means so much that you have taken the courage to share this piece.
Louise | 04 March 2020


Thank you for having the courage to share your story and raise awareness on endometriosis. Such an informative article and will be of great help to others suffering with this.
Emma (Not Just Tired) | 09 March 2020


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