Things I wish you knew about endo - Endometriosis Australia

Responses

The responses I’ve received about my endo in these appointments have included –

“Oh that’s a lot of surgeries, surely they have fixed you by now?”

“Wow, so young to have so many health issues. But I suppose endo is really common, isn’t it?”

“Gosh, that sounds like a lot of symptoms, have you considered you might have an autoimmune condition?”

While these may seem like throw away comments, I often find them frustrating, particularly in a medical context. Surely everyone knows that endo can’t be fixed, that it can occur at a young age, and that as someone who has been dealing with this disease for over 10 years, I’ve more than likely gone down the autoimmune route of investigations.

In most cases, I try to answer each comment with factual information about the disease, my experience of it, and the realities of living with it day to day. But if I’m honest, sometimes I simply don’t have the energy to respond in that way.

While educating others, particularly medical professionals, on endo can be a rewarding and fulfilling past-time, it is also very tiring.

What I wish everyone knew about endo

So, in the interest of saving time and energy here is my list of the things I wish everyone knew about endo:

Endo is a chronic condition – currently there is no cure.

The cause of endo remains unknown.

Endo is exhausting – bone crushingly so. Endo fatigue is real and shouldn’t be underestimated.

Most people with endo have waited a long time for diagnosis. The national average remains over 6.5 years. [1]

Many people will have explained their symptoms countless times to medical professionals without being listened to or heard. Sometimes even telling your story can be triggering.

Endo is a full body disease. It has been found in every organ of the body. Cases have been found in the brain, liver, kidneys, bone, and heart. It is not just a disease affecting the uterus.

Endo can be excruciatingly painful. There have been times when the pain was so bad, I was unable to walk. Others experience pain so intense they lose consciousness.

Endo doesn’t necessarily only impact you during your period. For me, at its worst my endo symptoms and pain were constant. Every day. It didn’t stop.

Getting pregnant is not a cure for endometriosis. While some people experience less symptoms during and even after pregnancy, the pregnancy itself will not cure the disease.

Having a hysterectomy will not cure endometriosis.

Some treatments, including expert excision surgery, can significantly help endo symptoms – but these treatments are invasive, expensive, and not accessible to everyone.

Endo will not necessarily cause infertility. While it can make it more difficult for someone to get pregnant, not every person with endometriosis will struggle with infertility.

Endo is individual. Every person who experiences endo will experience it in a unique way.

While you probably couldn’t fit all those facts neatly on a t-shirt, it is my hope that future conversations, particularly with medical professionals, can start from this basis. After all, endo affects more than 830,000 people in Australia alone[2].

If you are one of those 830,000, I sincerely hope that you are having a good endo day, and that the people you go to for help respond to your personal story with the respect and knowledge it deserves.

Sending love

Rach