Another sleepless night keeping one eye open for the frequent shadow at my bedroom door, and one eye trying to get some much-needed sleep. I knew that I needed extra strength for the next day, as my daughter weathered yet another ‘endo (Endometriosis) episode’. Treading the well-worn path to the microwave to heat up the heatpack, interspersed with nurofen and ensuring the ‘bucket’ was close by, was wearing my resolve down.
About 6am, the early morning light changed the shadows to the pale figure of my 20-year-old daughter, doubled over, waking me from wonderland. “I think I need to go to hospital, I can’t cope anymore!”
I dragged myself out of bed, to the bathroom, still half asleep-half awake. Time to shine. Mum gear on, I gathered towels, more nurofen, and a freshly heated heatpack and pillows, and we helped her into the car.
Driving to the emergency of the Mercy Women’s hospital, which was well out of our way, we thought here would be the best and quickest way to get pain relief. After all, they were a women’s hospital!
Finally admitted into a room, they troll through the many questions; “how long has your period been”, “are you sexually active”, “what’s the pain like on a scale of 1-10?” They give her strong pain relief, the kind that always makes her so nauseous, but at this stage the nausea is worth it for the pain relief.
Finally after an hour, the doctor arrives. A young, beautiful twenty something year old, who looks professional and ready for action. The questions continue. The doctor sums up my daughters’ condition with a scowl, – “So you are taking no strong pain relief except nurofen. You’re having a break from the pill. You refuse the Mirena, and don’t want any other contraceptive device. What do you think we can do for you; you are not even trying to do what we recommend!”
My daughter is in tears!
I am nearly in tears. Not from her uncaring and unsympathetic demeanour, but the complete frustration of once again having no answers, and secretly wanting to pummel her unblemished young face into the wall.
She doesn’t know about the years of pain my daughter has endured. The two separate surgeries for endo. Ridiculously expensive appointments at gyno’s, rheumatologists, chiropractors, podiatrists, osteopath’s, naturopaths, and so many doctors. The failed attempt of an implanon device that resulted in hospitalisation, sown up crookedly, now an eternal scar on her arm. The inability for her to work, the recommendations of anti-depressants, psychologists, and yet again more specialists.
I didn’t have the strength to explain to this young professional that we had tried every conceivable drug, only then to try natural methods, to then go back to medical drugs and watch them fail as well.
We just both sat there and took her ridicule and allowed her judgement to roll over us for a moment.
Just a moment!
We gathered our things and walked out of that hospital. Both without words, knowing that they didn’t understand.
Endometriosis is a silent disease. It carries shame with it, because it can’t be explained. It’s embarrassing, it’s so painful, and it is isolating.
My daughter has cried while looking at social media and seeing well-meaning friends flashing their lives in FOMO fashion. It’s not that she doesn’t want to be there, it’s that she can’t be there. And when she does go out for the sake of preserving her friendships, she pays the price for it physically for the next week.
The silent scream of endo sufferers is to be seen, to be believed and to be known.
If you are an endo sufferer, know, please know; that you are not alone. There are so many women who know what you go through. There are so many resources on Instagram, through websites and support agencies for endo that are there to support you. There are wellness warriors like my daughter who while continuing to battle endo, want to be there for you. Because they understand.
As a mum who also had adenomyosis (another form of endo), resulting in a hysterectomy, and now sees her daughter suffer, I understand. The helplessness of trying to fix the pain of your child is suffocating. The medical profession dance is exhausting. While you help your daughter, make sure you care for yourself. Take time to get out when you can, have coffee, find other mums who get it. You also are not alone.
For you precious women who suffer silently, you are of great value. When you feel less, when you feel like giving up and just checking out of life, hold on. We hear you, we understand, and we exist to help you.
There is support for you, there are people who care and there is a great community on social media who just get it and will do life with you.
Check out some of these great wellness warriors who continue to find wellness while they make a difference:-
- Nancy’s Nook Endometriosis Education
- Melbourne Endometriosis Sisters
- Australian Women With Endometriosis Support Group