I was incredibly lucky to fall pregnant—and knowing what I do now of Endo, I realise just how lucky. My pregnancies were unfortunately pretty rough. I had abnormal bleeding with both and developed pre-eclampsia with both. I did a few frantic emergency room visits during both pregnancies. It was scary with my first, I was sure I would lose him and I lived in far north QLD with no family and my now ex-husband was deployed overseas with the army. I was induced with both of my boys. With my first born, my liver began to shut down and I was quite sick. My youngest wasn’t as dire as I was 38 weeks along by then, but it was a bit hard-going in the first month with my eldest because of how premature he was.
I decided not to go back on the pill and I had all sorts of tests for my symptoms. Nothing was found so I just sort of got on with life as you do. Especially as a mum, it is all about your kids and you always put them before yourself.
When my youngest was four, I went through a series of tests again and the gynaecologist said she found my case puzzling and had no idea how to help me besides possibly scarring my cervix but no guarantees that would do anything for me either. She never once mentioned the word endometriosis to me. I started doing my own research and realised I ticked all the boxes for endometriosis. I remember calling my mum to tell her. Her response was, she didn’t see how I could have it when I never had it before. I assumed that must be correct and I also read you had to have surgery for diagnosis and decided that sounded too scary. So again, I got on with my life.
Ignoring worked to a degree for two years.
Early last year, my symptoms just sort of exploded. My GP at the time tried to tell me I was depressed and wanted to stick me on anti-depressants, he did query endometriosis however but it got to the point where I felt he was starting to struggle to treat my womanly issues and went searching for a new GP. I found an amazing doctor who listens, she was convinced I had endometriosis and when I saw a new gynaecologist he was too. I experienced a lot of pain during an internal ultrasound and when he pushed on my ovaries. He handed me the admission papers straight away for hospital.
The wait time between that appointment and the surgery was horrid. I just got worse daily.
You start to feel angry at your body for letting you down. You begin to feel envious of those without health problems. You feel so isolated and removed from the rest of the world. I still can’t think of those days without wanting to howl in emotional pain.
I was also tested for ovarian cancer which was scary.
When surgery day finally rocked around, endometriosis was found everywhere except for my tubes. My bowel had adhered to my abdominal wall and not one scan had showed the extent to what was going on. I’d had countless internal and external ultrasounds and there really is no way to tell what is happening inside without a laparoscopy.
Since excision, my surgeon said the amount of endo he removed made what my body went through major surgery and expected it would take some months to feel healed and better.
I have now learned to enjoy the good days and accept the bad days.
The grinding fatigue is one of the worst, when it’s bad—I feel like I am standing on the bottom of the ocean and trying to walk through the water.
I have lost friends who found my disease too much to handle. They couldn’t handle my pain or if I was feeling down about it, which does tend to happen from time to time.
It’s ok though, because I realise they weren’t friends at all. People tend to see those with chronic conditions as weak, but the truth is we are exactly the opposite. To feel like you’re dying one day and then wake the next and leave the house dressed well and with a smile on your face? That is strength. To be at rock bottom and crawl up time and time again to fight some more? That is strength. I hate my children seeing me in pain. They’ve witnessed me crawling around the house on my hands and knees before, beside myself with my body attacking me. But again, once the pain flares pass, I am all smiles.
The hardest part about Endometriosis to me, is how misunderstood it is.
How people judge what they don’t know.
How people show little interest in getting to know what they don’t know.
Or when they tell you it will be fixed with some natural concoction that worked for their neighbour’s sister’s friend . . . or something like that.
We like to talk about what we go through, because, why should we be ashamed? We didn’t do anything to be in this positon. It is what it is. If I can make even one person feel less alone, then talking about it is well worth it.
It can often feel there isn’t a light at the end of the tunnel and there will never be.
I now see a physio that specialises in women’s health and for the first time in a long while, I feel hope. I feel optimistic.
Medications are tricky, often the side effects aren’t worth the minimising of pain. It feels like everything is a trade-off. It's always which can I live with other this? Which craptastic component of this spectacularly warped and never ending disease can I cope with over the other. What side effects are worth a tiny pocket of pain relief?
I like to focus on the basics of life and live simply.
The wind in my hair, the smell of the ocean, sunshine, the birds chirping, the colours of the world. I write because I’ve always loved to, but it’s also an outlet for me and it can be a great pain distraction. I was always the girl who worried about my friends and wanted everyone to like me. Now I just worry about those who worry for me and I simply don’t care for the rest. Not in a hateful way, I just don’t have the energy to bother now, and it’s actually pretty freeing.
Never forget; Your pain is real and there is a reason for your pain.
Don’t put up with it, keep going until you find the right doctors for you.
It is also ok to have some bad days. It’s ok to feel annoyed this is happening to you.
And, the sun will always come up tomorrow.
There is NO cure
Endometriosis can NOT be prevented
The only sure way of diagnosis is surgical removal of tissue and biopsy
Period pain is NOT normal (only slight discomfort is considered normal)
Hysterectomy is NOT a cure
Pain levels are not necessarily related to stage of disease (mild disease may cause more pain than severe disease)
Endometriosis is NOT sexually transmitted, you can’t catch it
Endometriosis is common—1 in 10 women at least but the number is thought to be higher.
If you want to tell your story, please email firstname.lastname@example.org