From Brazil to Australia with Endo, by Julia
My journey with endometriosis started very differently from what I normally hear from others.
My name is Julia and I live in Brisbane. I'm originally from Brazil, but I moved to Australia in 2017. I had never had ‘classic’ pelvic symptoms such as cramps, long periods and painful intercourse. I was the healthy and happy for over thirty years.
Having been had diagnosed and now knowing the symptoms, I can look back and see some small signs of the disease in my mid twenties. These were not symptoms that impacted on my quality of life whatsoever. There was some random back pain which close to my shoulder blade, and a weird feeling when I was swimming. It felt like the water was pressuring in my chest accompanied by some painful hiccups, but that was it.
In 2018 I was at home putting the washing out to dry and I felt like someone was stabbing my back. I had an intense pain in the right shoulder blade. At the time I had thought it was a muscle strain, but three days later I was still feeling a bit sore. I started feeling air bubbles, as if they were moving up and down under my rib cage when I was lying down.
I worked as a Vet in Brazil for over ten years and I was afraid it could be a pneumothorax, which is a collapsed lung when air leaks into the space between your lung and chest wall. I headed to the GP and asked for x-rays, though initially they were a bit reluctant. In the end they agreed, and I got my referral.
The x-ray confirmed my first collapse.
I was advised to see a chest specialist. I had to wait a couple of weeks for my appointment so I searched online reasons for spontaneous pneumothorax in humans. One of the causes was called catamenial pneumothorax, which means having a collapse during your periods.
I made sure I asked the specialist about that, since my collapse happened on the first day of my period. He said it was not possible, and not a thing to consider at all. He assured me it was a once in a lifetime event and I should just live as it has never happened.
A couple of months later I felt the same thing but not as intense, so I went to the Royal Brisbane Hospital and asked to have another x-ray done. I also told them I was having my period, and I was concerned that was related to what was happening.
They didn't even bother to listen to me.
They didn't do the x-ray I asked for, they just sent me home. I was so frustrated!
I went to my gynecologist and told her what was happening. I said I wanted to investigate a bit further and she agreed to do a CT scan in my chest. The results came back normal. “Nothing to worry,” she said.
A couple of months later I had same thing only this time, it was very intense. I went to the hospital again and told them I would not leave unless they did an x-ray. That's when they confirmed my lung had collapsed again.
I went to see a different specialist. He told me there was a very small chance I had catamenial pneumothorax, and he said it would probably get better once I got pregnant. I was very confused, I wanted to be better but I was not really considering a baby at that stage in life.
Six months later I had another collapse.
That one was the hardest; I couldn't breathe, my chest hurt so bad that I had to race to hospital by ambulance. I thought I would need a chest drain, but they only put me in oxygen for six hours and then sent me home.
Two weeks later I had an awful stomach pain, and I fell down on my kitchen floor. I had never felt anything like that! I vomited due to the pain, and went back to the hospital - they told me I had kidney stones.
THEY DIDN'T DO AN ULTRASOUND!
They told me I had kidney stones… I was fuming! I told them that my pain was very low in the abdomen, and I begged them to do an ultrasound. After four hours in the hospital they finally did it and guess what, no stones… but they did find an ovarian cyst (6cm).
I did lots of research online, and I found amazing people who pointed me to the right direction in terms of endo specialists. I booked appointments with at least six doctors from four different countries; I just needed answers!
I had another collapse a month later and one of the doctors asked me to start taking the pill. It helped me stop the collapses for six months, until I had surgery.
I thought the collapses were going to stop, but six days after surgery I had a collapse again. Then another one month after surgery, and now the third collapse after a surgery which happened only five days later.
Thinking that all that pain and effort was in vain was a hard pill to swallow, and I honestly don't know what to do next. I'm waiting a couple of months before I go back on the pill for good, or maybe for the rest of my life - or even until menopause!
As I have had to pay for everything out of pocket I don't have money to have another surgery anytime soon. I'm also not emotionally/physically ready either…
The only good thing to have happened is that I know I have been officially diagnosed. Now, when I have to see doctors I just take all my surgery photos and lab results with me. With these, I don't have to ‘fight’ them for them to believe me.
Thank you for giving me the opportunity to share my story and for raising awareness to something so important - women's health!
This has been shared with consent.
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