'I had unexplained chronic pain for 18 years. It took becoming a doctor to finally get a diagnosis.'

I’m a doctor who has suffered from severe and debilitating chronic pain for the past 18 years of my life. I had given up hope on ever getting better; I'd never even received a proper diagnosis for the pain I was in.

It started when I was just 15, mostly in my back and lower abdomen, but then later spreading to my neck, arms and hands. I was diagnosed with fibromyalgia — chronic widespread joint pain and fatigue syndrome of unclear cause —which is a 'diagnosis of exclusion'. 

This basically means that after many, many tests and many, many tears, GP visits, specialist doctor visits, and a few trips to emergency when I was in unbearable agony, they simply couldn't find anything medically wrong with me.

Watch: Endometriosis pain. Story continues after video.

I was made to think the pain was 'all in my head' and that if I could just think positively, eat healthily, and exercise regularly enough, I'd be able to overcome it through sheer willpower. 

I was made to think I was lazy and maybe even a little bit overweight. I had doctors tell me to lose a few kilograms, as it might help my back pain.

I was in a healthy BMI range by the way, but that didn't seem to matter to the doctors who were giving me this advice. This led to disordered eating and eventually, I began to feel like the pain I was in was all my fault. 

I'm actually not writing this to criticise doctors by the way (I am, after all, one myself now). I know many of them did the best they possibly could with the information and evidence base available to them at the time. 

I also did not become a doctor because I felt like I was treated poorly by other doctors back when I was a patient. I became a doctor because my own struggles with chronic pain made me appreciate the importance of the medical community, and made me fascinated by medicine itself, given all the research I'd done on my own symptoms over the years. 

I had also seen my grandparents grow older and become incredibly unwell with Alzheimer’s dementia, as well as bowel cancer. I was so grateful for the care they received from doctors, nursing home staff, and palliative care nurses during these tough times, it inspired me to give back to the community in the same way. 

Now, let's flash forward to February 2023. 

I'd just started my third year working as a junior doctor, taking on a new job in the Obstetrics and Gynaecology department at a public hospital in NSW. 

I was Senior Resident Medical Officer at this new hospital, which funnily enough, happened to be back in my old hometown. All of a sudden, I was seeing women I went to high school with 10 years ago, (I’m 28 now), coming into the hospital to have babies, and I was their doctor!

I was really enjoying the privilege of helping to bring all of these new, cute little babies into the world. Seeing the looks of absolute, unbridled, pure joy on the new parents’ faces, regularly brought me to tears. 

One day, about three weeks into my new job, I was rounding on some patients in the Maternity Ward, when suddenly I got hit by what felt like the worst period pain of my life.

I had to excuse myself to run to the bathroom where I lay down in the foetal position in one of the cubicles. 

I was in so much pain, I couldn't stand, so I had to call one of my colleagues on my mobile and ask her to come and help me. 

After taking me to an office, she lay me down on a couch, giving me painkillers and anti-nausea meds as I was in so much pain I thought I might throw up. 

"I know how you feel," she said, telling me she suffered from endometriosis too, although had never had surgery to formally diagnose. 

As she left the room, my world turned upside down. 

Listen to No Filter, On this episode, Syl speaks to her cousin Mia about the intimate details of her struggles with endo - everything from sexual limitations to egg freezing - as well as the bigger issues... namely, her fight against Bauer to legalise drug treatment for Endo in Australia. Post continues below.

Endometriosis was a diagnosis I'd wondered about a lot over the years. I had always had heavy, painful periods, as well as pain around the time of ovulation, ever since I first got my period at around the age of 13.

Although endometriosis - a disease in which the lining of the uterus grows outside of it — causing extreme pain — impacts roughly one in eight Australian women, it's very hard to diagnose. 

But after this painful episode at work, and a couple more trips to emergency, because my pain wasn't responding to even the most powerful pain meds I'd been prescribed, I'd had enough. 

Finally, I got in to see an Obstetrics and Gynaecology specialist. I dread to think how hard this is for women who don't literally work in that very department. 

I was lucky enough to be able to afford a private appointment, otherwise I probably would have had to wait at least another six months due to such long waiting lists.

After just a few minutes of talking through my symptoms, the specialist said: "I think you have endometriosis, likely stage two or maybe stage three."

With endo, stage one is the most mild and stage four is the most severe.

"We can probably do one minimally invasive, keyhole robotic surgery, in order to cut out the lesions, and while your pain will probably be a bit worse for the first two to three months after the surgery, it will then almost surely get better than it has ever been before," the specialist went on.

I felt hopeful for the first time in a very long time. Finally, I might have an answer. A diagnosis that would explain the pain that has left me feeling far older than my years and barely able to function, missing social occasions and struggling to sleep for over half of my life. 

Suddenly though, I had a whole new fear. "Does this mean I might be infertile?" I asked.

The O&G specialist quickly reassured me that in most cases, patients with endometriosis don’t usually struggle with fertility.

I had the surgery a couple of weeks ago with the very specialist who diagnosed me. So far, it's been a very painful recovery. 

I had nine lesions cut out from all over the insides of my abdominal cavity, including a growth of endometrial tissue which apparently was wrapped around my appendix.

This obviously was full confirmation of my diagnosis, and I was told it was stage two - very widespread but largely superficial (meaning the tissue was mostly growing on the surface layers of the abdominal cavity, and not deeply infiltrating into the deeper layers of abdominal tissues, which would be a lot harder to cut those deeper sections out). 

I was told it was lucky I had been on the Mirena, otherwise I may have had stage three or even stage four endometriosis, which can be associated with poorer outcomes.

I am incredibly grateful to all of the doctors and nurses and other hospital staff who helped look after me during this vulnerable period. I did not like the role reversal, of being the sickly patient lying in the hospital bed. You know what they say about doctors making the worst patients? Well, I’m afraid it may be true, at least in my case, anyway. 

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If any of my experience resonates with you, I'd advise you to speak to your GP or O&G specialist.

As I said, the surgery recovery has not been easy so far. Here are some photos of my journey so far: 

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Day One: So overjoyed to finally have some answers but also very tired, bloated and sore! 

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Day Two: Starting to feel a little bit better, had a good sleep in my own bed the night before, felt able to go out for coffee and a gentle walk outside in the sunshine and fresh air.

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Day Three: Still very bloated and sore, still needing lots and lots of painkillers to stay afloat in between sudden, sharp, stabbing pains, feeling a bit like I have a UTI.

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Day 4: Starting to feel a tiny bit better today, still very bloated and using lots of painkillers though.

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Day 5: My abdominal wounds are starting to heal up well but the pain and bloating are still driving me crazy, and the pain suddenly started getting worse when I woke up today for no obvious reason.

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Day 6: Still feeling pretty rough pain-wise and still so bloated, but well enough to take my dog Jasper out for a walk and swim down at the beach.

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Day 7: Finally starting to feel a bit better and a bit less bloated.

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Day 8: The ultimate painkiller arrived home. Meet my new little six-week-old puppy, Lexi! 

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