It Took 15 Years For Doctors To Believe I Had Endometriosis

Since 2008, I've been to the doctor's over 60 times.

On my first visit, I thought it was my recurring bladder infection. I was studying full-time and working three jobs. Instead of going to the bathroom, I'd try and push through my shifts. The situation was rough, but I had a method of handling them — scull half a box of Ural and get a round of antibiotics from my doctor. A quick bout of thrush later and I was good to go.

Until the next infection.

Fast forward to 2012 — I was living interstate and sitting on the floor of my bathroom in a towel, trying to let the Ural run right through me. My childhood doctor wasn't anywhere near me, so I was forced to find a doctor that was accepting new patients. The next day, I drove 40 minutes to find one who gave me what I wanted: antibiotics. I didn't realise that I'd be back just four weeks later for another two rounds.

In 2022, my years of pain culminated in a non-stop bladder infection that lasted for over six months. I'd lose control of my bladder and need to tell my work that I wasn't feeling well, when in reality, I was worried whether I'd pee myself during the train ride in. My bowels started giving out, making me think that I was developing a gluten intolerance, or even that the antibiotics I was on were stripping my stomach lining. I went through another four rounds. Nothing worked. Every day was agony.

At 3am, a week before my 34th birthday, I found myself once again sitting on a towel on the bathroom floor, eight Ural sachets deep, tears streaming down my face. To distract myself, I went onto Reddit and searched for my symptoms. I came across a post from a woman with symptoms exactly like mine. Her gynaecologist believed the bladder infections she kept supposedly getting weren't actually infections, but endometriosis.

I found a gynaecologist near my house and made an appointment. Two weeks later when I finally saw them, I had tears streaming down my face. But this time it wasn't because I was in pain — it was because I finally felt like I was being listened to. I felt hope that maybe, just maybe, my agony was about to be over. After a series of blood tests and ultrasound exams to rule out the presence of cysts, fibroids, tumours, or anything else that had gone rogue in my bladder, one blood test came back abnormal. That was all they could do without cutting me open to confirm that yes, I did have endometriosis.

For those that aren't in the know, endometriosis is when tissue that is similar to the lining of the uterus occurs in other parts of the body. It causes a lot of pain, and in many cases, infertility. My new GP said she had seen instances of endometriosis being present in a nasal cavity — which is an extreme case, of course — but it just points to the severity of the condition, and how little it's understood.

As you can imagine, I'm still a bit emotional about it. For the last 15 years, I've been living with endometriosis and had absolutely no idea. Even more, it wasn't my terrible and painful periods that made me seek help — it was a random side effect.

The Australian Department of Health estimates that one in nine Australian people with uteruses suffer from endometriosis. Despite this, it takes an average of seven years for the disease to be diagnosed. This is because you can't completely determine the presence of endometriosis (let alone the severity) without a laparoscopy — also known as keyhole surgery.

Before I underwent surgery, I would have male doctors probe into my sexual history, often making the assumption that I was promiscuous. Some even made me question if my long-term partner was cheating on me. I was told to drink water, pee after sex and take cranberry tablets. Of course, none of that worked.

The pain I experienced undergoing laparoscopic surgery cannot be understated. For a few days, Endone became my only solace. But despite the pain, it didn't hurt to wee. I kept wincing every time I sat on the toilet, expecting the inevitable pain, but it was finally gone.

We’re always told that our periods are going to hurt so I'd just assumed mine were on the bad end of the spectrum. I didn’t once think to get an endometriosis diagnosis. The surgery revealed that there was no endometriosis in my bladder or bowels — but it was everywhere else, pushing against my organs.

I went to Instagram to speak with other women who had endometriosis, but was shocked to discover that only one out of the 21 women I spoke to had had an official diagnosis. Almost all of them couldn't afford a laparoscopy, couldn't be bothered going through the trauma, didn't want to be cut open, or couldn't afford to take the time off work. For some, it was a combination of all four.

It’s understandable — in Australia, it's an expensive process. In my case, Medicare only covered $800 of the $3,000 operation. I’m yet to receive a bill for the anaesthetist, but my overnight hospital stay was an additional $390. That doesn’t even include all my gynaecologist appointments or all the ultrasounds leading up to the operation.

It's easy to sit here and say that I'm mad that it took me fifteen years to get an answer. That I'm pissed that every GP I saw just prescribed me antibiotics without investigating further. That no one thought to ask me if it hurt for me to have sex instead of questioning my supposed promiscuity. That it's not normal to need to take a day off work every month to deal with period cramps. That no, I didn't just need to drink more water or pee after sex.

But the truth is that there is still so much that's not known about endometriosis, despite being something one in nine of us deal with. Hell, there's so much we still don't know about women's health in general. Because the condition is under-researched and widely misunderstood, treatment options are often extremely limited and there is no known cure. As if that’s not enough, we still don’t know what causes endometriosis in the first place.

As of a few weeks ago, I have a Mirena IUD, and I'm hoping that the endometriosis will stop growing back. It's somewhat validating to finally have an answer and be free of the debilitating pain that I've lived with for over a decade, but I live with the knowledge that this is likely the first of many laparoscopies I will have throughout my life.

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