Endometriosis & My Long Road to Diagnosis

It was about this time last year that my health started to decline rapidly. No idea why. If I'm honest though, I've never been in tip top shape. Just ask my mother, she lovingly refers to me as her defective child. My body has never really worked right, and I've never known why. It plays this wonderful magic trick where it throws out a plethora of symptoms, only to be on its best behaviour when it's time for testing. Makes you the perfect target for a doctor's gaslighting.

Trust me, I've heard it all. Doctors far too often blamed my symptoms on anxiety. In my opinion, a diagnosis of anxiety from an ER doc roughly translates to "I don't know what's wrong with you and I'm too proud and arrogant to admit that I don't know." I've even had a doctor say, "maybe you have a new disease they haven't discovered yet, so you'll need to be patient!" A wild, left of field statement, that also seems to be code for I simply cannot be bothered.

I will say, my symptoms didn't start as obvious endometriosis symptoms. My first trip into the emergency room was after I lost consciousness at a family lunch. It started with feeling my heart rapidly beating, completely unprovoked. Followed by feeling hot and sweaty; no amount of cool water on my neck and fanning was helping. My husband had to call an ambulance as I was slipping in and out of consciousness between dry heaves. All I can really remember is my body completely and utterly panicking. It was like my body lost any ability to regulate itself.

In the ambulance, I was given all sorts of needles and things started to settle. My heart rate, blood pressure and temperature were still all over the place, but I no longer wanted to be sick, so that was something! At the hospital they ruled out a heart attack and a stroke, all the basic blood work came back clear, I was pumped full of fluids and sent on my way with no clue in the world what had happened.

My husband and I talked it over again and again trying to make sense of it. Our best guess was that one of my drinks had been spiked at lunch. That thought gave me some peace because that meant it would never happen again.

Until it did... The next time I was at home. About a month later. This time I was in bed, watching silly tik toks on my phone without a care in the world. I felt my heart start racing uncontrollably and my body started pouring our sweat everywhere! My teeth my chattering and I felt bloody awful. My wonderful husband called another ambulance and back into hospital we went.

We had no idea why it was happening. I didn't get blasted with medications this time on the way to the hospital, so this symptomatic episode seemed to last longer. My blood pressure would skyrocket suddenly before plummeting to a dangerously low level, my body would shiver and shake. Up and down the numbers went. I remember myself saying to one of the nurses "please don't let me die."

My head was also killing me. The left side of my head was numb and filled with pins and needles. The pain was crushing; I felt like my head was going to pop. A shift change for the doctors meant the new guys on the scene weren't too fussed with me at all. They also hadn't seen my heart's dramatic performance and decided to send me home. They didn't do any testing, no bloods, no scans, not even a physical examination.

My wonderful husband had to push for something to be done. He was worried that something was seriously wrong as I was losing feeling in my left arm as the headache progressed. My stubborn ass was refusing painkillers too, in order to be taken seriously and not just cast aside as a drug seeker.

Reluctantly, they did do CT scans of my brain and didn't find anything scary, much to our relief. They took more of a history and theorised that whatever was happening to me could be hormonal but my kidneys and brain appeared fine. I asked about my lady hormones, you know, being a lady and having lady hormones and all... and they looked at me like I was an idiot. Off home we went, yet again with no answers.

On our next trip into the hospital, we met a more capable doctor. He was a GP as well. He did send us home, but sent us home with a plan. The first doctor to do so! He suggested we get referrals to a Cardiologist to investigate for dysautonomia conditions, a Neurologist for the head pains, and the Dizziness Clinic for the disorientation and everything else. I also mentioned that I had been diagnosed with PCOS (Poly-Cystic Ovarian Syndrome) when I was in my early teens and had several surgeries to remove cysts. As well as disastrous periods and a mass in my uterus lining that had been neglected to be removed by a previous surgeon. This doctor suggested to consult a Gynaecologist after we saw the other specialists.

I kinda felt like we were getting somewhere. We had a plan finally! However, specialist appointments take months. I was still in pain every day, my headache was there all day, every day. It hurt to hold my own head up, I could no longer get out of bed to function. Some weeks were worse than others, my husband theorised that the worst weeks were when I was ovulating.

He was right. Almost like clockwork, I would hit breaking point around my ovulation point and end up back in hospital. I was pumped full all sorts of fandangle drugs, hardly ever offering relief. I think some were given to me purely to see if I was making it up. Antihistamine drips, Antipsychotic drips of all kinds, antidepressants, anticonvulsants. I went through spinal taps, scans, pain medications that ruined my stomach lining. I made appointments with physios to fix suspected slipped discs and pinched nerves in my neck that weren't there; anything to get relief.

The Cardiologist ran a million expensive tests and found slight signs of an arythmia, but that was all. Structurally, my heart was fine. The next option was spending $30,000 on a specialised test but he doubted it would show anything. We were still waiting for the Neurologist and Dizziness Clinic follow up. The hospital trips were no longer helping, and I was at breaking point.

My husband and I were beyond fed up. It had been months and months. We begged my regular GP for a referral to a highly recommended Gynaecologist. The silent hope was that maybe just removing the hormonal birth control implant I had would provide some relief. My appointment with her rolled around sooner than any of the others.

I was waiting for her to look at me like I was crazy. Coming into a lady bits doctor complaining of a debilitating headache... But she never did, instead she rapid fire asked me several questions, all of which I related to, and she very quickly said "You have endometriosis. Deep infiltrative stage three, perhaps stage four, I'd suspect." She also thinks the mass in my uterus lining is a fibroid and my body trying to rid itself of the fibroid is causing the headaches and the whole-body inflammation.

She showed me this picture to explain my body:

This wonderful doctor is taking my pain seriously, the first to do so! She gives me medications to help with the condition and referrals for ultrasounds so we can prepare for surgery. She honestly doesn't mess around.

I left the appointment feeling lighter and hopeful! After a visit to the chemist to get the medication, I took the first tablet and felt relief from my headache fifteen minutes later. The feeling was so overwhelming that I cried that rest of the way home! A happy cry, I promise.

I've had my surgery since and I'm still recovering. Slowly but surely. I'm mostly venting really because I still hold a lot of anger towards all the other crappy doctors that ignored me and made me feel less than.

I want to document more of my journey. It may help someone. It may not. But I know for sure, it's definitely going to help me heal! I can't keep all of this whirring around my head every day! I need the therapy of writing and getting it all out.