It’s been 4 weeks since an official diagnosis. 4 weeks of healing, both mentally and physically and also 4 weeks of anxiety and waiting for the next step.

I have Endometriosis and Polycystic Ovarian Syndrome. 

I may never conceive or carry a child to full term. I may conceive and birth a healthy child. My condition has the potential to turn cancerous, it also may not. 

We just don’t know. 

Since the age of 13 there has always been something wrong. I bounced from diagnosis to diagnosis from doctor to doctor from the age of 13 to 22. I was told it was constipation, that it was IBS, that it was potentially bowel cancer and the latest one was chrones. It was never properly investigated and for me I convinced myself ignorance was (painful) bliss. When I was 19 I had miscarriage. It was a total surprise, and I didn’t even know I was pregnant when it happened. It was a traumatic time that I just figured it wasn’t meant to be. It never occurred to me something larger could be at play.

A few months ago enough was enough. I was tired. Literally fatigued as all hell. Constantly sick, constantly bleeding from my bowels and the worst pain I can explain in my stomach. Cramps would wake me up crying in the middle of the night, my fiancée consistently asking if he needed to take me to the emergency room and me saying “no it’ll pass” because it always did pass eventually but not before it left you in sweats and tears. I didn’t want to be that girl going into the emergency room with a stomach ache. 

I finally went to my GP and demanded an ultrasound. I had to fight him for it. 

In April I had my first transvaginal ultrasound. My mum came with me and I cried when they told me both of my ovaries were scattered with cysts and one of my ovaries seemed smaller than normal. It was a tough day for mum and I. My mother was diagnosed with early stages of cervical cancer at the same age as I am now and we both had the same thought; I was potentially a candidate. 

My GP referred me on to a specialist at Flinders. It was an anxious two week wait between the referral and the appointment.   A full two weeks of constant breakdowns, calling my mum and fiancé crying because I’d spent too long thinking about the what if’s and working myself into an absolute state to the point where was I physically sick. I burned myself out just by thinking about it.

The day of the appointment the specialist didn’t mess around. He took me immediately in for another ultrasound, asked for the most intimate details about my life and my body. It was terrifying and also slightly soul crushing having to explain to a 60+ male about your sex life. 

As he explored the ultrasound he confirmed I had PCOS on the spot, however he was concerned for something else as my pains just weren’t consistent with typical PCOS symptoms.

I was booked in for surgery 4 days later. 

I was told I would be having a laparoscopy (keyhole) and also a hysteroscopy (a camera inserted through the vagina to look inside my uterus) both procedures required an overnight stay. I asked him what he was looking for and he said he said there was a variety of things. I didn’t want to know what the variety was.

The day of my surgery I was a nervous wreck. I’d spent two days before fasting and taking bowel prep so I was already bloody miserable and knowing that when I woke up I was going to be in even more pain made me wanna walk straight back out the hospital and into the nearest cave never to return to civilisation. My beautiful, beautiful fiancé was with me every step of the way and there was no way in hell he was letting me back out either. 

I was wheeled in for surgery at 7:30am and in recovery by 10am. I woke up blind at first and with the tickley oxygen mask up my nostrils. When the nurse came to check on me I was half asleep and the first thing I asked was

“Do I still have my ovaries?” 

Half out of it but still clear enough to ask the outcome of my biggest fear. 

She was a lovely nurse who reassured me I still had my ovaries but my procedure hadn’t gone entirely to plan. In the following hours I was returned to my room, high as a kite on endone and pain relief but with no answers. 

When the nurse came to check me later she gave some more information.

I had been cut open five times and I had heart complications during the procedure. They had taken biopsies of my uterus due to abnormal discolouration. 

“It’s fucking cancer isn’t it” I thought. 

That night I was visited by my beautiful friends and family and of course Liam remained by my side. The people whose unwavering love and support has been the only thing keeping me going through this whole exhausting process. You truly find out who the people support you are when you go through something like this and I am eternally grateful.

The next morning my doctor came to see me. It was a welcome relief after a day of no answers (the nurses couldn’t read his handwriting on his notes) 

“I’ve removed Endometriosis off the right side of your pelvis and behind your uterus. I didn’t touch your ovaries as the cysts were too small and can cause more damage if I attempted anything. I’ve taken biopsies of your uterus. You’ll get those results in two weeks. You also have an incomplete heart block – you should probably get that checked”

Another TWO WEEKS of waiting and now a fucking heart condition on top?!?

I returned home that morning and my god I’ve never felt older in my life. You know your relationship is strong when your fiancé has to help you go to the toilet and shower you. I’ve never liked depending or trusting people. I put my well-being into Liam’s hands for two weeks whilst I recovered from that operation and I wouldn’t have trusted anyone else. He fed me, helped me move around, picked up all the house duties whilst still keeping up with his university studies and work. He was my superman and I’ve never been more in love with him. 

I had a lot of time to think whilst spending two weeks recovering in bed. A lot of time to think negative thoughts. I became very depressed. Every conversation with Liam turned into a what if conversation which would end in tears and frustration. We made game plan after game plan for a variety of outcomes neither one of us truly even wanted to consider. 

My one goal in life is to be a mother. My only dream is to have a family with my beautiful love and live a happy and fulfilling life. I didn’t want to come to terms with the fact that both of these conditions can negatively impact fertility but in my darkness I fully prepared myself for that outcome and I HATED myself for it. HATED that I hadn’t insisted earlier for more investigation. HATED I refused doctors appointments or emergency room visits when having a flare up. HATED myself for having a failure of a body. HATED myself for missing work and income due to my body. My mental health suffered and convinced myself my relationship was going to ruins too. I put a lot of my suffering onto Liam and then again hated myself in return for in my mind being a burden. I tell you what if you ever find a Liam NEVER LET HIM/HER GO. This kid held us together. Laughed at me when I told him he should find someone better and that he could do better and told me I was an “ijit” (idiot) for ever thinking that way and that he was going absolutely nowhere regardless. It takes a strong person to live with someone with an chronic illness and he’s taken it completely in his stride. 

We saw the doctor two weeks ago. The tests came back non-cancerous but the biopsies confirmed endometriosis. There is no definite answer on our fertility. 

We are now waiting for the next round of waiting and more waiting. We are waiting for another specialist opinion, a trip to a fertility specialist and a trip for a colonoscopy as they’re concerned the Endometriosis has spread to my bowels. This will mean more surgery and more tests, not just physical but mental too. We are trying so hard to remain positive and look forward to our future regardless of any outcome. 

I am learning to accept that I have a chronic, incurable illness. 

It’s not been an easy three months but I have faith it will get easier. I have a world of support around me and I’m learning not be ashamed or angry. There are good and bad days. I still have cramps, I still bleed and I’ve got 5 scars on my belly as a constant reminder of what I’m going through.

A constant reminder that I am strong. My body has survived 10 years of this and so have I. Every day I get out of bed after being up most the night sick or in pain I win. Every time I make it through a full day of work without too much of a hiccup I win. I win for working with what I’ve got. 

If this has taught me anything and if there’s any advice I can give anyone it is TRUST YOUR GUT AND DONT TAKE NO FOR AN ANSWER. It has taken me 10 years to be properly diagnosed and continuing to be diagnosed. Don’t be ashamed to be scared, to feel sad or beat yourself up. I am still learning my self love and acceptance and it’s easier said than done but know I believe in you. 

My illness is not who I am. It’s a PART of who I am. 

I am just Amy 

and I’ve got this. 

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton