Endo War Story
27 and Fabulous Right?
Pain shows us how strong we are, but looking back at the journey that led me here writing my story. Well it has been crazy, exhausting, testing, and full of very dark points.
But it has led me to start Endo Health Hub, and connect with so many incredible women.
Im a 27 year old with an old soul, knack for crochet, love of dogs and Endo warrior.
As a young woman at the age of 13 I was led to believe that being in 8/10 pain whilst on my period was normal. That not being able to function for the week of my period was normal. This led to many miss testings, ER doctors saying I just have IBS. Sending me for colonoscopies.
Every time I tried to make them understand the pain, this weird sensation I have never felt in my whole life. Like stabbing knives, crippling and overwhelming. Doctors would dismiss is and blame appendix or my bowels.
By the age of 21 it all imploded, I was sent to hospital with possible appendicitis. They very swiftly removed my appendix. I remember waking up from my first laparoscopic surgery. The all over pain, my shoulders feeling like they could collapse into themselves. Looking down at my stomach I slowly lifted the covers, saw blood drenched incision sights.
Felt like all the good washed from the world, I was alone in the room. Looking at my stomach feeling so distressed. It was like looking at a strangers stomach, it felt surreal.
The doctor entered the room not long after to tell me about the procedure. Sweet Jesus was a naive young woman about medicine.
From there on I did nothing but search google and try to find answers.
I had no answers until I stumbled across Mathew MacBeth, he was a god send. I still remember my first consultation. explaining my pain, and looking for hope.
He gave me all of that with the diagnosis of a large ovarian cyst. The reason my partner Shaun and I spent 8 hours in Robina Emergency department. Sent home with no diagnosis just pain relief. The cyst was 7 1/2 cm and needed to be cut and drained.
It is where I learned how much of a challenge recovery is, from the pain, to the exhaustion, fatigue, and relapse into hospitals.
The third and fourth surgeries got easier. The Fourth surgery, oh baby was she a big one. The surgeon cut me open to reveal an Ovarian Cyst the size of a grapefruit about to rupture.
Now just recovering from my 5th Endometriosis surgery to cut out and remove Endo. I went to a different surgeon one who was meant to be incredible at what he does with removing Endo. He talked a big talk and I felt ensured that he would help.
Little did I know the private hell I was about to enter with this surgery. The prodcure was performed at St Andrews, Which I have never been to before. It is classified as a "private hospital". Was lucky enough to have my parents support and afford another procedure.
The day of the surgery came around fast with my mum, and partner at my side. As you do you get changed into surgery exclusive styling, those socks, paper underwear.
I looked just fabulous, but was beginning to shake as I waited.
Then it was on, they wheeled me to the room just before the theatre. As I am writing this my heart is sinking and I feel anxious. The room was so cold I was shaking uncontrollably.
Then the anaesthetist came in to review me, I gave him the general " I get super sick after surgery, please give me something to help". He began to fumble finding my veins.. that should have been the first sign.
Then I was taken into the operating theatre. My whole limbs were shaking uncontrollably the nerves setting in. My surgeon entered the room. Him "Hello, Nice to see you". As the nurses transferred me to the operating table. He continues "Oh call my office and schedule an appointment for next week".
My inner thoughts were "Mate, you are about to cut me open, why would I be thinking about making an appointment??".
The anaesthetist began count back from 10, then like and out of body experience I jolted awake in the post operative care unit. I couldn't wake myself up. It wasn't like my surgeries before, where when you wake up, you were awake. I quickly realised they had given me too much anaesthetic.
Once back in my room I was so relieved by the sight of my partner and mum. Then it all began, my own private hell. With any abdominal surgery movement post operation is important. But two hours of being in my room I was up and to the toilet. Yeah, it does sound positive but it wasn't.
The uncontrollably bad bladder spasms started, and I didn't know what it was till hours later. All I knew is that I had to pee, every 1 minute, not over exaggerating. Just a constant feeling as though you had held in pee for 4 days straight. There was freaky blue dye coming out of me. Great. What the fuck was happening? .When I asked the male nurse. " He was like of course you are going to have bladder spasms. They moved your bladder". Oh thanks for your caring boo.
Did I mention that I hadn't eaten since 8pm the night before? And it was 7pm before they fed me. Which was too late, because I was nauseated and couldn't manage anything but jelly. Which my partner had to hand feed me because I was so weak.
Then bam the pain hit, we had to keep reminding the nursing staff for everything. Including my scheduled pain relief. The room had no air-conditioning, they were slack on giving me water, and the place smelt like urine and poo. I was actually afraid to be left there overnight by myself.
The uncontrollably bad bladder spasms went till 4:30am, which meant I was up every 5-10 mins on the toilet. Then they discharged me.. after the doctor spoke 3 sentences to me. "Oh we found Endo, and nahhh you will be find to go home". Despite me telling him my pain was out of control, and that I haven't slept. And asking him about my bladder spasms. "Oh you will be fine, you will be more comfortable at home". No you were wrong.
I was back in hospital 2 days later, admitted for two nights under my normal Dr Macbeths care. One week later had a large cyst rupture. Bam, Hospital. Admitted back into hospital by Dr Macbeth.
Now, I am in the midst of getting my life pieced back together. Being able to do normal adult things like, work, driving to the supermarket and sleeping. Endometriosis can be deeply uprooting to womens lives. Why I lay it all out here, to show the strength that women need to battle such an illness or any chronic illness for that matter.
Let's give this invisible illness a voice.