G'day and thanks for coming to read my journey with Endo! Well, where do I even start? because its been one hell of a ride that's for sure. Not a good ride, like at the pony farm, more like jumping on a cranky AF bull at a rodeo kind of ride.
First of all, I want to start by saying that I had symptoms of endometriosis about 12 years before I was diagnosed. Yep, I said it. 12 YEARS!
I got my first period quite young, I was in year 5 at the time. Periods were never 3-5 days for me and man let me tell you, they were never light. I wore night pads during the day to get through the 2 hour long blocks of schooling before a lunch break, and you best believe that I still have to do this. I still have to wear night pads during the day because of my out of control flow. Oh, and the cramps. holy shit, the cramps...
Turns out, Endometriosis isn't " just a bad period" its a shitty illness that affects every part of your life, your body, it interrupts your day, your plans, and your mind. Little did I know this would be something for my whole life, with no cure.
Any way back to it. Year 10. My boyfriend and I at the time started to be... curious - you know what I'm getting at. Us girls are all told that the first time is meant to be a little tender and sore, but what about the second, third and fourth time? It hurt, ALOT, and I'd always bleed afterwards.
Of course I hadn't told my parents I was having sex, so I took the medicare card out of mums wallet while she was in the shower one night and booked myself in to see a random doctor that was at a clinic across the road from my school.
I wagged first period and anxiously sat waiting to see this doctor. First of all, I told him about my periods and he suggested I go on the pill in order to skip them and I'd be less miserable. He then asked if I was sexually active, and I told him about the pain was having. He arranged for some tests for a Latex Allergy. Confirmed I was allergic to latex, and told me the pain would go away if I used latex free condoms.
Problems solved! Skipping periods, and latex free condoms. Pain free. * Insert major eye roll * NOT!
I kept seeing doctors and being dismissed or had my pill changed here and there.
Fast forward to just before my 18th birthday. I had finished year 12, I was working full time, My parents had recently separated and I moved out to live with my boyfriend. I lived with his family for a while and became very close with his mum.
She was like a best friend, and had Endo herself. I remember her coming home from a lap surgery and speaking to me about it, I didn't think much of it at the time. This is where I learnt very briefly what Endometriosis was.
Over the years I've had countless ultrasounds, blood tests, I've seen more doctors than I can count on my hands, or toes for that matter! All normal, all clear, no abnormalities. Can you believe it? I was in pain for what was meant to be the "best years" of my life?! I was miserable.
A few more years passed, my boyfriend and I had broken up and I was struggling more than ever with my health. I was working in Real Estate at the time and the job was so physically demanding, I was working 6 days a week, around 60 hours! As a Personal assistant to a Sales Agent I was expected to pound the pavement most days and do letterbox drops, host opens, and set up boards for opens & auctions. I really struggled, but I'm a Taurus, and I never back down so, I stuck it out. I thank myself every day for staying in the game because this is where I met my now Fiancé - Michael.
We started dating, and I was rapidly getting more and more unwell. I was bloating like a pufferfish, I looked 6 months pregnant some days, I had shooting pains down my legs, and was just so uncomfortable unless I was in a tracksuit. Crop tops were quickly swapped out for Michaels t-shirts, this was the only way I could somewhat function.
I swapped out the suit and heels, for activewear at a desk bound sales role for an online publisher for the health industry. This is when I decided to start chasing a diagnosis for what was going on inside this demonic body of mine. I was very blessed to have a flexible work environment to do so.
Working for the leading publisher in the Health Industry, I read a lot of health articles, a lot that made absolutely no sense to me, I'll be honest, but they didn't have to as I was selling the advertising space.
It was just before Christmas in 2018 and I came across an article about women trying to conceive with Crohn's and Endometriosis. I had a light bulb moment about my ex boyfriends mum and our conversations about her endo. Holy shit, this is me, this is what I have. I still remember the feeling of my stomach just completely falling out my ass and the room going fuzzy.
I spend the rest of the day researching, and deleting my browsing history, because you know, I was at work lol.
I booked in to see my GP, and had pages of symptoms from the internet, and then lists of all the symptoms I had experienced. Everything matched up. She gave me a referral to see a "Endo Specialist" and I was out the door.
I remember driving all the way out to the other side of melbourne after work to see this specialist. I was shaky as fuck and cried on the phone to Michael as I drove out there. I did the paperwork and then was called in to have the consult with the specialist. He was kind, and made sure my pain was validated, he explained the process of a surgery and did a pelvic exam on me. I was out the door signing paperwork and handing over a couple thousand dollars for my first Lap surgery in 2 weeks time, but first I had to get ANOTHER ultrasound.
It was the day of my EOFY work party and I had the ultrasound in the morning before it kicked off at lunch time. I had my hair and make up all done, cute little get up on ready to smash some drinks and Karaoke right after. I took my pants off, hopped up on the bed and the ultrasound started. PAIN, so much PAIN! I squirmed and cried, and when we were not even half way through the lady doing the scan called the specialist in and he confirmed they found ENDO. I stopped crying almost immediately. I just kinda went numb.
I remember calling my sister as I walked back to my car and we just cried together. I put my big girl pants on, and fixed my face and proceeded to get absolutely shit faced at the EOFY party.
Lap Day came around super quick, I had a 2 hour ABLATION surgery and woke up to be diagnosed with stage 2 Endo, found on my ovaries, pouch of Douglas, bladder - you name it, it was there. I was sent home a couple hours later and drowned in a cocktail of pain meds for the days coming.
Recovery was rough, I had shoulder tip pain, that no one warned me about from the gas not being able to escape, and instead rising and pushing on your diaphragm. The shoulder tip pain was worse than the lap sites. I moved like a sloth, sitting up was hard, laying down was hard, pushing to do a wee was harder, and taking a dump was an absolute joke. That shit hurt - pun intended.
I had my post op appointment a few weeks later, and my stitches came out and I was sent on my way being told I was fixed, and it was gone, and I'd never have another surgery.
Ummmmmmmm.... I never recovered from this surgery. The ablation caused everything inside me to stick together. I formed adhesions and everything slowly got worse, and worse.
I started sharing my story on an instagram page I built about my journey and what I was experiencing. This is where I was educated on the difference between Ablation and Excision. I needed excision and I needed to find where to get the help for it.
I researched so many doctors, I turned to Endo forums on Facebook, I reached out to others who were sharing their Endo journeys, and I finally decided on the one. The hands of a man who I had all my faith in, to give me my life back.
I booked an appointment, that couldn't come sooner. I had to wait 3 months to see him. The longest 3 months of my life! Im still so glad I waited. I brought my before and after photos from my last lap and he looked at them and shook his head. The after photos still had endo..... He pointed to every space he could still see endometriosis in the images. He told me his fees to operate and asked how I felt, and I just cried. I couldn't put a price on my health, I was desperate for health. I paid the fee, and I was booked in for a Lap in 12 weeks time.
Lockdown hit in Melbourne and my surgery was cancelled twice, I can't say I was okay mentally at all. It was all getting way too difficult to manage and my mental health was spiralling as much as my physical health.
My Specialist called me and promised me he would take my case to the medical board and do the best he could to make me an urgent surgery. He did. This man did everything he could to help me.
I was in for Excision surgery + Mirena insertion the next day.
I woke up to a catheter and a drainage tube out one of my incision sites to help with the gas. No shoulder tip pain this time my friends! The Specialist came to see me and informed me I in fact had a stage 4 endo diagnosis and that he had spent almost 4 hours tending to it all. I stayed 2 nights in hospital while they got my pain under control, and made sure I could completely empty my bladder before I left.
I had a few complications after the surgery with the Mirena, and it was out within 7 days. Around this time was when I met Helene & we started entertaining the idea of a Business, and the birth of The Spoonie Society!
I had my post op appointment and I was going GREAT! I started fertility treatments about 4 months after once I had recovered. I'll go into that in another Blog though.
Long story short, we had a lot of question marks, and I was rapidly declining again after being off the pill, and my periods were heavier than ever before. I was bleeding through a super tampon and night pad within an hour or two. In addition to these complications, I decided I wanted to do an egg freeze, so I booked to see my specialist again. HELP ME! I was advised it was best to get in there and do a lap to get my body in the safest place possible before going down that path, and also to see what was going on in there again.
In-between this time in the middle of yet another lockdown I had a cyst rupture and was rushed to emergency. I cried through the ultrasound and was offered no pain relief except Panadol. They confirmed the cyst rupture and sent me on my way with no pain relief at all. I was so devastated, I wasn't taken seriously at all.
3rd Lap - Same deal as the last time really. My specialist went in again cleaned up more endo and adhesions. I spent another 2 nights in hospital and came home.
The morning after my surgery I was deep in the pain meds, and decided I wanted a change of scenery from my bed to the couch. I came down stairs to Michael on one knee with a ring in his hand. We cried together and he told me how strong I was, and how proud he was of me. He gave me confidence that no matter how sick I got he was always going to pick me. He really is a real one.
Soon after we started the egg freezing process. I started seeing a Fertility specialist and got everything underway! I had to take medication to bring on a period, as my period decided to go MIA after the last lap. I did the course, and had the period and the started with the 2 needles for 10 days.
My egg retrieval was a piece of piss, I was very lucky! I didn't have any symptoms through the process really, and the procedure went smoothly. I woke to the good news of retrieving a heap of eggs which are now frozen somewhere in Geelong.
Since then, I've been really up and down. The IVF drugs had really aggravated my Endo. Im flaring for days at a time, and I can see my mental health doing down a dark tunnel again. Fertility treatments are hard, endo is hard - but throw a pandemic and lockdown in there. Thats just fucked up.
Last week I saw my Endo specialist again, and we agreed to do another lap! This will be my 4th lap in 2.5 years. My 5th Procedure for endo.
I'll be sure to share how I go with you all on @thespooniesocietyau instagram page, but until then, I'll keep punching, like I always have.