Thanks for checking in
This one’s going to be a tough one for me to post.
To be completely honest, I think it’s what’s caused me to be so hesitant with even starting a blog in the first place.
You see, one thing about this disease – is that so many people (doctors and medical professionals included) simply don’t understand.
You say, “Endometriosis” and they hear “painful period” and that is so far from the truth it makes me feel slightly nauseous just thinking it.
So, I apologise if I’m not my usual self for this post, (and I know that might not be fair since it’s one of my first) but, in the light of ‘ripping off the band-aid’, I hope you stick along for lighter posts in the future :).
My First Period (almost 14 y.o.)
I got my first period at 13 and 9 months, THE DAY BEFORE I was going to be a bridesmaid in my Aunty’s wedding.
It was also a few days before I was kicked out of home for the first time so it was obviously a bit of a stressful time.
It was a pretty normal ‘first-period’ story and one that actually makes me smile when I think about it.
I remember I woke up and felt some discharge as soon as I stood up, (which I get often anyway so I didn’t think much of it), so I sat on the toilet and saw a small bit of blood.
Mum and I were fighting at the time, so I called out “MUUUUUUUUUUUM” from the bathroom and she replied with a short, “WHAT?!”.
She came to the bathroom and I was like, “I got my period” and her whole face and demeanour changed.
It was like I told her I just got A+ in all my subjects.
She went out and got me a little pack of stuff, and showed me how to hide them in my clutch at the wedding. She also got me a beautiful bouquet of Lillies as a surprise to celebrate me “coming into womanhood”.
I think that was my first ever bunch of flowers.
I remember thinking “oh this is period pain” over the weekend and taking paracetamol and ibuprofen, but after that, I was completely fine.
Oh, what I would do to get that innocent uterus back.
My First (Nasty) Endo Flare (15 y.o.)
Throughout the year the period pains started getting worse with each cycle, and I remember a few months later I was sitting in class with heat packs at least once a month.
A LOT of women in my family have Endo, so I was also lucky to be around people who knew the warning signs and treated it early.
By the time I was 15 I had trialled a few different contraceptives pills, only to see things getting worse.
When I started to take time off school on a regular basis, I tried getting the Implanon (a small birth control bar that goes in your arm).
I had a HUGE fear of needles at the time (I’d refuse ANY blood test), but the promise of NO PERIODS had me heading to the clinic and rolling up my sleeves quicker than you can say “Endometriosis”.
At first, I thought it was AMAZING – a miracle cure even! No periods, no pain, no problems – so off I went, living life to the fullest.
If I could go back knowing what I know now, I wouldn’t have even touched a script for it.
About 9 months of no periods – no problems, had passed and I was staying at my Aunty’s house in Murwillumbah.
It’s a small country town, about 40 minutes out of Byron Bay and the Gold Coast with her husband and newborn baby, (WORST TIMING EVER – Also more evidence Endo is PURE EVIL).
We were out grocery shopping, (my aunty, bub and I) and I remember feeling the pain start.
They say you don’t remember pain, but I remember this pain like it was yesterday, still 11 years on.
I told her the pain was getting worse and worse, so she hurried along and tried to get everything and back to the car.
By the time we started walking to the car, my pains were so bad, every step was like being stabbed in the uterus with a rusty old knife.
As we reached the car I collapsed in a ball on the carpark floor, (not passing out or anything – just losing the strength/will to move) and started sobbing.
My poor Aunty was left with a screaming tired newborn baby, a trolley full of groceries to load by herself and a niece on a car park floor.
I managed to get myself in the car and we drove to the hospital, where she dropped me off so my baby cousin could go home to get some much-needed sleep.
I remember sitting in the tiny, old waiting room by myself collapsed over on the chair, (the only comfortable way to sit).
That’s when a couple walked out in hysterics “Don’t bother coming here! He’s in pain and won’t even treat him!” the woman cried out.
I was terrified.
My name was called by a male Doctor and I thought to myself, “I have no hope of being taken seriously here” as I walked over.
He took one look at me and said, “where’s the pain?”
I held my abdomen, and he immediately called out to a nurse, “We need Morphine, NOW!”
He then immediately turned to me, “Have you ever had it before?”
“No”, I replied
“And Maxilon!” he called to the nurse
I laid on the hospital bed, (more like crawled on) and a nurse came over and grabbed my hand, “you’ll probably feel like you’re going to throw up, its normal and I have a bag here ready for you ok?”.
After treating me, the doctor requested I stay overnight. But, by the time the pain was under control, all I wanted to do was crawl into my own bed and hide.
If I knew how long it would be before I had a caring team like that again, I wouldn’t have left until they forced me out the door.
They gave me the best care I’ve ever had to this DAY.
So much so, I still fantasise about going back to there almost every time I call an ambulance.
After that episode, every period was unbearable.
They’d leave me in hospital waiting rooms EVERY MONTH for 9-17 hours before getting treated, (curled up in a ball the whole time).
I’m not kidding – we had a much older and smaller hospital back then.
Relief (16 y.o.)
I finally had my first appointment with a Gynae, who made a recommendation it was Endo.
He advised me to have the Implanon removed and to have surgery and get an official endometriosis diagnosis.
I took the Implanon out (well, a doctor did anyway) and everything went normal again after that – success!
No point of doing surgery if I have it under control, right?
WRONG. SO WRONG. VERY WRONG, YOU IDIOT.
The Warning Signs Of The Year From Hell (22 y.o.)
After a few years of having it “under control”, (maybe 2 or 3 hospital trips total?), it started to go downhill – and fast.
I’d just started dating my partner at the time, Josh, and had been having no periods on the Depo injection for almost a year.
Worried the same thing would happen as the Implanon, I decided to take a break and give myself a period – BIG MISTAKE.
My periods came back ALL OVER THE SHOP and SO painful.
The bleeding would also completely stop at night. Like, we could have sex and the sheets – everything, would be completely clean, and then first thing in the morning – HALLOOOOOOOOO.
By 2016, I managed to work my way up in a hospitality job I LOVED in a fancy hotel, being promoted to a marketing position after only 3 months.
I was so proud of myself and felt like I could conquer the world.
Wanting to prove I could, I opted to stay in my regular hospitality positions, (at this point I had FIVE all over the hotel) as well as take on the marketing position.
This meant I was now working around 50+ hours a week on a regular basis (70+ during busy/capacity periods).
That’s when it all started to go downhill rapidly.
The Year From Hell
I started to have to take DAYS, almost WEEKS off instead of a day or two once a month.
By October 2017 I was only able to work 2 days per week, doing no more than 4-hour shifts at a time.
(I also bled non-stop from October 2017 – Jan 2018 and then again from the end of Jan – March 2018)
By February 2018, I had to make the decision to stop work altogether.
Most of last year, ‘the year from hell’ was spent in bed, bleeding, (with no explanation) waiting for Josh to get home from work.
Without him, I had no one to help me walk to the toilet, or get a glass of water, or food to eat.
I was unable to move without collapsing from pain.
I couldn’t eat because I had no appetite and I was throwing up from the pain almost daily.
I was in and out of ED all the time for pain relief, so much so that one doctor, (who refused to even take my temperature while the Mirena was, in fact, killing me) put a flag on my name.
Now, paramedics can’t offer me anything except paracetamol and ibuprofen.
But that’s a story for another day, (and another letter to the health minister).
When I finally had my appointment with the gynae to be admitted for a laparoscopy, he decided, (after 30 minutes of knowing me), he didn’t believe it was endo at all.
Then he dropped me down to the bottom of the list.
I was heartbroken and felt completely defeated.
I didn’t have any money to go private, I couldn’t work to save up for it and I couldn’t get Centrelink, (I was in a de facto relationship at the time).
To make matters worse, Josh and I had started to depend on Vinnie’s boxes to keep us going.
Sorry international Queens, this service is only available in Aus 😦 ).
The worst part about it all is the Gynae who referred me there and recommended surgery in the first place was now the HEAD OF GYNAECOLOGY AT THE SAME HOSPITAL.
I had to really fight to get my diagnostic surgery, and I think the only reason I did was for Josh.
It was so insane to me that he was staying through all this.
My last partner would leave me every 2 seconds, while Josh didn’t budge once – through the absolute WORST OF THE WORST.
I mean, he could have easily gone “screw this”, moved in with his mates and started spending his paycheck on himself instead of my medication every week.
Anyway, I finally got my Keyboard-Warrior on and took them to town.
I sent the Patient Liaison Team at the hospital an email, asking them some rather well-worded questions, that would have been very hard for them to answer in writing….
Side note: I was going to insert a screenshot of the email but it’s a little on the large side. Drop a comment below if you think I should upload it to a separate post.
Less than a month after I sent it, I got a call saying I was at the top of the list.
I finally had my surgery on June 27th of last year (2018) and was diagnosed with Stage 1 Endometriosis.
If you want to hear more about my endometriosis surgery experience, you can watch the clip below
During my laparoscopy, they did an excision (tweezers) all over the front of Uterus and Pouch of Douglas, as well as an ablation (laser) on my left ovary.
By that stage, I was also having symptoms for Interstitial Cystitis (a bladder condition), so I also had a cystoscopy as well.
But that came back all clear, and the symptoms seemed to dissipate after the operation.
I also had the Mirena put in, which is a whole other story.
All I’ll say, for now, is that it DID NOT WORK and I had it removed after 5 weeks.
In saying that, I know a lot of women who SWEAR by it and I don’t regret trying it – especially considering how much it’s recommended these days.
I was really one of those rare cases that ‘slipped through the system’.
Both the welfare and health care system.
I don’t know if it’s because of things being filled in alphabetical order/my initials, (B.A.) and people assume I’ll be taken care of?
Honestly, I’ve racked my brain for countless hours and I have no idea what happened.
Skip to today, I’m not on any contraceptives and while my pain and bleeding are much more under control, I’m still in a lot of pain.
I’m also experiencing new pains since surgery, like abdominal and vaginal pain around sex and ovulation.
I have needle-like tingling around my vulva as I’m lubricating before sex and ovulation pain is almost like period pain.
Most months I’m managing to push myself a little bit more, but other times my body makes the decision for me to stay in bed.
I’ve just had my first appointment at the pain clinic, (they’ve screwed me around a bit, but I’ll be doing reviews and sharing everything I learn/do each week, as soon as I start).
I’m so looking forward to learning the right balance of how and when to push myself – and when to rest.
I also have an upcoming appointment with a nutritionist to create a diet plan and will be following up with a Naturopath each week for 6 weeks after that.
Over the next few months, I’ll be learning a lot, and pushing myself even harder.
I’ll be looking to share as much as possible with you, (all the relevant stuff anyway) so I hope you like it!
Thank you for reading and I hope this has given you a little more insight into my personal journey with endometriosis.
Perhaps even it’s helped you to feel a little validated with your experience too (please share if it has, so I know to do more posts like this!)
What’s your endo journey been like? Have you experienced anything similar to me? Perhaps something strikingly different that you find interesting?
If you care to share in the comments below, I’d love to hear about it!