March 2, 2016

Dear 21 year old Syl, You’re not going insane. You have Endometriosis.

sylvia Uncategorized awareness, endo, endometriosis, flare up, mamamia, pain, proud to be out, symptoms, work 6 Comments

Byron Bay 2012. So happy. Perfect day. 2 hours after this photo was taken I was in agony, bawling my eyes out in the bath tub, cancelling dinner reservations and wondering if I needed to go to hospital… all because of Endometriosis. But at that time, I had no idea. I often think now about the things I’d say to my 21 year old self.

At 21 I was studying at UTS, interning at Mamamia, waitressing at a restaurant (both jobs that I loved) and flatting in Bondi. I was having a lot of fun but also feeling extremely unwell. Despite what my life looked like through the filtered lens of social media, offline I was a very sick, anxious girl.      I was always tired and always in pain.

The pain came in a variety of flavours: pelvic pain, period pain, back, hip, glute, abdominal, migraine… and searing, stabbing, grinding, ripping Endo pain. But back then I didn’t have the right words to describe it. I didn’t have a name for it. I’d never even heard of it. It would be another 6 months before I was diagnosed with Endometriosis.

I was able to go out with my friends and have fun by drinking or taking drugs. It was the only way I could numb my pain and keep up with everyone. How else would I have the energy to stand up or talk over loud music? Being out was a great distraction and temporary relief from the chronic pain I was in. My life on Facebook looked just as it should – vibrant, carefree, colourful and fun. In reality, it was not.

Endo pain is a whole other-worldly pain. It is unlike any other feeling and has been described as worse than contractions or child birth. To me it felt like my internal organs were being twisted, ripped apart and dragged through my body. My ovaries felt like they were being minced. The most confusing thing about Endo is that although you don’t LOOK sick, you can have 18 different types of pain and 23 different health issues happening all at once. This makes working or studying extremely difficult. It makes showing up to work even harder.

A regular day could go like this:

In the morning I’d often wake up with brutal fatigue, period pain, blocked sinus and an unexplained UTI. I’d often run late to work or uni because I’d be lying on the couch with a wheat bag on my ovaries till the absolute last second or rushing to the chemist to get more painkillers and Ural. By the time I had arrived my UTI had progressed to severe cystitis and I’d be pissing blood. It’s surprisingly hard to sit in class or wait tables or answer phones with a big smile when you’re pissing blood.

I’d be hot and dizzy with blurred vision and be in intense, intense pain. Sometimes I would try to push through it (at that level of pain and untreated illness this is never going to help) so that co-workers and employers didn’t think I was ‘soft’ or unreliable. But often after several trips to the bathroom to spew/wee/lay down on the floor/recover I just needed to get home.

 

I knew my employers didn’t believe me when I’d leave early or call in sick because moments earlier I had been fine and the night before I was out with friends having fun.

 

It was awful and so stressful. I lost jobs because of it.

It hurt not to be believed but honestly, I didn’t blame them. I DIDN’T look sick. I WAS out the night before. I DID feel fine a minute ago.

Sometimes I didn’t believe myself. Am I really in pain right now or is it all in my head? Am I just trying to get out of work? But I want to be at work… I want my job… Maybe I’m just soft…Maybe I’m not cut out for the real world because I’m lazy and tired all the time…

This negative pattern of self-loathing and confusion made me lose faith in myself for a while.
My mind was playing games with me.

My anxiety spiked.

I could no longer tell if my pain was even real because I was so baffled by its random appearances at inopportune times. It didn’t make sense. I was consumed by people’s perception of me – a young, healthy looking girl who likes to party but is mysteriously ‘sick’ out of the blue A LOT. If I didn’t have faith in myself, why would anybody else?

This was largely to do with my ignorance of Endometriosis. I had no idea REALLY what I was battling. I had no information.
I didn’t understand why I had period pain every day but no period.
I didn’t know that the immune system is linked to Endo which explained why I constantly had the flu or a sinus infection or a stomach bug.
I didn’t realise that chronic illnesses can cause intense fatigue.
I wasn’t informed about the link between diet and endo which explained my CONSTANT digestive disorders after eating or drinking just about anything….

I wish I could go back and give myself a huge, tight hug and say –
It’s ok! You are not going insane. You have Endometriosis.
You have a chronic, incurable but treatable disease that would bring the strongest person to their knees.
You’re sick with everything under the bloody sun because your immune system is so run down from fighting this shitty disease it can’t protect you.
You’re eating food and drinks that flare up your endo and screw with your gut, which is why you feel fine one minute and violently ill and in agony the next.
You can improve this by changing the kinds of foods and drinks you put in your body.
You’re severely fatigued because you need rest!
You have a head like a bowling ball all the time because you have brain-fog from pain!
Once you get a handle on things and let yourself heal, you’ll learn that regular exercise is your medicine and when you do it you feel strong, healthy and rise with the sun.
You have a chronic, painful but invisible illness.
You’re doing the best you can but you’re doing too much.
Don’t feel pressure from others to take on more than you can. Take care of yourself.
Pace yourself. You’re terrible at that but you have to learn. It will change your life.
If anyone knew how sick you really were they’d feel sorry for doubting you. If they had 1 day of the pain you feel, they’d understand.
Don’t doubt yourself because the pain is REAL.
But you can overcome it.
Right now nobody is giving you information but you will do your own research. You’ll learn so much that soon you will be managing your illness with total confidence.
You’ll learn everything that makes you sick and not do those things.
You’ll be confident and only take on what you can.
It will take time but you’ll cope beautifully. Suddenly your steps to recovery will all make sense and you’ll wonder why your doctors didn’t explain all this when you were diagnosed at 21.
You’ll be motivated by that frustration and channel it into helping others. You’ll find your passion.

I get tears in my eyes and a huge lump in my throat when I talk to 21 year old Syl. I feel sorry for her. I’m sad for what she’s gone through and what an unnecessarily long time it dragged on for. With everything I know now I could have turned her life around so much sooner and saved her years of angst.

I wish I could be there for every girl who is diagnosed with Endo and tell them it’s going to be ok. I wish I could tell them everything I know and save them as much sadness as I possibly can.

I wish doctors would handle things differently and the correct information was given much sooner. Learning self-management for Endo has changed my life and for now I get to live pain-free and happy. I want that for everyone.

I don’t understand why help and useful advice is not given straight away or why we are left to our own devices to figure these things out. I’m desperate to change this.

Syl x x