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.
Egg freezing, 1 year on. A little over 1 year ago I was bed ridden yet again, not from Endo directly but the threat of infertility made me decide to freeze my eggs just in case. Once the very few eggs I managed to produce were removed from my body I felt strangely sad, like maybe they’d never be there again, in the worst physical pain I’ve ever felt and utterly shattered. Knowing that after all my body had been through from egg freezing, I’d likely need to do it again to secure a decent amount of eggs.. Was depressing. I felt so lucky for the opportunity to use incredible technology and had a family that could afford it, but devastated that at 23 this was my life. I should be renting a flat, not freezer space for unborn children! (more…)
Hey gang. So right now what’s happening is that I’ve had 3 or 4 days of Endo pain in the past 2 weeks and I’ve noticed a whole bunch of reasonably gnarly bruises that seem to randomly appear in various places on my body without previous injury. That’s been happening for about 3 or 4 weeks. I’m not linking these 2 things together. But it’s not unusual for my body to fall apart in multiple places from seemingly unrelated things simultaneously. (more…)
Oh god I’m wearing the same thing as I wore in my last post. How lame. But cbf taking another photo because endo. SOZ! Yesterday was the first time I’ve been in pain from Endo since March. It caught me completely off guard. I woke up feeling fine.. then at about 12pm while I was walking to the shops for brunch I started to get those first few twinges. Ooh.. that felt strange… Then a dragging sort of feeling in my lower abdomen kind of like period pain. But it couldn’t be surely… Then all of a sudden, really sharp achey pains in my hips. I used to massage around my hips constantly because that pain was always always there. But I haven’t needed to in so long… Then that crushing weight on my lower back where you suddenly can’t stand up.. the kind that instantly makes you want to collapse into bed with a hottie under a blanket. (hot water bottle hottie… not human hottie.)
Even though every one of those sensations felt so familiar, I found myself saying in my head things like: “Maybe I’m just really hungry. It must be a stomach ache. Maybe I haven’t been stretching enough while I’ve been hunched over my laptop. Maybe I’m dehydrated…” Ridiculous reasons the lot of them. There’s nothing else that feels like endo pain. Even when it’s mild – you know exactly what it is because you’ve felt it a thousand times before. It has an order that it comes in and despite your brain trying to convince you it could be a simple hunger pain or muscle cramp, you know very well it’s not. But you appreciate your brain coming up with some silly ideas to try and distract you.
All in all it wasn’t so bad. I’m glad I left the house for supplies when I did because the rest of the day I couldn’t move from the couch – wheattie on the back, hottie on the front. The pain wasn’t the major problem but more so the fatigue. I snoozed till 6:30 then quickly got in the car to get to babysitting. If it wasn’t for my 3 little cousins being so cute and cuddly I probably would’ve felt rubbish all night but they’re so funny and sweet that by the time I put them to bed I realised I was feeling way better.
Today I’m left with a giant pain hangover which I’m sure many of you are familiar with. The day after I’ve been in pain I feel so tired I can hardly see, my head is like a bowling ball and my breathing is so shallow, sometimes I wonder if I might actually be almost dead… If I were dead though I probably wouldn’t still have all this uni work to do… dammit! I’m now in that battle with yourself where you can’t decide if you should push through with the things you were meant to do today or give yourself a break and just rest. But you know if you rest today, the mountain of things to do will be bigger and scarier tomorrow and you’ll have way less time to climb it! But sleep would feel so good… I just want to sleeeeeeep !
My Sundays for the past 5 weeks have been ridiculously productive. Sine I started my new degree I use Sundays to exercise, grocery shop, plan my week and do homework all on the same day. Today I feel incapable of any of that. I’m surprised I’m actually typing write now. Even my fingers and wrists are tired. They’re lying down flush with the keyboard while I type cause they’re just too heavy to flutter over the keys like they normally do.
It sucks that I had a flare up yesterday. I’m not entirely sure why it happened. I do know that this week has been one of the most stressful weeks I’ve had in a long time. Lack of sleep. A breakup. Uni work which has been pouring down on me relentlessly. I haven’t been confronted purely by the amount but also the level of difficulty. Have you ever read a sentence where 100% of the words were ones you couldn’t understand? Try 30 pages of sentences like that. Then times that by 5. Then times that by 3. It’s pure hell. It couldn’t be diet or exercise cause I’ve been good with those… Visanne has been fine for the last 2 months (just started month 3). No other changes I can think of. So maybe it was stress… I have cried a lot this week.
Whatever it was, I hope it doesn’t come back but looking at the positives – I’ve had an amazing run of good health this year. A couple of sinus infections and the flu but virtually no endo pain. And for that I feel really lucky. I wouldn’t say that this flare up has been a good ‘reminder’ of what endo feels like because I can never forget that. Being well and active has not made me forget. But it has reminded me of when I felt so awful every day that I was barely able to lift a finger. I couldn’t concentrate, I couldn’t think. Even reading an email seemed so overwhelming to me then that I’d burst into tears just thinking it. After a while, when the pain and fog became chronic my brain would play tricks on me. I sometimes wondered if I was actually in pain and couldn’t move in that moment or if I was just lazy. I couldn’t even feel pain in the way that I used to but rather would just feel the weight of exhaustion. My experience of pain became different and what used to feel acute suddenly felt numb. I started to not be able to tell the difference between pain at a 7 to pain at a 10 to pain at a 4. It all felt the same and I couldn’t tell if I was in agony just ok. I became very hard on myself and very unforgiving.
But feeling the pain yesterday and the fatigue today for the first time in so long has reminded me how real those feelings are. They’re so real and so strong that you are not always able to ignore them and keep going because your body simply can’t. I want to do my workout. I want to get all the grocery shopping done. I NEED to do uni work. But today I feel different. I don’t feel myself and I know I’m not up to the things I’m normally able to do. So I will try to prioritise, try not to get frustrated that I haven’t exercised since thursday, try not to throw in the towel and crawl into bed just yet, try really hard to get some work done and THEN flop on the couch so I can reward myself.
Hopefully a one-off and things go back to normal tomorrow. Man just thinking about doing uni work right now is making me want to give up and go back to bed… gahhhhhh!! zzzzzzzzz
Side note: I wrote this post on July 3rd but it mysteriously got deleted. I started again. Now it finally makes it’s way back onto my blog. However I am back-dating it so it is clear which date I started taking Visanne.
So today is Day 1 on Visanne. I’ve had my box of Visanne sitting in my bathroom draw since it was released on March the 3rd this year. Since our wildly successful campaign on change.org to have it released here in Australia, so many people have asked me how I’m going on it – assuming that I’d be taking it as soon as was made available. However, the campaign to have Visanne released in Australia & NZ (unfortunately it was not released in NZ sorry Kiwis!) was not just about me, nor was it ever designed to only benefit me. It was based on the principle of equal opportunity and that if there was a treatment option for Endo available overseas, we all deserve the opportunity to try it if we want. All of us. And that is what we achieved.
This time a year ago I was lying in a hospital bed up to my ears in painkillers recovering from my second laparoscopy while all my friends were sinking beers and playing two up. I was looking forward to reaching this ANZAC weekend and my 1 year post-op anniversary fighting fit – the way I’ve felt for months. But unfortunately I’ve had a relapse and lately my health has not been great. Getting the flu coincided with an Endo flare up, both of which have stuck with me off and on for the past 4 weeks. (To me this is a real indicator of the link between Endo and the Immune System.)
15 days of antibiotics has trashed my gut and my liver. 5 weeks without training has had a major impact on my energy. My muscles feel like they’ve been stitched together with a rope of crunchy glass. My body has been knocked around and its protective layer which I’ve spent months building up has been chipped away at. But unlike the last time I had an Endo relapse, this time I have backup. I have tools in my belt to help my rebuild. Everything I’ve been taught, everything I’ve learned, read, diarised and practiced over the past 8 months is going to help me gradually get back to where I was before. But getting to that point wasn’t easy. It meant growing up, being real and breaking some bad habits.
On Tuesday my Mum / Co-founder of EndoActive and I flew to Melbourne for the launch of the Pelvic Pain Foundation of Australia. Before we arrived at the launch we were feeling quite out of place and a little nervous that we wouldn’t know anyone. Cocktail parties are for mingling and there’s only so many wines you can quietly inhale and only so many paintings you can point and nod at before someone notices that you’re the Nigel hogging all the canapés.
Here’s a video of me doing my final round of hormone injections. I developed a ‘bang bang bang’ method towards the end of my egg freezing process which basically means I lock and load up all the syringes with the solutions and medicines, replace the caps on the needles to ensure they’re 100% sterile, lay them out on the bathroom counter then BANG BANG BANG shoot em up one after the other. That may seem a little extreme to some and even warranted a “Oh Sylvie, NO!” from my mum but I didn’t do this for shock value I can assure you. I actually found this method safer for me for a number of reasons. Keep reading for more details on Day 11…
You can see in this photo how swollen my belly is getting from all these injections and growing follicles…
I cannot even count the number of ex-boyfriends and phallic symbols or just blatant dicks in my dreams last night. (they came in many forms; dickheads, several dildos, people being dicks, actual dicks) Jesus Christ! (he isn’t a dick and did not appear in my dream) I actually woke up feeling a little embarrassed to be sleeping with myself like “woahh chill out girl!” When I got a glimpse of my reflection in my bedroom mirror my face was priceless – like I’d just been caught red-handed, mid-act doing something naughty. Except I’d been caught by myself. And it was just a dream… But dreams are rarely literal and I know that with a tiny bit of unpacking, it will be glaringly obvious what all the phallic stuff was for. Even as I type this it’s just so clear… hormones, the uncomfortable internal ultrasounds at Genea every few days with that cold, lubed up, phallic probe, creating potential new life in the most unnatural way possible – without a penis or sperm, all the “partner not applicable” sections I’ve had to scribble over forms, doing a (typically) couples thing on my own as a single 23 year old, making 50% of a baby in this clinical, unsexy environment, and yes sure my sex drive is in over drive … dozens of reasons.