Hey EndoActivists, here’s me talking a bit more about the lack of awareness and information on Endometriosis as part of our #endoactiveawareness campaign.
Over the last 3 weeks I’ve been making videos for a social media campaign which is part of my Masters in Health Communication degree at University of Sydney. I’m loving this degree so much! I never would have chosen it if it weren’t for my struggle with Endometriosis and starting EndoActive but our EndoActive community has taken me on a path into women’s health and has ignited a real passion I didn’t have before connecting with all of you!
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.
Colposcopy No. 2 … sounds like a lucrative perfume empire doesn’t it? I should really hit up Coco Chanel’s people and see if they’d like to endorse it. Sorry this update has taken me a while to publish – life has been extremely busy with social media buzz from that misleading CNN article, family health stuff (prefer when it’s me that’s sick than people in my family!) + new job. So my apologies for the delay!
Anyways on January 18 this year I went and had my follow-up Colposcopy No. 2 – 6 months after Colposcopy No.1. Last time I had the procedure done in hospital under anaesthetic in case there were any abnormal cells that needing lasering off. CIN2 cells were found on my cervix during that procedure which meant I had ‘pre-cancerous’ cells developing.
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…)
EndoActive’s DVD on Endometriosis is now available from endoactive.org.au SO ORDER YOUR COPY TODAY!
I so wish I had a resource like this available to me when I was in the throes of despair – not knowing who to turn to for advice after I’d had a million doctor and specialist appointments with no clear answers as to why I was still in pain after 2 surgeries and what I could do to help myself…
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
I AM GROWING MY HAIR OUT PEOPLE! Look how long it’s getting! I can actually tuck my hair behind my ears again. All seven strands of hair. And it’s wild. However I have of course captured myself at the best possible angle in this photo and 99% of the time my head actually looks so stupid. Underneath those thin strands of hair is a whole lot of mousey fuzz. I knew this time would come, however the awkwardness of growing out an undercut was not something I contemplated until the day after my birthday last year once I’d sobered up and realised that I had indeed shaved off most of my hair. Good times.
So I have now been taking Visanne for 40 days. This is month 2. I have to say that overall the transition has been really smooth! Looking back on my previous post where I diarised where my health was at on Day 1, the two issues I was having were predominantly SLEEP & ALLERGIES.
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.
It’s been 4 weeks since my last bog entry and 46 days since egg freezing. Sorry it’s been so long between drinks! Half that time I spent still recovering and the other half I had to bury my head in the books and finish my last uni assignment without distraction. Today I’m feeling 1000 times better than the last time I wrote, which is why it’s so important to diarise the bad days in life so you can see how far you’ve come. I’m not completely back to my old self but by tracking my progress I know that I’m getting stronger and fitter every day. I’m going to give you a long list of everything I’ve felt over the past 46 days since my egg retrieval so you can get a real idea of my experience – which of course will likely not be the same as your experience because we’re all so wonderfully different. It’s been a long a difficult recovery so it’s a pretty extensive list but I’m sharing it because it’s something I would’ve liked to read coming from another girl with endo before I embarked on this wild voyage. Reading another person’s experience would not have made my decision for me but it would have prepared me for the things you aren’t warned about. First of all, I hope I didn’t scare anybody off egg freezing with the last description of how I was feeling…
I am literally forcing myself to type this right now because I feel so fucking weird that I know I need to document it while I’m in the moment. Days of feeling like this are awful but you tend to ride them out then forget about them. I haven’t blogged since my egg retrieval because I’ve literally been too tired to type. Here’s what I managed to jot down in my notes on my iphone when I tried really hard to concentrate on what I was feeling:
Sort of feel like there’s two of me – one inside the other but they’re disconnected. Pins and needs in left hand. Slight falling sensation or that my inner body is much further away from my outer skin. Inner eyeballs are further away from my real eyes. Everything feels far away. I feel weak within in my body and not grounded or connected. I feel lost and small inside myself, not outside of myself as people say sometimes. Loud Noises are too loud too much I feel overwhelmed by looking at my screen filled with emails or anything that requires too much thinking and processing. My vision starts to blur and warp. Left hand getting more numb.