Celebrating our QENDO Nurses - Jess' Story

May 6-12 is Nurses' Week, with May 12th marking International Nurses' Day. Nurses are an incredibly important part of the endometriosis and adenomyosis journey, at all stages of the diagnostic and treatment process. It is nurses in emergency and primary care that can help spot the signs and symptoms of endo and adeno, it's theatre and ward nurses who care for us during surgery, and community nurses who continue to be part of our journey as we try new treatments. Nurses are particularly gifted with patient education and advocacy, and this is particularly true of the many nurses who volunteer their time with QENDO. At QENDO we are lucky to have nurses in our management team, our support team, and our education team, as well as in our community. They are committed to educating their colleagues about endometriosis and adenomyosis, to ensure the best care possible for patients. This Nurses' Week we thank them for their contributions to their patients and to QENDO. Jess O'Neill, a registered nurse from the Sunshine Coast, shares her experience of being a nurse with endometriosis. 

The nurses of QENDO (left to right): Lauren Iacobucci (Endo Sister Coordinator), Dannielle Stewart (Support Coordinator/Blog Coordinator), Jaime White (Vice President), Jess O'Neill (Sunshine Coast Education Coordinator).

Not pictured: Belinda Connolly (Education Officer), Stasi Knight (Education Officer), Ash Holmes (Support Work), Jessica Unterrheiner (Support Work). 

I went into nursing because, as corny as it sounds, I wanted to help people, as well as having the option to travel the world, and the job security nursing offers. Mostly, though, I just wanted to try and make a difference. I quickly learned nursing is so much more than just caring for patients, we are professionals in our own right who make assessments, think critically and make decisions that impact our patients and their families' lives. Here’s the thing though: university teaches you pretty much all the basics of nursing including the history of the profession and your basic clinical skills like observations, how to look after patients basic care needs, assessments, administering medications etc. However we also learn anatomy, physiology, pathophysiology, pharmacology, and drug interactions because even if your doctor wrote it up wrong, if we administer it ultimately it's our responsibility as nurses - we answer for it. On top of this we do hours and hours of clinical placement unpaid so by the time you finally get that degree 3 years later you feel like you know it all... that is until you step into the real world.

When I first graduated jobs were scarce, nurses were being sacked not hired. A year or so later I scored a temporary graduate support contract in an emergency department - my dream job! I was so excited and in hindsight extremely naive. I quickly realised realistically i didn't know much at all and I had a lot to learn. It's kind of like being thrown in the deep end and learning how to swim mixed in with some deer in the headlights moments (ok a LOT of those moments). I also realise that if you sucked at setting up drips, or any skill as a student, just because those two letters after your name have changed to RN instead of SN you will still struggle. You'll watch colleagues do tasks that take you 5 minutes done in 2 minutes, you'll see them expertly manage their time, respond to patients deteriorating all whilst probably on their 3rd night shift in a row, knowing they've only slept 3 hours the day before. Yet they still find time to provide care that their patients need as much as their midnight IV medication. Meanwhile I was trying to get all my assessments and medications done, apologising to my senior staff for being slow and my patients for a slightly delayed medication and all the while feeling guilty that I didn’t have time to stop and provide the care i so wanted to - the kind my patients deserved. Other tasks all took priority, whilst adjusting to full time shift work and living out of home for the first time - it's a whole new world out there. When I did get that time to provide care, like simply stopping and talking to patients, I realised how much of a difference it makes to not only them, but me. Again it's corny, but one patient saying a genuine thank you or giving me a hug even if I'd had the worst day/week made worth it. I also learnt experience makes you quicker, more efficient and leaves you time to provide that care which over the few following years I'd realise how much it makes a difference.

I'd been pretty healthy most of my life but in 2015, 3 months shy of finishing my first year as a nurse, just a week or so after my second contract, this time on a ward, had ended I started to experience some of the worst abdominal pain I'd ever experienced. Initially I thought it was something I ate or possibly appendicitis but when all my tests came back clear and I was still in pain I just wanted answers. Over the next 3 months I would see my GP (who was amazing, luckily) minimum once a week, if not multiple times a week, visit the emergency department multiple times during this time and be admitted privately for more investigations. What stood out though was the staff, especially nurses; pain is subjective, no one could see my pain they just saw my test results and in emergency I saw doctors and nurses' attitudes change when all my tests were normal and suddenly it was like I was faking it or trying to get drugs. I know because admittedly in the past I'd probably done the same thing at least once! It made a difficult time so much harder; the difference a caring nurse or professional made that simply listened and believed me was huge, I kept thinking who'd want to experience pain like this?!

Finally after a particularly bad flare up that saw me admitted to hospital my GP realised endometriosis was most likely the cause and immediately referred me to a gynaecologist. The gynaecologist trialled me on the pill and when the pain wasn't improving after 4-6 weeks booked me for surgery the very next week. I would turn out that I had endometriosis growing on my right ovary and fallopian tube essentially pulling it down and also on a spot in the Pouch of Douglas. At last I had an answer and a reason for all my pain - I wasn't crazy there was a legitimate reason! I wanted to take that report to every person who'd doubted me and prove to them there was a cause! Admittedly at the time, even in 2015, I didn't know much about endo and there was next to no media attention or awareness. Like most I attributed the painful periods I'd experienced my whole life to normal period pain - turns out endo was to blame. 3 weeks after surgery I got a new job and started working about 2 months after surgery, I was completely pain free. I had my 2nd laparoscopy in 2018 and whilst no new lesions were found my specialist believes that there may be lasting effects from its previous presence, so still believes endo to be part of the problem. But this second experience gave me the desire to help others going through this and I'm now an education coordinator and Endo Sister with QENDO, which has allowed me to meet and become friends with some of the most incredible, inspirational and supportive women I've ever met all who share a common understanding and passion. They are without doubt one of the best parts to come from this endo journey.

The other part? That my experience has without doubt made me a better nurse. I am more empathetic to those in pain, I believe them and try and listen to their concerns and advocate for them, especially when the cause of their pain isn’t obvious. I also educate women about endo and through having that conversation I've had colleagues/patients say: "I have that" or ask for me for more information. One of my first patients I looked after when I returned to work post 2nd laparoscopy had just come out of theatre after having the exact same operation I'd had weeks earlier and she had a lot of questions. Unless I'd experienced something similar I probably wouldn't have been able to understand and answer as in-depth as I did; her mum later came up and thanked me. So whilst there aren’t many positives to endo and I have struggled at work, I have and will likely need days off in the future due to pain, and  yes it will most likely continue to impact my career in someway- I choose to focus on the positives no matter how small they are and be that nurse who listens and believes rather than assumes. Because I know it does make a difference.

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