Nikki Campbell, Endometriosis Nurse Coordinator, chose this topic for a recent support group presentation, to share valuable insights from people with endometriosis. These strategies highlight how creative and resourceful the endometriosis community is, with tried and tested ways to navigate endo from others with lived experience.
Thank you to everyone who submitted an ‘endo life hack’ to share with the JAECE community.
Presentation to Endometriosis Support Group, May 2023
Watch the full presentation to the JAECE support group, or keep reading for six useful tips.
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1) Prepare your recovery environment before endometriosis surgery
Nikki says the build-up to surgery can be long and afterwards, it’s common to experience a bit of a slump. “If we can get our mind, body, soul, everything ready, as well as our environment, that's going to help.”
Explore these practical tips for preparing your recovery environment for your return:
- Make time for mindfulness or relaxation activities in the weeks leading up to surgery.
- Put out clean PJs and clothes.
- Clean and tidy your space and make up your bed with fresh sheets.
- Have frozen meals available to heat up on low energy days.
- Wash your hair right before surgery and consider putting it in low maintenance braids.
- Consider who you want in your space in the first few days after surgery and who will be the most supportive and practically helpful.
- Think in advance about who will look after children or walk pets.
Nikki also shows a packing list example at 10 mins into the video.
2) Limit bending after laparoscopy
These items require planning before surgery.
- Keep and arrange things at waist height so you don’t need to bend down.
- A caddy or basket can hold essentials as you move from one room to another. For example, phone, medications, lip balm, face wipes to refresh yourself.
- Add a suction caddy for your shower so you don’t need to bend and pick up body wash, shampoo etc. There are attachments you can add to a tap to create a flexible, hand-held shower head.
3) Take the cognitive load out of managing regular medication
Your pharmacy can prepare your medication in a Webster pack – a pre-packaged weekly allocation of your medications. Or for more flexibility, dosette boxes (medication organisers) allow you to organise your medication by day, and AM and PM. If you’re away overnight, you can just take the days you need.
To remember to take medications, you could try a mobile app, such as Round Health, that notifies you with an alert when it’s time.
When preparing for surgery, make sure you have the scripts you need, and consider booking a GP appointment in advance for a week after the surgery.
4) See what’s available at your work or study place
Each role or workplace is different, but it can be useful to start a conversation about endometriosis with your employer. You may be eligible for some workplace modifications, for example, a more ergonomic chair set up or flexible working.
Safe Work Australia has a fact sheet tailored for employers: Supporting workers with endometriosis in the workplace.
Work-friendly endometriosis tips:
- Keep heat pads and a small supply of medication at work.
- Try out some work-friendly stretches for pelvic pain. Our Exercise and endometriosis support group presentation featured a pelvic physio showing examples – watch on YouTube from 17 min.
- Have some plain snacks on hand for high-nausea days.
- If possible, try to pre-empt your leave requirements and let your employer know.
- If you notice patterns of fatigue, try to schedule your meetings or classes for times or days of the week that fit in with your symptoms.
- If you can work from home, see if you can break up your days to match your energy levels.
Nikki said lots of people recommended sending resources to your team or boss to help them understand what you’re going through.
“Publicly, the societal understanding of endometriosis can often be very different to what we go through. If we can normalise our experience by saying a lot of other people go through this and it can be really severe, that can help as well.”
5) Check your Medicare Safety Net balance
You may be eligible to access higher Medicare benefits when paying for out of hospital costs.
The Medicare Safety Net applies when you have reached the threshold in gap or out of pocket costs in a calendar year (Jan – Dec). You would then start to receive an 80% rebate, instead of the standard Medicare rebate amount.
If you have Medicare, this is already set up for you. Simply view your threshold amount on the Medicare app or online account. It is also possible to register as a family and access a combined Medicare Safety Net.
6) Use an online resource to help a loved one learn about endometriosis
Maybe your friends, family or co-workers don’t quite understand endometriosis or how it impacts you. It can be so exhausting explaining this over again.
There are resources you can send to your loved ones to help them learn in their own time. It can be powerful for them to hear other people’s stories, without you necessarily needing to share yours.
- Julia Argyrou’s story – video and article
- Three women’s experience of endometriosis – video
- How to Endo - book by Bridget Hustwaite
- Endometriosis Guide by Epworth – an informational resource covering symptoms, diagnosis and treatment. – an informational resource covering symptoms, diagnosis and treatment.