This year’s Endometriosis Awareness Month’s theme was “Let’s Talk Endo.” Every week throughout the month, we asked a different question to the Endometriosis New Zealand community. Read the below article to check out some of their many helpful answers!
Question 1: What is the one best thing you have done to help manage your endometriosis symptoms?
- “Finding what foods work best for me.”
- “Pelvic floor physio & less alcohol, gluten, refined sugar.”
- “Honestly my surgery and the IUD have both helped. Heat for pain and lots of rest and listening to my body.”
- “Drinking chamomile tea.”
- “Magnesium baths… and gentle massage.”
- “Ensuring sleep and rest is a priority.”
- “Nausea tablets.”
- “Laparoscopic surgery.”
- “Acupuncture.”
- “Primolut.”
- “Get a TENs machine!”
- “Pre and probiotics daily, exercise, and enough food, but surgery definitely helped, too!”
- “Dark chocolate and hugs, especially from myself!”
- “Not feeling guilty to take time off work to manage.”
- “CBD oil or balm.”
- “Seeing my osteopath regularly.”
- “Exercising when possible, eating healthier and looking after my body more.”
- “Put some socks on! [Keep] the feet warm to keep your uterus warm…!”
- “Lymphatic drainage massage.”
- “Full hysterectomy.”
- “Cerazette progesterone only pill works for me and I’m able to live a ‘normal life’. It’s wonderful!”
- “Being around family who support me.”
- “Utilising my wellness kit, no matter what stage I’m in… [This helps] me find my light.”
- “Botox injections.”
- “Rechargeable plug-in heat pack to use at work (office environment).”
- “Doing regular yoga & deep breathing exercises.”
- “Be consistent with water intake and eating 5+ a day (roughly) of fruit and veg.”
Question 2: In one sentence, what is a piece of advice you would give to those who have just been diagnosed with endometriosis?
- “Keep reading and teaching yourself. Don’t push your body when you are getting tired, focus on your health and your mental health!”
- “The diagnosis doesn’t end the pain but it is a milestone in the journey and worth celebrating. It helps you find others in the same boat!”
- “Share your story if you feel brave, you’ll be surprised to learn others have also been silently battling this too.”
- “Endo is an inflammatory disease – so do research and focus on ways to reduce your body’s inflammation as much as you can, diet etc, to help reduce pain!!”
- “Reach out to someone who has endo and if you don’t know of anyone then reach out to Endo NZ. Also do your own research and keep fighting until you get results even if it means having to pester your doctor several times! Don’t give up.”
- “[Know that] it’s not your fault!”
- “Surround yourself with an empathetic multidisciplinary team.”
- “Even if the pain becomes unbearable and you are told there are no other options – there are always more options. Seek 2nd, 3rd, 4th, 5th opinions until someone helps you.”
- “Your endo is part of you, and although it might not seem like it now, in time you can come to know it, work with it, befriend it and even love it.”
- “The diagnosis doesn’t end the pain but it is a milestone in the journey and worth celebrating. It helps you find others in the same boat!”
- “Don’t base medical choices/medications off Facebook reviews. Everyone is different!”
- “Don’t stop advocating for you and your health, even with a diagnosis!”
- “Consider natural medicines (like homeopathy).”
Question 3: How do you practice self-care and/or self-compassion with endometriosis?
- “I schedule a time in my day to read my book with a candle going and headphones.”
- “Monthly massage appointment – it’s my non-negotiable.”
- “Taking the meds! No shame in a little chemical help!”
- “I take myself to a cafe once a week and have a cheese scone and read my book. It’s good to take time out.”
- “Have rest days and take it slow. Have a bath and a cup of tea and do something I enjoy.”
- “Call my mum and have a yack!”
- “Grab a hot water bottle, relax in bed, and watch The Office!”
- “I live near a park, so for self-care I like to go for a walk around the park and admire nature. The greenery keeps me sane.”
- “Meditate.”
- “I take a second to acknowledge my feelings and tell myself that it’s okay to not be okay.”
- “I give my dog a big cuddle!”
- “Say no when I need to.”
- “Name something I’m grateful for.”
- “I write down everything I’m feeling in my journal. This gives me clarity about my emotions and is kind of like a wee detox.”
- “Hug someone I love to get all of those happiness hormones!”
- “Exercise every day, even on days when I don’t have the motivation. Five mins of gentle exercise is better than nothing!”
- “When I see my friends living their lives, working and thriving, it makes me feel “stuck” and worthless, like my life is wasting away. I find positive self talk and grieving the life I lost and wish I could regain is OK, and that I am doing the best and living the most to my abilities and capacity where my health allows. I am doing exactly what I should be doing, given the health situation I face, and that is living too. I call it loving differently and being at peace with that.”
Question 4: What is one thing you would like others to know about endometriosis?
- “The fatigue I experience is not like I had a late night or a super busy day or week! It’s different. I wish I was fatigued because of that!”
- “Endometriosis is a chronic systemic disease that goes beyond the pelvic region. It is certainly not just a bad period.”
- “Surgery isn’t necessarily for everyone.”
- “‘It’s just a bad period, and we all have periods like this sometimes!’ The amount of older gen woman and or teachers etc that said this. This statement is so, so incorrect and untrue.”
- “It’s a whole body disease – not just reproductive. It impacts everything. It can also be very isolating.”
- “Just because my ‘giving all I got’ looks different to yours doesn’t mean I am not trying or l’m ‘lazy.'”
- “It honestly sucks. And people don’t realise that this is a for life thing, they downplay it.”
- “Debilitating pain is not the only symptom.”
- “A hysterectomy will not cure endometriosis, it only cures adenomyosis.”
- “Masking discomfort is a thing, don’t be deceived by how well I am able to do tasks.”
- “You can have no symptoms at all!”
- “It can indirectly effect EVERYTHING you do/want to do.”
Question 5: What is one thing that has helped you manage endometriosis in the workplace?
- “Flexibility to work from home for a couple of days a week.”
- “Having a supportive boss! And supportive colleagues!”
- “Standing desks as an option to avoid the shooting pains when sitting down.”
- “Keeping painkillers and a wheat bag in my desk.”
- “Sharing fact sheets with managers.”
- “Ability to work from home and/or having a hot water bottle at my desk at all times.”
- “Bring a TENS machine, always having pain relief with me. It’s best when bosses or co-workers know and can be supportive, especially at times when you need to wear a TENS machine, use a wheat bag, hot water bottle, etc.”
- “My workplace provided education on endometriosis to employees during Endometriosis Awareness Month, which was really cool!”
- “A stash of painkillers, a hot water bottle and a place to lie down during my breaks.”
- “Taking my breaks! I used to feel bad about this, but now I look forward to my breaks and sitting down. I always bring snacks, too.”
- “The ability to modify my work uniform has really helped.”
- “My body temperature is always cold when I’m symptomatic so I used to take a thick outercoat to cover my legs for warmth.”
- “Communication with bosses about my condition and what support I might need. As well as a portable electric heat pack that fits discreetly under work clothes.”
- “Many may not be comfortable with this, but I have told my future employers about my endometriosis in the interview stage of applying for jobs. This has helped so much with setting expectations.”
- “Being able to reduce hours during a flare-up or when I’m on my period.”
- “I was able to have unpaid leave to manage my endometriosis. It’s so helpful to have this option!”
- “I’ve found that my workplace’s endometriosis support group has had such a positive impact on my experience with endometriosis at work.”