What I Wish I Knew - What Education in Schools Means to the QENDO Community

By Team QENDO

On July 22nd QENDO and Pelvic Pain Foundation of Australia (PPFA) addressed a group of over 240 students at Brisbane Girls' Grammar for the first PPEP Talk® (Periods, Pain, Endometriosis Program) in Queensland. PPEP Talk® (Periods, Pain, Endometriosis Program) is currently being piloted in 10 Queensland schools. It was a history making kind of day, and an absolute privilege to witness. There is an excitement in forging a new path, in doing something that you know will make a difference, and it's an at times overwhelming feeling. The program educates secondary school students about pelvic pain, periods and endometriosis in a fun, educational and interactive way, and provides them the opportunity to seek ongoing support in their local area. The QENDO community has been excited about this program for some time, with many of us reflecting on how our own lives and endometriosis journeys may have been changed by education during our adolescence. While nothing will change our own journeys to diagnosis now, it means so much to so many of us to see that the next generation will be better equipped than we were. The importance of education, awareness and early diagnosis for endometriosis, as well as related conditions such as adenomyosis and PCOS, cannot be overstated. Changing a status quo that currently does not serve women in pain well at all is no easy task, but QENDO has over 31 years of experience in supporting women with this condition and we will continue to be part of change for the better.

The QENDO team below shares what they wish they had known in high school, and how much the schools program means to them.

"I wish I knew that not everyone was feeling what I was feeling. I had painful and horrifically heavy periods but assumed that everyone else felt the same and somehow their talent was hiding it - maybe I just hadn't mastered it yet. I wish I had known so that I could have fought harder to be treated and diagnosed instead of just 'sucking it up'. When I had my first surgery I cried to my specialist that I was more afraid of having nothing, because then I would feel as though it really was my fault, that I couldn't handle the pain. Education about endo and what constitutes a 'normal period' might have helped me think differently, and listen to my biology teacher when he told me that being in so much pain that you faint and throw up isn't normal! If the schools program means even one girl being able to stand up and say: I'm not okay and I need help, and getting that help, then I will know we have done our job." - Dannielle, Support and Blog Coordinator

"I wish my high school admin department was a whole lot more understanding when I needed them to call my Mum to come and collect me, or if I needed to lay down and have some time out." - Ash, Treasurer and Darling Downs Facilitator

"I wish I knew that painful periods were not normal. I remember wrapping my jumper around my waist to hide bleeding. The feeling of embarrassment was overwhelming when rather I should have felt supported by my peers and more so teachers" - Carmel, Events Volunteer

"I wish I knew it wasn't weak to be in pain. I was told it was normal to sit, squeezing your fists due to pain. Complaining or asking for help was a sign of weakness. I was not allowed to be seen as an issue or concern. I wish I knew I wasn't alone. I wish my teachers were aware too. I didn't know what was happening to me, but I wish someone could have seen what I was dealing with. I also wish that there was some kind of medical staff in school that could have helped - not just someone from admin who was trained in first aid. I remember once going to sick bay because I was bleeding insanely and not feeling like I could say anything, especially in front of the three other boys there - I just squeezed my legs together until Mum came to get me!" - Kristen, Fundraising Coordinator

"I wish I knew that even some of my closest friends where going through a similar experience, we just didn’t know it..because we never spoke about it!!" - Jessica, President

"At high-school age, I wish I knew that heavy painful periods aren't normal. That the contraceptive pill isn't a cure-all. I wish I knew much more about the reproductive system. But mostly I wish my teachers were much more accomodating for being late so I could go to the toilets in between classes without getting a late note. I wish I had teachers who would recognise a young woman struggling with her period then offer support and advice, or even a comfy spot with a hot water bottle. And I wish I was at a school who would provide sanitary products for free in the bathrooms so that I wasn't so embarrassed to take my bag/purse to the bathroom every hour or two and get teased about it. All of this led me to being teased, embarrassed, taking sick days, bleeding through and being mortified. I wish my daughter never feels so ashamed or embarrassed about her body by the time she is school age." - Jess G, EndoSister and Support Work Team

"I wish I knew about QENDO sooner! I spent ages trawling through the web looking for info and was so glad to have found a supportive, understanding group of girls to help me through!" - Isabella, Secretary

"I wish I knew that I wasn’t weak for feeling so much pain, I was actually really strong. I wish I knew that going through one maxi pad every hour wasn’t normal. I wish I knew that I could ask for help." - Sarah, Brisbane North Facilitator

"I wish we were taught that painful, heavy periods that made you miss school or bleed through your uniform weren’t normal. I wish pads and tampons were made easily available instead of crying in the toilets because I’d bled through all of mine; and that periods and discussing them were normalised amongst us. I lost track of the amount of times I had to run around to whoever I could find to ask if they had a spare pad or tampon to be told no. I was a pro at wearing my jumper tied around my waist to hide blood stains in my light grey school uniform." - Lauren, EndoSister Coordinator

"I wish I knew I wasn’t alone.I wish I knew it wasn’t “all in my head”. I wish I knew I was going to find a bunch of boss ass babes on similar journeys that would teach me to trust myself again and that there are options out there and people that are not ignorant and want to help." - Jaime, Vice President

"I wish I knew that severe period pain was not normal. I also wish that it was culturally acceptable to talk about this." - Vidya, Gold Coast Facilitator

"I always thought I was a bit weaker than most and just couldn’t handle normal period pain. I wish I just had information about all the symptoms that can come with [endometriosis] too, that it’s not just pain at that time of the month, but the fatigue, nausea, bowel symptoms etc." - Grace, Cairns Facilitator

Stay tuned on our social media for updates on the schools program and some of the amazing work our team is doing in this space. If you need immediate advice and support about endometriosis, call the 24/7 support line on 1800 FOR WOMEN (1800 367 96636)

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