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What they don't tell you....

April 11, 2018

 

Meet one of our younger support group members, Celestia 'Rose'. Endometriosis rendered her unable to attend school and only able to study from home between flares. Rose's symptoms started at around 11 years of age when she had a whole term off school with a “mystery stomach bug”. She completed all of Year 10 with SIDE. 

 

Rose missed 90% of Year 9 due to a combination of the schools reluctance to offer other alternatives for education, her symptoms and her family being completely overwhelmed by the enormity of it all. Ironically in year 9 Rose sat the pay to enter ICASS tests. She obtained a Distinction in English for Australia which placed her in the top 3% for year 9 in Australia. She also received a “Credit” in Science which placed her in the top 25 in Australia for year 9! 

 

Rose's sweet smile and charismatic personality have lit up the room at several of our support group events.  Today she shares what endometriosis is to her.

 

'Endometriosis is a condition where the cells similar to cells from lining of the uterus grow outside of the uterus and in other areas of the body, and can cause pain, nausea, vomiting, heavy bleeding, and diarrhoea.

 

What they don’t tell you is ...

 

That endometriosis is trips to emergency at 3 in the morning.

 

That endometriosis is the hospital staff not being able to do anything for you and sending you home crying in pain. 

 

That endometriosis is having to explain it every time you mention it. 

 

That endometriosis brings responses of, “it’s just a period, take some Panadol and just get over it” after those explanations. 

 

That endometriosis is everyone saying, “My sister / aunt / grandmother / friend had that and she had babies perfectly okay” when you’re 16, 15, 14, and not even thinking about babies. 

 

That endometriosis is missing a week off school, which turns into a month, which turns into a term, which turns into three, which turns into you dropping out of school and doing it online because you just can’t walk that far every single day. 

 

That endometriosis is the school systems not caring, it’s getting absentee letters each day, it’s getting phone calls from the school despite you explaining why every single time. 

 

That endometriosis is getting stares, and whispers of “Why is she never here?” “Why does she always leave early?” “Why does she look so sick?” “Why is she carrying around a stuffed animal?” “Has she got cancer or something?”.

 

That endometriosis is traumatic, it’s seeing your body ripping itself apart and torturing yourself and even all the scientists not really knowing why. 

 

That endometriosis is feeling like you’re broken and useless and a burden, that it’s losing friends and apologising to your loved ones every time you have to cancel plans or have them take care of you or just have them comfort you and talk to you until you can sleep. 

 

That endometriosis can give you strength, can give you a community, an identity, a power, an ability to not take anyone’s sh*t anymore and an ability to love yourself.

 

That endometriosis can prove your relationships can last through almost anything, that people love you and care about you and want to be with you even when it’s 6am and none of you have slept and you’re covered in tears and blood and clutching a bucket on the toilet. 

 

That endometriosis can show you that you’re worth the pain, that you can make people happy, that your good times make up for all your bad. 

 

And that’s what endometriosis really is.' - Celestia 'Rose'

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