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Hey EndoActivists,
Based on my little poll this morning and my need to connect with our community during these VERY STRANGE TIMES I will be using stories to document my time in self-iso during COVID-19 ‘lockdown’.

It’ll be some endo stuff, some random stuff...kind of like a personal vlog to stay in touch with you all and to have a way to STAY CONNECTED!

I’m open to suggestions on what to include day to day so feel free to DM me with ideas.

We can do Q and As, normal chit chat, endo advice, diet talk... whatever you want.

As you all know l, I’m an open book about endo lyf and personal stuff as well as anything EndoActive related OBVS.

HMU with your suggestions and let’s stay in touch during our self-iso!

All my love and to those of you who are in pain rn, I’m thinking of you, I’m sending you love and I’m encouraging you to get that hot water bottle on the tum, practice self-care and JUST DO YOU BABE ❤️❤️❤️❤️

Love, Syl
Cofounder EndoActive 😘
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Hey EndoActivists,
Based on my little poll this morning and my need to connect with our community during these VERY STRANGE TIMES I will be using stories to document my time in self-iso during COVID-19 ‘lockdown’.
It’ll be some endo stuff, some random stuff...kind of like a personal vlog to stay in touch with you all and to have a way to STAY CONNECTED!
I’m open to suggestions on what to include day to day so feel free to DM me with ideas.
We can do Q and As, normal chit chat, endo advice, diet talk... whatever you want.
As you all know l, I’m an open book about endo lyf and personal stuff as well as anything EndoActive related OBVS.
HMU with your suggestions and let’s stay in touch during our self-iso!
All my love and to those of you who are in pain rn, I’m thinking of you, I’m sending you love and I’m encouraging you to get that hot water bottle on the tum, practice self-care and JUST DO YOU BABE ❤️❤️❤️❤️
Love, Syl
Cofounder EndoActive 😘

Comment on Facebook

Syl have you got a filter going on there?

6 days ago

Rachel Langley

Katelynn Ward ... See MoreSee Less

Not believed. Belittled, insulted, sent home without treatment.
If you're preparing for self-isolation here's a book for you: "I Choose Elena" by Lucia Osborne-Crowley and previewed today in the Sun-Herald.
Sadly this story is familiar to many of us. You're not alone with Endo - this book is perfect for EndoAwareness Month.
... See MoreSee Less

Not believed.  Belittled, insulted, sent home without treatment.
If youre preparing for self-isolation heres a book for you:  I Choose Elena by Lucia Osborne-Crowley and previewed today in the Sun-Herald.
Sadly this story is familiar to many of us. Youre not alone with Endo - this book is perfect for EndoAwareness Month.

Hello EndoActivists:

We’re celebrating our March Endo Awareness with a huge surprise. ALL our Endo videos are now on our EndoActive YouTube Channel – FREE - thanks to a grant from the Australian Government Department of Health.
https://youtube.com/channel/…

Watch whenever you like and as many as you want - we're adding more each week of March.

We’re SO excited about this. Please SUBSCRIBE, leave comments and share the link with your friends.

https://youtube.com/channel/…

Our first fab videos include: Just Go and Have a Baby? by our own Syl Freedman, Endometriosis and Pelvic Pain by Dr Susan Evans, Hormonal Contraception and Endo by Dr Terri Foran, Endometriosis and Fertility by Dr Geoff Reid and A/P Michael Cooper, Digestion, Diet and Endo by Dr Rebecca Burgell.
... See MoreSee Less

Hello EndoActivists:
We’re celebrating our March Endo Awareness with a huge surprise.  ALL our Endo videos are now on our EndoActive YouTube  Channel – FREE -  thanks to a grant from the Australian Government Department of Health.
https://www.youtube.com/channel/UCx8KNOU4fdDHhAYiMAxhaQQ/videos 
Watch whenever you like and as many as you want - were adding more each week of March.
We’re SO excited about this.  Please SUBSCRIBE, leave comments and share the link with your friends.
https://www.youtube.com/channel/UCx8KNOU4fdDHhAYiMAxhaQQ/videos 
Our first fab videos include: Just Go and Have a Baby? by our own Syl Freedman,  Endometriosis and Pelvic Pain by  Dr Susan Evans, Hormonal Contraception and Endo by Dr Terri Foran, Endometriosis and Fertility by Dr Geoff Reid and A/P Michael Cooper, Digestion, Diet and Endo by Dr Rebecca Burgell.

Comment on Facebook

Awesome!

👍👍👍👏👏👏

This is AWESOME babes!! You ladies truly are a force to be reckoned with!

Great move, congratulations ! 👏🏽👏🏽👏🏽

Fabulous to have this resource. Congratulations on this initiative EndoActive. 💕💚

That’s great news !!❤️❤️

this is great!!

Hey EndoActivists. - help raise awareness of endo and support EndoActive at the same time - huge thanks to UbyKotex for this fab initiative.BIG HUGS to the #endowarriors in our community 💛 Tell us - what do you wish people knew about #endometriosis? Put it in the comments & let's help each other better understand what it's like to live with this condition 👇 #endomarchAUST ... See MoreSee Less

Hey EndoActivists. - help raise awareness of endo and support EndoActive at the same time - huge thanks to UbyKotex for this fab initiative.

Comment on Facebook

It's not just bad period pain. The effects can be multi-systemic and last month-long. And the debilitating fatigue.

The pain you get at any time of the month. There is no cure. It sucks. When you first find out you have endo your whole world crumbles. 💛💛

Life changing...this disease robs a woman’s ability to fall pregnant naturally. The one given thing that you can do as a woman is taken away. It brings with it heartache, despair, longing and sadness. Takes you on a journey of costly fertility interventions.

That a flare up can hit any time of the month. And last for half an hour to 3 days. Anytime in the cycle. Because I had 3 days off with my period due to pain doesn’t mean I won’t have a flare up the week after and need more time off. Its a constant thing. The fatigue on the whole body. Legs feeling like lead and can’t walk small distances without becoming out of breath and needing a rest.

Your constantly in pain and it never goes away , I hate it when people ask if I’m feeling better I just end up saying yeah because they would never understand, people just don’t believe you, that I’ve had 4 surgeries and I’m still not healed and I’m not allowed anymore either so just live with it

Why does the deep infiltrative endometriosis study cost $550...completely unaffordable

If endometrial tissue grows on your lungs it can cause monthly lung collapses. If you feel breathless up to 3 days after your period you may be having catamenial (monthly) pneumothoraces when the endometrial tissue sheds and allows air to escape from your lung into your rib cage. It might not hurt a lot, it feels like an air bubble in your chest, perhaps accompanied by a popping sensation, almost always on the right side. Sometimes it will resolve itself over a couple of days as the endometrial blob grows again and plugs the leak and the air bubble is gradually reabsorbed. However if your lung collapses over 50% it will need surgical intervention to drain the trapped air and allow the lung to reinflate. Long term you will probably need a major surgery to stop recurrence and/or something to stop your menstrual cycle. I am speaking from experience. This is described by medicos as "a rare condition" but my personal view is that it is underdiagnosed and is the number one reason for women 37-45 to experience spontaneous lung collapse ruling out smoking and impact injuries from accidents. Finally, you don't need to have symptomatic abdominal endo to have endo on your lung. In other words you may have had no history of regular endo symptoms like abdominal pain. If you get breathless after your period please look up Thoracic Endometriosis Sydrome (TES) and catamenial pneumothorax. Also, go to the doctor and request a lung xray when you are feeling breathless / a chest bubble after your period and let them know about TES because my experience is most doctors dont think of it at all.

That because endo effects every facet of your life, and doctors think your med chasing, they make you think your imagining your pain so then comes the anxiety and depression 😞 just another thing to deal with on top of the pain 😞

That it is a disease and is extremely debilitating, symptoms come on when they decide to come on - we can’t choose when to have a good day or a bad day. It’s life long, and people with the disease should be supported and monitored properly by doctors. It is so frustrating when others make out it’s your fault and you can choose when you have pain and the pain is just like a normal girls period. Yes things can help the pain with lifestyle changes but the pain is still always there. Much more awareness is needed for this horrid disease and so much more support is required for every poor girl/women diagnosed. Love to all the girls who have this disease or are still waiting to be diagnosed😰 ♥️

That using a hormone/ cycle tracking app and understanding the whole hormonal cycle can really help with understanding what’s going on with at least that (since endometriosis is so unpredictable). And writing down a health journal over a few months to track symptoms is also really valuable to help if you see any physical or mental health professional. And that the mental health impact of the disease can be huge.

It is real. It isn't 'period pain'. It is debilitating.

Janelle thought you might be interested in this

Fatigue! I'm not tired because I'm lazy, had too much sleep, had too little sleep or worked too hard. It just is what it is so please don't sigh everytime I say I'm tired. I don't want to be like this either 😣

It destroys your whole world and your soul

How anemic you can become, can never get on top of my iron because of extremely heavy periods

That it affects teen girls too! It doesn't discriminate based on age, it shouldn't be so hard to get a diagnosis or get into seeing a gynecologist. Its effect is debilitating and interferes in your everyday life!

That there is no cure.

It is a debilitating disease that can flare up anytime. It isn't 'just period pain'... It feels like someone is cutting your insides with a knife. There is no known cure.

And for people and employers, that this is real, to make people aware that this is a real disease , the pain, the stress. And to understand that, even after a full hysterectomy, this disease continues. The world needs you know about this disease, and that it is more painful than you could ever imagine. Information and knowledge, to be shared, understanding is what is needed. I have now lived with this for 21 years. We need to speak out. So people know, everyone. Not just women.

Pain!!!

That there is little or no relief from it. It's a 24/7 battle for many. That it's a fulltime job trying to stay well enough to function in the world. It's lonely.

How debilitating it can be . Just how hard it is to fall pregnant if ever fall pregnant. The heart break of it affecting your reproductive organs . How excruciating the pain can be , the surgeries you go through for laparoscopies etc are on going or more for ones who suffer severely, how it affects work & life in general. Each case is different to every woman suffering . Wish it was recognised and acknowledged by workplaces etc as a real disease. Show them how it encroaches and grows on many organs that micro endometriosis / endometrosis can't be removed in some cases . Some medications will shrink some but not all. See how the new script medication goes for our poor suffering sisters. Fingers crossed it helps , works and least side effects as possible. Women do not ask for this or want it ... it is great you are on the band wagon to bring this to the fore front . 🙌😊

💥ANNOUNCEMENT!💥

EndoActive has partnered with U by Kotex AUNZ to raise awareness of #endometriosis and fundraise for EndoActive during endo awareness month!

More info to come....

Head here for details on how to cast your vote for #endo awareness 🥰
https://www.ubykotex.com.au/shecanfund

Endometriosis.org

U by Kotex AUNZ
We asked our Aussie fam to tell us which causes you care the most about and WOW did you come thru 😍 Now comes the fun part: we’ve got $50,000 in our #shecanfund to split between LIVIN, Code Like a Girl and EndoActive Australia & NZ!! Add us on Snapchat 👻 (@ubykotexaunz) and click this link to learn more about how you can VOTE for these causes on 1st March 👉 T&Cs apply.
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Attention! March is #endometriosis Awareness Month. If you/your business wants to get involved & collab with EndoActive in any way, email syl@endoactive.org.au.

In previous years we have collaborated with U by Kotex, Mamamia and Neighbourhood Bondi.

As always, EndoActive needs funding! You can make a tax-deductible donation via our website.

Pls share or tag friends who may be interested.

Syl & Lesley Freedman <3
... See MoreSee Less

Attention! March is #endometriosis Awareness Month. If you/your business wants to get involved & collab with EndoActive in any way, email syl@endoactive.org.au. 
In previous years we have collaborated with U by Kotex, Mamamia and Neighbourhood Bondi.
As always, EndoActive needs funding! You can make a tax-deductible donation via our website.
Pls share or tag friends who may be interested.
Syl & Lesley Freedman
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