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This is a question I’ve learned to ask myself ALOT over the past 6 years, since I was diagnosed with endo at age 21.🎃

It took me a while time to drop the whole, “why me” “my life sucks” “I’ll never amount to anything” attitude. But once I did, life got easier and being sick got a hell of a lot easier and... how can I put this... not ‘more enjoyable’ but... more manageable, more doable, more peaceful, less upsetting, no longer traumatic, and just.... a more calm experience once I learned to accept what was happening in the moment, go with it, do everything in my power💪🏼 to be well and reduce my pain and beyond that, just think “well, I’m here, I have to wait it out and ride the wave of pain and sickness til it subsides, so while I’m here, I’m not going to panic, I’m still going to make myself laugh, and best of all, I’m going to LEARN something.. anything !”🤓

Women need each other’s support and validation. Endo is REAL! It hurts. Man does it hurt. 😫But it can teach us things we otherwise wouldn’t have known.😯

What has #endo Taught you? Have you noticed an attitude shift since your diagnosis or is the “why me” still something you’re grappling with? 🤔

Let’s share stories, let’s get out of our own heads, let us break some proverbial (gluten free) bread with our epic Endo Girl Gang on this beautiful Thursday morning (I say while lying in bed with a heat pack on my tummy due to EXTREMELY random endo pain and a double eye virus, squinting at my phone, which I will now put down as I can barely see.)

If any of you, our #endoactive #girlgang have tips for each other on mentally or emotionally dealing with #endometriosis and all the things that come with #chronicpain and #chronicillness, please share below. You might just change another person’s outlook. What has your experience taught you? What does it continue to teach you?

Sing it, sisters... ❤️👊🏽

Syl xx
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This is a question I’ve learned to ask myself ALOT over the past 6 years, since I was diagnosed with endo at age 21.🎃

It took me a while time to drop the whole, “why me” “my life sucks” “I’ll never amount to anything” attitude. But once I did, life got easier and being sick got a hell of a lot easier and... how can I put this... not ‘more enjoyable’ but... more manageable, more doable, more peaceful, less upsetting, no longer traumatic, and just.... a more calm experience once I learned to accept what was happening in the moment, go with it, do everything in my power💪🏼 to be well and reduce my pain and beyond that, just think “well, I’m here, I have to wait it out and ride the wave of pain and sickness til it subsides, so while I’m here, I’m not going to panic, I’m still going to make myself laugh, and best of all, I’m going to LEARN something.. anything !”🤓

Women need each other’s support and validation. Endo is REAL!  It hurts.  Man does it hurt.  😫But it can teach us things we otherwise wouldn’t have known.😯

What has #endo Taught you? Have you noticed an attitude shift since your diagnosis or is the “why me” still something you’re grappling with? 🤔

Let’s share stories, let’s get out of our own heads, let us break some proverbial (gluten free) bread with our epic Endo Girl Gang on this beautiful Thursday morning (I say while lying in bed with a heat pack on my tummy due to EXTREMELY random endo pain and a double eye virus, squinting at my phone, which I will now put down as I can barely see.)

If any of you, our #endoactive #girlgang have tips for each other on mentally or emotionally dealing with #endometriosis and all the things that come with #chronicpain and #chronicillness, please share below. You might just change another person’s outlook. What has your experience taught you? What does it continue to teach you?

Sing it, sisters... ❤️👊🏽

Syl xx

 

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Diagnosed at 19 after years of pain and confusion. After my laparoscopy I had awful fatigue and anxiety, the thing that’s helped me the most is yoga. Mentally it has completely changed my state of mind (goodbye panic attacks), and physically I am much healthier and fitter than ever (after spending a year basically bed ridden). It’s also given me a purpose to get out of bed and I’m now doing my teacher training to spread the love and knowledge 🙏💖

Professionally, it’s helped me a lot ! As a nurse, I am much more knowledgeable about endo/adeno and chronic pain. I also am more empathetic to women having trouble with conception, undergoing IVF and early pregnancy loss.

Can I share this please??

I think this is an awesome point, thanks for sharing. For me, I realized that I was losing energy and focus trying to control something I couldn't. My Endo is never going to do what I tell it, so it was a wasted effort. Once I decided to accept that, I was able to put my focus and energy into the things I could control and that made me happy. I haven't looked back since 😊

I have had symptoms since about 13 and wasn't diagnosed until 22. I have also grappled with mental illness and so for many years while I was a teen watching others succeeding I was resentful. I was so spiteful it started effecting my relationships with others. I haven't been able to manage much study and I haven't worked since I was pregnant with my first BUT... I have honed my baking skills, learnt meditation, do hot yoga despite having hated my body for years, I am learning to sew and many other crafty things. Endo has taught me that maybe it is ok just to BE a Mum, a wife, a daughter, a sister... I have learnt to be more patient with myself and others. This is my life and I am learning to love it despite my illnesses.

Omg I relate to every word you have written!! It switched for me when I realised how much my nearest and dearest were affected by seeing me repeatedly so unwell together with my negative outlook on my future. I was being a miserable and was in denial for a long time. It took some time to come to terms with what it meant and to even fully understand the disease I was diagnosed with. I felt I had been cheated of things I was entitled to. The penny dropped when I hit a new low point a few days after my second laparoscopy. Laying in my hospital bed feeling alone, I thought well fk me, I can't wee I can't poo I can't eat without vomiting it up an hour later. I was hallucinating on morphine and talking to strangers in the room. What the actual Fk. Well then, where to from here? I said to myself. Onwards and upwards is the only way forward. I was petrified of what would happen if I fell down again. Could I get back up from this hell? Every day from then on, I've been determined to fight harder, be more accepting, love more, listen to my body, treat myself better and get more quality out of my life. The cards were dealt, your hand is yours, so that's it. Play your cards, don't hold them close for too long. Ride out those storms. Hug lots xxx I'm stronger than ever. Be more awesome 💛💝💪 #endoactive #endometriosaustralia #endowarrior

Hope you are feeling better Syl 🙂 I have always believed if you have something to focus on that makes it worth getting out of bed even when you can hardly move then you are winning 💪🏆 I know myself enough to know if I am allowed to feel sorry for myself or imagine all the bad things that can happen then I would be writing a best selling book 😜 I use a lot of grounding exercise and mindset - which I actually believe is helping now, while I have been pain free for 5 months, and got diagnosed with aggressive breast cancer, yes I had a couple of days where I was ready to do harm to anybody complaining about 1st world problems....but I am back on track, I am working, been through 2 rounds of chemo (got 2 to go), scheduled for surgery end of August and again in September to have the last ovary removed ( due to very risk of ovarian cancer ). As I see it you have 2 choices 1) laugh or 2) cry, I will any day chose LAUGH, it gives energy, it reminds you of the good days (if you are having a bad day) & makes me feel alive! I learned a year ago about JFDI = Just Fokus & Do It 💪👍🙂 it works for me ❤

I was diagnosed at 19...lost count of how many laparoscopies i've had and also having PCO... the support from my family, friends and boyfriend (and work- im a teacher) have been amazing. The thing that has helped me mentally and physically is being active as much as possible (when not in pain): walking my dogs, weight sessions and bike riding (i have been pretty slack lately though).

Not so much with my endo and PCS, but just the unrelenting wave of bad luck that is my life.

Lauren Vogt

Rachel Heslington

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"It all began for Sylvia Freedman when she got her first period.

“I was spoilt rotten. My Mum even threw a period party for me with all the women in my family. I felt quite proud that I was maturing.” “Back then, all the girls in the year above had had their periods so I felt like: yes! I’m in the club.”

But Freedman wasn’t in the club."

Really proud of this one. Counting down the days til the launch of the National Action Plan for Endometriosis!!!! Due to be launched end of this month.

Hopefully my viral eye infection, which has now spread to both eyes, is gone by then. Can’t see properly. No more phone, tv, laptop or driving for me today #ouchies !

Once again, huge thanks to author Hannah Bent for raising awareness!! ❤️❤️ Great article on #endometriosis by Hannah Bent for Neighbourhood Paper ❤️

THANK YOU FOR BEING PART OF OUR CAMPAIGN TO GET #endo OUT THERE!!!

Syl xx

https://neighbourhoodpaper.com/issues/…

#endo #endoactive #chronicillness #periods #endopain #chronicpain #chronicillness #guthealth #periodproblems #periodpain #pelvicpain #womenshealth #girlpower #nationalactionplanforendometriosis #greghunt #ace
Gai Brodtmann Greg Hunt MP Julian Leeser MP Dr Mike Freelander MP Nicolle Flint Member for Boothby Nola Marino MP
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It all began for Sylvia Freedman when she got her first period. 

“I was spoilt rotten. My Mum even threw a period party for me with all the women in my family. I felt quite proud that I was maturing.” “Back then, all the girls in the year above had had their periods so I felt like: yes! I’m in the club.” 

But Freedman wasn’t in the club. 

Really proud of this one. Counting down the days til the launch of the National Action Plan for Endometriosis!!!! Due to be launched end of this month.

Hopefully my viral eye infection, which has now spread to both eyes, is gone by then. Can’t see properly. No more phone, tv, laptop or driving for me today #ouchies !

Once again, huge thanks to author Hannah Bent for raising awareness!! ❤️❤️ Great article on #endometriosis by Hannah Bent for Neighbourhood Paper ❤️ 

THANK YOU FOR BEING PART OF OUR CAMPAIGN TO GET #endo OUT THERE!!! 

Syl xx 

https://neighbourhoodpaper.com/issues/dealing-with-it-endometriosis-affects-one-in-ten-women/

#endo #endoactive #chronicillness #periods #endopain #chronicpain #chronicillness #guthealth #periodproblems #periodpain #pelvicpain #womenshealth #girlpower #nationalactionplanforendometriosis #greghunt #ace 
Gai Brodtmann Greg Hunt MP Julian Leeser MP Dr Mike Freelander MP Nicolle Flint Member for Boothby Nola Marino MP

 

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Get better Syl.....I have a chest infection, so i am trying to rest up like you....been working on the lap top all day & signing off. too tired to sit up right any longer

As you probably know, #endometriosis and any other #chronicillness or #autoimmunedisease affects the IMMUNE SYSTEM.👈🏼‼️

Whether it is the disease or illness that is weakening the immune system or the weakened immune system causing the disease... well, it’s a chicken and egg situation and in the case of #endo, nobody knows which comes first.👀

Either way, it is so important to strengthen your immune system and reduce inflammation and digestive disorders so that your body has a better chance of staying healthy and keeping endo pain and symptoms at bay.👌🏼👊🏽

I take Visanne for endo pain because it reduces the size of endometriosis lesions, thus reducing the need for surgery. I’ve taken Visanne daily since 2015 and for me, it works brilliantly.👏🏼

I basically live a pain free life after YEARS of #chronicpain , which is so wonderful.😊❤️

BUT unfortunately my immune system is still crap.😒

I stick to a #antiinflammatorydiet which also works wonders for #endopain and #guthealth. 🥥🥑🥦🍳🥗🍱If I don’t eat right, I’m really in bad shape.🤤😴🤢😵

Pictured are all the supplements I take daily to support my immune system.

Strangely though, this doesn’t seem to be enough.🤨

I had a couple of great months this year but the past month or so I’ve been getting virus after virus and random days of #fatigue.😴

I can’t go on like this and although I lead a healthy lifestyle, being sick and tired is really getting in the way of my work and my #mphil #thesis.💻📚

I’m going back to the doctor and will start looking into other specialists who focus on immunology and perhaps endocrinology in Sydney because I DON’T KNOW WHAT ELSE TO DO!!! 🦑

Take care, EndoActivists ‼️🥑🎧

❤️❤️❤️Syl xxx
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As you probably know, #endometriosis and any other #chronicillness or #autoimmunedisease affects the IMMUNE SYSTEM.👈🏼‼️

Whether it is the disease or illness that is weakening the immune system or the weakened immune system causing the disease... well, it’s a chicken and egg situation and in the case of #endo, nobody knows which comes first.👀

Either way, it is so important to strengthen your immune system and reduce inflammation and digestive disorders so that your body has a better chance of staying healthy and keeping endo pain and symptoms at bay.👌🏼👊🏽

I take Visanne for endo pain because it reduces the size of endometriosis lesions, thus reducing the need for surgery. I’ve taken Visanne daily since 2015 and for me, it works brilliantly.👏🏼

I basically live a pain free life after YEARS of #chronicpain , which is so wonderful.😊❤️

BUT unfortunately my immune system is still crap.😒

I stick to a #antiinflammatorydiet which also works wonders for #endopain and #guthealth. 🥥🥑🥦🍳🥗🍱If I don’t eat right, I’m really in bad shape.🤤😴🤢😵

Pictured are all the supplements I take daily to support my immune system.

Strangely though, this doesn’t seem to be enough.🤨

I had a couple of great months this year but the past month or so I’ve been getting virus after virus and random days of #fatigue.😴

I can’t go on like this and although I lead a healthy lifestyle, being sick and tired is really getting in the way of my work and my #mphil #thesis.💻📚

I’m going back to the doctor and will start looking into other specialists who focus on immunology and perhaps endocrinology in Sydney because I DON’T KNOW WHAT ELSE TO DO!!! 🦑

Take care, EndoActivists ‼️🥑🎧

❤️❤️❤️Syl xxx

 

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Have you tried Metagenics Five Mushroom Extract? It was recommended to me before i had my endo surgery by a naturopath who soecialises in endo.

I saw an endocrinologist last week who unfortunately had no answers. "Maybe you're stressed?" 😩 Thanks for nothing mate!

Hope you find more answers with Endocrinology!. Ive tried that Visanne didnt work ive done all that food diet too...and tried supplements and naturopath. I think everyones body responds differently too 🙁

LBC may help you with pain management, better quality sleep and clearer thinking. Happy to share information.

Vitamin B is you best friend girly ... you need energy plus a good immune system .... I an an endo sufferer and a pharmacist so constantly being coughed and sneezed on and exposed to all of the bugs going around. What me and all the people at my work take is bioceuticals armaforce, and ethical nutrients everyday stress formula (your vitB+immune support). I also have very poor lungs so I take olive leaf extract liquid everyday too .... vitamin C in tablets also is near impossible for our gastrointestinal system to digest so wouldn’t bother with them much, you are better off swallowing your tablets with a glass of OJ, you’ll absorb way more from this 🙂

Why would boosting an overactive immune system help? Inflammation is part of the immune response.

Living with chronic illness is a lifelong thing. I get so tired of all the extra effort I have to put into because of endometriosis. But it's necessary.

In the Endometriosis Australia there is links to research papers. The most useful of which suggested Curcumin - might be worth adding into the mix as a supplement. Also, for tired people with sensitive guts, I have found Basica to be the most effective magnesium for me but it is not over the counter. Anyone with brain fogginess, I have found the biggest change has been removing all forms of onion and garlic, shallots etc from my diet. Now that it is gone, the impact is huge when I accidentally eat it! Now that I have gotten rid of it, I’m finding bread etc aren’t a problem! Hope this helps

Chronic pain (and everything that sneaks in under its cloak) and post-grad study are the crappiest bed-fellows. Of any area of my life that endo has affected (finance - loss of income and extra expense are a given), the impact on my ability to pursue my research interests has distressed me the most and mostly deeply challenged my sense of self..... second only to leaving me unable to be a mother.

If you find the key post it FAST! Every time I see someone that's my question - what can I do to help avoid the months of infections stemming from the mildest of head colds. Surely there must be something. Avoid sick people and your children is the best I've had 🙁

Interesting you find the diet so helpful. I didn't find much effect from steps like avoiding wheat and dairy. Certainly felt better overall (not specifically in relation to endo) after cutting out artificial colours and flavours though.

It would be interesting to see what support you get from an endocrinologist. Even with my confirmed a Hashimoto’s Disease last November, my endocrinologist didn’t care about the deterioration of my health, only that my Eutroxsig put my levels in (barely) normal range. Working with an intergrative GP has given me better results, though the cost is ridiculous. My last surgery has reduced a lot of my Endometriosis side effects, I’m hoping it stays that way for awhile.

When I had chronic fatigue I had a cold/flu every two weeks on the dot. Was on so many vitamins purely to shorten the length of the cold 👎🏼

Not everyone can have them but i've found IV Vitamin C to be very helpful when my immune system is down as i struggle with vitamin c tablets, b12 injections and after alot of failed attempts my naturopath got me onto this wonderful vitamin b supplement that doesnt effect my digestive system called Bioactived B by Biomedica I've found those three things to help a fair bit 🍀🍀🍀

I’ve been taking KI immune defence, magnesium and a b vit combination. I’m hoping my integrative gp will suggest something better as I’m still in pain and the brain fog.... urgh! 😩

I hope your doctor can help. Good health food/supplement shops have some great immune booster vitamins or tonics I’ve taken before. My doctors also given me a series of vitamin B12 injections when I’ve been really low xxx

What about extra zinc? Found its helped me.

Good to hear you are taking power back and expecting specialists to do some research. I'm so sick of lazy drs and specialists! !!

Fay Nicholas read this! Sounds like me hey... think I need to get some supplements and start working on my immune system

Chloe Ryan

Debra Lynch

Jaycee thoughts?

Sareena Makirii

Erica

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Whattup EndoActive Girl (and some guys) Gang, how you do? 😎

I am completely, absolutely, wholeheartedly podcast obsessed. I’ve been this way since my second #endometriosis Surgery when my Dad got me hooked. I was in hospital having my 2nd laparoscopy and going MENTAL with crap tv, (no such thing as Netflix!) and I couldn’t read due to exhaustion and opiates making my eye sight wobbly. Also exhaustion. 😑

He introduced me to @thisamerlife This American Life and I fell in love with the world of podcasts, just as I had fallen in love with storytelling through cassette tapes when I was a little girl.😇

I listened to my cassettes every night to get to sleep... Enyd Blighton, the Magic Faraway Tree and Snugglepot and Cuddlepie.🤗 There is just something so soothing about someone reading you a ‘story’ as you’re lying in bed tucked up beneath the doona.

I just adore it.😍 Even when that story is about a family mass murder, which is slightly odd... but there you have it. 🔪😕 I got heavily into true crime podcasts a while ago and this is one of my faves.

Is it super sad that as I’m getting into bed on a Saturday night extremely early and I know Casefile normally drops a new ep on sundays but I decide to check anyway and THERE IS A NEW EPISODE AND I LITERALLY LOSE MY SHIT I’M SO EXCITED !!!???! Nah. I don’t think so.

#crapimmunesystem and #chronicillness got me inside all weekend so I’m devouring podcasts. TV is too passive for long periods of time and you can’t use your imagination as much.

What pods are you obsessed with? Love finding newbies. Will keep posting my faves on here.

Night everyone ❤️❤️❤️Syl

#endo #endoactive #endofatigue #endogirlgang #endoactivegirlgang #truecrime #podcastlife #casefilepodcast #casefile
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Whattup EndoActive Girl (and some guys) Gang, how you do? 😎

I am completely, absolutely, wholeheartedly podcast obsessed. I’ve been this way since my second #endometriosis Surgery when my Dad got me hooked. I was in hospital having my 2nd laparoscopy and going MENTAL with crap tv, (no such thing as Netflix!) and I couldn’t read due to exhaustion and opiates making my eye sight wobbly. Also exhaustion. 😑

He introduced me to @thisamerlife This American Life and I fell in love with the world of podcasts, just as I had fallen in love with storytelling through cassette tapes when I was a little girl.😇 

I listened to my cassettes every night to get to sleep... Enyd Blighton, the Magic Faraway Tree and Snugglepot and Cuddlepie.🤗 There is just something so soothing about someone reading you a ‘story’ as you’re lying in bed tucked up beneath the doona. 

I just adore it.😍 Even when that story is about a family mass murder, which is slightly odd... but there you have it. 🔪😕 I got heavily into true crime podcasts a while ago and this is one of my faves.

Is it super sad that as I’m getting into bed on a Saturday night extremely early and I know Casefile normally drops a new ep on sundays but I decide to check anyway and THERE IS A NEW EPISODE AND I LITERALLY LOSE MY SHIT I’M SO EXCITED !!!???! Nah. I don’t think so.

#crapimmunesystem and #chronicillness got me inside all weekend so I’m devouring podcasts. TV is too passive for long periods of time and you can’t use your imagination as much.

What pods are you obsessed with? Love finding newbies. Will keep posting my faves on here.

Night everyone ❤️❤️❤️Syl

#endo #endoactive #endofatigue #endogirlgang #endoactivegirlgang #truecrime #podcastlife #casefilepodcast #casefile

 

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I might sound dumb but where do you download the podcasts from to listen to them ? And are they expensive ?

Podcasts are amazing, I’m building up episodes at the moment for my surgery towards the end of the year. Suggestions are: Wilosophy TOFOP The Little Dum Dum Club Bang On Mamamia Out Loud No Filter The Guilty Feminist Chat 10 Looks 3

Have you listened to 'the teachers pet'? A true crime podcast that really draws you in and there's currently 9 eps you can listen too 🤗

100% recommend Red Handed too. Two girls doing true crime - it's FABULOUS.

I love true crime shows so I downloaded it last night and just listened to the first podcast this morning. So many of the titles I recall having watched docos on, but will be interesting to hear from another perspective anyway. Thanks Syl!

Someone knows something, Australian true crime with meshel Laurie and Emily is awesome, leviathan chronicles is starting again and is an excellent production, bronzeville and crimetown are a good selection. Some are straight podcasts and some are productions with great actors in them. Parcast also has some great podcasts

Morgan Walsh some crime podcasts here that may not be as long

Spilled milk is awesome. And the one part podcast by fellow stage 4 endo sister Jessica Murnane is phenomenal.

I also really got into audiobooks during my surgery recoveries and after, and especially love Harry Potter read by Stephen fry.

Syl, for more of the true crime genre try: Felon (similar to Casefile) Sword and Scale Phoebe’s Fall

Reply All, Homecoming, Serial (season 1 obvs), heavyweight, family ghosts, crimetown, basically anything gimlet media (science vs has an Aussie host), Dirty John, radiolab, more perfect, and as an expat living in Canada ill listen to like a version and dr Karl. Found, the fridge light if there’s nothing else to listen to (I listen to and from work every day...)

Syl you might have listened to ‘The Real Thing’ episodes? (Episodes ‘Dirty John’) seeing you enjoy crime stories. xx

I’m the same way and was as a kid too ☺️ I got into them when I used to live by myself but then they became even more needed when I had my first hospy stay and diagnosis ♥️

Hardcore history (blueprint for Armageddon)...best voice, The Moth, Where do we begin? (Esther Perel). My latest faves 😸

I love casefile!! Caliphate is fantastic, definitely worth checking out

We listen to casefile podcast on road trips. I am a true crime addict. Haha

Love Casefile !!!! True Crime Garage and Hollywood Crime scene are other faves 😃

I love My Favourite Murder - so I’ll try this one next ❤️

Love this podcast too! Small town murder is also super awesome 🤗

Current obsession - The Teachers Pet 😱

True crime island ❤️❤️

My fav murder is amazing!

The teachers pet! 😊

My favourite murder 🙌🏽

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I JUST CAN’T SEEM TO STAY HEALTHY 🤨

I had big plans for this week. 2/7 days amazing. 5/7 in bed.

Wondering how I’ll ever write my thesis written if this keeps up 😒

Starting to feel like the old days... not with endo pain thank heavens.. but the crappy immune system, the fatigue and the little random ailments that have you sounding like a freak.

WHY ARE ALL MY TASTEBUDS SWOLLEN AND SORE AND MY TONGUE FEELS TOO BIG FOR MY MOUTH AND MY ENTIRE MOUTH ACHES AND STINGS AND I’M GETTING ANOTHER COLD SORE AND I HAVE PINK EYE AND NOW I HAVE TO EXPLAIN YET AGAIN WHY 2 WEEKS HAVE GONE BY WHERE I’VE BARELY GOT ANY WORK DONE!

Although at home I’m not complaining about my ailments at all and just chilling and resting, when you have to give excuses to your boss/supervisor/employer or whoever it is... the genuine reasons you’ve been unable to work just start to sound like the lame excuses of a chronic complainer. Ya feel me?!

This is the part I hate the most about #chronicillness. Not the pain, the time off, the sickness etc... but the explaining and the feelings of failure and the anxiety over what people must think of me.

I really, REALLY hate that part.

BUT still grateful for the things I have... wonderful friends, beautiful family, lovely home, comfiest bed, access to great healthcare (just not great health 😉🤪😜) access to education and so so so much more.

Trying to look on the bright side through the rose coloured lens of my pinkeye 😍

Anyone else doing their best to stay healthy and can’t catch a break for very long? ❤️ How do you cope?

Syl xx

#endometriosis #endoactive #endo #endofatigue #pinkeye #pinkeyesucks #crapimmunesystem #chronicillness #endogirlgang #endoactivegirlgang
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I JUST CAN’T SEEM TO STAY HEALTHY 🤨

I had big plans for this week. 2/7 days amazing. 5/7 in bed.

Wondering how I’ll ever write my thesis written if this keeps up 😒

Starting to feel like the old days... not with endo pain thank heavens.. but the crappy immune system, the fatigue and the little random ailments that have you sounding like a freak.

WHY ARE ALL MY TASTEBUDS SWOLLEN AND SORE AND MY TONGUE FEELS TOO BIG FOR MY MOUTH AND MY ENTIRE MOUTH ACHES AND STINGS AND I’M GETTING ANOTHER COLD SORE AND I HAVE PINK EYE AND NOW I HAVE TO EXPLAIN YET AGAIN WHY 2 WEEKS HAVE GONE BY WHERE I’VE BARELY GOT ANY WORK DONE! 

Although at home I’m not complaining about my ailments at all and just chilling and resting, when you have to give excuses to your boss/supervisor/employer or whoever it is... the genuine reasons you’ve been unable to work just start to sound like the lame excuses of a chronic complainer. Ya feel me?!

This is the part I hate the most about #chronicillness. Not the pain, the time off, the sickness etc... but the explaining and the feelings of failure and the anxiety over what people must think of me.

I really, REALLY hate that part. 

BUT still grateful for the things I have... wonderful friends, beautiful family, lovely home, comfiest bed, access to great healthcare (just not great health 😉🤪😜) access to education and so so so much more.

Trying to look on the bright side through the rose coloured lens of my pinkeye 😍

Anyone else doing their best to stay healthy and can’t catch a break for very long? ❤️ How do you cope? 

Syl xx 

#endometriosis #endoactive #endo #endofatigue #pinkeye #pinkeyesucks #crapimmunesystem #chronicillness #endogirlgang #endoactivegirlgang

 

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Friend: how are you? Me: good! Narrator: she was not good

I love this post, it’s so completely true. I HATE the looks I get when I try and explain why I’ve had time off. Vacant faces because they’ve already tuned out and making up their own reasons why I was off work. Not that I should ever have to explain myself.

Sounds like you've had a major inflammatory response. My immune system is the best it's ever been, I haven't had the slightest illness this year thanks to a low carb diet and boosting my gut health. I believe the immune system starts in the gut.

Aw you poor thing it sounds like you have a virus with all those complaints. Have you got probiotics? I got so sick constantly with viruses so bad one time i had uvulitis and it was obstructing my airway so spent the night in emergency. Since i started bioceutical ultra probiotics i havent been sick 'touch wood' and im a nurse. I take one day and when I feel like im getting sick or really run down ill take 2 tablets for a few days and it manages to stop me getting sick x x

This is like reading my own diary. I feel like my immune system is just shot, and I can’t get a break. I don’t think I’ve been coping that well really, so I can’t offer much other than send love and all my best vibes x

Hey Syl, I just wanted to let you know that you were a beacon of hope to me. Almost 3 years ago i came across your blog. Visanne Day 1 I believe. I started my treatment shortly after and I've been able to function, be consistent at work, play with my son at the park and reclaim a social life. I know you have a lot on your shoulders and I hope you get well very soon. Don't forget how much you've done for girls like me. XOX

Girl do you know how comforting it is to see this post?! I am completely the same, and have struggled for many years.... you always get that worry of other people’s perceptions of you even though you know your legit. Focusing on myself and trying to not think of other people’s judgements are probably two top coping tips xx

I feel this so thoroughly.... I had an excision in October... I was hopeful to maybe get a few months respite... but it never happened... now I have had two huge bleeds in the last month.. both of which made it impossible to go to work... and have now made me have iron infusions because I’m so anaemic... I work late shifts, 3-midnight, and a second job, this fortnight I was rostered for too many hours.. 81 to be exact... and that’s only in one place... today I fell in a heap... I just can’t.... I just can’t do my life... it all feels like it’s all too much.....

Hi Syl, I guarantee you're stronger than most people. Don't worry what others think as if they had a day in you're shoes they would understand what you push through some days to function. Be gentle with yourself as brighter days are on the way. Ambs xx

Sorry to hear that hon hope you get better soon XXX

Sly get some colloidal silver it will make a huge difference it will help your tongue and your eye you won’t believe it.

Yes!! Every time I have some days off I get sick. I’m so over it... I eat healthy, I exercise, I’m a bit pedantic about my sleep routine and still... ARGH

I so empathise, I used to get sick all the time, even when my endo wasn't too bad (back way back when...). But interestingly, now that I'm on a Gnrh agonist I actually have a functional immune system, for what feels like the first time in my life. It makes me think there should be more focus on the link between endo and the immune system.

Have you tried bioceuticals Armaforce? I take it every single day and extras when I am feeling like I am coming down with something. It’s behind the counter of most pharmacies. I swear by it. Definitely helps boost my immune system and finger crossed so far getting through winter without too much time off! Just a suggestion

So feel you! Hysterectomy in April 2917, 5 hospital stays for pain after that, constant infections, poor mental health. Weight gain, weight loss, full body bloating, extreme fatigue, horrific hair loss. 12 months later, to the date, ended up having emergency surgery for 15 cm tract infection and strangulated hernia! Two wks after that back in hospital with post surgical wound reopened and fluid built up where hernia was. Three wks after that bloody kidney stones!!!! Thank you for all your posts lately and so openly sharing your struggles, especially with aspects of Endo that aren’t spoken about enough! (Poor immune system, Endo fatigue) you sharing, so openly truly makes a difference in so many ways xx the only reason I have ‘coped’ is purely because of my Endo community and close friends. These woman have literally dropped everything to be there for me, in hospital and supporting me at home. Having a village I can rely on , who understands, who genuinely cares has truly been my saviour . Feel better xxx

I literally get sick all the time , I have endo and Crohn’s disease so my immune system is absolutely horrible. I know what you mean with the anxiety of what people think , I get that all the time , I know I can’t help getting sick, however it sucks so much to always have time off because of another illness , sending you hugs x

I feel you honey! We’re all fighting together against this fuckin illness, if we aren’t strong enough to tell the world how awful and diverse endo is, nobody does !❤️

There does need to be research into endo and the immune system. Whenever mine was bad I would get every cold that crossed my path and would immediately turn into a rabid throat infection. After 4 laps, full hyster, no ovaries (by 42) and HRT implants these days I'm pretty good. But it took some drastic action.

Wow. This is exactly how I felt today 😒

This is literally me for the past 2 weeks. What gives?! ETA: while I think words like "lame" & "freak," I try to not use those to describe my experiences because of the ways they've been used to dehuamanize people with disabilities, including myself for not being able to "measure up" to whatever the supposed norm is.

🙌🏼🙌🏼

Feels 💓

So true. I really struggle telling friends and family and cancelling things. It always makes me feel guilty. But I have learned it is important to put my health first.

“Although at home I’m not complaining about my ailments at all and just chilling and resting, when you have to give excuses to your boss/supervisor/employer or whoever it is... the genuine reasons you’ve been unable to work just start to sound like the lame excuses of a chronic complainer. Ya feel me?! This is the part I hate the most about #chronicillness. Not the pain, the time off, the sickness etc... but the explaining and the feelings of failure and the anxiety over what people must think of me. I really, REALLY hate that part” ⬆️⬆️⬆️⬆️⬆️⬆️⬆️⬆️⬆️⬆️ All of the above 🙌🙌🙌🙌🙌🙌🙌🙌 Xxxxx

Does anyone else here get migraines and vomiting just before ovulation. I have had two surgeries and no diagnosis of endo yet a few of the symptoms (bad pain and vomiting on day 1 of period since 17) I’m now 31 and have had all types of treatment. We haven’t been successful having a baby so don’t want to try artificial things. I just in the last 3 years have started getting sick near ovulation and wanted to know if this is common with endo as well?

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Counting down the days til Australia’s first National Action Plan for Endometriosis is launched!!!
😇😁🥂👍🏼

I have just heard intel from my insider that while there isn’t a set date, the Plan will be launched at the end of this month.😁

CAN’T WAIT TO READ IT, GANG!!

Got some extra pretty exciting news too but I’m afraid it’s embargoed until further notice.🤫

GOOD THINGS ARE HAPPENING!!!🤗🤗🤗

Not to my face, however.

After 2 magnificent days out in the world, I’m back in bed with pink eye, which probably isn’t pink eye but rather a virus or some savage eye infection but I’m stickin’ with pink eye. ‼️

I actually gasped when I looked at my reflection in the mirror this morning.😧😧

The accompanying photo is of me in healthier, Nine News camera- ready, non pink eye times. Those were good times...😊

I think I’ve posted enough depresso photos of me in bed lately!! Nobody needs to see my weeping, swollen, blood shot pink eye. 😑

Watch this space re the National Action Plan launch !!!!! 🚀

Xx Syl aka Pinky ❤️💕

#endometriosis #endo #endoactive #1in10 #nationalactionplanforendometriosis #endometriosisawareness #endoactivegirlgang #girlgang #girlpower
... See MoreSee Less

Counting down the days til Australia’s first National Action Plan for Endometriosis is launched!!!
😇😁🥂👍🏼

I have just heard intel from my insider that while there isn’t a set date, the Plan will be launched at the end of this month.😁

CAN’T WAIT TO READ IT, GANG!! 

Got some extra pretty exciting news too but I’m afraid it’s embargoed until further notice.🤫

GOOD THINGS ARE HAPPENING!!!🤗🤗🤗

Not to my face, however.

After 2 magnificent days out in the world, I’m back in bed with pink eye, which probably isn’t pink eye but rather a virus or some savage eye infection but I’m stickin’ with pink eye. ‼️

I actually gasped when I looked at my reflection in the mirror this morning.😧😧

The accompanying photo is of me in healthier, Nine News camera- ready, non pink eye times. Those were good times...😊

I think I’ve posted enough depresso photos of me in bed lately!! Nobody needs to see my weeping, swollen, blood shot pink eye. 😑

Watch this space re the National Action Plan launch !!!!!  🚀 

Xx Syl aka Pinky ❤️💕

#endometriosis #endo #endoactive #1in10 #nationalactionplanforendometriosis #endometriosisawareness #endoactivegirlgang #girlgang #girlpower

 

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Ohh, I don't know, a good pink eye photo is always impressive. 😉 I hope you start to feel better asap, lady x

Better pink eye than stink eye 😜😘

Tania DH

EndoActivists can you help with Endo research?
WHRIA has asked us to help them recruit participants in 2 major studies on menstrual bleeding and pelvic pain. Please share with your networks.
go here to take part: https://endoactive.org.au/research-studies/
... See MoreSee Less

EndoActivists can you help with Endo research?
WHRIA has asked us to help them recruit participants in 2 major studies on menstrual bleeding and pelvic pain. Please share with your networks.
go here to take part: https://endoactive.org.au/research-studies/

 

Comment on Facebook

We are v happy to help. Research is the key to unlocking this mysterious disease.

❤️

Thank you Lesley and Syl Endoaccess GmbH for sharing this important research we are conducting Women's Health & Research Institute of Australia

Good on you for speaking publicly about endo, Penny! It takes guts. We’re right behind you. 💪🏼❤️

http://dailymail.co.uk/tvshowbiz/article-5935901/…

Home And Away's Penny McNamee reveals endometriosis struggle
She's the Home And Away star who balances a busy work life with raising her three-year-old son Jack.
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Comment on Facebook

Great article & any awareness is awesome but I still have a little 😏grrrr when I read things like “after having surgery last year she is now pain free” nothing is ever written about how it returns & that there is no cure giving many false hope much like the hysterectomy path/debate 😕

Yes good you but your not the only one we all have our own journey and some are worse than others some deal with it every day quite ly they are the ones that need support also

Robyn Taylor good but doesn’t seem like it’s a very bad case - from this article anyway....wonder how she became magically pain free so fast, wish I was that lucky!

Krista Sands

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