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Hey EndoActivists, here's a snippet from the author of this article on The Sydney Morning Herald.

"The thing is, I had no idea what fertility testing includes - and if it’s even effective. I assumed, because so many doctors and clinics offer them, that fertility tests are the real deal.

Yet recent studies, and many experts, suggest fertility tests are not only unhelpful in determining how fertile a woman is, but that they’re wilfully misleading women into making decisions based on scientifically unproven data."

Have you ever been told to have an 'AMH' test? Did you go on to have the AMH test? Regardless of whether or not you're thinking about your fertility, this is an interesting article to read.

https://smh.com.au/lifestyle/… ... See MoreSee Less

5 days ago

Experts concerned fertility testing is an expensive con

smh.com.au

Recent studies, and many experts, suggest fertility tests are misleading women into making decisions based on scientifically unproven data.

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RESEARCH PARTICIPATION OPPORTUNITY!
Dear EndoActivists, Dr Leesa Van Niekerk from the University of Tasmania is conducting research on Cognitive Behavioural Therapy (CBT) and Mindfulness Interventions for Endometriosis. See below.

"CBT is a psychological therapy that focuses on the interaction between our thoughts, feelings and behaviours.

Researchers at the University of Tasmania are conducting a pilot study investigating the effectiveness of CBT and mindfulness for managing the distress and pain associated with endometriosis.

We would like to invite you to take part in our 8-session CBT and Mindfulness group program for women who experience symptoms of endometriosis. There is no cost to attend the program.

If you live outside of Hobart, you can complete the program through a self-instruction mode where treatment materials are provided on-line or via postal service.

If you would like to know more about the treatment, please contact Dr Leesa Van Niekerk on (03) 6226 6645 or Leesa.Vanniekerk@utas.edu.au and she will happily answer any questions that you may have." ... See MoreSee Less

I had an AMH test done at 28 because I was curious to know what my approximate reserve was. I sought it out myself after researching the test, info, and reliability. I was told explicitly by the specialist that it did not determine fertility, quality of eggs, or ability to conceive or carry. I just wanted to know whether my reserve was within the 'normal' range for my age as I had been diagnosed and treated for endo/adeno and we were planning on waiting a few more years, which we did, to try to conceive. My reserve was deemed to be within the normal range, only slightly on the lower side. I have since successfully had 1 pregnancy/live birth, and a second successful pregnancy and am due in April. Nil miscarriages. Nil fertility treatment required for either pregnancy. I had been told by various doctors that I needed to have children ASAP because of endo. After hearing Dr Jason Abbott explain only recently that 2 in 3 women with endo will go on to have successful pregnancies without fertility issues and/or treatment, it appears as though a lot of the medical institution needs to be better educated on the topic.

Tara ...........

EndoActive Australia & NZ EndoActive Australia & NZ is asking for donations.

7 days ago

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Olivia Grace Hicks I've just emailed about this

Fantastic research conducted by amazing researchers!!

Hayley Turner

Ella x

Tash Donaghy

Mikayla

Ashley Walker

Sarah Marshall

Liz Abbott

Alyssa Gesiotto

Emailing Leesa now!

Mel Knuckey ?

This sounds fantastic and really useful to those in the community!

Traci-Jean Berresford

Ireena Randell - was so lovely to bump into you today. Definitely have to organise a catch up. Saw this and thought it may interest you. Xx

What a great opportunity!

Jess Whiteley

Tylah Allen

Wish I’d known about this as I could’ve participated Leesa.

Tracey Orr, Maria Blight ❤️

Emy Fife

Thanks everyone for the fantastic response, we still have some spots available for each of the three options (small group, self-instruction and care as usual) 😄

Deb Lovell thought this might be of interest xx

One thing I love about holidays is having the time and the energy to put into making big batches of really yummy food for family and friends (or just myself). Today’s lunch was:

Panzanella salad with fried capers, lemony olive oil salmon, peach, basil and bocconcini salad with snow pea shoots and honey balsamic dressing, green pasta salad with peas, dill and parmesan (green sauce was avo, basil, parsley, olive oil, lemon and ricotta) and corn and coriander salsa with butter sauce.

Bread and pasta are really easy to find #glutenfree these days and a lot of people who struggle to tolerate gluten find that sourdough suits them just fine 😊

I’m still #notafoodblogger so like I said in my stories, probably best not to get used to me doing foodie posts as I’ll most likely forget all about it once I’m back in real life mode where I eat all the food on my plate before I remember to take a photo of but I guess if the people spoke and there was a public outcry for more regular #endo friendly, #antiinflammatory food posts then I would consider.
Syl xx @ Noosa Heads, Queensland ... See MoreSee Less

EndoActive Australia & NZ EndoActive Australia & NZ posted 5 photos — in Noosa Heads, Queensland.

1 week ago

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Wow what a spread! You’re looking so healthy Syl- glowing in fact! 💖

Oh boy am I feeling righteous this morning. Here before me I have not one, not two, but THREE vegan products. Bloody incredible protein smoothie, double espresso and my favourite new bag from @sans.beast while catch up on all the latest #endo news in my Google alerts ❤️ All the bushwalking and swimming and paddle boarding I’ve been doing over the past week has made me feel so good. Nothing like a bush walk and there is NOTHING like working up a sweat and getting to swim in a natural fresh water Rockpool, of which there are so many here on the Sunshine Coast! Hoping I can find some goodies when I’m back in Sydney.

Seeing as we haven’t spoken about diet for very long... have you noticed that certain foods or certain drinks make your gut unhappy and/or trigger pain?
Comment below so our fellow EndoActivists can get a sense of what works and absolutely does not work for each person. Of course we’re all different but from experience, I’ve noticed a lot of similarities among women with endo regarding which foods help them thrive and which ones wreak havoc.

Syl xx ... See MoreSee Less

1 week ago

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Agree with the low FODMAP diet, it's helped me a lot 😊😊😊

I’ve been having huge success with the low FODMAP diet. I still have terrible pain, but this reduces it drastically. Currently I’m trialling gluten free on top of low FODMAP, but it hasn’t been a month yet, and it’s too soon to tell if it helps. I do find the restrictions tough occasionally, but when I see the pain eating my trigger food causes, it doesn’t seem so unreasonable to eat this way.

We are pretty lucky up here with the amount of bush walks. Which one did you go to? I love Booloumba Creek and Falls in Conondale National Park

Talkin’ shit about endo, anxiety and not giving in to the negative self-talk that creeps into your brain when you spend time looking at Puritan ‘health warrior’ social accounts with @katepascoesquires ❤️❤️❤️

It’s ok not to be a vegan yogi who manifests their intentions every morning and journals daily and meditates hourly and takes thousands of photos of perfectly constructed açai bowls with rows of carefully sliced fruit (as much as my OCD tendencies kinda love this it is fucking impossible!!) and sleeps with crystals and doesn’t drink or smoke or take illicit drugs or sleeping pills or hormone therapy and only eats organic everything and exercises daily and plays a bamboo flute and sips herbal tea with like minded friends for a fun night out and knows without a doubt that they’re on the right path in life because the universe told them and gave them a sign and the sign was a grass-fed Himalayan goat’s non genetically modified Pubic hair sitting atop their very expensive B3 vitamin infused organic mascara (which they obviously don’t use because #cleanliving) and the goat pube spelled ‘namaste’ because duh do you even yoga darl ?! It really is ok to not be that person, all power to them... and to just be yourself.

I’m personally very over beating myself up about all the things I am not and all the things I should be. I just want to be me and to feel proud of being me.

I don’t make New Years resolutions but this year I’m going to make an effort... no MORE of an effort... to compare less, be me more and not to feel an ounce of guilt for being ‘less than’, ‘not as good as’ or ‘never good enough’. OVER IT!!! Oh AND if I suck at doing this, I refuse to feel guilty!

❤️❤️❤️Syl

FYI, I am in no way meaning to insult anyone who identifies with any of the above. I’m merely making the point that a lot of ‘health’ and ‘wellness’ accounts on social media are saturated with certain stereotypes and give the impression that you must lead a Puritan lifestyle of a particular type in order to feel well, be healthy and be WORTHY. I’m simply saying that I do not subscribe to this and there is more than one way to be well, feel good, stay healthy and live a fulfilling life. ✌🏽 ... See MoreSee Less

1 week ago

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Syl so goats have pubic hair? No kidding😄

😊

Ruth Elizabeth Fawcett

Poingnant and impressive! #deepinfiltratingmultiorganstage4endometriosissurvivor

OMG YES!!! 🙌🏼🙌🏼

Preach! 🙌🏼

Thank you for this!!!! As it’s a constant battle of trying and then the guilt when you don’t.. 🙌😻

Amen!! 👐

🤣😂😆Currently looking my worst but feeling my best after sharing my body with disease for over 30 years💪💛

WOW! Can you believe it?

From having to explain what endo is to EVERY. SINGLE. PERSON that I ever met in the early years post-diagnosis to the most Googled health question in the WORLD!!

This is such a strong indication of just how successful our collective push for #endo awareness has been - and on a global scale. What a brilliant achievement! I'm so proud of EndoActive, of all of you EndoActivists and of all the groups helping to raise awareness of #endometriosis.<3

Syl xx

https://mamamia.com.au/what-is-endometriosis-pain/ ... See MoreSee Less

2 weeks ago

The most googled women's health question of 2018.

mamamia.com.au

There has been a spike in awareness.

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Wow, imagine if you didn’t have to explain what it was every single time you mention it 🙂 such a great effort by all in raising awareness xx

♥️

Excellent !

Good Morning EndoActivists.
Many of you are worried about fertility even if it's a nagging little thought you push to the back of your mind. This article from The Guardian today offers an insight into the research that is going on into why women with endo may experience fertility problems.
https://theguardian.com/society/2019/… ... See MoreSee Less

2 weeks ago

Endometriosis study 'sheds light on links to infertility' say scientists

theguardian.com

South Korea and US teams say infertility could be linked to deficiency of a protein in womb

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Aaron Gill

Ange Girdhage

The why is fairly self explanatory, what we need is a way to measure the likelihood that the reproduction system in women with endo will experience difficulties when TTC

Matthew Wilson

Heather Joy

I think I heard on the radio news this morning there could be a break through in research for an over the counter medication that can stop the growth of endo. Anyone else here this? ... See MoreSee Less

2 weeks ago

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Hey EndoActivists, I’m currently in Noosa on family holiday.

My pain flare (hope I’m not jinxing myself here!!) seems to be over which is great. It lasted 3 weeks on and off and was likely triggered by the way I was exercising and NOT because my #endo has returned.

This is great news and means that my last laparoscopy in 2014, in combination with the hormonal medication I take called Visanne and all my daily self-management such as nutrition, self-care, adequate sleep, appropriate supplements, good gut health etc etc ... all of these things are helping to keep my endometriosis at bay WHICH IS GREAT!!!!

As you guys know, my main struggles since my pain pretty much went away in 2015 have been fatigue and weak immune system. I’m still working on these.

Going back to the pain flare, this can happen and doesn’t necessarily mean endo is back!! If you’ve had chronic pain, a small event can trigger old pain pathways. In my case it was most likely doing abdominal and core strength exercise and my pelvis did not like that even though I was loving it!!

This was a bit of a bummer (ok massive bummer) and I was forced to stop training 4 weeks ago until the flare simmered down. I’m now trying to ease back into exercise by walking while I’m on holiday. When I’m back in sydney I’ll be going to a pelvic floor physio to discuss ways I can exercise that won’t give me a pain flare.

I’ll also be returning to my endocrinologist to chat about changing hormonal therapies as my beloved Visanne is working “too well” and my ovaries are too suppressed, meaning that I’m not producing any oestrogen or testosterone - hence my fatigue, low mood and trouble feeling motivated etc etc

OHHH ENDO ANDOHHH HORMONES! What fun you are. Just a quick update while I am feeling alert and motivated!! (To go eat food). Love to you all ❤️❤️❤️ Syl ... See MoreSee Less

EndoActive Australia & NZ EndoActive Australia & NZ posted 4 photos.

2 weeks ago

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Tara, see comments 😘

Visanne is a wonder drug! I have been in it for 2 years and am pain free. After my first surgery I was diagnosed and went through years of pain with no future of it getting better. Thank god my doctor is on top of his industry and recommend this drug. Hats of to the Pharma companies and the people behind it. Everyone with Endo needs to ask their dr about it.

Beautifully written Syl

I found an exercise physiologist very helpful Syl. You can get visits on a chronic health management plan from G.P also. I did that & pelvic P.T together. As always, thanks for ALL you (& mum) do. Happy happy holidays x

I have been on vissane for 6mths n love it

Pelvic floor physios are worth their weight in gold. Re your estrogen & testosterone suppression - can you take a little add back HRT on visanne? My endocrinologist gave me some when I was in Zoladex then synarel and it improved so many symptoms but wasn't enough to set periods going again

It’ s a windy journey to ‘managing’ #endo and it associated ‘friends’💪💛

Enjoy your holiday! ⛱️

❤👍❤

Rachel Heslington