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20 hours ago

EndoActive Australia & NZ

Update from @lenadunham ... See MoreSee Less

Update from @lenadunhamImage attachment

Morning EndoActivists. WANT TO BE A PART OF RESEARCH!?
Dr Leesa Van Niekerk from University of Tasmania is conducting research on "The Impact of Endometriosis and Persistent Pelvic Pain on Intimacy and Relationship Wellbeing in Couples".
Over to Leesa.
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Do you experience symptoms of endometriosis?
Are you currently in a relationship?
Are you 18 to 47 years of age?
If you have answered YES to all of the above questions, we would like to invite you and your partner to participate in online research currently being conducted by researchers at the University of Tasmania.

This research focuses on the emotional and physical intimacy and relationship wellbeing in couples living with endometriosis. We are also interested in understanding how much information regarding their symptoms and treatment of endometriosis women choose to disclose to their partners.

This information can be used to guide recommendations for effective treatment by medical or allied health practitioners and ultimately improve care for women diagnosed with endometriosis.

If you are interested in participating, please email Dr Leesa Van Niekerk at Leesa.VanNiekerk@utas.edu.au and provide a separate email contact for yourself and your partner (with their permission) and you will each be sent a link to the survey and a confidential entry code.

Alternatively, you can request a paper copy of the survey by contacting Dr Van Niekerk on (03) 6226 6645.

This research has been approved by the University of Tasmania Human Research Ethics (Tasmania) Network (H0017516).
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#endometriosis #endo #research #endoresearch #1in10 #pelvicpain #endometriosisawareness #chronicpain #chronicillness #intimacy #relationships #endosister #endowarrior #spoontheory #spoonielife #spoonie #unioftasmania #unioftas #endosymptoms
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Morning EndoActivists. WANT TO BE A PART OF RESEARCH!?  
Dr Leesa Van Niekerk from University of Tasmania is conducting research on The Impact of Endometriosis and Persistent Pelvic Pain on Intimacy and Relationship Wellbeing in Couples.
Over to Leesa.
--------
Do you experience symptoms of endometriosis?
Are you currently in a relationship?
Are you 18 to 47 years of age?
If you have answered YES to all of the above questions, we would like to invite you and your partner to participate in online research currently being conducted by researchers at the University of Tasmania.
This research focuses on the emotional and physical intimacy and relationship wellbeing in couples living with endometriosis. We are also interested in understanding how much information regarding their symptoms and treatment of endometriosis women choose to disclose to their partners.
This information can be used to guide recommendations for effective treatment by medical or allied health practitioners and ultimately improve care for women diagnosed with endometriosis.
If you are interested in participating, please email Dr Leesa Van Niekerk at Leesa.VanNiekerk@utas.edu.au  and provide a separate email contact for yourself and your partner (with their permission) and you will each be sent a link to the survey and a confidential entry code. 
Alternatively, you can request a paper copy of the survey by contacting Dr Van Niekerk on (03) 6226 6645.
This research has been approved by the University of Tasmania Human Research Ethics (Tasmania) Network (H0017516).
---------
#endometriosis #endo #research #endoresearch #1in10 #pelvicpain #endometriosisawareness #chronicpain #chronicillness #intimacy #relationships #endosister #endowarrior #spoontheory #spoonielife #spoonie  #unioftasmania #unioftas #endosymptoms

2 days ago

Good Morning fello Endo sisters,
Yesterday I had a hysterectomy done age 33.
I have had both ovaries and tubes removed back in 2011 & 2016 due to Endometriosis and chronic cysts.
Last year I also had an ablation done and removed the lining of my uterus.
Here I was thinking I could keep my uterus and cervix with no issues. I thought wrong.
Last week I was having an afternoon nap and woke up to excruciating pain in my lower abdomen. I managed to get thru to Wednesday night till we had to get an ambulance to my doctors hospital where I was admitted for 5 days due to the pain I was in.
I had a CT Scan and Ultrasound. They could see something was near my uterus, but also my uterus had blood in it even though I have had the lining removed. There is a name for this but the way it was explained to me was I had Endometriosis inside my uterus instead of the outside.
This until I had surgery yesterday morning. I decided to be pain free and have uterus and cervix removed.
Post op my doctor came to see me on the ward. Everything went well but when he was ready to remove the uterus it was stuck moved his camera around to see my Endometriosis had returned we have no idea why?!? So now that’s all gone too.

I knew I wasn’t right 4 months ago. I’m on Hormone Replacement Therapy tablets since 2016 for my hormones to keep me in check. But I was moody, tired, cranky, I had migraines to the point I was rushed to hospital seen a neurologist and had an MRI scan, I had awful food cravings, I was crazy to deal with. But I had no pain down there hence why I couldn’t work out what was wrong with me till last week.
My partner nearly left me cause he thought I was crazy and this was all in my head. My doctor even said the same thing I had ghost pain but no I was spot on with what was wrong with me I wasn’t crazy I was sick with Endometriosis.

Question to any ladies who have had a hysterectomy....can u still get Endometriosis after everything being removed or now can I officially say I’m in the clear after 12 years of major pain, many hospital & surgeries and nearly died cause it also caused and kidney issue, losing my fertility and was unable to have any children of my own.

Can I say I am now officially Endo Free?
Cause I hate what is has done & put me through.

Thank you for reading.
Melissa ❤️🙏🏻
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3 days ago

My friends sister has featured in this video. It’s an excellent perspective of what we deal with.
We are all so very strong 💛💛💛

youtube.com
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Video image

Comment on Facebook

Hey EndoActivists, yesterday I posted this video from @themightysite on our Facebook page. It’s had a huge response. Overall the video has so far had 6.4 million views, which is obviously brilliant for #endometriosis awareness. On the one hand, I think it’s an accurate portrayal of the experiences for so many women. On the other hand, it raises issues of normalising period pain and comparing individual experiences which is not always helpful.

Check out the video for yourselves and feel free to share what you did or didn’t get out of it. Is the messaging helpful or unhelpful or both?

Below is a comment I’ve just posted on EndoActive’s Facebook in the comments section of the post:

Lots of interesting conversation happening around the comparison between the two experiences of pain. I initially thought that for those who don’t quite understand how endo pain can be different from cramps or who simply need an insight into how many women with endo live at tunes, this was a good intro. But I agree with what many of you are expressing - that it’s not helpful to compare as we are all unique and that we shouldn’t normalise period pain. I am 100% on board with that and am constantly saying publicly that we need to stop normalising period pain. While I’m still glad I posted the video I’m enjoying the robust and above all, respectful discussion that’s happening here. Thank you everyone for respecting each other and sharing your opinions. Syl x
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Hey EndoActivists, yesterday I posted this video from @themightysite on our Facebook page. It’s had a huge response. Overall the video has so far had 6.4 million views, which is obviously brilliant for #endometriosis awareness. On the one hand, I think it’s an accurate portrayal of the experiences for so many women. On the other hand, it raises issues of normalising period pain and comparing individual experiences which is not always helpful. 
Check out the video for yourselves and feel free to share what you did or didn’t get out of it. Is the messaging helpful or unhelpful or both?
Below is a comment I’ve just posted on EndoActive’s Facebook in the comments section of the post:
Lots of interesting conversation happening around the comparison between the two experiences of pain. I initially thought that for those who don’t quite understand how endo pain can be different from cramps or who simply need an insight into how many women with endo live at tunes, this was a good intro. But I agree with what many of you are expressing - that it’s not helpful to compare as we are all unique and that we shouldn’t normalise period pain. I am 100% on board with that and am constantly saying publicly that we need to stop normalising period pain. While I’m still glad I posted the video I’m enjoying the robust and above all, respectful discussion that’s happening here. Thank you everyone for respecting each other and sharing your opinions. Syl x

 

Comment on Facebook

I’m glad you reposted with updated comments. Personally I was disappointed seeing this and wanted to comment but didnt. if I’d seen this years ago I’d thought my pain was not valid enough... reinforcing what Drs had been telling me was ‘normal’. My pain was downplayed by others for over 20 yrs that I believed it myself...Well I thought I must be a very weak and lazy person. I don’t feel any period pain should ever be normalised. Thanks for reposting 🙂

I think it is helpful. I am so fed up with other women minimizing endo by saying they have period cramps so know all about it. If this clip gives even some an idea then it's a plus.

I'm on the side of "the video is problematic" but I'm super loving the respectful discussion, so rare and refreshing to find people treating each other well over differing opinions on the internet.

I think it still helps in a way for women without endo and for men to realise that endometriosis pain is much more than simply " a bad period ". The way i veiw this message isnt necessarily that one has it worse than the other, simply that they are different and so should be treated differently.

I've literally just had surgery this afternoon, with endo found in my bladder and bowels. While my periods have never been great, and endo was suggested to me years ago... Reading what some of you guys go through had me second guessing. Plus nothing ever came up fron ultrasounds (which is never 100% going to diagnose, and now I know why), so I sometimes felt like I was trying to take on something I didn't have, or wasn't allowed to claim. That all said... I think if the video was clearer at the start saying that everyone is different, and that these are just a general comparison, I think it's still good to help get the word out to people. ESPECIALLY younger women and teenagers.

So good!! I wish more people understood the difference. Even my own family shrug it off when I say endo pain. It’s like the world doesn’t get it.

Caitlyn Spence

Not sure I agree with the simplistic portrayal, but it does help people understand. Then again, I know people who have had endo and not been affected by it at all in terms of pain, only in terms of fertility. A video also addressing the variance in the endo experience may also be useful for people to understand, ie. those who have, or know people who have endo, who didn’t take one day off work because of it. That can be frustrating in addition to the judgement from non-endo women of endo experiences.

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3 days ago

EndoActive Australia & NZ

News from @lenadunham #endometriosis #endo ... See MoreSee Less

News from @lenadunham #endometriosis #endoImage attachmentImage attachment

 

Comment on Facebook

Totally relate to the belly button part. I actually thanked my surgeon at my post op for fixing my belly button after it was stitched back too tight in a previous surgery 😂😂

Proof that hysterectomy is not a cure. That said, I completely understand and respect why she had one and wish her better health

Can relate just had a hysterectomy on Thursday

Omg I feel ya I have stage 4 endometriosis my whole left ovary is covered in Chocolate Spots and has spread now I cry every time I need to poo I've never felt pain like this and I've had 6 open hearts and 3 c sections and this pain is worse then all of that, I hope one day they find a cure 😢 in 4 days I gwt my op date to have my whole left ovary removed instead of a full hysterectomy

One word. Legend!

Cara Davidson 😞 she sums up so well 💔

💪🏼💛

Sareena Makiri

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4 days ago

I recently went to a Gynecologist in the private hospital system where I was told that I would need laparoscopic surgery. I am yet to receive my quote for the procedure and hoped some of you could tell me roughly how much they paid So I can get an idea of wether I can afford it or not as I don’t have private health cover. ... See MoreSee Less

Comment on Facebook

Email us Kylie: lesley @endoactive.org.au

4 days ago

EndoActive Australia & NZ

Endo pain vs. Period pain. This is a good one to share !
Syl xx

Chronic Illness on The Mighty
For anyone who thinks cramps and endometriosis are the same thing...
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Comment on Facebook

Lots of interesting conversation happening around the comparison between the two experiences of pain. I initially thought that for those who don’t quite understand how endo pain can be different from cramps or who simply need an insight into how many women with endo live at tunes, this was a good intro. But I agree with what many of you are expressing - that it’s not helpful to compare as we are all unique and that we shouldn’t normalise period pain. I am 100% on board with that and am constantly saying publicly that we need to stop normalising period pain. While I’m still glad I posted the video I’m enjoying the robust and above all, respectful discussion that’s happening here. Thank you everyone for respecting each other and sharing your opinions. Syl x

I'm just wondering if it's wise to compare these. Endo pain comes in many forms. My pain was more like the cramp side of this video. But I've had four surgeries, constant bleeding, and infertility followed by a decision to have a hysterectomy at age 35 without being able to first conceive. I'm not sure therefore that's its helpful to compare or categorise pain symptoms. Pain is also subjective so I just don't think we can categorise pain so easily into being either endo or non-endo related.

I don't think that these are helpful comparisons. They are both in a lot of pain, and the notion of "bad but normal" period pain vs "endo pain" is what encourages doctors to fail to take people seriously. Also, maybe the woman on the left is what it looks like to be a person who has been told that it's "natural" and tries to get on with life despite chronic debilitating pain?

not to mention painful tearing sensation in thighs, back and pelvis day in, day out making it incredibly painful to sit, lie down and walk.

....because when my insides have curdled and I'm about to pass out from pain being burned is a risk I'll take. Third degree burns - on my feet of all places.

It’s comforting to me - thanks for posting. I carry a ridiculously large bag every time I leave the house, full of every drug from buscopan to tramadol, pads, relaxation sprays, magnesium rub etc etc. That made me laugh (and not feel alone) on a double tramadol day. Thanks. 🙂 I think it would be quite good just for someone who has no idea what endo is.

My drs here won’t listen that I have endometriosis. I’ve had surgery in my home town before and had it burnt off several places. Now Drs in qld won’t listen to me 😞 they brush it off. I’ve been in the worst pain lately heavy periods, feeling sick and as noted it’s still painful when my period has stopped. I’m fighting for my rights to be heard

Lili Madeline We need to get you to see a better doctor if this lady gets all that medication and you get nothing.

Certainly relate to the girl on the right pain medication doesn't work, after two operations it's come back, the nausea is horrendous, the pain is all over my back, legs and pelvis, the constant tiredness and fatigue but at the same time still being an active person have to really push myself. It's actually at it's worse this year unfortunately but I try not to let it rule my life. Enjoy my jobs, my family and friends and off course my acting, singing and dancing!

God this is me today 😢😢 Bianca Gay

I laughed at the getting ready to leave thing.... I went to a concert the other week and I could only take a small bag in it was so full of pill packets and mini heat pack etc

My daughter had 9 surgeries and one of those was a hysterectomy at the age of 23, luckily she doesn’t want children

This is brilliant!! I always have to explain what living with Endo is like. People have no idea!

Danielle 😘

Mighty good advice! I hope the medical community and particularly Drs in ER see it and LISTEN!

Holly Morgan or you’re like me who has a whole seperate bag full of medications and 3 hot water bottles in my car on rotate 🤦🏼‍♀️

Sam, Taylar, kind of what we were talking about on the weekend.

Ashlee Ricky

Elisha Crowther

Michaella Edelstein

Rosa Spagnolo Commisso

Anneka Atley

Fabienne Alfonso Rubio

Shenae Ieraci

Becky

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Have you had an unplanned pregnancy since being diagnosed with endometriosis?

Our friend, Kate Young, a Research Fellow at Monash University, is about to publish her research on unintended pregnancy and endometriosis.

She would like to include a quotation from a woman about her experience of this in a related upcoming article for The Guardian.

You are welcome to email Kate with your experience (kate.young@monash.edu; she will remove any identifying information for the article) or, if you are comfortable to do so, you can comment below.
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Have you had an unplanned pregnancy since being diagnosed with endometriosis?
Our friend, Kate Young, a Research Fellow at Monash University, is about to publish her research on unintended pregnancy and endometriosis.
She would like to include a quotation from a woman about her experience of this in a related upcoming article for The Guardian.
You are welcome to email Kate with your experience (kate.young@monash.edu; she will remove any identifying information for the article) or, if you are comfortable to do so, you can comment below.

 

Comment on Facebook

Yes! I was diagnosed at 19 and was told I would never have children. Fast forward 7 years and I have booked my dream overseas trip. Said to my boyfriend at the time that I’d been feeling off for a little while. Went to the Dr and she asked me if I could be pregnant. I told her I can’t get pregnant so that’s a no. She asked me to do the pee test. Two dark red lines went across the test immediately. She told me she thinks I’m quite far along. I said that it’s not possible. She gave me a blood test and told me she’d call me on Monday. Monday morning clicks around and the Dr calls me. “Suzie are you sitting down? You are 16 weeks pregnant!”. I couldn’t have been more shocked. My little miracle is 17 next month

I had my first endo surgery and was put on the pill to reduce symptoms after. Had a breakthrough bleed on the pill. Less than 3 months after surgery.. pregnant! *this followed a miscarriage in the previous year so wasn't expecting to get pregnant.

Thank you so much to the women who commented and those who emailed me. I very much appreciate you all taking the time to share your experience with me. It is a privilege to work with and for you every day - Kate (Young) x

I had my first child before the diagnosis and my next two after. All three took an effort; no unplanned babies here.

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