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Hey EndoActivists- hope you had a restful weekend. We're asking for your help with endo research. It's a bit like voting - it's an opportunity to make your experience count. Please like and share so Marie gets as many participants as possible.
Survey link here:
https://acap.au1.qualtrics.com/jfe/form/…

Over to Marie:

"I am conducting this research for my Honours thesis in the Bachelor of Psychological Science (Honours) at the Australian College of Applied Psychology (ACAP). This study will examine the role of pain perception and psychological factors in sexual functioning in women with endometriosis.

This study is open to everyone over the age of 18-years, who speaks English fluently, and who has endometriosis diagnosed by laparoscopy, with or without pain.

Why I am so interested in this research? For women with endometriosis, the emotional and physical well-being can be significantly affected by the presence of pain. And I think that improving quality of life should be one of the main goals for the treatment of endometriosis.

Sexual health and sexual functioning are essential components of quality of life. However, the issue of female sexual function in women with endometriosis has not been considered as a priority in research. The aim of the present study is to examine the role of pain perception and psychological factors in sexual functioning in endometriosis.

The study involves completing an anonymous online survey consisting of demographic questions and questions associated with general mental health, pain and sexual functioning.

It will take about 30 minutes. Your responses will be completely anonymous and all responses will be non-identifiable. "

Survey link below:

https://acap.au1.qualtrics.com/jfe/form/…
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Hey EndoActivists- hope you had a restful weekend. Were asking for your help with endo research.  Its a bit like voting - its an opportunity to make your experience count. Please like and share so Marie gets as many participants as possible. 
Survey link here:
https://acap.au1.qualtrics.com/jfe/form/SV_bymzz9MtCseDnpP
Over to Marie:
I am conducting this research for my Honours thesis in the Bachelor of Psychological Science (Honours) at the Australian College of Applied Psychology (ACAP).  This study will examine the role of pain perception and psychological factors in sexual functioning in women with endometriosis.
This study is open to everyone over the age of 18-years, who speaks English fluently, and who has endometriosis diagnosed by laparoscopy, with or without pain.
Why I am so interested in this research? For women with endometriosis, the emotional and physical well-being can be significantly affected by the presence of pain. And I think that improving quality of life should be one of the main goals for the treatment of endometriosis. 
Sexual health and sexual functioning are essential components of quality of life. However, the issue of female sexual function in women with endometriosis has not been considered as a priority in research.  The aim of the present study is to examine the role of pain perception and psychological factors in sexual functioning in endometriosis.        
The study involves completing an anonymous online survey consisting of demographic questions and questions associated with general mental health, pain and sexual functioning.  
It will take about 30 minutes. Your responses will be completely anonymous and all responses will be non-identifiable. 
Survey link below:
https://acap.au1.qualtrics.com/jfe/form/SV_bymzz9MtCseDnpP

Comment on Facebook

Done πŸ™‚ Wonderful, important questions to be asking. Thank you!

Well done Marie. Such an important topic to find valuable research for. Thanks for your help. Best of luck x

Awesome lady ! I'm proud of you ! !

Very valuable and important research project. All the best.

Such important research. I know Marie will do a great job with it!

How long is this open for submissions? Probably won't have time to complete it until this weekend.

Done πŸ™‚

Kiarne Raelee

Good luck.

Great pre-election news!! Good morning EndoActivists! On 18 April, EndoActive published an open letter to the Australian Labor Party asking what they will do for women with #endometriosis if they win the next election.

Yesterday we received a response. Here is an excerpt from the letter, published in full below:

"A Shorten Labor Government will deliver an investment of over $10 million for research and education about endometriosis."

THIS IS WONDERFUL NEWS! This means that Labor has committed to matching the funding dollars that the Liberal Party have already allocated to endo since July 2018.

We are thrilled to read that, if elected, "Labor will continue implementation of the National Action Plan for Endometriosis" and we hope that a bipartisan approach to improving the lives of women and girls with endo will continue.

It's been so exciting to see political action finally being taken in our campaign (as in the campaign of ALL the endo groups) to have #endo recognised as a serious public health issue that needs urgent attention and a lot of coin!

As always, we thank Gai Brodtmann, Nicolle Flint Member for Boothby and Nola Marino MP for kicking off the bipartisan approach and paving the way.

If we have a change of government on 18 May, we will hold then to this election promise.
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Great pre-election news!! Good morning EndoActivists! On 18 April, EndoActive published an open letter to the Australian Labor Party asking what they will do for women with #endometriosis if they win the next election.
Yesterday we received a response. Here is an excerpt from the letter, published in full below: 
A Shorten Labor Government will deliver an investment of over $10 million for research and education about endometriosis.
THIS IS WONDERFUL NEWS! This means that Labor has committed to matching the funding dollars that the Liberal Party have already allocated to endo since July 2018. 
We are thrilled to read that, if elected, Labor will continue implementation of the National Action Plan for Endometriosis and we hope that a bipartisan approach to improving the lives of women and girls with endo will continue.
Its been so exciting to see political action finally being taken in our campaign (as in the campaign of ALL the endo groups) to have #endo recognised as a serious public health issue that needs urgent attention and a lot of coin!
As always, we thank Gai Brodtmann, Nicolle Flint Member for Boothby and Nola Marino MP for kicking off the bipartisan approach and paving the way. 
If we have a change of government on 18 May, we will hold then to this election promise.

Comment on Facebook

Has a similar letter been written to ALL Parties ?? Please share the responses from ALL Parties. There’s also no time frame commitment and rather loosely references a commitment to “continue to implement a plan “ how long is this “plan” going to take to implement and at what cost ? How about a commitment to make laparoscopy and other diagnostic procedures more affordable and more readily available so women aren’t having to wait 7-10 years for proper diagnosis ?? How about increasing the rate of cover for Medicare so women aren’t paying gaps of 2-10k + for these diagnostic surgeries ?? Research funding is important, but access to affordable treatment for those presently suffering is equally important . 10 million isn’t going to cover it. !

Wow, I get that there is no time frame the budget is small, but holy hell at lest we are now being heard, it has only been in the last 18mth that we have been able to have any form of voice and now look at us. I don't really care for politics, they are as bad as each other however if this does go ahead, you can all bet that Syl and the rest of us amazing women will make sure that this is only the start, and thats what that letter is, its a starting point. We will keep flighting for better.

This is Liberals statement from 9th of April. Nice to see that they specifically state EndoActive is getting $160,000! www.health.gov.au/internet/ministers/publishing.nsf/Content/health-mediarel-yr2019-hunt123.htm

Woo hoo this is exactly what I’ve been looking for on their website to confirm who I vote for. Thanks Syl! If you write back, can you ask them to update their website with this information so everybody knows - as this has become so important for so many Australians.

Isn’t this just the same as what the Liberal government has already promised to invest?

This is great! It's not much in the big picture, but any help is welcomed as well is any type of awareness. And while I wholeheartedly support you and all you have done for #endometriosisawareness in Australia and NZ, I feel it's really important to ask why everything you guys write about endo is so gendered and always centred around women and women's health? Whilst I understand endo is a disease that *mainly* affects women, a more accurate way of describing it is to say that it affects people with uteruses and ovaries. You are being praised in the letter that you posted up for "powerfully advocating for WOMEN and GIRLS that suffer endometriosis", which I also salute you for, but honestly find reductionist and really exclusionary to trans men, GNC and non-binary people in Australia & NZ who also suffer from the disease. If you haven't heard of him already, I would really recommend having a look at Cori Smith and reading up on his experiences as a trans man and fellow #endowarrior. We suffer enough having to deal with this disease, it is heartbreaking to me that we might be indirectly responsible for further suffering of #endowarriors that don't identify as female; and would not feel included or supported in forums such as these. I have personally learned so much from this page, and have felt supported, however, hashtags such as #endosisters or #endogirlgang are making me more and more uncomfortable - and I am a straight cis woman. I think it's a really important conversation to have when it comes to our fellow GNC, non-binary and trans #endowarriors out there <3 DISCLAIMER: I am not interested in any conversations with any TERFs on this thread. It is 2019 and that type of crap should not even be part of the conversation here. And if it happens to be tolerated here then it's much more telling of EndoActive Australia & NZ than anything else. www.youtube.com/watch?v=eczxr0bYAxw

Labor will be getting my vote this election as well !!!!

When Bill Shorten was Assistant Treasurer, Labor delayed the listing of medicines for: ❌ Severe asthma ❌ Schizophrenia ❌ Chronic pain ❌ Endometriosis ❌ Blood clots ❌ Lung disease ❌ Enlarged prostates

Know who I'm voting for

Syl, what’s the latest on a disability pension for Endometriosis and better medicate and health care rebates?

Fantastic News! Excellent job as always!!!

What about a few million towards more excision surgery training/fellowships for Gynecologist in Australia. That's what we should be asking for!!

Jenni Devereaux

Francis Claessens

Gabriella Moran

Lachy McGuire

Wow

No time frame

Quanita ChocolateDrop Khan

Well done!!!

Susan Smith

Sue Tange

Kathryn Aldover

Taylor πŸ‘πŸ»

Indi Carroll omg

Exciting pre-election news announced here tomorrow morning! Watch this space, EndoActivists! ❀️⚑️

Pelvic Pain Foundation of Australia
QENDO - Endometriosis Association (Qld) Inc
Canberra Endometriosis Network
Endometriosis Australia
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Exciting pre-election news announced here tomorrow morning! Watch this space, EndoActivists! ❀️⚑️
Pelvic Pain Foundation of Australia
QENDO - Endometriosis Association (Qld) Inc
Canberra Endometriosis Network
Endometriosis Australia

Comment on Facebook

Waiting impatiently 😁

2 weeks ago

Loretta Peter Braybrook

Hi.
Our doctor has just prescribed monthly zoladex injections for my daughter. She hasn’t commenced it yet but I’d like to know your thoughts on this, does it work and side effects experienced by any one else having them. You input is much appreciated. 😊
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Comment on Facebook

Hi Loretta - it’s a common form of hormonal treatment for girls with Endo but i understand the side effects resemble menopause. How old is your daughter and has she had a laparoscopy?

You can email us: info@endoactive.org.au

3 weeks ago

Amy Varga

Hi everyone, what has been suggested to you in terms of timeframes to wait after laparoscopy before trying for a baby. ... See MoreSee Less

4 weeks ago

Rebecca Haig

Beth Haig...have you seen this group yet ? ... See MoreSee Less

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