Endometriosis Western Australia in Perth, Western Australia | Non-profit organisation

Endometriosis Western Australia

Locality: Perth, Western Australia

Address: PO Box 711 6105 Perth, WA, Australia

Website: https://www.endometriosiswa.org.au/

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25.01.2022 MEET OUR SUPPORT GROUP MEMBER ALEX! FIRST NAME & AGE Alex, 31... WHAT MEDICAL CONDITIONS HAVE YOU BEEN DIAGNOSED WITH AND WHEN? (2010) Stage IV DIEndometriosis: diagnosed via laparoscopy after nearly 2 years of weekly trips to ED and a total of 9 months as an inpatient over that time. (2013) PCOS. (2013) Anxiety. (2017) Gastric Sleeve Surgery - I lost 55kg and my endo actually got worse! (2020) Hemiplegic Migraines. I'm also super allergic to a few random things: CT contrast, some vaccinations etc... and have anaphylactic reactions. HOW DOES IT IMPACT YOUR LIFE? This sounds crazy but endo has taught me how tough and resilient I can be despite so many challenges and so much pain. When I am faced with difficulties now, I often think to myself "if I can survive life with endo, I can survive anything". Endo has stolen a lot from me, it's ruined relationships and friendships, it's scratched away at my mental health, it's cost me tens of thousands of dollars, it's held me back in my career and it's put pressure on my family relationships and marriage. IF YOU COULD GIVE 1 PIECE OF ADVICE TO A NEW WARRIOR, WHAT WOULD IT BE? You are the expert of your own body, your lived experience is REAL and IMPORTANT, don't let anyone tell you otherwise. Trust your gut feeling and intuition and if you're not sure, don't rush into anything until you are sure. Love yourself, be kind to yourself, even with endo you are perfect just the way you are SHARE WITH US SOMETHING ABOUT YOU, NOT YOUR DISEASE. JUST YOU I am of Dutch descent, born in England, grew up in New Zealand and now live in Perth... I have aspirations to have basic conversational Dutch and Te Reo Mori.

24.01.2022 We’re incredibly excited about this!

23.01.2022 'Experts call for ‘dedicated women’s pain services’ after survey finds people often undergo surgeries that fail to improve their chronic agony'. The Guardian https://www.theguardian.com//australian-women-with-endomet

23.01.2022 Wow what a day!!! We had a wonderful day at the Life Launchpad Peer Power Day for Mental Health Week. Thank you Consumers of Mental Health WA for organising this wonderful event. ... We heard from many excellent speakers on a wide range of topics associated with mental health. We also had the opportunity to raise awareness of endometriosis, especially highlighting the ever-present link between endo and poor mental health. From there, several board members met with Donna Faragher MLC and Zak Kirkup MP Shadow Minister for Health; Mental Health; Aboriginal Affairs; New Industries Manager of Opposition Business.

22.01.2022 We would like to share the following event hosted by The Pelvic Pain Clinic: 'Strategies for overcoming Pelvic Pain with clinical psychologist and researcher Nick Wood' Open to pelvic pain patients of all genders (plus family members and loved ones) and therapists who treat pelvic pain or are interested in treating pelvic pain.... 'As always there is over 40% off for patients. It is very important to us to make this accessible to those that matter the most. Bringing patients and therapists together we can create a brighter future for all involved, especially the patients. For patients - learn how to describe your case in a new light and truly give your therapists a real picture of your lived experience of pelvic pain and how this can lead to so many more opportunities for your recovery. Plus, learn psychological tools from a clinical psychologist, researcher and pelvic pain sufferer with decades of experience that are easy to implement and can make the difference in your personal recovery. Guest speaker - Nick Wood clinical psychologist, and researcher who is cured of pelvic pain with a little c". Panel members - Sheren Gaulbert, former vulvodynia sufferer turned cognitive hypnotherapist who treats male and female pelvic pain & Nikky Box, Endometriosis and chronic UTI sufferer. Participants will get a chance to ask Nick, Sheren and Nikky questions directly in the Q&A session. You will also receive a goody bag of take-home research and strategies after the event.' Tickets - https://www.eventbrite.co.uk/e/how-to-build-stronger-healin A short video on the full line up and what to expect - https://www.youtube.com/watch?v=gA2ppdHFNwg&t=8s

22.01.2022 Back in late 2019, when we planned our 2020 events, we were determined to coordinate an advocacy workshop for our members as it was a HOT topic in our 2019-member survey. This workshop was scheduled to run in April 2020, that was until COVID-19. After a little bit of funding, a little bit of shuffling, the wonderful support of our guest speaker and a whole lot of rescheduling, we are very grateful and EXCITED to be able to provide this workshop via Zoom! Who's ready to learn all about advocacy!?

20.01.2022 Check out City of Bayswater's free event featuring Not So Secret Women's Business! 'Join us for this supportive and informative webinar that celebrates International Gynaecological Awareness Day and lifts the veil on gynaecological issues and related mental health concerns.' https://www.eventbrite.com.au/e/not-so-secret-womens-busine

20.01.2022 2020 is coming to a close and we would like to have one final event before the silly season gets underway!

19.01.2022 Happy IGAD!!! Our team are positively divided over International Gynae Awareness Day today! We are raising #awareness of #endometriosis at Joondalup Health Campus Public & Private & King Edward Memorial Hospital and having some important conversations.... What are you doing to celebrate #IGAD2020? RUOK? Undies for Better Understanding - GYN Awareness

19.01.2022 Happy 7th Birthday!

18.01.2022 On Saturday, we delivered our second digital event for 2020! Thank you to all who joined us, along with guest presenter Tracy Gaibisso, to learn about #endometriosis and #nutrition. This event explored the concept of food as medicine and the role of diet in living with endometriosis. Using both research and clinical knowledge to highlight this often overlooked yet important area, Tracy offered suggestions to consider for improvement of endometriosis symptoms. We are so grateful to be able to support the endometriosis community in Western Australia.

18.01.2022 UPDATE: Applications are now closed due to the large volume of applications received. Thank you to everyone who has shown interest! Do you have endometriosis a...nd gut symptoms? Have you wondered whether diet can help? Monash University is looking for volunteers in a new study! They are investigating a different dietary approach in alleviating gut symptoms in endometriosis Participation Requirements: You are over 18 years old and have been diagnosed with endometriosis, and: - are experiencing problems with bloating, constipation and/or diarrhoea, gut pain - do not have another diagnosed bowel problem, e.g coeliac disease or Crohn’s disease - are not currently taking antibiotics They will provide all of your meals for 2 months. In return, they ask you to keep a diary of all your food and drink consumption, and all bowel symptoms. They will also ask you to complete questionnaires and provide samples for analysis of microbiota. Interested? For more information on what is involved and how you can help, contact: Dr Judy Moore at [email protected] 90330233 All information is strictly confidential #endometriosis #endometriosisresearch #research #endo #monashuniversity #diet #fodmap #meal #mealplan #monash #application #participation

16.01.2022 Support Endometriosis Western Australia Inc. and say hello to 12 months of savings! Join Entertainment to support our fundraising and get a bonus $10 or $20 PRICELINE eGift Card! https://www.entertainment.com.au/orderbooks/9657e88

16.01.2022 As you may know by now, over the past couple of months we have been working in conjunction with WA Primary Health Alliance and ConnectGroups - Support Groups Association WA Inc. on a project to raise awareness, educate and increase the use of Telehealth for those with diagnosed chronic conditions, so that even after COVID-19, people with chronic conditions can access Telehealth. Thank you to everyone who has participated thus far, we hope the informational resources posted re...cently were helpful to you. If you missed these, or would like to see them again, please click this link: https://m.facebook.com/story.php?story_fbid=3471120526252710&id=1178368315527954 We are in the final stage of the project and would love your help in completing the LAST survey. It is less than 2 minutes long and will help capture the final data we need to (hopefully) make an impact on the future of healthcare in WA. Thank you! https://forms.office.com/Pages/ResponsePage.aspx

15.01.2022 Last year we conducted a small scale questionnaire in order to investigate the usage and impact of support services for people with #endometriosis in regional Western Australia. Based on this data, we have identified the desire for increased support services for those living with endometriosis regionally, which would promote positive mental health and well-being. Please view the below info-graphic to read the interesting findings.... #endometriosisWA #mentalhealth #supportservices

14.01.2022 https://www.facebook.com/EndometriosisAustralia/posts/2123350187808892

14.01.2022 4 days left to register for your free ticket to our October workshop on the important topic of Advocacy! Learn how to navigate and negotiate with employers and service providers, focusing on the topics of: 'How to ask, who to ask, what to ask for if you are not satisfied with medical outcomes'... 'How to communicate with employers and what your rights are' 'How to navigate the Medicare system and how to make use of the threshold'. Maxine is an experienced advocate. Advocacy is the support of others in their negotiations for services or other entitlements. Maxine worked as a ‘health consumer advocate’ for 16 years and now uses the skills of advocacy in a wider range of areas, including schools and community. Maxine says, sometimes fighting for yourself alone can just be too hard. Another person can tip the balance in power or confidence in new ideas. Please email [email protected] for the registration password. Registrations close 6pm 26th September 2020. We are passionate about providing free support services. Living with endometriosis is expensive enough! https://www.eventbrite.com.au/e/endometriosis-advocacy-onli

14.01.2022 We are incredibly grateful to be one of the three groups featured in the Local Matters program at Grill'd Victoria Park this month. If you’d like to support us and are feeling a bit peckish, swing by for a bite to eat and drop your token in our jar. Just think, you could eat, support our community and if you wear yellow, raise awareness of endometriosis all at the same time!

12.01.2022 We would like to share a wonderful new resource 'Endometriosis Shared Perspectives', a series of free educational videos from EndoActive Australia & NZ, supported by the Australian Department of Health. "These videos feature experienced specialists and a wide range of patient interviews. Whether you’re a health professional or a person living with Endo, you’ll benefit from this evidence-based information." - EndoActive

12.01.2022 MEET OUR SUPPORT GROUP MEMBER BEC! FIRST NAME & AGE Bec, 43... WHAT MEDICAL CONDITIONS HAVE YOU BEEN DIAGNOSED WITH AND WHEN? 1993 Scoliosis 1995 Migraine 1995 Tinnitus (worsens with migraine) 2016 IBS 2017 low AMH, premature ovarian failure 2019 Endometriosis (Stage 3) HOW DOES IT IMPACT YOUR LIFE? In high school, when I got my first period, I knew something wasn’t right. After school I was waiting for the bus at the station, I was on my knees rocking back and forth in pain - what teenager wants that kind of attention?! Every month, I felt like my back had been hot with a sledgehammer and my insides were being ripped out. The first day, (in the morning) by the time I made it to the toilet, I could barely walk. Often, I would crawl back upstairs to have a hot shower to help. I think people just thought I had a low pain threshold and was a sook. The GP put me on the pill, which helped. It reduced the pain and the length of my periods (before the pill, they’d go for 10-14 days. After pill, 7 days). Every few years, I would think my body needed ‘a break’ from the pill & by my second period I cursed myself! At 29, I kept getting breakthrough bleeding and would have 14 days bleeding, 1 week stop then back for 14 days. The GP put me on a stronger pill and said it will help with your pimples too!’ In 3 months, I put on 8kgs, then progressively more until I was 15kgs heavier! I thought there was no other answer. 6 years ago, I decided it was time to get over my needle phobia and try for a baby. I stopped the pill and was surprised to see my periods weren’t as painful as what they used to be. But soon after developed IBS. I started IVF and found I had low ovarian reserves, lower than expected for my age. After a number of unsuccessful cycles, I asked about investigating endo and the specialist was dismissive (& rude). So, I changed specialists. After 1 failed cycle, the new specialist said he’d like to investigate endo. So, I had laparoscopy and he found substantial stage 3 endo. Since the surgery, my periods have been more painful, I am not sure why. IF YOU COULD GIVE 1 PIECE OF ADVICE TO A NEW WARRIOR, WHAT WOULD IT BE? Ask questions, do research & be your own advocate. SHARE WITH US SOMETHING ABOUT YOU, NOT YOUR DISEASE. JUST YOU I like to do crafty things, but never just stick to one thing. At one time I made cards, now I don’t. Currently, I am teaching myself to crochet.

12.01.2022 As Mental Health Week 2020 draws to a close we thought we'd share some mental health tips for endoWArriors. Remember #mentalhealthmatters and so do you! #endometriosiswa #mentalhealth #mentalhealthweek2020 #youmatter #youarenotalone #YouAreImportant #endowarrior

12.01.2022 We are utterly thrilled to introduce our Patron, Cassie Rowe MLA. Thank you Cassie for your dedication and commitment to our organisation and community. Your passion for raising awareness of endometriosis and driving change is inspiring! 'My name is Cassie Rowe and I am currently the State Member for Belmont, elected in 2017.... I am incredibly humbled to have been appointed as the Patron of Endometriosis WA this year. Endometriosis is a debilitating condition that affects so many people, but it remains underestimated, unknown and incurable. This condition urgently demands the attention of governments, the health system and society generally. Endometriosis WA is a key organisation within the field, bringing light to the pain experienced by people with endometriosis, while also providing a support network for those affected. It makes me so pleased that this crucial work is happening in Cloverdale. As Patron, I aim to help Endometriosis WA achieve its goal of raising awareness. I hope that my position within the WA State Parliament will ensure that more people across Western Australia understand the prevalence, signs and effects of endometriosis. Through this increased awareness, I hope that more people will be empowered to seek medical help and access support networks such as Endometriosis WA. Most importantly, I hope the awareness I can bring will signal to governments and the health system the importance of addressing this condition through research into the causes, treatment and possible prevention of endometriosis.' https://www.endometriosiswa.org.au/friends-of-endowa

11.01.2022 Who can relate? https://www.sbs.com.au//endometriosis-affects-one-in-10-wo

10.01.2022 We're really looking forward to this one! Who's coming along? GAIN Inc.'s 20th Anniversary high tea, with special guest speaker by video link Dr Susan Evans, founder of Periods, Pelvic Pain & Endometriosis (PPEP) Talk to be introduced to WA high schools in 2021. Other guest speakers include Dr. Chris Gunnell & Dr Krish Karthigasu.... See you there! https://www.trybooking.com/book/event

10.01.2022 MEET OUR SUPPORT GROUP MEMBER STEPHANIE! FIRST NAME & AGE Stephanie, 24... WHAT MEDICAL CONDITIONS HAVE YOU BEEN DIAGNOSED WITH AND WHEN? Endometriosis - been diagnosed this year (after years of being bounced around the system) HOW DOES IT IMPACT YOUR LIFE? Everyday I’m in pain, whether that be mild pain/discomfort or bad pain that alters my moods and makes me a grumpy bitch!! I’m lucky in the way that my periods aren’t severe, I get medium bleeding for a few days and cramps that are manageable with over the counter pain medication. The pain that I deal with doesn’t just occur around my period and is localised you one area of my abdomen. Because it’s not ‘typical’ of endometriosis I was bounced around by many doctors who didn’t know what it was and who didn’t want to deal with me. IF YOU COULD GIVE 1 PIECE OF ADVICE TO A NEW WARRIOR, WHAT WOULD IT BE? If you aren’t happy with the answers you’re getting, don’t give up! There WILL be a doctor out there who will listen to you and help you out. Don’t get disheartened by the ones who won’t listen! SHARE WITH US SOMETHING ABOUT YOU, NOT YOUR DISEASE. JUST YOU I’m a cheerleader!! I cheer competitively with Peppermint Dance Company (well did, until Covid but I’ll definitely be going back!)

08.01.2022 We had a wonderful time celebrating GAIN Inc’s milestone birthday yesterday. GAIN Inc is a not-for-profit organisation 'run by volunteers who dedicate their time to creating a world where every woman has the opportunity, knowledge, confidence & support to obtain optimal gynaecological & sexual health.' and was founded by Kath Mazzella 20 years ago! It was a real treat for members of our board and our volunteer team to dress up and enjoy a delectable high tea and afternoon f...ocused on endometriosis. It was wonderful to see some of our support group members attend. Congratulations GAIN Inc. on 20 years of dedication advocating for gynaecological and sexual health! Pelvic Pain Foundation of Australia

07.01.2022 ***Research Participation Call Out*** The Cairnmillar Institute is currently recruiting participants for a study that aims to determine factors that influence w...ellbeing for women living with endometriosis. They are seeking women diagnosed with endometriosis who are 18 years or older and fluent in English. Participants would be required to complete a 20 25 minute anonymous online survey about their experiences of endometriosis, quality of life, self-compassion and ways of relating to others. Your participation may help the researchers to identify factors that could be useful in developing interventions to improve mental health and wellbeing for women with endometriosis. https://tinyurl.com/y9noanv8 Photo by Anthony Tran

06.01.2022 Such exciting news! Congratulations to all involved in ensuring Telehealth services remain available! Telehealth services are so very important and assist in making the lives of many people in our community that little bit easier. Thank you Greg Hunt MP! We would also like to extend our congratulations to ConnectGroups - Support Groups Association WA Inc. & WA Primary Health Alliance for their 'Stay Connected with Telehealth' project rolled out earlier this year in partnershi...p with Chronically Inspired - Life.Beyond.Disability, Endometriosis Western Australia, HeartKids - WA, Northern Suburbs Stroke Support Group, Prostate Cancer Help Association Inc., Stroke Foundation, Support Group for people with Peripheral Neuropathy, Young Adult Diabetes Committee. L.I.F.E and Diabetes WA. 'Telehealth is here to stay after the Health Minister confirmed it would remain in place after the COVID-19 pandemic. The service, which allows bulk-billed online consultations over video, will become a permanent fixture of the Medicare system. It was expanded at the height of the pandemic to make social distancing possible during medical appointments. Health Minister Greg Hunt said the scheme had already led to 40 million online consultations.' https://www.news.com.au///c6f4ff84b9563749b39e6a0a3227f225

05.01.2022 On October 1, the Western Australian Government launched WA’s containers for change scheme! The scheme allows Western Australians to claim or donate a 10-cent refund when they return eligible beverage containers at designated refund points in WA. By collecting your eligible containers, you can help support people living with endometriosis in Western Australia and reduce landfill at the same time! To donate, simply quote our scheme ID C10287108 when you drop your eligible cont...ainers. Eligible containers include most aluminium, glass, plastic, steel and liquid paperboard drink containers between 150ml and 3L. Generally, excluded containers are those that are less than 150ml and greater than 3L. Thank you for your support! #containersforchange #endometriosiswa #endoWArriors #makeadifference https://www.containersforchange.com.au/wa/donate-your-refund

05.01.2022 Support us with Entertainment! There has never been a more important time to support us with our fundraising. From 14th August to 12th September on top of the 20% from every Entertainment Membership, Endometriosis Western Australia Incorporated will receive a bonus of $10 for any single city purchase ($24) and $20 for Multi ($44). Help us, and have fun at the same time! We thank you for your continued support.... https://www.entertainment.com.au/orderbooks/9657e88

04.01.2022 Hip hip hooray it’s our 7th Birthday today! You may have noticed a few changes over the past year, we’ve certainly grown! As we reflect and celebrate, we thought we’d share a brief history of our organisation, from a grassroots organisation Endometriosis Perth Sisterhood of Support to Endometriosis Western Australia Inc. We would like to thank everyone who has contributed to our growth and those who give selflessly to the endometriosis community in Western Australia, especi...ally our volunteers. Please join us in celebrating 7 years endometriosis support and awareness in Western Australia.

02.01.2022 ‘Consultation on the draft Australian Clinical Practice Guideline for the Diagnosis and Management of Endometriosis is now open! Have your say here: https://ranzcog.edu.au//endometriosis-guideline-consultati Feedback open until Dec 24.’

01.01.2022 Diagnosis = Excision gold standard Here are some tests that are used in the process of being diagnosed with endometriosis: Clinical history & physical examination Other causes of pelvic pain explored: e.g vaginal swabs, urinalysis, pap smear etc.... Pelvic ultrasound fibroids, ovarian cysts and endometriomas Transvaginal ultrasound better visualizes endometrium and uterine cavity, DIE (deep infiltrating endometriosis) MRI and/or CT pelvic masses, DIE However, Kiera makes the point that despite all of these tests they CANNOT confirm the diagnosis of endometriosis. The gold standard for a confirmed diagnosis of endometriosis is laparoscopy, with biopsies of endometriotic lesions to histologically confirm diagnosis. #Endometriosis #EndoWA #EndometriosisWesternAustralia #EndoPerth https://youtu.be/dWfwasFkopk

01.01.2022 Earlier this year I was diagnosed with Stage 4 endometriosis. Over my years in Parliament I have been a leading advocate for women with endometriosis, & as suc...h I thought I knew more than most about the symptoms of this disease. Clearly, I was wrong. We still have so much to learn & communicate about this debilitating condition, which is why I recently spoke in Parliament about my experiences in the hope I can help other women too. There are excellent books & organisations that can provide more information & support including: Dr Susan Evans ‘Endometriosis and Pelvic Pain’, visit: https://tinyurl.com/y366x3h5 Dr Graham Tronc ‘Endometriosis 101’, visit: https://tinyurl.com/yxrl5flf QENDO Pelvic Pain Foundation of Australia Endometriosis Australia EndoActive Australia & NZ The Canberra Endometriosis Centre & Network GAIN Inc. Endo Perth Sisters Jean Hailes for Women's Health