One in 10 women have endometriosis. Everyone’s experience is different, some women experience pain, for others its completely painless. Its a condition where tissue found in the lining of the uterus grows in other parts of the body, so with each menstruation, as the lining of the uterus is shed, that extra tissue also bleeds. This can cause inflammation, cysts and adhesions. In time the scar tissue can form and grow covering organs and other tissues, ultimately causing damage. it is not sexually transmitted or life threatening however is a very debilitating condition and not talked about openly enough. Its important to remember you are not alone, theres some amazing support groups out there, one of which is QENDO who have an awesome initiative called The Endosister Program. After diagnosis when theres so many questions, and this program connects you with a special support worker who can answer all of your questions and guide you through each and every part of your journey. Sometimes this involves drug therapy and /or surgery, always remember too all of the alternative therapies, acupuncture, herbal remedies, naturopath and dietician to remove any inflammatory responses you may get from your diet. These therapies are all important to learn more about how to help your body recover after treatment too.

Welcome to the Sisterhood: The EndoSister Program

August 5, 2019

|

Dannielle Stewart & Lauren Iacobucci

There’s nothing like endometriosis to make a person feel alone and isolated, despite the fact that 1 in 10 women have the debilitating condition. When one is on the journey to diagnosis, it’s easy to wonder if you’re the only one in the world facing what you’re going through and in many ways you are – this may be happening to other people, but it’s the first time it’s happening to you, and that matters. When you finally hear those words, “you have endometriosis”, it can be associated with many different emotions – sadness, anger, confusion, fear, relief. When one opens that door, one realises how complicated this brave new world is, filled with new information, new treatments, and a myriad of management strategies that you have to begin to decipher and decide which ones are right for you. In an episode of Aaron Sorkin’s The West Wing, Leo McGarry tells an ailing Josh Lyman, who has recently suffered a trauma and fears for his job, a story:

 

           “This guy’s walking down the street when he falls in a hole. The walls are so steep he can’t get out. A doctor passes by and the guy shouts up, ‘Hey you. Can you help me out?’ The doctor writes a prescription, throws it down in the hole and moves on. Then a priest comes along and the guy shouts up, ‘Father, I’m down in this hole can you help me out?’ The priest writes out a prayer, throws it down in the hole and moves on. Then a friend walks by, ‘Hey, Joe, it’s me can you help me out?’ And the friend jumps in the hole. Our guy says, ‘Are you stupid? Now we’re both down here.’ The friend says, ‘Yeah, but I’ve been down here before and I know the way out.'”

That story has always resonated with me as Support Coordinator, because it is so apt for what we do as support workers and EndoSisters at QENDO. All of us who work for QENDO have been touched personally by endometriosis, usually through our own diagnoses, but sometimes through seeing a loved one with this disease. We are the very definition of jumping into the hole to help someone out, because we ourselves have been there before – and we know several different ways out. I am always moved by my amazing support team, that they do all that they do as volunteers – there’s no payment for what they do, but they give 100% anyway. Their motivations are something much more special: the desire to make a difference in the life of someone with endo or adeno. Support has been QENDO’s heart for 31 years, celebrating our birthday as an organisation this August, but since 2018 we have made a reality a program that offers one on one support to those with endometriosis. That’s where our EndoSister Program comes in. Our EndoSister Coordinator Lauren embodies the same spirit, and that why she’s a fantastic leader for our EndoSister Program, ensuring that we can provide partnerships for those in need. Teachers and parents among us are surely familiar with the buddy system, whereby a prep or grade one student is buddied with an older student, say in grade five or 6, to show them the ropes and guide them through what is often a big and overwhelming new world – that’s what we do.

Peer support is so important and that’s where the EndoSister Program comes in! It gives you the chance to meet or talk with a ‘Sister’ who has been through, or are going through a similar experience! Our EndoSister Program is open to anyone affected by endometriosis! You might have just received your diagnosis or you may have been living with the disease for a while. Big EndoSisters are there to support you! Each Big EndoSister has completed our Support Worker Training, so they know what they’re doing. They also have endometriosis, just like you and will have a good understanding of the disease. They might have a similar experience to you, or completely different. Either way a Big EndoSister will have your back! The aim of the EndoSister Program is to help you, by giving you someone to talk to and connect with, so you don’t feel so alone. Being part of a sisterhood that supports and surrounds you when you’re feeling down, and cheers you when you succeed can make all the difference to your endometriosis, adenomyosis or PCOS journey.

Our EndoSisters come from a variety of backgrounds and have so many different stories. To give you a snapshot of the passion and dedication of some of our EndoSisters, and what you can expect from the role of EndoSister, we have gathered together some testimonials from our Big EndoSisters, where they share what they love about the program and their role.

When I was first diagnosed with endo, I felt very isolated and lost. The medical professionals I would usually turn to didn’t have all of the answers. Being a part of the endo sister program allows me to use my experiences to help other endo warriors find their way so they never have to feel alone. – Nicole

Being a BigSister means I can pass on my knowledge and support to someone who needs it. It means that that person won’t need to work through the mine-field of mis-information that I needed to. Being a BigSister is an honour. – Jessica T

The EndoSister program lets me use my experiences with endo and different treatments to help others. It means no one is alone through their endo journey. – Lauren

The EndoSister program has given me the opportunity to give back to a community that gave me the support I needed when I was first diagnosed with endometriosis. A Big EndoSister is a friendly face in the crowd, an umbrella on a rainy day, that look that says “hey, I get it”. Being part of this program is a privilege, and I’m so proud to be part of it. – Dannielle

Being diagnosed with endo can be scary, confusing and overwhelming but being a big endosister means that I can help other women to feel a little less alone. Knowing that I can help make someone’s endo journey even a little easier means so much to me. – Sarah

The EndoSister Program allows me to share my experience and knowledge on this condition to help them understand how endo can affect us, and to know they are not alone in this journey.  – Phuong

As a big endo sister, I feel like I can connect with those who don’t feel as comfortable yet and are confused and upset about being diagnosed. I want to and I will help as much as I possibly can to give as much support, understanding and knowledge to my little endo sister. I know how challenging it is to have endometriosis and the endo sister program gives me a chance to connect with others who need that extra little bit of guidance. I have been in their place before in that dark, uncomfortable stage of a diagnosis or just struggling with endometriosis in general and I know how important it is to have someone who understands, and there’s nothing better than getting a raw, unique genuine girl who just gets it! – Chelsea

When I first became a Big Sister I couldn’t wait to help guide other women along their journey with endometriosis. I didn’t expect it to help me so much along the way as well. Connecting with other women going through things you have been through and helping guide them along the right paths is so rewarding. I love being apart of something that brings support and friendships to women all across Australia suffering from endometriosis. This program has now made me want to become even more involved in other ways of volunteering with QENDO. – Courtney

I’ve loved being a part of QENDO’s EndoSister Program as a Big EndoSister! Helping and supporting someone else who’s going through something similar to what I have, and being able to make that process easier than it was for me, has definitely been the biggest positive! If you’re wanting to make a difference in the life of a fellow EndoSister, and gain some wonderful friends, the EndoSister Program is for you! – Isabella

Our EndoSister Program is incredibly popular and as such we have introduced intakes. Big and Little EndoSister intakes will open at certain periods throughout the year. This allows us to ensure we can provide adequate training and mentoring for our Big EndoSisters, and adequate support for our Little EndoSisters. Should you require more urgent support, please contact our 24/7 support line on 1800 FOR WOMEN  (1800367 96636). Our Big Sister intake is now open and will run for 2 weeks. You can apply at https://www.qendo.org.au/endosister