These days I’m a full-time endometriosis patient advocate, co-founder of my own charity, EndoActive, MPhil Medicine student researching and writing my thesis on endometriosis at Sydney Uni, founding member of the Australian Coalition for Endometriosis (ACE) who have successfully lobbied the Australian Federal Government to release the first ever National Action Plan on endometriosis (2018), a Tutor teaching a class on endometriosis for 3rd year Physiology students at Sydney Uni, and spokesperson on behalf on women with endo.
I’m currently studying a Master of Philosophy (MPhil) Medicine at Sydney Uni, where I’m writing my thesis on the endometriosis patient experience. I also have a Masters in Health Communication from USyd.
EndoActive Australia & NZ is a health promotion charity raising awareness of endometriosis. It is my baby.
My Mum, Lesley, and I started EndoActive in 2014 to address the need for information and awareness of Endometriosis. So many people struggling with Endo were crying out for help – desperate to be heard, believed, understood, validated and better informed. To reach those people and at least make them feel like they’re not alone has become my passion. We’ve held 2 conferences at Sydney Uni, which have been enormously successful and produced 2 incredible educational video resources for patients and HCPs.
April 2014 when we started EndoActive, I looked like this
I graduated from UTS in 2015
Bachelor of Communications – Social Inquiry & Sub-major in Media Studies
Back then I looked like this
Nowadays I usually look like this when I’m working or at uni (most days)
Like this on a rare occasion when I can be bothered to do my hair and makeup
and like this when I have endo pain (VERY RARE these days), heavy fatigue (fairly regularly) or a blinding migraine:
and like this at my happiest… when traveling (2017)
And this is me with my incredibly Mum and co-founder of EndoActive, Lesley. (2016)
A bit of back story…
In June 2012, age 21, I was diagnosed with Stage 4 Endometriosis and while this disease in no way defines me, it’s what has propelled me to start writing about some of my experiences in the hopes that it may help others, raise awareness, provoke community action, activism and advocacy and perhaps be therapeutic for myself.
I started this blog because no matter how hard I Googled, I couldn’t find any other Australian girls like me blogging about their experiences with Endo or Egg Freezing. While I’m sure they exist, I simply couldn’t find them organically in my searches and it was driving me mad. I was having a really tough time, I had no idea if my experiences were normal or not and I was desperate to compare notes. The blog aspect was important to me because I found the online support and discussion groups to be overwhelming, information overload, often quite negative and lacking the path of one person’s story.
I’ve always loved journaling and have a storage box full of diaries but there they are privately tucked away and stored under lock and key. I needed to read someone’s story. I needed some help and some validation. If I couldn’t find the story I was looking for, I’d have to start my own. Surely there must be others doing the same thing but where are they and why can’t I find them? This still frustrates me. How many girls just like me are also Googling ‘Endo Blog’ or ‘Egg freezing Blog’ and finding nothing? I figured if one person could find this page and feel a little less confused and alone then that would be a really good thing.
I strongly believe that as a community, we should be openly discussing the things that really need taking about so nobody feels alone and no subject is classified as secretive or taboo. On this blog I write as honestly and candidly as I can about the things I think and feel and just be me.
I encourage you to leave comments and share information – not just for me but also to help others who may be searching for answers and solidarity. Also, if there’s anything you’d like me to blog about I’d be happy to do it!
x x Syl
November 25, 2014 @ 5:02 am
Hi syl,
I’m a 34yr old single mum of 1 beautiful miracle daughter.
I have suffered from this dibilitating & sometimes crippling disease since the day I started menstruating at the age of 12. I was diagnosed very soon after.. As my condition was so extreme and NO hormones of any sort (female or male) could control or slow growth & bleeding my only option was keyhole surgery.. when I was 16yrs old I was told that if I wanted children I would have to have them young…
After 3yrs of constant trying, I had claudia just after my 21st birthday. I have not been able to fall pregnant again since & have NEVER used any methods of contraception..
I now know why; My ENDO has damaged 1 of my overies and destroyed both of my fallopian tubes..
No more babies ruined my relationship in the end & it still ruines me… I would do anything to be able to have more children….It “FUCKED UP” my life..!!
So I understand all of your reasons for doing what your doing, and I thank and praise you for all the good you are doing for such a horrible disease..
take care,
December 1, 2014 @ 1:21 am
Hey Alex,
I’m so so sorry to hear all of that. It’s such a mysterious, complicated disease isn’t it. I really hope that soon, everyone will be talking about it much more and scientists will start getting to the bottom of what causes it. I’m sure that one day there will be a cure but in the mean time girls like you and I can do our part by having open dialogue and trying to raise some awareness. It’s so important and something all of us can do! Happy for you that you had your little girl though. Thanks so much for your support, it really means a lot.
Syl
March 22, 2015 @ 12:05 pm
hi syl, i’m 39 old and I am suffering from the same disease since 5 years ago and get through all kinds of pain that you talking about even the surgery 3 times i can understand exactly what you are talking about the suffer from this kind of pain sometime i can’t hangout with my friends and family because this pains , the pain that make you feel that is not fair for you to suffer from i’m kind social girl love to laugh and go out with my friends but since this disease every thing is change hate to go to my work afraid can’t passed the day without pain but thank to god and my doctor who describe Visanne to me and so far is something good or i can say it’s miracle since i’ve tried every thing but this one is magical. no one can understand what i got through, the pain that i felt no one can believe me when i said that i can’t handle it and get enough of it no one to talk about all that but when i saw your article when you start talking about Visanne i get confused between tow emotions happy that finally can talk about it with someone else understand me and sad about suffering getting Visanne cause here in Kuwait my country this medicine is available , but when i see the blog i recognise that you won the battle and i’m so happy about that. god bless you.
March 30, 2015 @ 11:54 am
Fatima, thank you so much for writing to me. Are you really reading my blog all the way over in Kuwait? That’s crazy!! Wow. I’m so sorry you’ve been having a hard time being in pain, it isn’t fair. That’s great that you’ve had some relief with Visanne though. I really hope it continues to work for you and your family and friends support you. All the best fatima,
Syl x
April 11, 2015 @ 2:51 pm
Hi Syl, i am an 18 year old girl who was diagnosed with Endo at just 15, now that i think back i think i may have started getting symptoms at about 13-14 but never paid any attention to it at all. The pain was becoming unbearable and the vomiting after eating was becoming more frequent, after many tests and ultrasounds there was still no answer to what was happening to me. It wasnt until i was 15 and sex was becoming to painful, the slightest touch would put me in tears screaming for help to stop it, begging someone to make it stop, finally i was diagnosed and put into surgery, unfortunatley my surgery stopped the pain for 6 week, after that i then spent the next year and a half trying to convince people it wasnt all in my head and that i wasnt making it up, eventually at the end of 2013 i saw my gynecologist once again and was put back into surgery once again in January 2014, but once again it only stopped the pain for 8 weeks, just after my 17th birthday my partner and I found out that we had two years to fall pregnant before a hysterectomy would be needed, before trying we decided to do fertility tests to make sure everything was okay to go ahead and try, it was then i found out i was not ovulating at all, so now after a year of fertility treatment and suffering of the constant day to day pain we can begin to try, although not without many complications getting in our way and being denied IVF. I am now 18 and have one year left to have my dream of carrying my own child, my teenage years have been one of the hardest and most painful times of my life, all i want is for the pain to stop, for someone to find a cure so to say, for someone to find something to stop the pain us women go through every day.
i would just like to say how thankful i am to you for doing everything you can to help us woman be pain free.
( sorry about the long message )
May 21, 2015 @ 11:38 am
Hi Sly,
Love your blog, I have had endo for over 20 years, i have had 15 ops including to big cut ops as the first dr stuffed up and should of done key hole. At 28 i was told i would never have kids but two miricles later……. had the marina put in three years ago which made a huge diffrence but in the last three months ive had two horrid flare ups, including a 4cm Cyst which thankfully bleed out without anouther op, yesterday my Dr gave me a scrip for Visage, just waiting to hear back from him to hear if it is a ok to take as on top of the marina. Thank you for being our voice and going into battle for us. Sam WA
May 21, 2015 @ 11:52 am
You’re welcome Sam. Hope everything goes alright for you and you start to improve! 15 ops!!! holy crap that is unbelievable and I pray you don’t need any more!! If you haven’t already, look into self-management options to try and keep the endo under control in conjunction with medical management. If you’ve had endo for over 20 years then I’m sure you’re already on top of it but I feels it’s my duty to say it anyway as I know a lot of people aren’t simply due to a lack of information. I’m still learning new stuff all the time! Best of luck x
April 1, 2016 @ 3:56 pm
Hi Syl,
Just wanted to say that Im really moved by your posts and feel like theres someone in Australia that really gets just what Im going through
So thanks, Im following! 🙂
Einat (Israel)
April 5, 2016 @ 12:01 am
Hey Einat, that’s so great to hear. Make sure you come over to our EndoActive facebook page and website if you’d like more info. We made a DVD on Endometriosis available from endoactive.org.au which you might like.
Can’t believe you’ve found my blog all the way over in Israel! How did that happen?
Syl xx
April 7, 2016 @ 5:31 pm
Just through google, basically 🙂
I’m trying to buy it through vimeo but it wont work… I might have to just buy the DVD. Also the resources part of endoactive is REALLY helpful
There’s a group of us here that are working on setting awareness about this here as well, and while we have a pretty strong community, mainly through a Facebook group, we still need to really work on acknowledging others
so this is a real inspiration 🙂
June 22, 2017 @ 9:00 pm
Hi Syl
I’ve read through many of your blogs but unless I can’t see for looking …(it happens) I haven’t been able to see much on your Visanne journey or apparently you tried the Merina at one stage – and how you went with that. My daugther is 18yo and we our advice from local gyno in rural Qld was to go on the Merina but I was very interested in what visanne has the potential to do. Trying to source the best info for what is around at this time but it is very hard. Any light you could shed would be much appreciated.
Thanks so very much
Sharon
Hervey Bay
February 27, 2018 @ 12:02 am
I’m so sorry for the late response Sharon – Visanne has worked brilliantly for me. I’ve never used the Mirena but some women love it, others hate it. I have been pain free for 2.5 years and felt the best I’ve ever felt! Since September 2017 I’ve had problems with fatigue and my immune system and some pain but that’s now gone. Endo works in funny ways. Dietary changes, eating anti-inflammatory foods and drinks and cutting out gluten helped me ENORMOUSLY!!! Hope this helps. Syl xx
December 16, 2017 @ 4:43 am
Hey Syl! Absolutely love you work. For some reasons I’ve only just come across your blog via EndoActive on Facebook! I’m an Australian woman blogging her way through infertility with Endo. It’s amazing how many women suffer silently with this chronic disease. Keep it up!
March 29, 2018 @ 9:00 am
Hi Syl, I just wanted to say a massive thanks. Almost 3 years ago, I read an article on MamaMia written by you- discussing endometriosis. I read it, and was nodding my head along the whole time of reading it. From the age of 15, I have been investigated for every single thing under the sun (and was told my constant crippling abdo pain, nausea, vomitting and many other symptoms was just anxiety!). I have had blood tests, ultrasounds etc etc almost every year for 7 years. I then went to a new GP recommended to me, brought up Endo (because of you!), and she was so shocked it had never been suggested I may have it- she then referred me to a Gynae specialising in Endo. I have been on Visanne for 2 years, and it has changed my life. So once again, thank you so much for your hard work everyday. Just wanted to let you know you are the reason I can now function!
May 10, 2018 @ 4:37 am
Brilliant! xxx