Sylvia Freedman is 23 years old and she has endometriosis. Sylvia’s endo is at stage 4 – the most severe – and her symptoms are so debilitating, it has effected every aspect of her life. You can read her story on Mamamia here.
One in 10 women in Australia has this chronic, incurable, gynecological disease that often results in infertility. That’s half a million women with a disease that forces them to abandon their studies, their jobs and their holidays and lands them on the couch or in emergency; and often, when they want babies, in IVF. It costs us around $600,000 dollars a year for every woman with Endo; for doctors, drugs, surgery, natural remedies and practitioners and lost hours of work.
In the course of researching the illness, Sylvia’s mother Lesley discovered that Bayer (an International Pharmaceutical company) has produced Visanne; a pill specially developed to alleviate the pain and inflammation of Endometriosis. The catch? It’s not available in Australia because Bayer didn’t think there was enough demand to make it financially viable to import it – even though it’s been approved for use here.
Instead of accepting this, Lesley and Sylvia decided to make some noise, writing posts for The Glow and Mamamia, appearing on The Project and on national radio to promote a petition they started at change.org/bayer to try and convince Bayer to change their mind and introduce Visanne.
In a private meeting they had with Bayer at the start of this process, Lesley and Sylvia were told that without at least 2000 signatures, it would be hard to make a case for the introduction of the drug in Australia. What happened next, nobody was expecting.
This week, Bayer agreed to make Visanne available for the tens of thousands of Australian women suffering from endometriosis. Here is an update from Sylvia and Lesley Freedman.
“VICTORY!! With signatures from over 74,500 supporters on change.org Bayer have just told us that they will have Visanne (Dienogest) on the shelves in Australian pharmacies early next year. WOO HOO!!!
Today there is a huge vase of flowers on the kitchen bench and a bottle of bubbly in the ice-bucket. Syl and I are floating on top of the world. Half a million other women and girls have this disease in Australia. So where’s the go-to website? Where’s the handy bunch of brochures?
Five weeks ago I felt helpless watching my daughter writhe in agony. I wondered why we didn’t know more about Endometriosis, why there was no clear information anywhere about what pain relief she should be taking. Was it ok to take Panadol and Nurofen together? Why wasn’t it working? Why did she hurt so much? Had she eaten something that upset her? Had she done too much exercise or not enough?
Sylvia and Lesley
Half a million other women and girls have this disease in Australia. So where’s the go-to website? Where’s the handy bunch of brochures? Why are there online discussion groups filled with girls asking the same questions over and over: “Why am I in pain? How can I stop it? The Pill’s not working for me, what shall I do?”
I hate feeling helpless – so I got mad. I focussed my anger on the unavailability of Dienogest in Australia which I knew was having good results for Endo overseas. It’s unfair that although Australia is almost the size of the USA and 50% bigger than Europe we are denied access to all sorts of things including drugs because we’re so far away and we have a relatively small population.
I started a petition on change.org because of that unfairness. I included NZ for the same reason not just because of my All Black heart. We just wanted to show Bayer that there were other women and their doctors who would appreciate a choice of medication. We had no idea what would happen next.
The following days were crazy: we had to keep changing the petition target every few hours. I originally set it for 200 thinking that was overly optimistic but Syl was watching the numbers leap ahead every few minutes and urged me to make it higher – lets go for a thousand! Three thousand! That seemed impossible. I thought it might put people off if the target was obviously out of reach. Duh! Today Syl was looking back through her iCal and reminded me that it was only 5 days between the petition going online and it reaching 45,000 signatories. People were joining even in the middle of the night! No wonder we couldn’t sleep!
We set up a Facebook Page: EndoActive Australia & NZ – check it out – and we are raising funds on chuffed from our supporters so that we can begin the next phase of our Awareness campaign.
Getting publicity was also amazing: thank you Mamamia, The Glow, the Daily Mail, PM. Luckily we’d realised our priorities and got to the hairdresser before The Project knocked on the door. Thank you Access for our emergency mother and daughter appointment: roots and shave (no prize for guessing who had what). That haircut was the last time we sat down together without screens for the next few weeks.
Now we’ve got over 74,500 signatures on the petition.
Now we’ve got over 74,500 signatures on the petition. Obviously such an enthusiastic response wasn’t just about medication – it was about giving a voice to the thousands of women who suffer in silence.
We won’t stop now – Syl and I will go on promoting awareness, education and early detection of Endo. We’ll hold the First EndoActive National Public Conference on Endometriosis in Sydney next year. We need your help to raise funds for that – please donate here.
Endo isn’t sexy. You don’t want to say you have it. You might be asked what is it and the explanation is often complicated and horrible. It is easy for me to discuss something that I don’t suffer from. Syl has been so brave to put herself out there by talking about it openly and publicly.
“Holy guacamole! Just like Mum, I never imagined the kind of traction her petition would gain but when it did, it was obvious to me that ‘outing myself’ as having Endo would just be a given.
I didn’t feel ashamed or nervous to splash my name everywhere and anywhere, openly admitting that I live with a complicated, painful, unsexy disease. Why? Because I want to set an example for others to follow.
What’s more shocking to me than the 1 in 10 statistic is the fact that most of these women are invisible. Where are you girls? Come on out! Water’s warm! Believe me, it’s a liberating experience.
I’ve never felt more proud of myself than in the past six weeks. I know from the influx of personal messages that I’ve helped other women and men. They know that someone else is dealing with the same painful crap that they are. They know that their private issue has now become a public one. They feel validated. And best of all, they know that they have contributed to something much bigger (if that’s possible). Not only have we beaten a pharmaceutical giant – we’ve done it through passionate people power. Together we have raised awareness and achieved the seemingly impossible. Mostly all from our living rooms! When I was diagnosed 2 years ago, I’d never even heard of it.
It’s time to lift the cloak of secrecy off ‘women’s issues’ that are simply put into the too hard/gross/icky basket. I know it can be scary to out yourself but this unbelievably common disease will never be normalised unless we begin a dialogue about it. Why should it be something to be ashamed of? Why should it be embarrassing? I’m sick of nobody knowing what Endo is. I’m tired of explaining it. When I was diagnosed two years ago, I’d never even heard of it. I’m appalled that half a million Australian women and girls are living with it and have no community or government support. I’m heartbroken that girls as young as eight are losing what should be a carefree youth, and will later weep for the babies they may never have, as I’ve done.
Mum has thanked people on behalf of us both but what she has given me, from fiercely loving mother to daughter, is a powerful gift. She has given me my Ikigai – a Japanese concept meaning our ‘reason for being’ or simply why we get up in the morning; that is, a reason to enjoy life. For a long while, I felt like I had no particular reason to get up in the morning. EndoActive has become my Ikigai and I have my Tiger Mother to thank for that. I urge you to find your Ikigai but be patient. It will likely come from the most unexpected place – or even a dark place, like mine has.
EndoActive has become my Ikigai and I have my Tiger Mother to thank for that.
So as we pop our bottle of champers, high as kites on a mixture of adrenaline and pure exhilaration, I’d like to invite the half a million women and girls living with Endo or any other gynaecological disease to be brave and put yourself out there. Let’s normalise this!
Don’t forget to please donate to our Endometriosis Conference here.
Visit our website endoactive.com.au
This story was originally published on The Glow and has been republished here with full permission
Love this story ? Follow us on Facebook
What cause do you think needs more support?
Want more from Mamamia? We’ve just launched a new podcast called Mamamia Out Loud.
Hosted by Kate Leaver with Mia Freedman and Rosie Waterland, it’s a smart, funny, candid chat about sexting, clean-eating, The Bachelor, Lena Dunham, George and Amal Clooney, and (inexplicably) vintage Polly Pockets.