Massive breakthrough for women in Australia suffering with Endometriosis!

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'We won! We beat the big guys!': Lesley (left) and Syl Freedman (right) won the fight for a new powerful drug to be brought to Australia to help women with endometriosis

Lesley and her daughter Sylvia celebrating their victory

 

I honestly cannot contain my excitement this morning – after finding out that an inspirational mother and daughter team have defied all odds to make a change for women suffering with Endo in Australia.

Months ago I first saw Sylvia and Lesley’s story, on a great Australian women’s blog Mamamia. It was a piece written by Lesley, a woman who was struggling watching her daughter Sylvia battle the symptoms of Endo daily, with there being no way for her to help her.

Like many women living with Endo, Sylvia had not been actually diagnosed with her Endometriosis until 2 years ago, after suffering for many years in the dark before that. Since her diagnosis she had undergone two very fast Laparoscopy’s, trying to get her symptoms under control, but once again like many women, that did not help her – only made it worse if anything.

But then Lesley came across a drug in her research, called Visanne. (click for information on the drug)

“This is how I’m helping my daughter: Bayer (an International Pharmaceutical company) has produced Visanne; a pill specially developed to alleviate the pain and inflammation of Endometriosis. Unlike the usual contraceptive pills this one has no oestrogen.

But – how unfair is this? – you can’t buy it in Australia. It’s been approved for use here but Bayer thinks there aren’t enough women who need it to make it worthwhile putting on the market. Women in Canada, South Africa, Europe and South America can get it but Australians and New Zealanders don’t get the choice.”

After discovering this drug, reading about how it had helped so many women across the world but apparently there wasn’t a ‘market’ for it in Australia, the duo took measures into their own hands, creating a petition to show Bayer that there is in fact a very large market for it in Australia who could benefit from this drug.

And today, after reaching 75,000 signatures, Bayer has listened, and has informed the women that Visanne will be available in Australia as early as next year!

I wish to extend a massive thank you and congratulations to these women. Not only have these two regular Australian women got a big drug company to sit up and listen to them, but they have also changed the way that women in Australia receive treatment for Endometriosis – giving us another option when we may feel like we have run out. When we have had multiple Laparoscopy’s, been given a cocktail of dangerous painkillers and seen more specialists than we can count, we now have something else to turn to, instead of it just being the end of the road.

This story gives me so much more belief in the power of people working together to make a change. If you believe in something and if you want something bad enough, with a few people on your side, anything is possible.

Bravo, Lesley and Sylvia. I’m sure one day I will need to turn to Visanne, and I thank you in advance for bringing it to Australia.

 

 

You can read more about Lesley and Sylvia’s journey here and the story of their victory, here

 

 

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Where do you draw the line when it comes to being ‘better’?

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In life, people often want to be ‘better’ than what they already are. Better than how they have been naturally made.

They want to look better, do things better, get better friends, have a better job than someone else and feel better than they did yesterday.

Why does everyone want to be better? Because we have the choice to be, and people think ”well, others are doing it so I guess I should too!” What do you have to lose right?

We have millions of choices in the 21st Century that all allow us to be the ‘best version’ of ourselves. You see the ads on TV. The marketing in the streets and in shop windows. They convince you that being better is good, easily achievable, and that they can help you get there! We can get the best house, best car, best hair and best of everything right here if you want it! But what no one has seemed to explain, is if you get caught up in this, how do we know when to stop? How do you know when everything is ‘the best’?

For years I complained that I was sick. I was in horrendous pain and I couldn’t do anything else but sit around and feel sorry for myself. So what do you do when you feel sick? You head to the doctor. They make promises of achieving the best health that you can have with a wide friendly smile attached to their advertising – why wouldn’t you put your full trust in them right? So I had treatment after treatment, medication after medication, and no matter what I did, I didn’t feel any better. If anything, all the medication that I was putting into my body was making me feel worse. Even though the medical world actually promises you that they can make you feel better due to all of their extensive education they’ve had on the subject, it’s not always true. I felt so let down by them. They are doctors, their job is to make my health better, and they couldn’t do it.

I fully put my life in the hands of doctors. I would run to them when I had an issue and they would recommend a pill to take to fix all of my problems. And I saw no problem with that. Other people who are sick always go to doctors and they can feel better. What did I have to lose, right!?

But I recently realised what I was losing by going about things that way. I was losing hope, money, time and happiness. I was caught up in the magical idea of having perfect health. I was chasing this idea for years to no prevail. That if these doctors could get rid of this illness I would have the best life ever. The shiny pot of gold at the end that these doctors convinced me was there. I just had to give them a little bit more money each time, and eventually I would get there.

What I didn’t do through that whole time, is asked myself what I thought was best. I not once listened to my body and helped it using my instincts. I never stopped and thought about it, my first thought was to run to a ‘professional’ like everyone else.

And do you know what? Recently I have gotten a lot better. And I achieved that by actually stopping to try and be ‘better’! I stopped focusing so much energy on trying to get better. I simply just started enjoying my life, and accepting it for what it was, after all, this illness that I have is not curable, so, what was I thinking? Where did I ever get the idea that anyone other than myself knew how my body worked and knew what it was that I needed to be better? Advertising. Marketing. People telling me that it had helped them in some way. Why didn’t anyone along the line tell me to manage my health on my own? Because, the ‘professionals’ of your health, that tell you that they can get you better, wouldn’t make any money that way.

The moment that I started to be better, is when I did what I wanted to do to make myself feel good. I started looking at the deeper issues that may have been causing my pain, and treated my body with love and care. I made sure that I was happy, surrounded by positive people, doing things I love and nourishing my body.

Why should I trust a stranger to tell me how to be better? Whether it’s a doctor, a make-up artist, a retail clothes shop assistant, or an acquaintance that has an opinion. Their idea of me being ”better” than what I already am is only their opinion. And at the end of it all, would I really have been better if I just continued to follow the crowd? I honestly don’t think so. It’s a beautiful illusion that a lot of people have created to make money.

It’s hard not to get caught up in everything going on around us these days. But what I’ve learnt is that you always need to hold on to you. No body in this world knows what’s better for you, than you! Don’t be fooled by other people’s promises. At the end of the day, you are the only one that can create the best version of you.  

Today’s question: What does Lou Gehrig’s disease and an ice buket have in common?

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Amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig’s Disease in America, or Motor Neurone Disease in Australia, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralysed.

Basically, a diagnosis of this condition is a death sentence. The muscles spasm and lose function, you have difficulty swallowing, and then eventually, breathing.

What I wonder, is what does this awful disease have to do with Ice Buckets? Like literal plastic buckets, full of ice water. The ones that people, celebrities and the general community alike are using across the globe currently to ‘raise awareness’ of the cause.

And how exactly, does throwing a bucket of ice water over yourself raise awareness of this debilitating condition?

I’m not saying that the worldwide publicity of this isn’t amazing – it is! All you need to do is go on Facebook, watch any news channel or be living in an area with a few people – and you are bound to have heard about it or someone doing it. The craze has even reached celebrity status, with literally the most famous celebrities in the world taking part in the phenomenon. Something that is often very hard to achieve.

But at the end of the day, are the sufferers of this disease getting any benefit from this? Are the people taking part in the ice bucket challenge actually donating their money or time to help them? Do most of these people doing the challenge even know what it is for? Do they even understand what Motor Neurone Disease is and how it affects people and their families?

I hate to be a critic but I have seen this time and time again and it is frustrating. Often those wanting to raise awareness of Breast Cancer do similar things, which yes are a lot of fun but are they actually achieving anything with it?

If you want to help a cause, if you truly care about those who are sick and suffering with certain illnesses, then why not simply donate money to research, or take part in some sort of fundraising that actually educates people on the condition, so that people can continue their work to finding a cure for these poor people.

Because I think at this point everyone has got a little caught up in the whole challenge thing. A campaign that was originally started by a man whose close friend had been diagnosed with the condition and he wanted to help, has now sadly become a craze that’s turned into something similar to that of the ‘Neknomination’ phenomenon. Something that has no purpose and is just a bit of fun for all involved. And the real issue has been pushed aside.

And while the world has been having a ball throwing buckets of ice water on their friends and nominating people to do it after them, in a horrible twist, the man who started it all for his sick friend, American man Corey Griffin, 27, has died, from drowning.

So yes, while it is great to have a light-hearted campaign like this one, encouraging the world to unite as one, it is also important to never lose sight of what is truly important, to always focus on the real issues at hand, and to always look after those close to you. I’m sure Corey’s friend Pete Frates would be very proud of what his mate was able to achieve for him. And I hope that because of all this, those searching for a cure of Motor Neurone Disease will have enough money and support to continue, and Corey’s death won’t be in vain.

 

Mind over Matter

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Mind over Matter
Phrase of mind.
1. the use of willpower to overcome physical problems.
 ____________________________________________________

It has been such a long time since I have written on The Endo Diaries. And so much has changed in that time! It really is incredible how much can change in such a short amount of time.

In the last 6 months I have achieved so much, and I believe it is because this year I have chosen to be happy, positive, and do anything and everything that I want to do, under my terms.

I have been overseas, twice. I have moved house. I have been studying. I have been setting up a business. I have surrounded myself with only the best people. I feel great, have lost weight and have been keeping very healthy. I have an amazing relationship and job. Everything is new, exciting and I am the happiest that I have ever been.

But, don’t I have Endometriosis?

I do. But, that has not even crossed my mind recently. Because the power of the mind over matter really does make a difference.

The moment that I went overseas, I forgot about Endo. I made the decision to not think about it or worry about getting sick over there because that would have brought me down and ruined my trip. Instead, I chose to have a good time. Take everything in and make the most of every opportunity that I got over there. And I have continued to do the same thing ever since I have returned.

But, what if I did get sick over there? What would I have done?? I’m currently on no medication, and took none with me… That’s asking for trouble right.

And I’ll admit, I was nervous when I took off on that plane with no back up, and no safety net. That was the first time in my life that I had ever, ever done something like that (and I’ll also admit, it wasn’t totally my choice to go cold turkey and take no pain relief… I did try. But everything had stopped working for me.) However, that little leap of faith has done nothing but lead me to bigger and better things. It could have gone the other way, yes, but it didn’t.

The lesson I’ve learned? That sometimes it’s better to live life in the moment, and not let anything hold you back from doing what YOU want to do in life. Because what if one day you look back, and wished instead of spending all of those days in bed you were out in the world experiencing it? Or you spent days worrying about what only might happen to you in the future and that thought held you back, only for those things to never happen…

Endometriosis is a serious, debilitating condition. And I’m sure it will affect me again in some way in my future, but until that moment, I’m going to live the life that I want. And that life has nothing to do with Endo.

 

New point in time. Same old shit.

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The dreaded pain is back.

And like clockwork, the exact same sequence of events began to happen like it had the time before that, and the time before that.

Step 1. I went into a panic as I always do when I feel the early signs of symptoms coming back, and I called my Endo nurse. She says that she doesn’t know what to do, and will speak with my surgeon and get back to me.

Step 2. She never rings me back. And I panic further – I ring my GP to see if I can get an earlier appointment than the one I (luckily already had) booked, but I can’t because he has had no cancellations and is booked out.

Step 3. I then begin to get really down and sad. Feelings like, why now, why me, I wish I didn’t still have to go to work.

Step 4. Think of my career in the future and how I hope it can work around these times when I am sick, and I will never just have to suck it up and come to work when I’m not well ever again – because my work doesn’t understand, and therefore I feel overwhelming guilt when I am sick.

Step 5. I then realise that this has all happened before. The exact same things have happened before.

And not just once or twice, but 3-4 + time a year. For 8 years. In the early days though I didn’t have an Endo nurse, just my GP that I could never get into. And when I couldn’t see him, I got mum to take me to emergency.

And my Endo nurse does manage to call me back eventually, when she and my surgeon have had a good hard think about what they can possibly tell me. But it’s still to this day, the exact same answer that she gives me. I could almost write a script for the conversation – “Hey Alex, yeah I spoke with Russell and he doesn’t really want to put you on any strong medications at the moment, if you could maybe just continue alternating between panadol and some anti-inflammatory tablets that will settle things. Sorry I don’t have anything else for you, you are a bit of a hard one but keep taking the tablets and keep your head up.”

My surgeon never wants to put me through another Laparoscopy. He never wants to give me any medication that takes my pain away. The last two things I have been prescribed have temporary menopause side effects, and the first one I learned to handle, but the second – I just thought that I am too young to having to put up with crap like that. Surely there has to be another way.

I think there just comes a point in everyone’s life, and it could be do to with anything – your health, your age, your relationship etc. where you realise what you are doing just does. not. work. And you need to take another road to be happy.

I can see now that if I ever want to be healthy and happy and comfortable working in the future, I need to seek out new ways/new doctors to help guide me towards good treatment plans.

 

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