Reaching out to Government

"It is really difficult watching my friends go out and have fun, and having to turn them down yet again..."

Hi, I'm Broady. I'm 18 years old. I can’t say specifically how long I have been sick for. The years really do roll together as one big messed up blurry ball. It’s getting harder and harder to live with it now. The last 18 months have been diabolical.

I am currently a correspondence student, and even though I get to do it all at home, I still have no energy. I sleep for hours and hours and still wake up tired. In fact I have only been awake a few hours and I already feel like I need to go back to bed. It’s something I have sadly got used too.

I was diagnosed with Chronic Fatigue about a year ago. I was given meds to relieve stress, but they didn’t help. I was walking in my little township and passed out. An old lady helped me out, she used to be a midwife. She thought I had a pelvic infection and took me to the doctor, who said 'its just period pains go home and have a panadol'.

Before then I had never had period pains. Now, I get sharp pains all the time. Financially it is difficult. My partner supports both of us. I feel guilty for not being able to contribute. I guess I am lucky to have a man stand beside me no matter what.

Being sick has had a massive impact on our relationship. We have been together for 3 years and
18 months ago we had a pregnancy 'scare', which really excited us. We tried all through the last 18 months to get pregnant. I was having normal periods for 3 months, and then having a 'pregnancy' for 3 months. I had all symptoms of a pregnancy. I would be on the couch in absolute agony and have a heavy clotted period. The emotional turmoil my boyfriend and I have gone through is unexplainable.

I hope I can get better, and live my life. It is really difficult watching my friends go out and have fun, and having to turn them down yet again cause I am too tired or too sore. The real sad thing about it all is I never knew about Endometriosis before finding out my Nana had it. That was about a month ago. At the moment I haven’t been diagnosed yet, but I am trying to get my GP to start listening to my symptoms. 

“It was like a weight had been lifted - someone believed me, it was real, I wasn’t a nut job anymore!”

“…I didn’t think for one second it would actually be endometriosis, not after all the running around the other doctors had put me through, and when I was told that I would have to have a laparoscopy to determine if I did actually have the disease, I was convinced that they would open me up and not find anything. When the specialist told me in the hospital that day, that I did have endometriosis, and that she had found it, it was like a weight had been lifted - Christ, someone believed me, it was real, I wasn’t a nut job anymore…”

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"If somebody had listened to me 5 years ago I may not have had to go through all those years of pain"

From the age of eleven when I first started getting my period I have suffered from excruciating period pain. As I got older my pain became worse and I started having up to a week off school at that time of the month. I would cold sweat, vomit and just feel so down in the dumps. None of my friends had this, I began blaming myself for having it, I thought if I was skinny I wouldn’t have got my period so early and by the age of 14 I wouldn’t have such bad pains. I had endless trips to the doctor to be told I was a drama queen, or I had gluten intolerance or I may have endometriosis but we will leave it till you are a bit older, just go home and take some panadol.  At 16 I left school and began A.U.T this is when my pain became worse and I could no longer justify or ignore it.

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Hello everyone, I would briefly like to introduce myself, I am Elaena, and I am now onboard with ENZ as a me educator and to work specifically with young adults struggling with Endometriosis. I have just spent the last week learning how to keep this blog updated for you so please, please send me your stories.

This blog could be a cool way for you to share your journey, read about other people’s stories, comment directly to any of the postings on the blog, and keep up to date with new stuff happening around New Zealand with Endometriosis. Importantly, we can use this blog to show Government the overwhelming need for increased awareness of Endometriosis to reduce this hideous diagnostic delay and better support for girls and women with this chronic disease.

The bigger the voice we can create, the greater the impact that voice will have. 

The journey continues...

As the letters and stories keep coming in to be posted on the blog, I would like to again thank everybody for their effort and contribution to our awareness campaign.

Last year hundreds of letters hit the Minister’s desk, and we had an opportunity to raise endometriosis as a chronic condition needing urgent government recognition.  We took your stories with us!

With changes to caucus and the Minister of Health, some time has lapsed and we now finally have another opportunity to present the case and move forward. The evidence will prove that it will be effective to raise awareness in adolescents and develop guidelines to improve treatment and management.  Our ability to achieve this has been greatly enhanced by Mai Chen of Chen Palmer, Public Law Specialists who has used her influence to assist us. This is a fantastic chance to raise awareness amongst some very influential women of the impact that endometriosis is having on lives and health funds. 

If you are still thinking about sharing your story on the blog (or for those of you who are extra brave on YouTube) there is still time. Please, keep them rolling in.

You can view the blog and post a comment by visiting http://endonz.typepad.com

If you would like to post a video or put your story up on the blog, email ehavell@xtra.co.nz and she’ll walk you through it.

Thank you again and I look forward to continuing to receive your stories and support.

Debs.

"I only have this one chance at life and one body to love"

"My endometriosis has come back and with a vengeance. It has completely taken over my life, it is hard to remain hopeful myself after experiencing this disease for my entire adult life and the misery it causes to not only to myself but my loved ones. So here I am, 24 years old and my ugliness has not only come back and taken away my dignity once again but has robbed me of a future with someone I had planned to spend the rest of my life with because he can no longer cope with the effects of my debilitating illness. I wish I were able to walk away from ‘me’ no matter how much I wish I could, I can't. I only have this one chance at life and one body to love..."

Jessie Gurunathan, Winner of Miss Popularity 2005
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"It pains me to know that there are so many young talented women... suffering"

"Endometriosis had been reminding me of itself for 6 years until I'd found a talented 'tummy' expert who saved me from my misery. During the 'stink' years I felt like 'climbing the walls'. I'd stayed in bed in foetus position with tears rolling down my cheeks. I'd envy my friends for 'having it easy'. Why? Why?, I kept asking myself. No doctor could diagnose me. 'It will pass', they said. What did pass was years but no real solutions had been found.

It pains me to know that there are so many young talented women out there who are suffering from this excruciatingly unfair experience while they can be living their lives to the full!"

Yulia, top selling New Zealand artist.

"An invisible illness"

".... Yes I do stress all the time, I cry myself to sleep at night wondering what to do. I get to the stage where I can’t cope anymore. Instead of great support I get horrible negative comments like it’s just a period, get over it girl, stop being a drama queen, or over dramatic. When I get these nasty comments it hurts me so much knowing I am so young and have to deal with this illness on my own. I fell lonely all the time not having anyone for support and some one that is understanding how I am feeling..."
Chloe
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"Perform dedicated work... to inform and educate women"

"...We laud the efforts of Endometriosis NZ and organisations like this which are active in many countries of the world, who perform dedicated work often voluntarily, to inform and educate women of Endometriosis. Recently the European Parliament has officially recognised Endometriosis as a serious problem and endorsed funding for research and education...."
Charles H Koh, M.D., FRCOG., FACOG.
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"In my experience I hit brick walls"

"...I battled with endometriosis for 10 years of my life. It was at a very tricky time being a teenager and through my twenties that I fought with this debilitating disease. I was only able to manage the condition through education and support from my family. I found resource books on the subject from England and was able to get an idea of where to go from there. There is more being done to help women with the condition now, but in my experience I hit brick walls..."
Kirsten Morrell, Lead singer of New Zealand band Goldenhorse
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