Keeping it Reel with Endometriosis

14 / 03 / 2013

March is Endometriosis Awareness month, a medical condition which affects many women.  To help share the stories of women who live with endometriosis, this month’s Keeping it Reel highlights Nicole Fernley’s story. This photo was taken in the Philippines, after Nicole spent some time volunteering there over the Christmas holidays. She has also sent Sheilas this article on living with endometriosis. Thanks for sharing, Nicole! 

 

By the way, have you heard about endometriosis?

“Hello, my name is Nicole and I have endometriosis. I suffer from very heavy periods, pelvic pain a large part of the month, erratic cycles and exhaustion especially when I have my period.”

This isn’t quite the introduction we typically give. But in March it is Endometriosis Awareness Month and after a very long and frustrating journey navigating the medical system to try and work out what was wrong with me my main wish was that I had someone tell me about Endometriosis.

My journey has taken 20 years. I wished I had been told about endometriosis back then starting at the age of 13 when I had seizures with my first period or possibly when I had a ruptured ovarian cyst and emergency surgery at age 15, maybe even when I was begging in an Emergency Department for someone to help me with my pain or even when I consulted my first gynecologist.

All I needed was that one person to say to me – ‘Hey, have you heard about Endometriosis?’ It affects many women and most people I have talked to since diagnosis have walked a very similar and long path to find answers.

So I want to be that woman saying to all you women and the men that may be reading this – it is time to get clued up on what endometriosis is and how it can affect a woman’s life. It is time to start talking about your periods when things aren’t going well hormonally. Please know periods are not meant to be painful, it is not something we need to be silent or embarrassed about but most importantly you are not alone.

My message is one of support. I felt very alone as I attempted to advocate for myself especially when surrounded by professionals. I became acutely aware there is not enough awareness, understanding, training or compassion for people who are going through medical issues with an unknown label nor with the professional that treat us in regards to endometriosis.  I learned that being a patient is one of the most vulnerable places you can be.

The best advocate for yourself is yourself – don’t forget that. Too often I was told not to worry that it was just a bad period, to hop on a different pill for some relief or that I was “bringing it upon myself” and to forget about it and relax. Instead I stood up for myself and chose second and third opinions. I kept on asking questions and finally found a wonderful gynecologist who listened, understood and decided that I needed some real investigations rather than Band-Aid treatment for pain or just trying out new contraceptive pills.

The gold standard tool for diagnosis is a laparoscopy and on the day after my 33rd birthday I was diagnosed – best pressie ever!

Next best thing was coming across a wonderful support group full of women who have been through a very similar adventure with whom I have laughed, shared and cried. We would love to see you there:  Epworth Freemason’s Women’s Endometriosis Support Group. Meetings are held on the last Monday of every second month at the Epworth Freemasons, 166 Clarendon Street, East Melbourne. The contact person is Wendy Dawson 94833687 or by email on wendy.dawson@epworth.org.au.

So this time instead of battling for myself – it’s time to start battling for others. My advice to you is to be armed with knowledge and awareness but most importantly always believe in yourself when something is wrong. Please keep asking questions and seeking answers. Please go see your doctor or gynecologist if something isn’t right! Don’t put up with it – there are treatments out there.

By the way, have you heard about endometriosis?

 

I’ve decided that I should leave the technical advice to the people that know their stuff.

So please visit the following websites:

http://www.ecca.com.au/

http://www.endometriosis.org.au/

http://endometriosis.org/

 

May I also recommend the book “Endometriosis and Pelvic Pain” by Dr Susan Evans with Deborah Bush.

http://www.qendo.org.au/endometriosis-and-pelvic-pain/

 

The best bit about having endometriosis is knowing I no longer go through this alone.

 

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