Upcoming Surgery for Stage IV Endometriosis

My name is Emma and I'm 39 and live in country New South Wales, Australia. I'm on a single income paying a mortgage like so many around Australia. My story unfortunately is not unique. I need surgery more quickly than can be provided by public health.

Like so many women I got a very late diagnosis of Endometriosis at its most advanced stage, infiltrating multiple organs and ligaments, reducing my quality of life hugely and impacting my ability to do full-time hours at work. I was wrongly diagnosed multiple times over the years with anything from severe PMS to Conversion Disorder or FND. But this is the common thing with Endometriosis patients. According to data, it takes on average 10 years for someone to be diagnosed.

I had given up hope until I got in to see the surgeon who listened and did diagnostic surgery in April this year. She said, "Your story is all too common, it's often diagnosed when there's so much damage". All I could do was thank her. I was so grateful for some answers. But I need surgery that is too big for her to perform or be performed locally because of how far it has progressed. My mother warned me that a total hysterectomy may still be the result. But my specialist said we really want to avoid that, she was very compassionate.

To give you an idea of what it's done to my body, I have so many adhesions that organs have been pulled to the right side and all out of place - causing referred pain down the whole right side of my body. We thought MS at first because I have so many similar symptoms. I have a feeling my recent tests for that will be entirely negative. But stage 4 Endo can very much affect the nerve pathways.

I have a high pain tolerance but have had to wait it out countless times before returning to work over so many years. It's a great mimicker of other diseases, numerous times I went to the Emergency room thinking I had appendicitis or gallstones. Pain and sensory symptoms are now constant. I felt stupid in the end for going to Emergency, when I knew I would come out with a dose of ibuprofen after a long wait, feeling more and more stupid the more I presented there. I changed GPs, I went to an Osteopath and a Naturopath & Physio trying to find out what this mostly right-sided pain could be. Even my ultrasounds said "Normal" until one where my right ovary was enlarged, and my left ovary was shown to be "stuck" and not free-moving.

My situation is complicated by a condition verified by a Sonic PGx Panel done in 2020, which showed that my liver doesn't have the enzymes to metabolise over 100 different medications.

I nearly died of liver failure as a newborn and did not have a good start but someone in medicine in 1985 at Prince of Wales Hospital was making breakthroughs.

Nerve medications and antidepressants that help with pain and lots of painkillers that a lot of people can have aren't options. It's been a learning experience and this genetic test saved my life back in 2020.

I have constant feelings of wire around my abdomen and dragging sensations, pain that spreads over my whole body at different times, trouble breathing, trouble walking to the other side of my workplace, ongoing tiredness, headaches, nausea, stabbing and shooting pain and have lived a very isolated life as things have progressed more in the last two years.

I went to work one morning got to the front desk in the foyer and then nearly passed out from whole-body pain. I have responsibilities like the rest of us. My dad said, "You have to go to work even if you need a walker." That's how determined I have been to show up, in pain and continue as much as possible.

I went from a girl who loved hiking most weekends, coffee with friends, dating & all the normal stuff to trouble walking and 24/7 pain with unbearable anxiety because of the countless times that felt I might faint in public or at work. I have done the fainting thing safely on the kitchen floor at home several times instead.

I am currently on a short-term medication called Zoladex & a small amount of HRT to help with insomnia and other menopausal-like symptoms, but it can only be used for around six months. Longer-term use of Zoladex can cause brittle bones and Osteoporosis.

My specialist has done three Zoladex injections so far monthly under Medicare She's been my hero so far!

I haven't started major waterproofing work in my home, which can't be left as is. I hold off on spending where possible.

I have energy and pretty normal mobility again thanks to the way Zoladex suppresses the disease, temporarily putting me into chemical menopause.

I was able to go out and have coffee with a friend last week for the first time in a long time and can go on short walks, thanks to this short-term treatment cutting down symptoms by 70 per cent. But as mentioned before Zoladex is a temporary medication.

At my last appointment, my specialist told me that I must find a way to pay for this more complicated surgery to be done sooner than 12 months because a year would put me back where I started. This next surgery will be done by Prof Alan Lam in St Leonards. It will cost me $10,000, perhaps more as this was an estimate. She was upfront with me and said "This is your body, think of it as an investment, this is more important than anything, this is your life." She said, "Do a fundraiser!" So here I am.

My referral to the larger public hospital specified that I needed surgery in 3-6 months. Two months have gone since my investigative surgery and I called this facility to find that I am on a 365-day waiting list. Not soon enough considering limited medication options and being out of sick leave already so early in the year.

Private Hospital insurance policies take a year to come into effect in Australia, I was looking at doing that but this is too long a wait.

If you feel you can contribute any amount for this urgent procedure, I would be so grateful. But at the end of the day, I know I'm not all that unique.

My initial consult with Prof. Lam is coming up on August 21st.

This disease affects thousands of women at different levels of severity, but it was the delay in diagnosis and being brushed off as anything but the right diagnosis that has caused this level of damage and reduced my fertility to almost no chance because of the amount of scarring etc.

There is more in the media about Endometriosis but not a lot is being done as far as waitlists go. Our hospitals need more funding. Another thing that would help is to perhaps write to your local politician about hospital funding.

Please share my story if you can't support me financially. Let's make noise for women living with this disease. Many of us grit our teeth and carry on because we are after all endo warriors.

With gratitude,

Em