Sunday, October 4, 2015

The surprising costs of endometriosis

Guest post from my dear friend (who also has endo) Sarah MacLeod. We met through the Canberra Endometriosis Network last year just before I left for the UK and bonded over having the same gynecologist.

I want to talk about something that’s not very widely discussed – the financial impact of living with endometriosis. Endometriosis is finally making it into the news! Usually the aspect of infertility is discussed and pain is mentioned, but the financial burden is not. There are a couple of research papers, however I want to give this the personal touch.

The one thing that people like to talk about as little as ‘Women’s Problems” is money. In the 5 years that my endo was under control I spent $60,000 on medical bills, that’s not including any over the counter medication. These were my healthy years. I was lucky to be healthy enough to work to allow me to afford this. However because of my endo I never managed to save for the future.

What the future brought was unhealthy years. I am one of the lucky ones again in that I have both a partner and parents who could support me, and this amazing thing called a credit card. For approximately 18 months I could not work for more than 3 hours a week. I had the sudden onset of chronic pelvic and nerve pain caused by endometriosis and complications with a Mirena. In this time I had botox injections every 6 months to help relieve my nerve and muscular pain. This is not covered by medicare and also not available where I live, in Canberra. This meant that each lot cost $1000 plus travel costs, which were usually about $800. On top of that my weekly chemist bills were $100 and I was having a weekly remedial massage at $70 a week just to relieve my pain enough to work those 3 hours a week. On top of this there were regular GP visits and unfortunately I could not find a bulk billing GP who knew how to manage my pain so this was an extra cost. I am so grateful that through all these things I have been able to return to work full time (although it is still an ongoing battle). Although things are looking up, we are still chipping away at the credit card debt that allowed me to become healthy enough to work. Those bills regularly make me feel like crying.

I would like you to now imagine that I was not one of the lucky ones, that I did not have a partner and family to support me emotionally, physically and financially. I have a friend who is in this situation, only her problems are worse than mine so she is unable to work at all and hasn’t been able to for a couple of years.

What prompted me to write this tonight is this -   I made a gofundme page for my friend to try and raise funds for her to have treatments she could not afford. The page raised $760, which I was incredibly happy with. However today I saw a gofundme page set up to help people with a wedding deposit that had made $2500 in 4 days. I do not begrudge these people that money in the slightest, but I can’t help but feel put out that people are so willing to donate money to that, and not to help someone have a better quality of life. People like the idea of a happy ending, they like to know that their money is going to help someone. Us girls with endo can’t give them that, we do not have a guaranteed happy ending. One thing that is guaranteed is that without help, nothing will change, and people will keep suffering. I also can’t help but think that perhaps if people knew the impact this disease has on all aspects of our lives then this would make a difference. I am hoping sharing my story might educate at least one person on one more impact that this disease has on us, who then might be able to tell one more person until no aspect of this disease is in the dark.
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