I haven’t blogged about my endometriosis in a while, despite the fact that it has been a huge part of my life in the last few months.

In September, I was on my deathbed. I couldn’t stand the pain I was in and was off of work for one week. My stomach was bloated and cramped up and I couldn’t function. I later realized that my cramps and stomach pain were highly related to my diet. The frustrating part is that no physician will confirm that diet and endometriosis symptoms are directly related, because alas, there are no studies to prove it.

Well I am my own scientist, I do after all have a biochemistry degree! Since watching my diet over the last month I managed to keep my symptoms at bay… That is until last night! It was Halloween. I indulged in pizza night, nibbled on a few pieces of chocolate, had a cupcake for dessert and munched on some chips and dip. The cramps came in full force. Now that I list everything I ate, no wonder I felt like crap. But again diet is not supposed to affect endometriosis symptoms, but it does for me. And I assure you I will never go down that path again. When I see junk food my brain now computes it as “poison”. It could be the salt, the gluten, the sugar… I don’t know. All I know is that it’s all bad for me. I need to stick to my healthy eating habits!

Why the oranges?

As I was mentioning in September, I was in so much pain that I went to Emergency at the hospital. I think frontline healthcare team’s have no idea how to deal with endometriosis. It’s so sad. All they could do was give me Percocet which made me more nauseous and drugged up, but I was still in pain. Useless.

I was then given an ultrasound, to confirm once again, that both of my ovaries contain an 8 cm cyst filled with blood, also known as an endometrioma. This and other symptoms, confirm stage four endometriosis. Not good.

So when people ask me what is wrong, I like to tell them that it’s like having two oranges in your stomach. It’s hard for me to do things like yoga, when I have to either lay down flat on the floor or bend my knees into my chest. But I still do it, because it makes me feel amazing. Ironically, I need to do prenatal yoga poses to make me feel better. When my stomach is bloated and cramping, it is completely extended and once again, ironically I look pregnant. I say ironically, because we’ve been trying to have another baby for two years and endometriosis has rendered me infertile.

When you look at statistics for endometriosis, it affects approximately 10% of all women. But most women have an individual and unique case. The question is why do so few people know about it or what to do with it? There are so little studies to support it, even though it causes pain and infertility in most women. It’s the classic case of “it’s not deadly so let’s leave it alone”. No, I may not be dying but I sure am in a lot of pain.

My plan

Last week I finally saw my endometriosis specialist, I waited three months for this appointment. Together we confirmed that I will need surgery to remove my cysts and go on medication to control my endometriosis. The problem is I need to wait 6 to 8 months for my surgery. “Oh you’re not dying? Get in the back of the line.” This is why I am writing an open letter to our healthcare system, or whoever is listening.

My open letter

Dear person in healthcare who can make a difference,

My name is Chantal, I am an upstanding citizen with lots of potential. I work two jobs, pay all my taxes, make donations when I have the means and try to help others when I can. Other than my endometriosis, I am healthy, I am young, I am married, and I have a healthy three year old boy (who really wants a sibling).

I am writing this letter to you to consider the idea of investing in potential.

Please don’t get me wrong, I am not saying that we should neglect the very ill. I am asking that we balance our healthcare services, and operating schedule and also help those with a bright future.

So many of our healthcare dollars go towards saving people who have purposely harmed themselves and require seven hour emergency surgery, and here I am having to wait half a year for mine.

I’d like you to recognize that endometriosis is a debilitating chronic disease, that causes physical pain, infertility and therefore emotional pain.

I started my endometriosis action plan this January, and have had to wait three months to see my gynecologist, another three months to see a fertility specialist (which I don’t qualify for because of my cysts) and another three months to see my endometriosis specialist. Now I must wait another 6 to 8 months for my surgery, for a chance to get pregnant.

It’s time to prioritize the healthy and consider a healthcare system that embraces prevention and invests in potential.

I’ll be waiting here patiently until you do.

Chantal