Laugh, run & jump for joy with Icon pee-proof underwear!

Disclaimer- This is a post for mature people who deal with real health issues. There is no room for bullies or judgemental idiots. K, thanks!

If you follow me regularly, you know that I suffer from endometriosis and that I blog about it openly. Too many women suffer from this disease in silence, and somehow no one knows anything about it. I swear to you, every time I write something about endometriosis, I get 2 private messages from women sharing a similar challenge with their journey to health.

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Tummy Talk: an open letter to our healthcare system about my endometriosis

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.


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Tummy Talk: What is Endometriosis and why is it ruining my life?

My stomach is hurting tonight, so I think it’s time I start talking about it. I have Endometriosis. Despite all the commotion in my stomach, every month I am reminded that I have it, and every month I am reminded that I am not pregnant.

Ok, let’s get one thing straight, I’m not dying. I also realize that there are bigger problems in the world, but, this is my world. There is a lot of pain that comes with endometriosis. And I am in a lot of pain most of the time, especial when I have my (.). I also have a lot of pain, because my endometriosis has progressed significantly, that it is now causing infertility. It’s hard to talk about infertility because you’ll hear people say ignorant things like “at least you have a son” or “well, you’ll just have to have more sex!” or “you can just drink and party in the meantime.” On a side note, I have been doing a lot of the later, and I realize now that it is my coping mechanism. Also, there is a mild chance that I could still get pregnant… but that just seems like a cruel joke at this point.

I’ll get into infertility later, but for now, just know that it’s basically never okay to discuss these things with anyone unless they start talking about it first. Don’t ask people if they want kids, because you’ll know if/when they are pregnant! There is really no need to ask folks if they are “trying” either, since you may as well be asking them when are they having sex. A wise doc I used to work with once told me “all couples are tying.” This is an important thing to remember.

Also, I have no resentment for pregnant women or expecting mothers, just to be clear 🙂

So, what the heck is Endometriosis?

The Mayo Clinic defines Endometriosis (en-doe-me-tree-O-sis) as an “often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant). In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form.”

How do you know you have Endometriosis?

I have always had very bad period cramps growing up and they seem to have gotten worse over the years. I used to work for a women’s health association doing public health education and one day we got the Endometriosis file plopped on our desks. After reading all the guidelines and medical information, I was like “I have this, 100%.” And no one cared, until now. It’s not a problem, until it’s a problem.

Typically, endo is diagnosed only through laparoscopy. However, a few months ago, I was officially diagnosed with stage 4 endometriosis, which I guess was confirmed by the large cysts that have now taken over my ovaries. Also, my ovaries seem to be glued together from all the tissue. These are clear signs of endo. No official diagnosis needed here. But overall…NOT. GOOD.

The good news is that my tubes are clear (is that actual good news though? Do my tubes even matter at this point?) Again, another cruel joke.

What is the treatment for Endometriosis?

Hormones, a.k.a birth control. More cruel jokes.
But for realzees, Anaprox to help suppress the cramping, and Advil to manage the pain.
Apparently, having a hysterectomy doesn’t relieve you of endo, since the surrounding cells still function as endometrial cells. You’ll still have the cramps, except now you’ll have early onset menopause to go with it. No one wants that.

Can you get pregnant with Endometriosis?

Yes, of course. I had Victor after all. But even he was hard to conceive. And now that my cysts have quadrupled in size and the endo has progressed, it seems nearly impossible. All this to say that I am waiting for an appointment with a fertility specialist.

What can we do about it?

Sadly, even though endo affects 1 in 10 women in their reproductive age, it is still a highly under-funded and under-researched condition. It is also called the “working women’s disease” which is the most disgusting term you can ever label anything related to a woman’s uterus. Yes, we delay pregnancy because of our careers, but come on?!

So on May 28, I’ll be running 5K in the Ottawa Race Weekend to support research in Endometriosis for the Ottawa Hospital Foundation’s Women’s Health Centre. So far I have raised $520, that’s 52% of my goal!

I want to end this post on a positive note because I don’t want negative thoughts to cloud my energy tonight. If this cause resonates with you, I would love your support and welcome your donations!

 Thank you for caring and reading! Tummy actually feels better 🙂

xox C

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