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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