But You Don’t Look Sick

I promised you all a more in-depth explanation of my invisible illness, so here goes.

If reading about the female reproductive system makes you squeamish, please disregard this post.

My menstrual cycles has never been normal. Infrequent periods and heavy bleeding left me in agonizing pain that doctors could not explain. I was told on more than one occasion  that the pain was all in my head. I should take some Midol and stop being a bitch.

In February 2006 my world changed forever. I was officially diagnosed with Stage II Endometriosis and Polycystic Ovarian Syndrome (PCOS).  There is no cure for either disease. I suddenly went from not knowing what was wrong with my body to facing a life time of illness.

What is Endometriosis?
The inner lining of the uterus (or endometrial tissue) begins growing on the outside of the uterus. Since there is no way for this tissue to be flushed out of the body every month with a normal menstrual cycle, it continues to grow, bleed and spread. Attaching to the ovaries and surrounding organs. This can cause abdominal pain before, during or after a woman’s menstrual cycle. For some women, the pain is constant.

I’m one of those lucky few that suffers from pain 24/7.

The only way to diagnose endometriosis is by having a laparoscopy surgery performed. I have had two of these surgeries performed in the last six years. There was so much endometrial tissue present on my uterus and ovaries that they were unable to remove it all due to all the scarring the laser removal was causing.

I had also been given a prognosis of only a 1-2% chance of ever have children. I’m not going to lie, that little piece of information hurt a lot more than finding out I will send the rest of my life with an incurable autoimmune related disease.

I cried. I cried a lot. I cried for years because my choice of having a family had been taken from me.

Thanks to a wonderful support system and some much needed therapy, I’m at a place where I can finally say, that’s okay. And most days I can make myself believe it. There are still times when I see a new mother with her cute baby and I get a little sad because I’ll never have that. It’s normal to feel sad sometimes.

Its hard to describe what it’s like to live with an incurable disease. For me it’s an every day thing. I’ve had several years to learn how to cope. Here is an more general example of a good day vs. a bad day…


Good Day: I got at least 5-6 hours of uninterrupted sleep.  My pain is so mild it can be easily ignored. I can even manage to run a few errands after work AND make dinner.

Bad Day: (I call these my ’90 year old woman’ days.) I didn’t sleep well the night before, because it felt like I was being repeatedly stabbed in my abdomen. Bear the dog got so tired of my tossing and turning that he finally opted to sleep on the floor.

I dread dragging myself out of bed. Everything I do costs me energy. Fixing my hair, getting dressed, making it down the stairs… by the time I’m ready for work, I feel like I’ve run a marathon, and it’s only 6:45am.

The abdominal pain is now at a dull ache, but I know all that can change in an instant.  I have to plaster on a fake smile and somehow make it to 4pm, which I do though shear force of will. It would be easy to throw in the towel, tell my boss I’m sick and go home. I rarely do this, however. I only get so much sick time, so I save it for the days I can’t manage to pull myself out of bed in the morning.

After work I still have to make dinner and take bear for a walk before I can get ready for bed.

The worst part? I never look sick.

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