Endometriosis, anxiety and depression: three invisible diseases

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I stare at the clock and try to convince my brain to do math. When was the last time I took ibuprofen? Should I just wait and take some more CBD oil for now?

In the meantime, I toss a pinch of fennel seeds into my mouth, an old Italian trick to quell my nausea.

My disease-controlling methods are numerous – heating pads, cooling patches, oils, edibles, suppositories, tums, laxatives…but they barely scratch the surface of this nightmare.

Today I read that a woman with endometriosis died from surgical complications. They found so much endo far too late because she was ignored by numerous doctors. Most of her mangled organs were taken out, and she died needlessly from ignorance.

Endo is benign cancer that grows everywhere in the body but most commonly in the pelvic region. It's been found in the lungs and brain as well where it can wreck the most damage. It shatters fertility and causes severe disability, affecting 1 in 10 women.

Approved medications offer pathetic results. Hormonal options ramp up some chemicals and kick others down, but they only partially work. And the side effects can be disastrous.

Surgery is the gold standard. And I've had two. The first went pretty well, and so did the second.

But the second only stalled my symptoms for 2 months. Then it was back to the flare game.

Hormones ebb and flow across the month in those who have a uterus. Most know this as soon as their first period arrives, carrying with it pain, bloating, and moodiness, along with a heavy stigma. But endo is different. It doesn't feel like your period. Rather, it's like your body turns it's back on you. And each flare brings with it something new, and terrible.

Maybe this month, I will mostly be flat out exhausted, like someone deflated me, flattened me out, no air left to support the simple things like taking a shower. Pain, burning on and off, aching, shooting from my front to back.

Or maybe it will be a party of symptoms – body aches, sore throat, something like the flu without viral infection. That's really fun.

Whatever is on the menu, emotionally, you're just a mess. Endometriosis pain makes you irritable and sensitive. You snap at your friends, family, partner. You apologize for symptoms out of your control. And you slap down any advice they bring – the doctors don't know how to help me, so why would I listen to you?

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This month, I'm in pain, emotional, and hungry, and nauseous at once. I'm sensitive to noise and light. I don't talk to my partner very much, so I don't snap at him. I feel like crying, and I'm angry.

But I need to work. And that means trying to get in 10 hours of sleep a night first – yes, 10 hours. Seems like a lot, but that is the minimum I need. If I don't, my body severely punishes me.

So, I push myself every day to work. As much as I can, as much as I have to. My deadlines are tight. I can't just pull the covers over my head as much as I want to. Coffee is my miracle drug. Morning drip, afternoon latte. I tried to forgo the latte for a few weeks, and my brain fog was quite scary. So, I do what I can. 

When I feel up to it, and that's rare these days, I go walking or see friends. And they think I'm fine. I don't discuss my symptoms anymore. What's the point? So they can say sorry? I know you're sorry and, no, there's nothing you or I can do about it. Let's talk about your cat instead.

No one knows at work either. Partly because I work from home. Partly because I've had a lot of practice hiding symptoms.

I talk openly about endometriosis, despite the stigma reproductive health carries. But I am not as open about my anxiety and depression. Those have been with me since birth. They have landed me in the ER, and they have forced me to leave work. But I don't talk about that.

As a child, I hid everything. I became what they call high functioning. Despite the emotional turmoil, I was top of my class, went to a prestigious school, completed a Ph.D. program, and had a brief but successful academic run. I then went on to start a new career in medical communications and now have my own business.

I am a realist, yet people view me as a pessimist. I'm okay with that. I think I'm just blunt and direct; I hate when things are sugar-coated.

So, I may talk a lot about endometriosis and why we need more research funding in women's health, education for clinicians, and overall care for patients. But I probably won't mention my pain or my fatigue unless they are at a 10. I won't tell you about my gastrointestinal symptoms, my moodiness, the body aches, or sore throat.

I'll let you know when I can't go out or get to a deadline in time because "I'm not feeling well." I used to say this about my anxiety and depression, but this excuse seems more acceptable for a disease caused by the body and not the mind.

Three invisible diseases: endometriosis, anxiety and depression. And you'll probably hear very little from me about them. But know, I live with all three every day. 

They are a part of the fabric of my being. And even when I'm having a "manageable" day, I feel them inside of my body and mind. Sitting there in the dark. Just waiting to make their next move.

I'm not angry anymore. At least not all of the time. It's not my body's fault. It's doing its best to keep me as healthy as possible every day. The modern world is not easy.

Until the day when better treatments are identified for endometriosis, anxiety and depression, I'll be here, munching on fennel seeds and checking the clock to see when I can take some pain meds again.