Anxiety, Chronic Pain, Fear, Recovery, Self-Care

My Chronic Pain is Manageable

– and other lies I tell myself

Meme Credit: Memes Monkey

The pain is excruciating. I can barely breathe. It is so bad that I chose to take a painkiller today – something I don’t ever do because I hate painkillers. I hate the way that painkillers change my mood. I hate how they make my head fuzzy. I hate that they make me nauseous. I hate that they can be so addictive.

I hate that they led to Danielle’s death.

And so I won’t take them. Until I need to take them.

And today was one of those days. I still walked – I got my cardio in for the day. But it was a slow excruciating walk, almost a crawl towards the end. Because the sharp stabbing in my ovaries knocked the wind out of me. Because the feeling of a 10-lb bowling ball resting on my pelvic bone is like an albatross around my neck.

“How is the hormonal treatment going?” a close friend asked a few nights ago.

“So much better than expected,” I responded. “The pain is manageable now.”

And as though they heard me, my ovaries started throbbing, slowly at first, if only to remind me that they have complete control over my life. By the end of the night, I was curled up in the fetal position, irritable and completely uncomfortable.

Living with Chronic Pain

Chronic pain is difficult to explain. I look fine. I act fine (mostly). I don’t have a cast on my body. I don’t have a bandage covering a debilitating wound. And let’s be honest, we are talking about my woman parts – parts that people don’t want to talk about, hear about, or sometimes even acknowledge that they exist.

But my pain is determined by my menstrual cycle – ovulation and menstruation bring me to my knees … usually bowing to the porcelain god, paying my dues. Every month. For a week each time.

The silver lining to my chronic pain is that it’s clockwork. I can predict my bad days. I know exactly when I won’t be able to move. I know exactly when I won’t be able to eat, when even the slightest twist of my back will send shock waves through my body, when I will spend most of my day hovering near a toilet. And so I can plan accordingly.

My best friend’s 40th birthday party on December 7th? Wouldn’t miss it for the world – but my ovaries will have other plans for me that day. Family holiday gathering on December 24th? Yeah, I won’t make that either.

But that doesn’t make it any easier. Just because you know that you’re going to get run over by a Mack truck doesn’t make it any less painful.

And so every month, just before ovulation, when I am feeling particularly energetic and pleased with how healthy I am feeling, I typically think, “I got this. I feel great. The pain won’t be as bad this time.”

It’s like I forget.

When I was pregnant – and struggling to gain wait, to keep food down, and to stand up without passing out – I swore off ever having another child because I was so miserable.

“One and done,” I would complain.

“Oh, you’ll forget these days,” moms of multiple children would say to me.

Except I didn’t forget. I remember quite clearly how miserable I was during those 40 weeks – I knew the MINUTE I was pregnant because my body is incredibly sensitive to any hormonal changes. So sensitive that for 30 weeks straight, the only food I could keep down was peanut butter and McDonald’s French fries.

And yet, here I am. Every month, forgetting just how painful the month before was. Forgetting how miserable I was for two weeks of the previous month.

How is that possible?

The Diagnosis

I forget because I want to believe I am getting better, but the truth is, there is no getting better. I have adenomyosis. It took 9 years, 6 months, 3 weeks, and 4 days to get that diagnosis. Two miscarriages, 3 D+C’s, 7 gynecologists, 3 exploratory surgeries, 15 pelvic floor massages, 3 therapists, 36 transvaginal ultrasounds, 2 CT scans, 3 MRI’s, countless medicinal treatments, and millions of tears.

Adenomyosis is nearly impossible to detect – as is endometriosis. Doctors only found my adenomyosis because I refused to accept “this is in your head,” and “welcome to being a woman,” as proper diagnoses.

For those who don’t know, adenomyosis is when the tissue lining of the uterine wall grows into the muscles of the uterus. It is so horrifically painful because once inside the uterine muscles, the tissue continues to act like uterine tissue – it thickens during ovulation (hence the bowling ball feeling at the base of my pelvis) and bleeds during menstruation. Endometrosis happens when the uterine lining grows outside of the uterus on the surface of other pelvic organs, again, continuing to thicken and shed as though it was within the walls of the uterus.

If you have never had an internal bleed, you do not understand the extent of this pain. What’s worse, is that there is no end to this. At least not until I reach menopause, at which time I’ll be faced with a different struggle, or have a hysterectomy – which will put me into menopause or on heavy hormonal treatment to prevent menopause.

The Results

Adenomyosis means that having another child is a pipe dream. Possible? Yes. Can it happen naturally? Likely not.

Adenomyosis means that at age 35, I am faced with the possibility of a hysterectomy.

Adenomyosis means I don’t have control over my own life.

And it isn’t just my uterus that is at risk here – my mental health, relationships, and financial security are all victims of this horrible incurable disease. Every month, as I lay curled up in the fetal position, wrapped in heating pads, under the heavy sedation of pain meds, I am further punished by feelings of failure, isolation, and complete despair. I let my friends and family down when I cancel plans. My professional reputation and reliability is damaged by the countless cancellations, putting my family in financial distress.

Chronic pain isn’t a joke. It’s easy for someone without chronic pain to misunderstand those who experience it.

“This again?”

They are tired of hearing about it. They don’t get it.

“Are you sure it is that bad?” they’ll ask.

“Suck it up. It’s just your period. Every woman in the world goes through this. You’ll be fine,” they’ll say.

But despite the multitude of days every month that I am unable to be a functioning adult of our society, I will continue to push on. I will continue to believe that next month will be different. Because I can’t succumb to those feelings of defeat and despair. It’s not fair to me, and it’s not fair to my family.

So I’ll continue to lie to myself – I’ll continue to believe that I am “managing” my chronic pain. When in reality, my chronic pain is managing me.

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