Before I received my diagnosis, I thought endometriosis was nothing more than experiencing a “bad” period. And even then, I figured that just meant slightly worse cramps. I had a roommate in college who had endo, and I’m ashamed to admit I used to think she was just being dramatic when she complained about how bad her periods would get. I thought she was looking for attention.
I was an idiot.
I was 26 years old when I first learned just how bad periods could be for women with endometriosis. I actually started throwing up whenever I got my period, the pain so agonizing it was nearly blinding. I couldn’t walk. Couldn’t eat. Couldn’t function. It was miserable.
About six months after my periods first started to become that unbearable, a doctor confirmed the diagnosis of endometriosis. From there, the pain only got worse. Over the next several years, pain became a part of my daily life. I was diagnosed with stage 4 endometriosis, which meant that the diseased tissue wasn’t just in my pelvic region. It had spread to nerve endings and up as high as my spleen. Scar tissue from each cycle I had was actually causing my organs to fuse together.
I’d experience shooting pain down my legs. Pain whenever I attempted to have sex. Pain from eating and going to the bathroom. Sometimes pain even just from breathing.
Pain didn’t just come with my periods anymore. It was with me every day, every moment, with every step I took.
Looking for ways to manage the pain
Eventually, I found a doctor who specialized in the treatment of endometriosis. And after three extensive surgeries with him, I was able to find relief. Not a cure — there’s no such thing when it comes to this disease — but an ability to manage endometriosis, rather than simply succumb to it.
About a year after my last surgery, I was blessed with the opportunity to adopt my little girl. The disease had stripped me of any hope of ever carrying a child, but the second I had my daughter in my arms, I knew it didn’t matter. I was always meant to be her mommy.
Still, I was a single mother with a chronic pain condition. One that I’d managed to keep pretty well under control since surgery, but a condition that still had a way of hitting me out of the blue and knocking me to my knees every once in a while.
The first time it happened, my daughter was less than a year old. A friend had come over for wine after I put my little girl to bed, but we never made it as far as opening the bottle.
Pain had ripped through my side before we ever got to that point. A cyst was bursting, causing excruciating pain — and something that I hadn’t dealt with in several years. Thankfully, my friend was there to stay the night and watch over my girl so that I could take a pain pill and curl up in a scalding-hot tub.
Since then, my periods have been hit and miss. Some are manageable, and I’m able to continue being a mom with the use of NSAIDs over the course of the first few days of my cycle. Some are much harder than that. All I’m able to do is spend those days in bed.
As a single mom, that’s tough. I don’t want to take anything stronger than NSAIDs; being coherent and available to my daughter is a priority. But I also hate having to restrict her activities for days on end as I lie in bed, wrapped in heating pads and waiting to feel human again.
Being honest with my daughter
There’s no perfect answer, and often I’m left feeling guilty when the pain prevents me from being the mother I want to be. So, I try really hard to take care of myself. I absolutely see a difference in my pain levels when I’m not getting enough sleep, eating well, or exercising enough. I try to stay as healthy as possible so that my pain levels can remain at a manageable level.
When that doesn’t work, though? I’m honest with my daughter. At 4 years old, she now knows that Mommy has owies in her tummy. She understands that’s why I couldn’t carry a baby and why she grew in her other mama’s belly. And she’s aware that, sometimes, Mommy’s owies mean we have to stay in bed watching movies.
She knows that when I’m really hurting, I need to take over her bath and make the water so hot that she can’t join me in the tub. She understands that sometimes I just need to close my eyes to block out the pain, even if it’s the middle of the day. And she’s aware of the fact that I loathe those days. That I hate not being at 100 percent and capable of playing with her as we normally do.
I hate her seeing me beaten down by this disease. But you know what? My little girl has a level of empathy you wouldn’t believe. And when I’m having bad pain days, as few and far between as they generally tend to be, she’s right there, ready to help me in whatever way she can.
She doesn’t complain. She doesn’t whine. She doesn’t take advantage and try to get away with things she otherwise wouldn’t be able to. No, she sits by the side of the tub and keeps me company. She picks out movies for us to watch together. And she acts as though the peanut butter and jelly sandwiches I make for her to eat are the most amazing delicacies she’s ever had.
When those days pass, when I’m no longer feeling beaten down by this disease, we are always moving. Always outside. Always exploring. Always off on some grand mommy-daughter adventure.
The silver linings of endometriosis
I think for her — those days when I’m hurting — are sometimes a welcome break. She seems to like the quiet of staying in and helping me through the day. Is it a role I would ever choose for her? Absolutely not. I don’t know any parent who wants their child to see them broken down.
But, when I think about it, I have to admit that there are silver linings to the pain I occasionally experience at the hands of this disease. The empathy my daughter displays is a quality I’m proud to see in her. And maybe there’s something to be said for her learning that even her tough mommy has bad days sometimes.
I never wanted to be a woman with chronic pain. I certainly never wanted to be a mother with chronic pain. But I truly believe we’re all shaped by our experiences. And looking at my daughter, seeing my struggle through her eyes — I don’t hate that this is part of what’s shaping her.
I’m just thankful that my good days still far outweigh the bad.
Leah Campbell is a writer and editor living in Anchorage, Alaska. A single mom by choice after a serendipitous series of events led to the adoption of her daughter, Leah has written extensively on infertility, adoption, and parenting. Visit her blog or connect with her on Twitter @sifinalaska.