A Shrinking World In A Blister Pack

I decided to try medication for my endometriosis. Provided it was endometriosis.

The pain was at its worst a seasoned and chronic "8/10", snapping my eyes open at night, covering me in a blanket of sweat and twisting me into odd shapes as I clutched my side. At best it was a buzzing "4/10" that had me wearing my heating pad like a strangely crafted underwear at all times, while on every form of medication and leaning into every distraction and healing modality. I hadn't slept more than three or four hours each night, and it had been consecutive weeks of non stop, familiar bladder urgency and burning, lower right quadrant pain, rectal bleeding, cramping, exhaustion, brain fog and joint pain - and I had just found out that another surgery was unlikely.

After my follow up consult with my surgeon, who had told me it was likely not endometriosis, but was happy to prescribe an endometriosis medication for me to try, I lay in bed, deflated and anxious. I mom-ed from bed, minimally, while my husband made breakfasts and lunches for the kids. I worked from bed sticking my hair up and jumping into Teams meetings not even caring to blur my headboard background at times. I cried into my pillow until my face dented itself there permanently. My husband pointed out that I hadn't showered in a few days and tried to coral me down the stairs to brush my teeth. I couldn't move. I was stuck and I was scared.

"Don't worry. It won't work if it isn't endo, but it will if it is." My surgeon's fellow had said this to me encouragingly at the time but each time I replayed it, it degraded, feeling more like somehow I had done something wrong and the medication was the litmus. It must be in my head. But still, what if it doesn't work? What if it isn't endo? Or what if it does but I can't tolerate it for the rest of the 2 years I'm supposed to take it?

This particular medication, an oral gonadotropin-releasing hormone antagonist (GnRH antagonist) that basically works on the brain to kibosh the estrogen that contributes to endometriosis, seems to hold a lot of promise and had already brought a ton of great results for women. But for all the positive, it also had equal handfuls of terrifying reviews from women on Reddit. I wanted to get on board with the positive, but my autonomic nervous system had already slingshot itself into 'freeze' mode. I sat there thinking about the 'what if it doesn't work' aspects of it, and thought 'oh great, let's trade in the pain for the side effects'. I was especially concerned about the mental health and mood issues I'd read about - with anxiety, depression and mood changes being common culprits listed - as well as things I already dealt with along with my ADHD. Then somehow, I put everything aside, and grabbed hold of my logic.

'Okay. You only have one ovary. You have already gone through a ton of horrible hot flashes and menopause related symptoms - even your bloodwork showed that you are almost over the finish line. You really don't have that much farther to go. You have been prescribed the lowest dose of this med. You have the best chance of having the best pain reduction from this, and the least side effects. This makes sense! You got this!'

And it did make sense to me. I was also very aware that drug reviews in the end needed to be taken with a grain of salt, because every single human's experience and lifestyle and biochemistry is going to be unique. So I popped out the pink tablet from its casing, grabbed my water, called my best friend over FaceTime and after 20 minutes of working through my "...and I can stop it any time if it doesn't feel right, right?" fears, I popped it in my mouth and swallowed.

Fast forward.

Fast forward the first few days of not really noticing much to my delight. Fast forward through the next few days and a slight decrease in pain - and to me a validation that it was in fact endometriosis. Fast forward through a bit of dizziness and racing heart - a definite uptick in anxiety? Yes, but a few days later, as I sat there calmly with my family watching a movie, I realized it wasn't just that. It had also seemingly reactivated my POTS and my IST - my heart booming and dropping into 'THERE IS A CHEETAH CHASING ME' rhythms while I sat relaxing, making me feel like I was going to choke or splutter; an invisible anvil on my chest, my blood pressure randomly dropping low. This had been under control for so many years - not so much, right now. But it was still totally tolerable. 'Whatever, break out the compression garments. Drink more water. Add my salt back. It's fine. I got this...The pain is already getting better...'

Fast forward to the sleep interruption. I don't remember what week this was. Somewhere early in the third? I do know that I was down to one to two hours of sleep a night. I know I was a mess - completely beside myself. I don't know to what degree this sleeplessness fed into the mood swings - but the swings were definitely enhanced by the delirium. It was like a horrific rollercoaster and it was at this point things started running off the rails.

Maybe there would have been a time or a Judd Apatow-esqe jump cut in my life where it was funny to sob uncontrollably over the pickles in my burger not being hot anymore. Where the incessant mascara-streaked wails of a broken 48 year old crying about how 'warm pickles are the essence of any good burger and mine were now cold' are somehow charming cringe comedy that are leading to some personal breakthrough.

But this wasn't funny, or a breakthrough. This was just a breakdown and it was happening every day. Actually, I couldn't stop crying at all. It was happening all day and all night. I flip-flopped between extreme and exhausting hypervigilance and a kind of perpetual and hairpin trigger grief: my pickles; I was out of juice; I forgot to send an email; I sent an email; the kids were home; the kids weren't home; someone sent me a text message; someone didn't. There was no winning, and it was all unfolding at a whiplash interval.

Pause.

Maybe rewind a bit.

At some point before the first week, I reviewed all the side effects of this med with my husband and my best friend. I told them that I was going in with the most positive energy and best intentions, but that I needed them to watch me for the first month. This was my 'tell an adult' approach to going in and made me feel so much safer about the mood and mental health side effects. I knew I had my people watching me like a hawk. I knew that if I forgot why I was hot-flashing, or sleepless, or cranky, I had trusted loved ones who could maybe say 'hey, it's the pill' and through that I could talk to my GP and we could carry out our own risk-benefit analysis.

I also did a thorough deep dive into the impact this treatment might have on my ADHD symptoms. I knew going in that the lower estrogen levels could worsen my symptoms so I made sure I gave myself what I thought was extra time, extra check lists and strategies so I could thrive.

Before I took the first pill, I went in with eyes wide open that certain things would shift and it wouldn't quite be the medication per say, but a possibly intense chemical menopause resulting from the meds, and maybe my sensitive reaction to all pharma, period. I told myself early on though, that I was willing to stay in the game for a long time for a better quality of life, and less pain - I really want and pray for this endo pain leave me, and I will try anything.

What I did not see was what I could not see. My incredible shrinking world.

Unpause.

I hadn't slept in 2 weeks. The ADHD was full-tilt: emotional dysregulation and no impulse control meant that a previous natural splatter of a few intrusive thoughts were now a full dark Jackson Pollock and had almost overnight become a terrifying and full-time job to manage. I was crying 23 hours a day and everything felt like a fever dream. I had deadlines at work but my executive function was no where to be found. I was in bed again. Living in bed, working in bed. This time from some mix of depression and exhaustion. I pushed myself to leave the house but I would be overstimulated so quickly that I would reach a point of literal screaming when I got home. My migraines were daily. My thoughts became terrifying.

But the pain was less, right?

"I can't do this anymore."

"I don't want to be here."

The thing about reality is that it's as big as you live it. A month before I took the GnRH antagonist my world was hard but it was a wide open plain and as small as I was living, I could still see the roads I wasn't taking. I could see my options and I could fight for them. I could keep pushing, even in pain.

"What's the point."

"The kids deserve better than this."

A month into this treatment, I could not see anything. No roads, no options, no more fight. What's worse, I didn't understand that I had a change in my field of emotional vision. I just thought this was going to be my life now. I need to explain that I was safe - I didn't want to hurt myself - but my thoughts frequently turned to not knowing how long I could live like that, not caring, and I truly didn't understand my purpose anymore.

My scope was so limited I didn't realize this had spilled over to a more than noticeable degree for my family. I knew that it had affected everyone, but I didn't know I had become a hermit who hid upstairs and audibly screamed into pillows, and sometimes, forget the pillows, just scream-cried all day. I didn't come downstairs to eat. I didn't leave the house except to go to doctors' appointments and those simple outings took hours of prepping and focused willpower just to turn the knob on the door so I could leave.

One Monday morning my husband let me know that he was going to work from home for the week. My mom came over. The plan was to call my GP to get me something to help me to sleep, because it had been yet another weekend of insomnia, with days of short fuses, migraines, spiralling dark thoughts and nonstop tears.

We got through on a video call and I had no control over my emotions. I lay in bed sobbing uncontrollably and my husband and mom helped translate. It was messy and I'm so glad it happened. While the plan was to get something to help me sleep, and check in about symptoms, I was immediately taken off the medication. The initial plan was to take a break for a week, and try again with possible estrogen added back in, but so far the choice has been made to keep me off it.

The first week being off of it, my husband was home with me and I was a wall of tears and instability, on top of which, the endo pain came back rapidly. Even though the half life of the pill is only 24 or so hours, the mood side effects can take weeks to right themselves, so I have been leaning heavy into compassion and patience. And somehow, I'm still primarily in bed.

But the fog is clearing, and the plain is back. I am still grieving and dealing with what feels like a million pillow-screaming emotions a minute, but I can see my life options again and even if I'm not taking them, they are beautiful.

And even though the pain is back, and I don't know what my next steps are with the endo, today I welcome it as a messenger.

I welcome it as a reminder that I am here.

And tomorrow we can try and make another plan.