Happy Hysterect-aversary: One Year Later
This post was written on December 10th, 2021, and originally posted on Emma's personal website.
Exactly one year ago, I awoke at 4:30 in the morning to take a shower in the dark, where I scrubbed my skin with a rough iodine sponge, the bristles dyeing the hairs on my thighs and abdomen a brief red. Afterward I dressed carefully in the outfit I had chosen the night before: a collection of soft, cozy clothing that was both warm and loose against the skin. I fought through the discomfort of my dry throat thirsting for water I could not have, and triple checked again the bag of supplies I had been building the entire week prior.
Water bottles and crackers - check.
Extra charging cords and a portable battery - check.
Ear plugs, sleep mask, the comfiest blanket - check.
Advanced directive with my end-of-life plans should something go horribly awry - check and check.
It was the day of my surgery, the procedure I had been advocating for for years, the basket in which I had pinned all of my hopes for a better quality of life - it was finally time.
Some quick context: I have lived two-thirds of my life with a disease called endometriosis. If you are unfamiliar, this is a condition that affects mostly people with uteruses, and can cause debilitating daily pain. It has often been crudely belittled as "a woman's issue," and only in recent decades has medical research improved as social advocacy has become stronger. While often found in the pelvic cavity near and on the reproductive organs, endometriosis lesions have been found on every organ of the body. It is a nasty disease that causes excruciating pain, infertility, and requires surgery to remove. There is no definitive known cause, and currently no cure.
I have had surgery to address my endometriosis once before, back in 2008, when I was a sophomore in college. That was when I was officially diagnosed, after spending a full school year collapsing in hallways due to the pain attacks that would wash over me like tidal waves. In the twelve years between my first endo surgery and the second, I maintained several different regimens of hormone therapy and medications meant to suppress and manage my symptoms. For much of that time, I had a baseline of general functioning that allowed me to live a fairly normal life. I finished college, I got a job, I went to graduate school, I toured the country working in theatre. My endo was always present, but it only ruined my day occasionally.
Until around 2018, where all of sudden, the medications that had been working for the previous decade were no longer. The unbearable pain that had before been an "every few weeks" problem was now an "every day" problem. It took another two years of research, reaching out to new doctors, pivoting after dead ends, and constant self advocacy before I got in front of a specialist who was able and willing to help me. It's a funny thing - often endo patients struggle with finding doctors who not only believe them, but who also know what endo even is. There's an additional struggle beyond that to even get them to cut you open, as endometriosis excision is a delicate skill that not many surgeons are capable of performing. Finding a specialist who knows endo well, who knows how to treat it, how to surgically remove it, and how to take care of you afterwards is insanely rare. I am fortunate enough to live in a region that has a few (literally a few - like three) names on the list of surgeons capable of helping endometriosis patients. After two years, I was finally being taken seriously as I sought out surgical procedures. The latter half of this journey coincided with the arrival of the Covid-19 pandemic, making matters even harder when it came to seeking space in a hospital. But luckily, there was a space open on the surgery calendar for December 10th, 2020, and I gratefully took it.
I'll fast-forward through the hospital stay: I was kept overnight in a recovery ward mere floors away from active Covid patients. The nurses - bless them - all seemed a bit dead behind the eyes (understandably). My overnight nurse in particular had me fearing for my health multiple times throughout the night; I was incredibly grateful to my past self for packing extra water bottles in my bag, as even cups of water took hours of requests to get to me. The worst offense was that the alarm on my IV drip machine kept going off to alert her of an air bubble in the tube; she kept just turning off the alarm volume, until a separate nurse came in and actually fixed the problem. The pre-op experience had been much nicer, as my surgical team made me feel incredibly comfortable and informed (and the best part, they laughed at my jokes). By the next evening, however, I was ready to leave and suffer the pain of recovery in my own bed, with no immediate threats to my life hanging from a plastic bag on a metal hook while an overworked nurse eschewing her reality ignores me in the other room.
Four incisions had been made in my abdomen - one in my belly button, two on my sides, and the widest above my pubic bone. The goal was to excise any endo (to cut out, including the root, so as to give the highest chance of no regrowth), repair an umbilical hernia, drain a cyst that had inflated my left ovary, perform a hysterectomy (removal of the uterus and cervix), as well as a salpingectomy (removal of the fallopian tubes). I consented to a few other potential procedures (such as removal of my appendix) in case the endo was further advanced in certain areas, or in the event something unexpected and life threatening was discovered. So here's what they found:
Polyps on my cervix
My cervix completely encased in endometriosis
My uterus wall was abnormally thickened, and also encased entirely in endometriosis
Globs of dark, diseased endo tissue collected underneath my uterus around my uterosacral ligaments
My left ovary severely enlarged by the cyst
A surprise tumor growing in my right fallopian tube
My cervix, uterus, and tubes were all removed
Left ovary was drained and returned to its normal tiny size
The top of my vaginal canal where the cervix was cut away was stitched up internally
My abdominal muscles behind my navel were repaired where the hernia had deteriorated the tissue
My external incisions were closed with surgical glue
The recovery pain was unlike anything else I had ever experienced. The early days were categorized by white-hot searing in my pelvis - akin to being slashed through with a lightsaber. I was painfully aware of my remaining organs sloshing around to find their new resting places now that new space had been opened up. Every sojourn to the bathroom was downright cruel. I had to hold my lower abdomen in place while I waddled to the restroom, and support it during urination. If you've ever imagined what it would feel like to think that if you didn't hold onto yourself, all of your insides would come tumbling out - this was it.
My recovery period was extremely bittersweet: on the one hand, the sheer volume of endometrial lesions and polyps, cysts, and tumors (!) they removed was incredibly validating and gave me so much hope. I had done it - I knew something was wrong, I advocated for myself, I got the right medical team, and they found the bad stuff and cut it out. This is the dream! But on the other hand, rather than marking the end of years of suffering, a new and even more difficult road of unexplained pain began. Even with how careful and mindful I was as I healed, the days were rough. Recovery was estimated to take six to eight weeks. Instead, it took fourteen.
Looking back on the entirety of 2021, I am emotional. The vastness of my grief over the last 365 days is unquantifiable. I genuinely lack the language to express every nuance of loss that I have borne in my interrupted healing. After all that, here I sit a year later, in much the same, if not worse, condition as I did then. True, the tumor is gone, I no longer menstruate, and so much endo was excised - but rather than vanquishing all of my pain, it merely replaced it with new agony, exquisite in its divergence. And this is no exaggeration: every moment of every single day for the last year, I have been in pain. Without even meaning to, I somehow developed neuromuscular dysfunction so severe I exist in every second with electrifyingly horrific nerve pain (I'm very talented). My ovaries routinely compress and implode like Death Stars. Invisible ice picks and javelins are shot through my abdomen while standing in the kitchen, watching TV on the couch, or (my favorite) while I'm driving in my car. Remember the cruelty of using the bathroom during my initial recovery? A year has passed, and still every restroom trip is crippling. Migraines shatter my vision and ability to speak. My immune system is shot. Extreme fatigue is the new normal. The brain fog is so thick I can barely see. My cognitive function has overall diminished, and I've lost a lot of my capacity for short-term memory. It's one thing to acclimate to walking with a cane regularly (gold and sparkling, of course), but entirely another to feel like your brain has leaked out an ear and onto the sidewalk, never to be scooped up and put back in.
I've tried every nerve pain medication under the sun. My surgeon and I discussed every possible last options available, including further surgery. We discussed the likelihood that other organs, such as my ovaries, are probably following the pattern of my uterus, tubes and cervix - endo can show clear or white or red, and therefore cannot be easily detected on certain internal tissues that share the same coloring. It is likely my ovaries (which are white) are also encased. It is likely they will need to be removed as well down the road. It is likely I have nerve damage from the endo itself, and now that the main endo offenders are gone, the nerve damage has the room to shine centerstage. Even my surgeon reached his point of exhaustion this year, telling me that he no longer knows what to do for me. He is out of ideas. I've sought second opinions. I've been referred to pain management specialists and rehab providers who inject things into your spine. I've been attending pelvic floor physical therapy since June, and while I've seen some improvement in this work, it is slow and arduous (and not to mention not covered by insurance and very expensive - thanks, American healthcare!).
...All while still living in an ongoing pandemic, worrying about the people I love, trying to survive as an out-of-work artist, and somehow stay healthy long enough to figure out why I'm still so sick.
Living in chronic pain - is the inevitability of losing yourself.
I realize this is rather depressing (congratulations, you read the room correctly) - and sorry, but the reality is... it just is. I don't really have any words of consolation. There are so many people with lives like mine, where our dreams, ambitions, and exuberance are shoved to the back burner because of chronic pain and illness. Truthfully, it feels like a death sentence. I look at photographs of myself from just three years ago, and weep at the person who seems so familiar but whom I no longer recognize as myself. Living every minute in pain robs you of joy in a way few evils do.
And to be clear - I do not need any empty speeches of how I just need to keep my chin up, and that "everything happens for a reason." For one thing, it doesn't. Everything happens - and you either make meaning in it, or you don't. If I need anything, it is simply for those who love me, and anyone else, to just pay witness. To listen. To be here. To believe me when I tell you my truth. I will be processing and reprocessing my pain for as long as I have it. There will be moments when my humor shines bright, I laugh for the first time in days, and I glimpse horizons of normalcy. There will also be moments where I break under the weight of this burden, and cry out all of the moisture from my body. Aside from this, I have no answers.
What I do have is the knowledge that until I stop breathing, my lungs are just going to keep on working. For all the mind I feel I've lost, I've still got brain left enough to wake up every day. In spite of seriously low moments where I can't imagine existing like this anymore - I am still surviving. I'm still here. So, what else can I do but - go on?
And go to therapy.
Lots and lots of therapy.
10/10 would recommend.
I weep so many tears of sadness for you, and wish it could be more than a shallow reflection of the depths of your pain.