[not. crazy.]
how the long road to an endometriosis diagnosis taught me the ultimate lesson in self trust
On Monday, February 16, the final day of the Year of the Snake, I shed my final layer of skin and slithered out with tender, sparkly fresh insides-I mean scales…
No fancy medical imaging machines can detect the source of the chronic discomfort and pain I have experienced for years in my pelvis or low back, the fucking horrific cramps, incessant bleeding, the brain fog and fatigue that doctors called a ‘a really bad period’, or the relentless IBS like symptoms that couldn’t be pinpointed to a singular food aversion nor the bloat in my stomach that had me feeling uncomfortable physically and emotionally all the time always.
After years of being bopped around to different doctors, being told to meet with dietitians to help me lose weight, pushing through intensive training to teach fitness and increasing my exercise, getting an IUD to help with my bad period symptoms, having a LEEP procedure for suspected cancer cells on my cervix, multiple completely clear ultrasounds (yes, plural, internal and external) where the technician would look at me like “why are you here?” I had finally resigned myself to the fact that there was nothing medically wrong in my body and anything I was experiencing must be made up and my fault. I needed to quit being overdramatic and just shut up and lose weight and be happy because hey! I’m still able to walk and hey! At least I’ve got a great heating pad!
Riding below this resignation, however, was always a low hum of self trust, belief
a quiet tug in my heart that was insistent
saying,
Hey, you’re correct.
something isn’t right here.
they’re missing something.
You’re not crazy.
it’s not your fault.
I went on with life, though nose blind to the intensity of the symptoms I was experiencing.
I did my best to show up fully and without ‘hindrance’
Teach a class, sleep for hours
Heating pad, ibuprofen (that did nothing) for the pain
And at least, the IUD made the deluge of my period bleeding go away.
Doctor’s appointments every now and then
Most of them said:
“Nope, you’re good, carry on”
One singular doctor said,
“you’re right, something is up here but I can’t say for sure what it is. It could be endometriosis? But there’s so little research on that so it’s hard to know for sure”
Hmmm I think I’ve heard of that? isn’t that what my friend and those influencers I follow on instagram both have and in both of their cases wasn’t it debilitating and required surgery? I don’t know if my pain is that bad that I’d need surgery or anything like that (it was) and doc doesn’t seem *alarmed* so… that can’t be it.
Thus I tucked that endometriosis nugget away into the back of my mind for a while.
But then, after a kidney infection that caused me to pass out and hit my head giving me a concussion resulting in a two day hospital stay, in Italy!!, and forcing me to take a step back from teaching at SoulCycle, alllll of my symptoms converged and refused to go away. It was intense and relentless. I was in rehearsals for QUEENS navigating my abdomen swelling so much I grew two pant sizes in the course of two weeks and despite having done intentional work to neutralize my relationship to what my body looks like and integrating Health At Every Size (HAES) viewpoint into my life and fitness teaching, all of the very old stories with negative body image and dysmorphia from my past came rushing back to the forefront of my consciousness crushing my confidence. And finally, on top of all of this, the pain in my body finally made me look into following up on that nugget that doctor had mentioned in passing a couple of years ago.
So, in October I looked that doctor up again, turns out she was no longer at the practice I had seen her at the year prior. Where was she? At a clinic specializing in pelvic pain and endometriosis. I booked an appointment for that week.
In that appointment she said to me, “I’m so glad you found your way here, I didn’t have the resources to help you with the possibility of endometriosis before because it’s grossly under researched and we aren’t trained as OBGYNs in our basic training to know how to see it or treat it but that’s why I finally came here. I’m learning so much.” She proceeded to give me a pelvic exam, asking again about all of my symptoms and explaining to me the way endometriosis works, that it often doesn’t come up on any medical imaging and that the only way to get an official diagnosis was through laparoscopic surgery with an endometriosis specialist. She also said that the discomfort I was saying I had here and there, was probably a lot more intense than I was even letting on and that it was very likely I had endo.
I remember the tears escaping from the corners of my eyes, my mouth hanging open in disbelief, “you mean, I haven’t made this up?”
“Not even a little bit.”
So, I scheduled surgery for February 16, not realizing that this date happened to be the last day in the year of the Snake in the Chinese Lunar Calendar, the final day before the start of Eclipse Season, and the night before a New Moon. Now, maybe these aren’t your type of signs but it sure struck a chord of synchronicity for me. This became my North Star telling me that I’m meant to follow through. For some reason, when I couldn’t trust myself, I could trust this fact that I happened to align with a major transition in the cosmos. I came back to this glimmer of truth when I had to spend hours, days fighting with insurance (oh yeah, this procedure to diagnose and treat a disease that afflicts 1 in 10 people with uteruses (though likely more due to under reporting) is not covered by insurance and barbarically considered elective) and get MRIs (that show nothing for this disease) done. When I lay curled in a ball amongst loved ones over the holidays in pain but still doubting myself. And every step, my loved ones believed me when I couldn’t believe myself.
The night before surgery, terrified I was about to waste so much money over the lies I’d conducted, I cast a spell surrendering into the truth of what is, whatever that truth may be and genuinely went to bed thinking, “they probably won’t find anything but at least I’ll know.”
The next morning, first thing, we sleepily drove an hour through the just-waking streets of Manhattan, to a small hospital in New Jersey for my procedure. No turning back now. Two of my nurses had severe endo, shared their experiences with me, comforted me, when they heard what I was there for. I felt that glimmer of hope, maybe I was on the right path after all.
As I awoke from surgery, pain searing deeeeeep in my pelvis, groggy from anesthesia the first words out of my mouth, “did you find it? Did you find anything?”
After what felt like an eternity the surgeon found me and said, “we did.”
“You did??!”
“We did. We found extensive endometriosis and–” from there I blacked out with relief and tears and woozily drifted back into my medicated sleep. When I awoke again, Mikey was there and filled me in.
Endometriosis diagnoses are categorized in Four Stages:
1-mild
2-Minimal
3-Moderate/extensive
4-Severe
I thought at most they might find Stage 1 endo. But no, they found I had Stage 3. So extensive the endometrial tissues had formed bands of adhesions glueing the organs in my pelvis to one another and attaching my ovary and my rectum to pelvic wall. Translation: I officially had proof that I wasn’t being overdramatic nor was I being crazy. In fact, it was even more extensive than they had imagined.
On February 16, on the final day in the Year of the Snake, I completed my final shed. Not just physically, but emotionally, spiritually, psychologically. And although endo is an incurable chronic condition and I have received other diagnoses that need ongoing support as well, I mark this as the beginning of my healing journey in my mind, body, and spirit. I enter this year of the Fire Horse fortified and un-fucking-fuckwithable for I have my back all the time always no matter what and have just won a really fierce battle with my own self doubt, my deeply embedded stories of fear and unworthiness.
I am here because of my support system, without whom none of this would have been possible to pursue.
I am here because of the “Whisper Network” of Endo Warriors who share their own stories online, casting lifelines out into the ether that reached me in my darkest moments.
I am here because despite years of medical gaslighting, a LOT of self doubt from my inner bully, a fucked up medical system that is not designed to support me, little research/knowledge of this disease/ on healthcare pertaining to people with uteruses, I did not stop following that tiny whisper of my inner voice. I did not stop advocating for myself. Sure, I stumbled, doubted and faltered in my hope along the way but I didn’t give up. I’m really fucking proud of myself, in awe of myself, grateful to myself for that. Without my persistence I would not be experiencing this moment trust and clarity.
So now, the hard work of healing, of resting, begins. Hell, it’s already begun.
Right now, this looks like:
ordering a cute purple cane that I’ve named ‘Ex Caliber’-Callie- for short to help me feel supported in moving through the world and not explaining or feeling the need to prove to anyone why I need it.
logging on to the job interview I had today and not down playing how fucking great or in pain I am.
Standing up to the internal and external bullies with my full chest and without apology by setting a boundary, holding my ground and not feeling guilty about it even and especially when people throw a fit in response.
laying on my couch, heating pad under me, heating pad on top of me and asking my sweet friend to scoot the coffee table closer to me instead of trying to do it myself :)
leaning on my husband, A LOT, despite enjoying being an independent bad bitch.
not trying to ‘tough out’ recovery by not taking pain meds because I am allowed to rest and heal and take the support that is offered me-I don’t need to earn a gold star for healing (ask me how i came to this conclusion 😛).
recovery essentials: callie the cane, Survivor buff, women's figure skating, flowers from friends, heating pads, stacks of books, all of the beverages, donuts from a friend and of course, meds, Roxie kisses drinking lots of water, listening to my body when she says to sit down or get up and walk.
checking out alllll of the library books and making myself a ‘Recovery Syllabus” that includes books to read and movies to watch everyday and not responding to emails (books include the Her Majesty’s Royal Coven series by Juno Dawson and Cassandra Speaks by Elizabeth Lesser (recommended by Jessie Buckley)
letting the big feelings come and move through me freely without having to know ‘why’ and letting Roxie lick my face
taking this lesson in my own power and shining it as a light against my own self doubt and choosing to trust this evidence of the power of my own intuition instead of the intrusive thoughts.
buying cute AF drawstring comfy pants and not worrying about wearing pants with buttons ever again because that’s not my business anyway
wearing my Survivor buff around my house because I like the way it looks on me and it makes me feel tough and reminds me of the magical day I got to spend with my bff Jeff
not awaiting permission from some external power Christen me worth of writing my book, creating my creations
rewatching all of the Hunger Games movies after reading Sunrise on the Reaping (so good) and determining that while the first film is actually a really great adaptation the other ones are frustratingly bad films and make me angry (we can continue this conversation later)
watching the winter Olympics and falling in love with women and their triumphs and JOY over and over again (hello, USA Hockey, Alysa Liu, Eileen Gu o and hell yes to curling)
And finally, it looks like taking my time to write all of this down and sharing it with all of you because it feels freeing, good and true.
If ever you are in doubt, please know you are not alone, YOU ARE NOT. CRAZY., you do not have to earn relief. You are always worthy of self sovereignty and support no matter what doctors, society, the healthcare system or internalized programming may say.
I love you.
I love me.
Happy New Year, babes.
May the mighty rest begin.
Xx
A
in awe of your strength and inner wisdom❤️ thank you for sharing🌸