HOW ENDO FEELS TO ME

ENDOMETRIOSIS PLUS

May 15, 2022, One Month Before Surgery

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Last night I went through something I can confidently say you have never experienced. 

Words cannot convey, images cannot capture, and sounds cannot evoke the physical sensations and emotional waves that accompanied this thing.

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And if I try to share it with you, what will you try to do with it anyway? Will you diagnose it? Will you treat it? Will you say it's my fault? Will you say I made it up?

I deeply fear each of these responses.

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Or will you feel sorrow for me (Mom) or hurt that you cannot help (Kyle)? Or will you feel my pain (Stephanie, Kim, maybe others)?

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Background

I have endometriosis. How bad is it? I don't know. It can't kill me. People seem to have differing opinions of how bad the pain can be, how debilitating it is. And I don't know what other people feel. So I don't know.

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I will know soon. I'll be going in for surgery on June 15. My feelings on that are a whole different story, but you can believe that I have some.

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And one reason you can believe it is that I also have some sort of vague mental illness that has been loosely diagnosed as "depression, anxiety, and adjustment disorder." 

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How bad is it? I don't know. It feels pretty bad. But to say that it's pretty bad feels dramatic. 

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So I don't know. I go to doctors and I say "I don't feel right" and they say "is it like this?" and I say yes and they try me on a pill. Then a couple of weeks later I go back and they say "do you feel better?" and I say "....I think so. I feel different. So probably?"

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(But I say it better than that because I am the patient and I know my role in a medical setting. I am to do what the doctor expects. Plus I am a woman raised in the church and I know that we try to never say things are bad. So when I say it to the doctor it sounds better than that. It's a definitive answer, just like the doctor is looking for, even though the reality is I don't understand what it happening in my own body and mind.)

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So that's how bad it is. It's I-don't-know-sometimes-good-sometimes-bad-and-only-the-winds-of-chance-know-why. 

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But it's like that for all of us, right? Don't we all feel bad most of the time? I don't ever want to suggest that I'd be different from the average. Because that's unlikely. Average is the most likely so it's likely that I'm average.

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So I'm sure what I'm experiencing is pretty normal. But if you're all feeling this, how are you all hiding it so much better than me? How aren't you falling apart at the seems (or the seams....sometimes the typos are clever though, and it's better if you leave them.)

It's an entree of endometriosis plus an average scoop of depression on the side. Neither one a big deal. So I'm normal. (Please keep thinking I'm normal as I share this story....I don't want to be different.)

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Saturday

I woke up at 11:00 AM with a headache because I had missed my morning coffee. This sent me out into the city in search of provisions. We walked for a while, going to a handful of nearby places we visited frequently, collecting coffee, acai smoothies, and chicken on our route. I say all this to note that none of this was out of the ordinary. The food, the walking, all very safe and very routine.

But when we returned from the walk things took a sharp turn. I felt a dull, tugging ache starting in my lower abdomen on the right side (where I know I have an adhesion, because it showed up on an MRI in 2020, and I assume it hasn't gone away). It wasn't a sharp pain, like a knife. It wasn't a burning pain. These are the things I think about when I think about pain. 

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This was a pulling pain. As if little hands in my belly were scraping and scratching and pulling my organs apart.

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It was a twisting pain. A never-ending vise grip pulling at something inside me. 

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It's not something that I have a name for, or that's easy to describe. 

I laid down with my heating pad to wait for it to subside and sent Kyle down to the pool to swim, since that's what we had planned to do. 

The pain began to intensify while he was gone, and when he came back I was doubled over on the floor wondering if it was time to go to the hospital. The pain radiated to all areas of my abdomen and back, and it was relentless. I could find no relief. I had taken Aleve, was clutching two heating pads, had swallowed gas pills in case it was a mystery digestive issue, and was performing gentle rocking motions and stretches, but none of this did much to alleviate the pain. I was becoming distressed.

With no other options, I took some 1:1 THC/CBD capsules I had in the drawer. (I've had my medical marijuana prescription since 2020 when I was experiencing unbearable bladder pain and urgency, also associated with the endometriosis. These often helped me with throbbing abdominal pain, probably by keeping my muscles from spasming.) Today, however, since nothing else I had done had touched the pain, I took twice my normal dose (20mg, for the inquiring minds).

Here is where it gets weird. I returned to my spot on the floor and curled into the fetal position. The pain had me moaning, and when it got bad enough, the moaning turned to crying. And as I hugged a towel, rocking back and forth to try to soothe the pain I thought "this is what the doctors need to understand." 

I've been communicating through pictures lately, when I find that words don't do the trick, so at some point it occurred to me to take pictures of my wet, blotchy, ugly face as I cried in distress. Doctors always want to know what it feels like. This is what it feels like. I can't tell it to you in words. I don't know how to describe it. But this is what it does to me. This is why I need their help.

As I rocked and cried, I felt a bit better. I remembered reading that our tears are designed to relieve pain and get rid of toxins, and so I thought "why not go with it?" (Who knows if any of that is true, but I'm not going to look it up. I'm going to ride that placebo effect into the sunset if I can.)

So instead of trying to gulp the tears down as soon as I can and stop crying, I decided to let myself cry and see what happened.

As I cried, I played some music. "Music soothes the savage beast," doesn't it? I had been taking comfort for the past few days in the musical Aida, which spoke to the deep pain, sorrow, and struggle I had been feeling. So I played some of the songs I had found powerful.

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Perhaps that was my mistake. Deep feelings that had been welling up inside me, bubbled forth after having been kept down for so long.

The music, pain, and emotion mixed in my body, and I rocked and sobbed. The rocking seemed to sooth both my abdomen and my soul. I felt waves of pain--physical and emotional--flooding through me.

I began to grow alarmed by the experience. Here I was in intense pain, but also experiencing some sort of emotional release, sobbing and rocking. There was a sense of relief until a fog of physical and mental apprehension began to rise within me.

And that apprehension was almost certainly a feature of the THC. I had been hoping to relax my abdominal muscles and let my nerves know that this pain was not an emergency. (It's like no one ever told those nerves that what we have is endo, and endo hasn't killed a person yet. They still seem to think something's wrong down there, and I just can't convince them otherwise.) But it seemed that I'd also awakened some primal discomfort in me, and a wind of panic began to blow.

I began to fear I was dying. The pain was intense, my heart rate was high, and I was losing peripheral vision. Everything from the outside world became muted, and my whole existence became these waves of internal pain. I experienced the pain both in physical sensation and in bursts of light and color. Sounds in my environment penetrated my body and connected with the pain. How could something this strong not kill me?

(Add to that the death premonition I had issued just the night before. Another story for another time, but it had centered on my belief that I would not survive my endometriosis surgery, which I am scheduled to undergo in a month.)

So when I couldn't feel my hands and feet, I asked Kyle take me to bed. There in the dark, with my husband beside me, listening to a recording of birds tweeting, I relaxed and decided to let myself die.

First I thought about the things I had left undone. Mostly things that I wish I had cleaned or thrown away because it would be embarrassing when my mother-in-law came to clean out my clothes and boxes of junk. But also projects I had left undone and risks I hadn't taken because I was afraid to let myself be known. And now, on my way out, I wished I had taken a better shot at expressing myself, sharing my experience of life, and letting my inner self be known. I wish I had been vulnerable more often.

I grieved for Kyle, of course, but was reassured by his claim from the previous day that his family would take care of him.

And then I relaxed into it. "It's been a good run," I thought. "I had good times and bad times and I'm tired, and if it's time, it's time."

I felt my body going numb and was just waiting for my spirit to rise up from it.

But instead, it was as if a spotlight focused on the point of pain in the body. The rest of my body faded from existence, but the point of pain was bright and bursting with vibrant color and energy.

The recorded  bird sounds I had been listening to (I've heard bird sounds are supposed to make you feel calm) became brighter and louder. They were high and clear and I could see them shoot into my body like bright lines of color. They dug through layers of skin and tissue and entered into the pain. And they began to work on the pain, pulsating, warming, gently pushing and pulling, softening the knots of scar tissue and pain.

In one recording, three loud individual birds let out tweets like whistles that arched in colors and scraped my abdominal cavity, scraping away the invasive endometrial tissue. I saw it happen as clearly as if I had been watching a video.

In another recording I head layers of birds and insects so rich I could picture the wooded area it may have come from. I saw myself facing the forest, my mid-section open and hollow, exposing unwanted growth. I imagined the birdsong reaching into my abdomen to sooth and shape and pet my poor agonized organs. 

And finally, in one recording, I was convinced I heard bats. I imagined the bats hovering in formation in front of my pelvis, using their sonar to break up the adhesions and using their wings to suck out the problematic tissue. 

As I pictured all of this, I began to feel better. My body became calmer. My pain subsided.

I knew that I wasn't dying in that moment, and I began to think about whether I could ever share this experience, in words, sounds, and images. I wanted other people to know what it felt like to be me. It's terrifying and intense, and I wonder if you could understand. I wonder if your lives are also terrifying and intense, and if they are, why aren't we talking about it?

I know that as hard as I try, you will never understand the physical sensation, the waves of emotion, and the terror I felt as I thought I was losing my body and mind all at once. But I think it will help me to try.

And now.

I am lying in bed typing this in an email to myself, as I often do when I have something on my mind. 

I'm typing it in an email rather than on my website, because I'm not sure what to do with this. 

I'm hesitant to publish it under my own name, because I enjoy my reputation among friends and family as Crazy Lite (TM). You know, depression and anxiety. We all have them to some degree. Life is hard and everyone struggles.

And then I think that I'm a fool to think anyone would bother to read this at all. What do I have to say that isn't already being said by thousands of other people, all of them better qualified than me? I am small and unimportant. It's okay. I feel safest when I am invisible, but it is hard to get things done that way.

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So I'll put this somewhere for people to find. And if you find it, please be kind, gentle reader. You frighten me.

There's a part of me that hopes you will find it, and help me sound an alarm. An alarm for what, I don't know exactly. For a lot of things maybe.

For how unhappy so many of us feel. How much actual despair we are walking around with, waiting to bubble up when our bodies feel enough pain that we allow ourselves to cry.

For how poorly we pretend to care about people's mental and physical health, and how it's failing so many if us. We act like people are greedy when they want to feel safe in their bodies and minds. Why is that asking too much? 

For how isolated, and small, and powerless so many of us feel. How unjust the world seems, and how angry, and how overwhelming it can be.

I know it's not just me. I know you are suffering, too. What if the people in charge did something about it? Do you know them? Can you talk to them about it? Could we all try to know each other a little more and help each other with our pain?

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Or maybe it is just me. Maybe I'm sounding an alarm only for myself, and the only thing that will happen here is that my loved ones will gather around me and feel my pain. There are worse fates. Give me hugs and let me know you love me. I hope I do the same for you.