The Cost of Survival

I have a couple of close friends who are confronting similar things right now, I’ve learned through conversation that the loneliness of chronic pain or disease is the most difficult part. I’m here to remind you that your thoughts and fears are valid and your feelings are not shameful. Yes, it could be worse but this is our worst and that matters.

March is #endometriosisawareness month.

Normally I’m sharing a bunch of research, videos and articles but this year has been different for me.

I worked nearly all of 2022 & 2023 with holistic medicine to balance my hormones, shrink my tumors/cysts and to feel healthy. I had small spurt of success, times when I got very excited for a very hard disappointment when my body would inevitably succumb to my disease.

No matter what I did, things just steadily got worse. I felt it in June, voiced it in July and was in the ER in August learning that I had not just 2 growths on my ovaries but 4 and they were growing at an increasingly alarming rate.

I was referred to oncology immediately - labs came back with elevated levels of abnormalities, my body was declining and there was no stopping my life from crumbling apart into bits that I held on to as much as I could. Falling through my fingers with no way to stop it from happening…

The entire month of September and half of October were a blur of appointments, trying to live life as normal as possible, excruciating pain and debilitating exhaustion.

I was unable to lean into the fear, numb to the realities of what I was facing, grappling with the idea of what my body would lose in my upcoming surgery. The only thing I had control of was my emotions and staying in my body so that is what I did. No one to relate to, no one who had the right words to say. There weren’t words because everything was wrong.

I’m not sure how I got through those couple of months, it felt like a year. I had surgery mid-October and rejoined life too quickly, the holiday season was a distraction from the reality that the procedure to remove the masses had both been a success and a failure.

Less than a month after my surgery, I had an Endo flare that took me out like never before. It wasn’t supposed to happen and I wasn’t prepared for it. The 23+ cm growths had been removed but the disease had spread with a vengeance.

I lost one ovary. I couldn’t have my uterus removed because of the Stage 4 diagnosis, all of my lower abdominal organs are fused together, connected with a venom-like tissue. The one organ that I had made peace with losing is FORCED to stay inside of me, breaking me and ripping me apart because it’s latched on like a leach sucking away my life force and growing toxic masses that consume every part of my life.

Frozen Pelvix Syndrome is what they call it - I call it hell.

I struggle with movement because of the inevitable pain.

When I don’t move, my internal body fuses together and causes worse symptoms when I do get active. It’s a prison.

What am I to do? There’s no cure. I am upset with my surgical team. I’m upset with my body. I spend nearly every day willing myself to continue forward as if I won’t be paying the ultimate price for it later or paranoid of what is to come - I just can’t miss any more of MY life.

I find peaceful purpose, create joyful moments and I’m kinder to myself than usual. Nothing has changed though.

In February I just barely started feeling like I could reach myself again. My priorities have changed. My attention to trivial things no longer matter. I’m a little jaded, a little depressed, a little content - a little of everything but not enough of anything.

I know the tumors are growing back, I can feel it every time I stretch to far. I know my disease has spread. I know there is no end to this hell hole of an existence. Dramatic? Maybe. That’s how I’m feeling today and that’s okay.

I’m still going to get up, put energy into my business, spread love over my family, nourish my home but inside of Bry, inside of ME - I’m SO.fucking.tired.

I’m tired of not knowing when far is too far, when I’ll be brought to my knees once more by crushing pain and a fogginess in my brain that confuses me into irritation. My body betraying me for what I eat, what I do, how I move. The look on my children’s faces when I cant show up for them…

There’s no greater stage than stage 4 - so what do we call it now? Perpetual consumption?

There’s no cure. There isn’t enough attention on women’s health. There is no amount of sacrifice in lifestyle that truly brings satisfaction through chronic pain. You’re always losing something. Always settling.

So today - it’s #endometriosisawarenessmonth, 1 in 10 women suffer at some capacity. It sucks. The people who don’t suffer the same won’t understand. You’ll be labeled everything under the sun for simply being incapable. You’ll exhaust your relationships and exhaust yourself. You’ll search for new ways to feel better, until you don’t. You’ll exhaust energy and money to search for something, anything to bring you relief…

I’m over it. I’m sick of living this way for the last 15+ years. I don’t even know what it’s like not to live like this but knowing that it will only continue to get worse? This awareness month actually pisses me off more than anything else - there won’t be a cure in time for me. It’s consumed me and I’m afraid to start the process again to inch closer to the next surgery because of what that means for my future; each time increasing my risk of cancer and creating scar tissue to fix one issue and cause three more - I’m a guinea pig of failed experiments.

My wish is that there will be a cure for my daughter because I have passed this on to her through my own tarnished genetics.

If a woman’s cycle is painful, believe her.