Stage 4 Endometriosis

A year ago today I had laparoscopic surgery to remove a giant baby head-sized endometrial cyst from my ovary. Happy 1 year post-op anniversary to me.

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This super flattering picture is 1 or 2 days post-op, my belly is hugely bloated from being pumped full of gas.

So I’m going to talk about a few things. I’d like to go over 3 aspects of my endometriosis that I haven’t gone into detail about before and they are 1) the different stages of endo 2) my period of agony while in Stage 4 and needing surgery and 3) the actual procedure of removing endometrial cysts and material.

The Stages of Endo

There are apparently 4 stages of endometriosis and I didn’t even know that until yesterday. My doctors and surgeons didn’t really have a whole lot of information for me, to be honest. By the time I even went to the doctor because I was concerned, I was in Stage 4.

Stage 1 is pretty minimal. The internet describes this stage as having “flecks” of tissue that at worst can cause adhesions and scar tissue.

Stage 2 is where these flecks grow slightly and start to cause more pain than normal during periods. They bring on nausea, tenderness, and cramping in the lady area. Lesions start appearing on all sorts of un-fun stuff.

Stage 3 is when those cysts start to form. They are little blood filled cysts of endometrial (or uterine) tissue and they’re super gross and super icky. They’re referred to as “chocolate cysts” which is like naming something awful with something awesome, as if that’s supposed to make it better. I haven’t ever heard of “cheese tumors” and I had better not. The cysts start interfering with your menstrual cycle in this stage and pain is pretty bad, especially during ovulation. This is where I would be in bed with my entire lower half cramping and seizing and me throwing up.

Stage 4 is where the cysts and tissue and lesions and scar tissue has gotten so bad that things need to be surgically removed. Endo tissue can also adhere your organs together! Fucking GROSS. It attached itself to my colon and I still have residual pain from that. My surgeon says I will have scar tissue there forever so whenever I have particularly big bowel movements, I literally collapse from the pain. I don’t eat big meals anymore. Yeah I’m talking about poop. Get over it.

So I had no idea about these stages and I also have no idea what stage I’m in now, despite being in recovery. Endo is progressive and aggressive so it will keep coming back. My pain isn’t so bad though, so maybe 1 or 2.

Leading Up to Surgery

I had suicidal thoughts for the first time during this dark period of my life. And my decline was SO fast. One day I was fine, I had been working hard in the gym and I had accidentally partially burst my cyst doing core work. I had a sharp pain in my lower left side and I got swollen very quickly. Within 24 hours I was struggling to walk.

I got ultrasounds and my doctors gave me a cocktail of drugs to take to tide me over until my surgery…2 months from then. So they wanted me to take painkillers, muscle relaxers, and the occasional xanax for 2 whole months and pretend I was a functioning human being. I was teaching music in about 8 different public schools at this point mind you. There was no way I saw myself doping up in the mornings and then trying to teach children while out of my mind and in pain. But that’s what I did. It sucked. I couldn’t wear normal clothes either because my belly had expanded from the ever-growing cyst.

Worst yet, I had my competition in Switzerland in April, with my surgery in Mid-May. I had to somehow prepare for the most crucial performance of my life, represent the USA, not make an ass of myself, and deal with stressful language barriers and travel for 2 weeks. All while doped up and in a shit ton of pain. I was very ill when I arrived at my little host family’s farm. They were concerned with how nauseous I was all the time and fed me ginger daily and tried very hard to accommodate me. They were so so sweet.

So I just had to make it another few days before my scheduled performance. I spent my time taking short walks while slightly high, petting cows, sleeping, and pretending I was okay while sipping delicious swiss coffee with my colleagues. When my time came to play, I hydrated like crazy, took extra tramadol (mild pain killer), 2 xanax, 1 beta blocker, a shit ton of advil, 2 zofran (nausea), and I ate bananas and toast. It was ridiculous. Playing on those kind of drugs was like driving on acid. Not that I’ve done that, but it’s the only thing I can think of to compare it to. My reality was warped but I was sober enough to do what I had to do. It was like I was watching myself experience everything from an outside point of view and my performance was whizzing past me. It was like I was relaxed but the pain was terrifying. I wasn’t stressed but I felt like I was dying. I worried that the judges would see that I was fucked up but I also didn’t care because xanax is a helluva drug and also I didn’t have any choice, really. I wasn’t going to get to my field’s version of the Olympics and not compete after all that preparation and angst leading up to it. I was prepared to stop and feign physical distress if I absolutely had to and my teacher was on the panel of judges so he could 100% vouch for me and tell the rest of the judges what was going on.

Apparently my teacher told them about my health situation before I played and they each came up to me at various times during my stay to express their concern and offer their well wishes for my healthy recovery. They also said I played wonderfully. Because I did!! Imagine that. So we had to play 2 pieces, 1 was a tough Bach Cello Suite that was super athletic with very few spots to breathe and also very very revealing because to play Bach, you have to have opinions. Justifiable ones. Things have to be stylized and everything you play will be heard upon the assumption that you chose to play things for a reason. You have to show range, versatility, virtuosity, and exquisite mastery, all while being able to make things sound simple. Bach is a clusterfuck of musicianship to attempt in performance. And the piece wasn’t even intended for my instrument! So naturally my Bach was great, haha. I remember it being great, actually. And then I remember stumbling through the romance era cello piece by Schumann. It was okay. I got through it, didn’t miss much, but it wasn’t awe-inspiring, which is what they were looking for at that level of competition.

So all in all, I did pretty fucking amazingly for a doped up, jet-lagged tourist with a giant cyst eating all of her organs.  

The next morning at breakfast, I went through withdrawal in front of my teacher. He saw it happening, is what I mean. I don’t mean to say he sat there with me for days while I went through it, but he saw my body failing me in front of everyone. I was sweating so much I had soiled my blouse, I had beads of sweat on my forehead and upper lip, I had the shakes, and I just looked like a mess. Ultimately I decided I should wait until I was home to go through that so I went back on my meds for the duration of my stay. I hate painkillers. They make you constipated, they fuck you up, they make me nauseous, and it sucks to feel dependent on them, especially with the stigma around them these days. And this was just tramadol, not even oxy or percs.

Right when I got home from Europe, the doctors office tried pulling some last minute bureaucratic bull shit on me, saying I didn’t get clearance and that I would have to wait another 2 months for insurance to fix the mistake. I got this news on the phone while waiting for a gig to start, so I was backstage. I immediately burst into hysterical tears and screamed in anguish. I ran out the exit doors and screamed some more and told the admin assistant that she had better figure it the fuck out because if not, I was going to kill myself. I’m not sure if I meant it, but I certainly felt like it. Every day was absolute hell. I was eating more, I couldn’t poop, I was sick constantly, I could barely move, I was just wasting away, really. I didn’t think I could handle another 2 months.

Laparoscopic Ovarian Cystectomy

That just means laparoscopic removal of a cyst from my ovary. Instead of flaying you like a fish and poking around inside you, they do this other weird but less invasive thing where they poke surgical chop sticks with cameras into you, blow you up like a balloon with CO2 so they can see what they’re doing, and then they carefully remove all the bull shit from inside you.

The gas sticks around for about 2 months. It’s stuck in there post-op and takes a while to sort itself out, giving you scary chest pain, rib pain, back pain, and intense bloating. It hurts to laugh or cough and you waddle around like a penguin for a while. Waddling helps get the gas out too, even though you feel like you’re at 10% human capacity. I waddled a whole bunch around my neighborhood and within a week after surgery was walking fairly far with hopes that it would help ease the gas pains. It still took 2 months.

I woke up from the surgery kind of groggy, to be expected, and was told I could go home when I was good enough to pee. So I peed with the fire of a thousand catheterized suns and my mother took me home. She brought me awesome McDonalds for comfort too, which was a great way to say sorry for being too drunk to take me to the hospital in the first place. Ooo little spicy drama there. True story. She also told me having children would cure my endometriosis. I hate children. You can see why our relationship can be strained at times but that’s not really relevant. It merely added to my stress at the time.

Once I had moved to Colorado and the 2 months passed along with the gas (lol the gas passed, you guys, get it?) I felt like I had a brand new body. I still had chronic pain but I felt lighter, I felt limber, I felt strong, I felt like a whole new person. I still feel good to this day, but I can tell my endometriosis is coming back. In about another year I will want to have my left ovary removed, my tubal done, and an ablasion done to remove whatever tissue has grown since my last surgery. I am not looking forward to that and the dread constantly looms overhead. Not to mention my deductible went from 2500 to 3500 this year. Same pay scale. Same coverage. And I still have another 800$ left to pay off from the first surgery. Super.

So happy 1 year to me. I had the most progress I’ve had in my entire life in that year. I changed my career, I got way way healthier, I started power lifting, I got a trainer, I hiked 14ers, I moved to a beautiful state, I got a dog, I started yoga, I realized some important personal truths about myself, and I have 2 other big things I have non-disclosure about but basically I killed it this year. That surgery made it possible. I’m not looking forward to the next one but I’m so much stronger and wiser and more ready for when the time comes.

Endo fucking sucks. If you know someone with Endo, give them the biggest gentle hug you can. We have to deal with this shit forever, there is no cure for it. We have to continue to have surgeries and endure barbaric medical procedures because research hasn’t found a way to keep this rogue tissue from growing. And 176 million strong-willed, warrior women in the world have this life sentence. Hopefully science catches up with us suffering out there.

Thanks for reading,

-Elle

 

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