It’s been about a year since doctors figured out I have Endometriosis and Adenomyosis. If you’re not familiar with these terms, let me break it down for you in simple terms. Endometriosis is when tissue that’s kind of like what lines your uterus starts growing where it shouldn’t – like on your intestines or bladder, pretty much anywhere in your body. And Adenomyosis? That’s when that same kind of tissue starts growing into the muscular walls of your uterus.
So, for me, this means I’ve got this tissue in places it’s got no business being, both inside and outside my uterus. What’s it like? Well, this tissue acts just like the stuff inside your uterus, meaning it responds to your menstrual cycle. And yeah, it’s as painful as it sounds. I’m not a doctor, so I can’t give you all the medical details, but if you’re curious, there’s a ton of solid info out there on reputable websites.
It’s pretty disheartening that it took so long to finally get my diagnosis and even learn about Endometriosis and Adenomyosis. I totally get why so many people are going public with their stories, talking about how it took forever to figure out what was wrong. It’s crazy that we still live in a world where agonizing periods are often brushed off as ‘normal’ – which, just to be clear, they’re not!
I was about 15 when I first saw a gynecologist because my periods were just unbearable. I can’t exactly remember when they started, but it was pretty early on. I told the doctor straight up that I was in so much pain I could barely sit or stand for the first couple of days. I’d heard from friends that the pill could help with the pain, so I asked if I could try it. The look she gave me was so cold it could freeze water – she told me that pain wasn’t a good enough reason to get on the pill and that it was normal to hurt like that. Then she asked if I was sexually active, and when I said yes (smart cookie, eh), her whole attitude flipped. Suddenly, she was all ready to write me a prescription because, in her eyes, that was a legit reason, but pain? Just something to tough out, I guess. Needless to say, I never went back to her again.
Back when I first started on the pill, I didn’t give much thought to what it meant for my body. The one I was prescribed kept my periods at bay, so for a long stretch, I didn’t have any. Honestly, it was a relief – no pain, no fussing with tampons or pads, and no worrying about what I couldn’t do when that time of the month rolled around. But after a decade and a few health issues, I started to wonder why I was still popping that little pill every day.
I remembered the changes that came with it – yeah, it’s a bit of a cliché, but I packed on some pounds even though I was swimming laps several times a week. Then there was the anxiety disorder that crept up on me, which I tried my best to manage. Sure, the pill is handy for preventing pregnancy if you’re with someone and want to skip the condoms. But let’s face it, birth control shouldn’t just be on the woman, and playing it safe is always the smart move – you can’t be too careful, right? So, I made the call to stop taking the pill. It just felt like the right thing to do.
When my periods came back after I quit the pill, they started off pretty mild. My body was just getting used to the whole cycle thing again after a ten-year break. Surprisingly, my cycle normalized pretty quickly. But with each month, the pain ramped up, getting so bad that I was popping painkillers like they were candy – and they barely made a dent. Plus, taking too much Ibuprofen isn’t exactly a walk in the park; the side effects can be nasty.
On the upside, I noticed I was shedding some weight, and my anxiety wasn’t hitting me as hard. My panic attacks dialed down a notch (though anyone with anxiety knows it’s always lurking around the corner). But as the pain got more intense, nothing seemed to help, and it started to really mess with my head. I’d find myself breaking down in tears when I was alone, just totally swamped by it all.
Enough was enough. I needed answers, a real name for this pain, a way to face it head-on. So, early last year, I sat down with my gynecologist and poured it all out. And you know what? He actually listened. He whipped out a bunch of info and walked me through what this pain might mean and how we could get a definitive diagnosis. Turns out, the only way to know for sure is through a laparoscopy, which is as sci-fi as it sounds. They knock you out, make a few tiny incisions in your belly, pump it full of air, and go exploring with a camera. It’s pretty wild, but it’s the only way to see what’s really going on in there.
Walking out of that doctor’s appointment, I was a whirlwind of emotions. On one hand, I was relieved to finally be taken seriously, to know that a clear diagnosis was just a surgery away. But on the other hand, I was scared – scared of what they might find and of the surgery itself. I had a rough time after my first operation, with my blood pressure dropping so low I almost passed out, all alone at home – scary, right?
After giving it a lot of thought, I realized what I needed most was clarity. I had to put a name to this relentless pain, to confirm what was happening inside me. I was done with the ‘what ifs,’ exhausted from the constant ache, and I needed to tackle this head-on, both physically and mentally. I wanted to understand what this all meant for my future, for my life. So, I made up my mind to go through with the surgery.
During that period, one of the things I found tough was the thought of telling my family about my decision to go through with the surgery. I was in the midst of healing from various things, not all family-related, and I was doing a lot of soul-searching about stuff from my childhood. To put it simply, I just wasn’t in a place where I felt comfortable sharing my personal business with my family – I was dealing with a lot mentally, and to be totally honest, I didn’t feel like they really saw or heard me.
That’s why I chose one of my best friends to be my emergency contact. She’d been my rock through some really tough times, and I felt a sense of peace knowing she’d be the one they’d call if anything happened. Eventually, I did sit down with my parents for a heart-to-heart about some childhood issues. That conversation turned out to be incredibly healing for me, one of the best steps I’ve taken on my journey to recovery. Still, it wasn’t until a few weeks before the surgery that I actually brought it up with my family. My brothers were already in the loop – they’ve always had my back.
I had my surgery lined up for just a few days after I got back from Mallorca. That last night on the island is etched in my memory – I got my period, and the pain was off the charts. I spent the night awake, downing painkillers, curled up on the cold bathroom floor, tears streaming down my face from the sheer intensity of it all. That moment pretty much sums up the brutal reality of living with this condition: the excruciating pain, the mental drain, and feeling utterly lost about what to do next.
Suddenly, the day of my surgery was upon me. My brother was the one who dropped me off at the hospital, where I’d be staying overnight. Strangely, I wasn’t nervous at all, probably because my friends had been sending me the sweetest, most encouraging messages. Knowing they were thinking of me and sending their support was incredibly touching. Yet, amidst that warmth, I couldn’t help but feel a pang of sadness – none of my family had reached out, and that would weigh on me heavily after the surgery. In the operating room, a nurse gently took my hand, looked me in the eye, and assured me everything would be okay. That kindness nearly brought me to tears.
The surgery itself went smoothly, but I vividly recall waking up in recovery, tears streaming down my face. I was just so overwhelmed, and all I could think about was my friend, wishing she could be there with me instead of my family.
I was taken back to my room to wait for the doctor to come and explain everything. Just by the way the nurses were looking at me, I had this sinking feeling that the news wouldn’t be great. That evening, two doctors stopped by with my diagnosis. They managed to remove a lot of the endometriosis, which was a relief, but adenomyosis is a different story – it’s not going anywhere without a hysterectomy. And the thing about endometriosis is that it just keeps growing unless you’re on hormonal contraceptives, which is a whole other can of worms.
What really got to me was how the doctors were pushing me to go back on the pill and to get an IUD, as if that’s some kind of magic fix. I remembered one of the doctors from my pre-op appointment – she’d been the one insisting I consider an IUD “just in case,” since I’d be under anesthesia anyway. Despite me saying no several times, there she was, pushing it again. It took a firm, more direct ‘no’ from me to finally get my point across. I just wish they’d been a bit more understanding. You’re sitting there, getting news that’s going to change your life, and a little empathy would go a long way.
Receiving my diagnosis left me feeling pretty hollow. I spent a lot of time crying in the hospital, not so much from physical pain – I even got up to put my piercings back in, craving some kind of movement – but from the emotional toll it took on me. My mind was racing with thoughts about what the future held. It’s tough enough having endometriosis when you’re thinking about having kids, but throw adenomyosis into the mix, and it’s a whole different ball game. I’d never been dead set on having my own children, but I’d always appreciated having the choice. Now, I knew that road would be incredibly difficult and expensive, with IVF treatments and all.
My hospital stay was alright, and by the next morning, I was eager to be discharged. There was a bit of a delay with some paperwork mix-up, but I was so ready to get out of there. My brother, the same one who’d dropped me off, came to pick me up. He already knew about my diagnosis because my friend had filled him in post-surgery. He gave me this look that said it all, asked if I was hungry, and then we were off to grab some burgers, fries, and iced tea. Trust me, there’s nothing like some good old comfort food and the right company to lift your spirits after a time like that.
Physically, I bounced back from the surgery pretty quickly. I was supposed to be off work for two weeks, but I ended up going in one day, thinking it might help me take my mind off everything. That turned out to be a huge mistake. My colleagues could tell something was off – they noticed my pale face and told me I should head back home. Not everyone knew about the surgery, but they could see I wasn’t myself. I had lunch with a coworker and spilled the whole story, which led to some really deep conversations. That part was good for me, but I still should’ve stayed home. I can’t really explain why I ignored the doctor’s note; maybe I was just looking for a distraction. Needless to say, after that day, I took the hint and focused on getting better.
Just three days post-op, I couldn’t stand being cooped up in my apartment any longer. I needed to do something, anything, so I found myself back at the gym – my happy place. I didn’t do anything crazy, just a gentle walk on the treadmill, blasting some Bad Omens (my go-to band during this whole time), which honestly felt amazing. My recovery was surprisingly smooth; about a week and a half after the surgery, I was back to my regular gym routine without any issues.
The physical recovery was one thing, but getting my mental health back on track was another story. It wasn’t just coming to terms with the diagnosis; it was also grappling with the fact that my parents and sister hadn’t checked in after the surgery, hadn’t offered any kind of support. At that point, I was too overwhelmed to even express how much their absence hurt me – I was too caught up in figuring out how to live with this illness.
What stung the most was remembering how I’d been there for my mom when she had knee surgery. I did everything for her – bathing, cooking, cleaning, the works. I guess I just hoped for that same kind of care without having to ask for it because isn’t that what families are supposed to do? Eventually, when I started feeling a bit stronger, I sat down with my folks and laid it all out. I told them how let down I felt. They were apologetic, and my mom, in particular, seemed to get why I was so upset.
When it came to getting my head straight after the diagnosis, I basically scheduled in some time for a good, solid cry – and trust me, there were some intense tear sessions. After that, I gave myself a pep talk: it was time to pull up my big girl pants and make a game plan. I dove into research, looking for ways to manage my condition without resorting to the pill or an IUD. I pored over books written by others who’d been through it and learned how diet can play a role in dealing with these inflammatory diseases – because that’s what endometriosis and adenomyosis are, and why Ibuprofen is often the go-to for the pain. So, I decided to experiment with my diet. I’d already gone vegetarian earlier in the year, so that part was easy. Cutting out alcohol wasn’t a huge leap either since I wasn’t a big drinker to begin with. It was worth a shot to see if avoiding these inflammatory foods and drinks would make a difference in how I felt.
Post-surgery, those first few periods were still a nightmare. Maybe not quite as bad as before, but pretty close. I remember feeling so defeated and down, even though my gynecologist had warned me it might take a while for things to improve. I kept wondering if the pain would ever really fade, or if this was just going to be my reality. Thankfully, things did start to get better. I won’t lie – I still rely on pain meds to get through it, but at least now they actually take the edge off.
I’m aware, though, that popping pills isn’t a sustainable strategy, especially with endometriosis being the persistent beast that it is, always ready to grow back. What I really hope for is more research into this condition. So many people are suffering, and it often takes an eternity to get a proper diagnosis – I was in my late 20s by the time I found out what was going on. It’s about time this issue got the attention it deserves.
On the mental side of things, diving into books and research really made a difference. It helped me frame everything in a new light, and making active changes to my diet gave me a sense of control, like I was doing something tangible to fight the pain. It’s not like I’m constantly thinking about my chronic illness – it’s just that it comes roaring back into focus with every period. But the biggest shift has been coming to peace with the idea that I might not have biological kids. And really, when I think about it, if I ever decide I want children in my life, there’s always the option of adoption.
It’s kind of amusing, I was chatting with a good friend who said she was amazed by how strong I’ve been through all this. But to be honest, I don’t see myself as particularly strong – there are so many people out there dealing with the same struggles. It’s just one of those hurdles you encounter on the road of life, and I had to find a way to cope that was healthy for me, to be my own pillar of strength and take care of myself.
Oh, and a little update on the whole diet experiment – I’ve started to let myself enjoy meat and the occasional drink again. It’s not that cutting them out didn’t help, but I’ve come to realize that I should savor life’s pleasures and not let my chronic illness completely steer the way I live.
I really hope that one day, society will put more effort and funding into researching endometriosis. It’s a surprisingly common condition, and it’s absolutely brutal, both physically and mentally. It just saps your energy, and the pain can get so intense over time. Relying on a bunch of hormones to manage the pain just doesn’t sit right with me – I can’t help but feel there’s got to be a better way to deal with it.
It’s hard for me to accept that there’s no real solution out there yet. I truly hope that anyone dealing with endometriosis and adenomyosis finds the strength to live life to the fullest, to not let this illness stop you from having adventures or chasing your dreams. If my story can bring even a little comfort or inspire just one person to open up about their own experiences, then sharing it will have been worth it.
matcha latte on a rainy night 