Adenomyosis And Endometriosis: My Shocking Story 20 years of pain
My Adenomyosis and Endometriosis Story, the pain I ignored over twenty years, until my body finally made the decision for me.
A quick note before you read on:
I am not a doctor, and this post is simply my own experience, not a medical advice. If anything here feels familiar, please see a doctor or a specialist for a proper diagnosis and care.
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I started getting pain the moment I got my first period. I was a teenager in the nineties, and back then the answer was always the same, that’s just how periods are, it’ll pass in five days or less. So that’s what I believed. I carried on. I got married, I had my child, and through all of it the pain never really left. I just got better at pushing through it, because that felt like the only option I had.
By 2019 and into 2020, the pain had stopped being something I could quietly push through. It was making me miss work. It was taking whole days away from me before they’d even started. A doctor told me it was Adenomyosis, and I remember feeling almost relieved, at least now it had a name, even though the name didn’t actually change how I felt.
Somewhere in the middle of all this, I started learning things about my own body that I wish someone had told me twenty years earlier.
Period pain is common, most of us grow up hearing that cramps are just part of having a uterus. And some pain is normal. But there’s a difference between pain you can manage with a hot water bottle and get on with your day, and pain that takes your day away from you completely, that makes you cancel plans, miss work, or disappear into bed just to get through it. That second kind isn’t something you’re supposed to just live with. That second kind is your body trying to tell you something.
What is Adenomyosis and Endometriosis
Endometriosis is when tissue similar to the lining of the uterus starts growing outside of it, on the ovaries, the fallopian tubes, sometimes further. Every month, that tissue responds to your hormones the same way your uterine lining does, it thickens, it breaks down, it bleeds, except it has nowhere to go. That’s what causes the inflammation and the pain.
Adenomyosis is different, though the two often show up together, the way they did for me. With adenomyosis, that same kind of tissue grows into the muscular wall of the uterus itself. The uterus becomes thicker, heavier, more tender, and periods often become much heavier and more painful than before. It doesn’t usually show up on a standard exam either, it takes an ultrasound or an MRI to actually see it, which is part of why it goes undiagnosed in so many of us for so long.
I carried both of these for years without knowing their names. I just knew the pain, and I knew how to live around it.
In 2022 I moved to Portugal, and I brought the pain with me. I told myself I’d figure it out eventually, but I didn’t research it properly, I didn’t push for answers, I just lived alongside it. It kept getting worse. At one point I quit my job entirely, just to rest, thinking maybe rest was the missing piece. It wasn’t.
I took another job after that, shift work this time, and there were days I would come home partway through my shift because my body simply wouldn’t let me stay. Some months I couldn’t report to work for a week, sometimes closer to two. Five months into my probation, they let me go. Nothing else about the job was wrong. It was just that I hadn’t been able to show up, again and again, and eventually that was the end of it.
That was the moment I told myself, enough is enough, I need to actually take care of my health. Looking back, I think my body made that decision for me, because I’m not sure I would have made it on my own.
I went to a doctor in Portugal, who said I needed an ultrasound. The appointment was three months out. Three months, while the pain kept climbing. So I made the decision to go back to India, to Pune, where I knew I could be seen quickly.
That’s when I got the official diagnosis, adenomyosis, alongside endometriosis and she recommended a Hysterectomy
The doctor there ran an MRI and an ultrasound, and that’s when I finally had real answers. Adenomyosis, and Endometriosis alongside it. She recommended a hysterectomy, and honestly, I made peace with that part fairly quickly. What I wasn’t at peace with was losing both ovaries, because my right one was completely healthy. So I sought a second opinion, and found a doctor who told me we could remove the damaged ovary along with the uterus, and leave the healthy one in place, and that I’d be able to manage well with just the one.
So that’s where I am right now. Waiting for a surgery date. And for the first time in a long time, waiting for something that actually feels like an answer, instead of just one more thing to get through.
If you’re reading this and some part of it sounds familiar, I want to say something to you directly. Maybe you’re a mother getting everyone else fed and out the door before you’ve even acknowledged your own pain. Maybe you’re working full time, holding down a household, looking after aging parents, and somewhere in the middle of all of that, you’ve quietly decided your own pain isn’t the priority right now. I know how that goes. I lived it for over twenty years.
And I know it isn’t simple. Deciding to have a hysterectomy is not a small thing, and for a lot of women, it isn’t even an option that’s available to them, whether that’s access to a doctor who takes the pain seriously, the right scans, the right diagnosis, or the right care at all. Some women are living with exactly what I had for years and don’t even know what to call it yet. If that’s you, I’m not going to pretend I know exactly what you’re carrying. But I do know what it’s like to be told for two decades that this is just how periods are, and I know what it costs to believe that for too long.
So if you’ve been living with pain that takes over your days, pain that makes you cancel things, miss work, disappear into yourself just to get through it, please don’t wait as long as I did. See a doctor. Ask for the scan. Push for the answer, even if it takes a second opinion, even if the wait feels endless. You deserve to know what’s happening in your own body, and you deserve to make a real decision about it, instead of just enduring it.
I’ll be sharing more of this journey, including the surgery itself, on my YouTube channel, if you want to follow along. However this finds you today, whatever you’re carrying alongside your own pain, I hope you read this and felt something shift, even slightly, toward taking your own pain seriously.
What I am packing for surgery.
Electric Heating Pad for Back Neck Shoulders, Heat Pad
If this is your first time here, you can read more about me on the About Me Page
Take care of yourself!
mysilverbliss
#adenomyosis #endometriosis #periodpain #hysterectomy #chronicillness #fibroids