Trigger Warning – Mention of Pregnancy
Full Show Notes
I didn’t realize when I started writing this episode that I would have to trigger myself three different ways to get the whole story out.
Because surviving my uterus meant many terrifying nights in the hospital. From the way I found out I had endometriosis, to a scary surprise pregnancy with complications, and a total hysterectomy in the middle of a pandemic.
Surviving your uterus looks different for everyone.
For me, it meant digging that thing out and tossing it in the trash. (Which is medically known as a total hysterectomy.)
Hey I’m Natasha and my uterus tried to kill me so I decided to kill it first. Now I’m sharing my experience to help other people learn how to survive their uterus.
Now before you come at me, I’m not advocating that everyone go out and get a total hysterectomy.
There are plenty of ways to survive the myriad of issues that being born with a uterus entails that don’t have to end with ripping the thing out and dancing on its metaphorical grave.
There are just as many reasons to have one as well, from chronic illness to cancer risk to life-affirming salvation.
For me the decision was simple.
I had endometriosis, which causes painful lesions made up of the same cells that your uterus sheds every month to grow outside of the uterus.
I was in constant, debilitating pain in between periods and I was bedridden for 5 days a month, every month.
But I didn’t always have a name for the pain that had chased me through the years.
The Endometriosis Diagnosis
First, let’s go back to 2016.
I was laying on the couch with my heating pad, as one does when they try to pretend that much pain is normal.
I turned over and felt like I had been stabbed in the stomach.
I couldn’t move.
I couldn’t speak in full sentences to explain what had happened.
That it felt like a laser beam was carving a hole in my abdomen.
Or like being stabbed by a white hot knitting needle that stayed in and stayed hot.
All I knew was that
I knew I had to get to the hospital.
My best friend and future husband got me to the local ER, but we’re in a tiny community so they sent me off to a larger hospital about an hour away. I didn’t have any insurance at the time, so I declined the expensive ambulance ride and felt every imperfection in our worn Missouri roads on the longest ride of my life.
A few months prior, I had lost two friends within two weeks of each other to cancer.
And I hadn’t been to the doctor in years, even though I knew I was at high risk for cervical cancer thanks to HPV.
I was a single mom struggling to launch a web design business and moonlighting at McDonalds.
I would have gone to the doctor if I could’ve afforded it.
At that point, I was certain that they were going to run their tests and that I was going to die.
Because I truly felt like I was dying.
When I got to the bigger hospital, I went through round 2 of explaining that my entire left side felt like it was being eaten alive.
I even couldn’t pinpoint the pain. It all hurt.
My vague answers weren’t helping anyone, but I was in tears and in the fetal position and I couldn’t even begin to determine where the pain was coming from.
To make sure I wasn’t a drug seeker with a flair for the dramatic, they decided to keep me overnight and run tests.
So I spent one very scary, very painful night in the hospital.
At this point, I’ve forgotten most of this traumatic night.
All of my memories of it have a blurry film of fear over it. My brain trying to save me from the trauma no doubt.
They took scans and ultrasounds, but no one could or would tell me anything.
The next morning they took me to surgery.
I made it through recovery and finally the doctor came in to tell me what was happening inside my body.
Stage 4 Endometriosis.
I had never even heard of it.
The doctor explained that my left ovary had folded over on itself from the weight of one of the lesions, like a flower drooping after its stalk is snapped.
They had excised the endometrial tissue and left my ovary.
Even then I knew that was a mistake.
I didn’t understand why they didn’t take the poor battered thing out while they were in there.
An archaic decision about my worth as a person was made in that surgical suite and it was made in favor of future occupants of my womb and not the my quality of my life.
A year later, I followed up with the doctor recommended by the one who performed that first surgery and unbelievably was met with more disbelief and annoyance from the medical team there.
I had the diagnosis, but even with it they still didn’t believe me or believe that I was in the pain I told them I was in.
So what exactly is endometriosis?
It’s when tissue that is similar to the tissue that makes up the lining of your uterus – the endometrium – is found outside of the uterus. It commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis and occasionally finds it’s way even further to affect your bowels, urinary tract, lungs, and other organs.
It forms a fibrous tissue that glues your organs together and causes symptoms like
- Painful periods
- Painful sex
- Painful poops
- Bladder spasms
- Headache
- Backache
- Nausea
- Fatigue
- Swelling
Endometriosis affects at least 1 in 10 people with a uterus, and the total number of people with endo is more than the entire population of Russia.
Having a better idea of what my endometriosis diagnosis meant, and knowing I had been treated so poorly by the people at the University hospital, I decided to go back and see the doctor who had treated me during my first pregnancy and delivered my daughter more than a decade earlier .
He was also the doctor who performed my mom’s hysterectomy, so there was a lot of history with him and his office.
It was another long trek, this time in the opposite direction, but it was worth it.
He’s an expert in endometriosis, and I never once felt like I had to convince him that I was as sick as I felt.
He knew.
He got me in for another round of lesion removal and a prescription for birth control to try to keep the endo at bay.
A Complicated Pregnancy
I’ve never been great at taking birth control, and I was fairly certain that my womb was a desert ravaged by endo so something completely predictable happened –
I got pregnant.
The second surprise pregnancy of my life but at least I wasn’t going to be alone for this one.
I made the choice to keep that pregnancy for the same reason that I decided to keep my first child.
Because it was the right choice for me.
A choice that is not right for everyone.
A choice that should not be made in a court room or political stage.
A choice that should be made by one person and anyone they decide to include.
Even at its best, pregnancy literally sucks the life out of you to funnel into the creation of a future human being.
At its worst, it’s deadly.
At 19, I had a fairly peachy pregnancy. Back then the drama revolved around the deadbeat I was fucking around with rather than health issues.
This time, at 32?
High blood pressure out of nowhere almost immediately and then at the 20 week mark it was officially preeclampsia.
Pre-eclampsia is a rare disorder that usually begins after 20 weeks of pregnancy in someone whose blood pressure had been normal. It can lead to serious, even fatal, complications.
Multiple hospital stays and a very hot third trimester in the dead of summer later and I had a 7 pound miracle baby who came exactly 4 weeks early.
The Hysterectomy
I knew this was was the last pregnancy that my body could handle, so the plan was to tie my tubes (otherwise known as a tubal ligation) and try controlling the endo with an IUD.
At this point I was considering a hysterectomy, but I was scared of the implications.
Hysterectomies come with their own risks, including osteoporosis and even a shortened lifespan.
I’d had some issues with insurance covering the IUD which, and it didn’t take long for the endo to come back in full force.
By the time I knew I wanted to be done with the pain once and for all, risks be damned, it was February of 2020.
And there were rumblings of something big on the horizon.
We didn’t know it, but everybody’s life was about to shatter.
And I was about to go into surgical menopause.
I actually had to write this next part of the episode separately because I couldn’t process the different traumas on the same day.
I thought it was important to point that out just to really illustrate that none of this shit is easy.
The shit we go through as women isn’t fair and now we don’t even have the right to the medical freedom required to make some of the decisions we have to make.
But back to the point.
I decided to have a total hysterectomy.
This is where they remove the uterus, fallopian tubes, and ovaries.
Estrogen is like gas on a fire for endo and a lot of women’s health issues so it was imperative that I remove the source.
This also meant I couldn’t take any form of hormone replacement therapy either.
Rapid, surgical menopause would start the moment the doctors removed the organ system.
By now the pandemic was here and no one knew what the fuck to do.
I had a final consultation with my trusted gyno and made the appointment for a total hysterectomy.
I couldn’t wait.
The prospect of being pain free, of not having to stress about rearranging my life around my period, of being able to be present for my kids, made the wait easier.
I don’t even remember how long I had to wait between deciding to do it and being wheeled into the surgical suite.
But suddenly it was here.
It was time.
My husband Nick and I got up early to arrive with hours to spare, as requested.
I don’t know if we had to come so early because of standard procedure or if it was a new protocol because of the pandemic.
I had to leave Nick in the waiting room from the beginning.
The entire wing was almost completely shut down due to COVID.
Furniture was covered and it was dark except for one overhead panel.
Creepy af.
The nurse came and called my name, and I held Nick so tightly I couldn’t breathe.
I didn’t want to have yet another surgery.
I was tired of feeling the pre surgical jitters.
Am I going to feel it
Is the sedative going to work
What if I die
So I held my husband for a moment.
And I walked away.
The next time he would see me i would be in recovery and my reproductive system would be in the incinerator.
But not before I had to wait for hours to even get started.
I was in a prep room of some sort, and there were 3 others there for the same procedure.
My gynecologist had traveled from the city I normally see him, to another small city in Missouri because there is a shortage of capable doctors in the greater Midwestern area, so many healthcare professionals have to pull double and triple travel duty just to see everyone who needs their help.
Which meant this hospital now had more than a couple gynecologists.
And today was hysterectomy day.
Hysterectomies are almost always robotic these days.
Which meant it was very similar to the laparoscopy surgeries I had already had done to excise the endo lesions.
First they filled my abdominal cavity with CO2 to expand my belly and give themselves plenty of room to see
They made three small incisions in (seemingly) random spots on my abdomen, and in my belly button.
Then they sliced and diced that sucker up and pulled all the pieces out through one of the holes in my tummy.
And just like that, my brutal uterus was dead and gone.
Halle-fucking-lujah
I woke up in recovery
And much to my surprise I felt empty inside.
Like I suddenly innately understood why it was called a sex drive, because I was no longer driven by a biological imperative to reproduce.
I’m still not sure how much of that feeling was instinctual and how much of it was a placebo effect – by that I just mean that I knew it was gone so it FELT like it was gone.
I wasn’t empty in the sense that I felt I had made the wrong decision or that I was missing some vital element to the human experience.
It wasn’t like that at all.
It was the mental and physical sensation of knowing an entire organ system was gone, and that was a literal empty feeling.
One that I still celebrate.
But empty nonetheless.
Don’t get me wrong, I still love sex but it’s different now.
I love it because I love him and the connection it provides.
But If something were to happen, to him or our relationship and I found myself alone again however, I don’t foresee myself having any drive to change that.
As an introvert, I would likely just stay single.
Happily Lean into spinsterhood.
And have no regrets.
Because I have been pain free since June 2020.
And that is worth a great many things.
Because I was utterly diasabled.
I couldn’t walk for more than a few minutes at a time.
I was 100lbs overweight.
I was depressed.
And scared.
And completely missing out on my kids.
I call them Kiddo and the Bubs.
Kiddo is my firstborn, I had them when I was 19 and for better or worse, we grew up together. I missed a lot of her events, band, choir, softball. Between pain and an erratic schedule at McDonald’s while I was trying to build a branding and web design business.
After my scary pregnancy with little bubba I was distraught at the idea of missing out on his life like I had with Kiddo.
Being there, and being present are too vastly different things.
The Right Choices for Me
And that’s why I decided to have a total hysterectomy at age 34.
A hard decision that I knew was not even a guaranteed cure.
Because endometriosis is a full body disease.
But estrogen pours gas on the wildfire that rages in an endo ravaged body.
Cutting the gas supply was worth the risk of it not working at all.
Which says a lot about the desperation you feel when you’re in chronic pain.
You’ll do anything to Make. It. Stop.
I ripped out an entire organ system on the off chance that I could experience a life that didn’t include feeling like my insides were being ran through a grinder.
It worked for me.
Would it work for you?
Would it be worth it to you?
Got a Brutal Uterus Story to Share?
So that’s my brutal uterus story. If you have one you’d like to share I’d love to have you on the show. Go to brutaluterus.com/guests and tell me a little about your story.
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