Yep, you read that right — I chose to get a hysterectomy.
And I am also choosing to tell you about it.
First though, I want to make sure you should be here so let’s start with this …
Cramps. Period. Menstrual pain. Blood. Uterus. Menstruation.
Now let’s pause.
If any of those words made you feel nauseous or uncomfortable with those squiggly-movement-organ feelings inside your body, I want to kindly recommend you to click on our Home page where you will find less-female posts. In fact, visiting Our 1965 Clark Cortez Motorhome Overhaul can surely be the dose of testosterone needed because those writings are as stereotypically un-female as you will get — There’s grease and muscle and an antique classic vehicle with a V8 engine that’s about to receive its biggest upgrade with EFI, and, well, me working on that RV with my manly man-of-a-husband.
Saying that, if you don’t click off this post consider yourself warned …
It’s about to be estrogen-filled in here.
Now, with that out of the way, welcome one, welcome all brave readers!
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Before I write about why I chose to get a hysterectomy, I want to take a moment to be honest with you: It is not an easy to open up on this topic and that is for three main reasons.
First, I’m aware of how my decision comes at a strange time — Personally, my ex-husband and his wife are currently celebrating the birth of their first child. My good friend recently had a miscarriage not once … but twice. Nationally, women across America are screaming to keep hands off their uteruses after the U.S. Supreme Court overturns the Roe versus Wade case.
Then there’s me, choosing to have a hysterectomy so this post does feel awkward — even harsh — to write.
Still, before pregnancies and abortions came into under the microscope, the word “uterus” was not commonly heard in conversations. That means topics on menstrual flows, cramp pains, and hysterectomies were relatively taboo and, therefore, private. I want to contradict this by openly writing about all … on the internet none-the-less. These topics should not be embarrassing, scary, or forbidden. Instead, they should be normalized, so welcome to talks on a monthly event that makes a female a female.
This leads me to my next reason for writing: I want to raise awareness.
I chose to get a hysterectomy based on a serious health problem, and this problem is one that is rarely treated due to either being disregarded or misdiagnosed.
Honestly and truly, if simply one person found this post and it provided hope or knowledge or help — that’s all I need. One person because it has taken me 29 years to figure this out.
So let’s get personal.
Two weeks from today, I chose to have a hysterectomy. A hysterectomy is a major surgery that consists of removing one’s uterus. This means as of right now, I am writing to you with the-most-female organ removed and here’s why …
Back in March, I was diagnosed with a disorder called primary dysmenorrhea. In simplistic terms, dysmenorrhea means menstrual cramps, and there are two types: primary and secondary. I’m going to solely focus on primary. (However, for purposes of bringing awareness, secondary is due to pelvic pathology or a medical condition.) Primary dysmenorrhea causes frequent menstrual pain that — on the smallest scale — can be described as “crippling” due to prostaglandins (or natural chemicals making up the lining of the uterus), which causes the muscles and blood vessels of the uterus to have abnormal contractions. Look at that last word again: Contractions.
This means the uterus is working so hard to pass blood during a period that it actually has contractions equivalent to what is experienced during childbirth.
In primary dysmenorrhea, the crippling pain from contractions starts in childhood either six months to a year before her first period or on her first period … and it continues throughout that female’s life.
Not only this, but the pain gets worse by becoming more intense over time.
For me, I first experienced primary dysmenorrhea nearly 30 years ago in elementary school. At the age of 10 in 1993 — which was before my first period — I would wake in the middle of the night in insufferable pain that would cause me to run to the bathroom to throw up. From there, I would vomit straight for at least eight hours until — out of sheer exhaustion — I would pass out and sleep the rest of the day beside the toilet on the bathroom floor. The next day, I would wake miraculously fine.
Over the years, my mother carted me from doctor to doctor, on the hunt for an elusive and seemingly invisible diagnosis. Our first specialist was a hematologist who wondered if I had a blood disorder. The second was a gastro-intestinal specialist who required weeks of food diaries tracking my every food and drink before determining I had a parasite inside my body. (Imagine how much that scares a young girl.) We then saw a neurologist who diagnosed me with head and abdominal migraines.
And this is what I lived my entire life believing I had — abdominal migraines, pain that mimics severe head migraines but instead reoccurs in the abdomen.
The last specialist I saw was a gynecologist in high school who suggested I go on birth control with the hopes of regulating my period, which in turn would regulate my pain. From there, for thirteen years — eleventh grade to seven years after graduating college — I remained on birth control. During this time, I still had pain monthly that was severe enough to send me to the bathroom, but the pain still remained for only one day.
It was in 2012 that I married my ex-husband and a year later, stopped taking birth control to focus on having children. However, due to being on birth control for over a decade straight, I had to take pills to bring forth menstruation again then pills to ovulate again. In the end, we were never able to have a child, and my monthly pain came back with a vengeance unfelt before.
Coupled with the forced-start of my period, I was also older and this pain becomes more excruciating with age. By now in 2013 to 2022, I was noticing additional symptoms, such as extremely heavy flow — to the point of passing massive blood clots. I remember I passed so much blood — at one time — that I called the hospital to ask if I should go in. “If you bleed through a super heavy pad in an hour and a half,” the person said, “that is considered severe blood loss and you should come to the hospital immediately.” It took me two hours … so I never went.
Along with nearly-severe bleeding, I experienced agonizing contractions for a minimum of one but often two days … still every single month … but now sometimes two separate times a month. By now the intensity of pain had grown so much that I was being rushed to the emergency room. On average, I went to the ER about four times a year simply due to period pain.
It was my second to last ER visit — two days into a vacation away from home with Andy — that I was given my first hint at what may be wrong: My ER doctor asked if I had been diagnosed with endometriosis. Endometriosis is a disease that occurs when tissue — that normally lines the uterus — instead grows outside of the uterus. Because of this, endometriosis causes painful periods “often with symptoms that you are describing to me,” the ER doctor told me. He suggested I follow up with my primary care doctor when I got out of the hospital.
In the meantime though, I had to remain in the hospital for three days and — story short to this involves me being moved from the ER to being admitted to the second floor, where I was misdiagnosed so dramatically that my discharge papers read that I was being treated for acid reflux. This means while in the hospital, for 24-hours a day for three days, I was pumped with incorrect medicines to the point that my health was fading so fast that I remember telling Andy, “I’m going to die here if you do not get me out right now.” In the end, we refused treatment, made false promises of following up on acid reflux, and got the hell out.
Once I was home and able, I did make a follow-up visit to my internist (or physician). “Abdominal migraines are very rare — very rare,” she said. I got the impression that she didn’t believe me before she said in the history of studying and being a part of medicine, she has never known anyone to be diagnosed with abdominal migraines. “That’s not to say you do not have it,” she continued, “but I do wonder if instead you have endometriosis.” From here, I was encouraged to make an appointment with my gynecologist to learn more. “Be sure to get a laparoscopy to scientifically diagnose endometriosis,” she warned, telling me that many gynocologists do not do laparoscopies anymore despite scientific proof still being widely recommended. “Also, be aware, your condition — It possibly may be coinciding with something else involving your period,” my internist said, but again my gynecologist should know more.
I did follow-up too, and here’s where it gets more messy: My gynecologist also agreed it sounded as if I had endometriosis but then she said this: “You can go on birth control, which will decrease your period pain or I can prescribe you an endometriosis medication. If the medication helps, great — We can assume you have endometriosis. If the medication does not help, stop it and we can return to the drawing board. I have a feeling it will help though because — at a minimum — it will reduce your period pains.”
This confused me. I was not about to go onto birth control again — or take any medication — due to essentially masking the symptoms and not solving the problem. I asked further questions, such as “Can a laparoscopy be done to determine if I have endometriosis first?” Here’s where I was told laparoscopies are considered an old operation that are no longer regarded. My gynecologist actually told me my internist probably did not understand this because she did not study the same field. “If you really want a laparoscopy, sure,” she said, “but why go through a laparoscopy when it would more than likely lead to an endometriosis diagnosis, which would lead to medication? Why not just jump straight to medication?”
This frustrated me and caused me to take months to determine what to do.
Meanwhile, I landed in the ER again. In those months it took to get here, I had started to go back to my old way of thinking: Most females suffer from period pains. Was my pain tolerance lower or did I have worse pain? This question stayed with me and ultimately made me realize there was something distinctly different about my cycle. It was then I was reminded that I had a serious problem that needed to be solved before I continued on this ER-cycle.
When I returned home, I saw a post online from a friend. She was in a hospital gown and had just come from surgery. “This isn’t the typical pretty IG photo, but endometriosis is not a pretty disease,” she wrote. “Had a four-hour excision surgery yesterday with a highly trained surgeon who specializes in treatment of endometriosis and pelvic pain.” I keep reading — She wrote about gratitude for finding this incredible surgeon but also anger and grief over being disregarded by other medical professionals who “trivialized my pain and told me ‘that’s normal.'” She continued saying she learned endometriosis is “unbelievably common in the female population” but still takes several years to be diagnosed.
It felt more than coincidental so I messaged her, and a couple weeks later I had scheduled a virtual appointment with the same surgeon who also specializes in removing endometriosis. Despite my friend’s positive recommendation though, I was still leery so I prepared for the meeting by writing a list of notes — the same health notes I have typed above — to reduce the risk of being disregarded or misdiagnosed.
Instead, after sitting calmly and listening to all I wanted to say, the doctor responded simply: “I believe you.” He then clarified by apologizing for being a male because it meant he could not truly understanding my pain but he could imagine it and that’s when he said, “And I can help you.” It was emotional to say the least.
“I do suspect you have endometriosis,” he continued, “but I also suspect you have severe primary dysmenorrhea.”
Severe primary dysmenorrhea. It had been a lifetime-hunt for this one answer.
One week later, I had an in-person appointment for an ultrasound.
My ultrasound though did not show signs of any problems relating to my uterus, ovaries, or rectum, such as nodules, cysts, or tumors. Along with this though, my ultrasound did not show signs of endometriosis, which he warned was not surprising because endometriosis cannot be found in 20% of ultrasounds.
“Can I say that you have endometriosis? No,” he told me after the ultrasound. “Your history and story strongly support that and so I still have a high suspicion, but I do not see signs of a severe disease.”
This lead us to discussing medication options, starting with the least invasion, which is least risky:
- Option One: Taking oral pain and nausea medications before and during each cycle.
- Option Two: Taking oral progesterone, which will regulate menstrual cycles and, therefore, reduce pain by increasing estrogen in the body.
- Option Three: Inserting an IUD, which reportedly stops bleeding entirely in 40% of patients and that equates to less pain.
All three of these options equated to a ‘wait it out until menopause’ stance.
In each, the words “reduce” and “less” were used to describe pain. However, I wanted to know how to we avoid pain entirely.
“Will my pain disappear when I hit menopause?” I asked.
Here I learned 95% of the time, it does; however, the average age a female hits menopause is 51 to 52 … which is 13 years away.
“Nearly ten years does not seem like a long time to me,” I confessed to Andy and my doctor, “when I’ve come from nearly 30 years of dealing with this.”
“That’s still potentially 156 periods,” Andy said, and I could tell that he was shocked to learn I was even considering this.
“There is no right answer,” my doctor said. “You suffered for nearly 30 years, and no one gave you options previously. It is getting worse and that’s another factor.
“We have the potential to end that suffering.”
An end to suffering … In truth, even as I write this now post-surgery I still cannot image a life such as this.
Our next options moved to more invasive, which is more risky:
- Option Four: Have a laparoscopy — organ-preserving — and if endometriosis is found, treat the disease by using a laser-cutting tool to remove endometriosis. This is one way my surgeon was different than others — He looks at endometriosis as a cancer that should be cut out versus burned off due to there being a dramatically high chance that the endometriosis will return if burned. In all, this type of laparoscopy is a two-hour operation.
Yet, I could go through this surgery and wake up only to find myself in the same monthly-pain. “I want to figure out what is causing the pain. If it’s not endometriosis, I would be glad I do not have it, but that is also frustrating, too.
“Removing the uterus would remove the source of pain,” my doctor told me.
That lead us to the last option, which is the most invasion and, therefore, most risky:
- Option Five: Have a laparoscopy, treating endometriosis if found, and a hysterectomy. This is a five-hour operation.
“Do you feel it too extreme to jump straight to the hysterectomy?” I asked.
“I don’t,” he said without a second of hesitation. “Every month you are going to have pain, and it could leave you in the ER. That’s a pretty terrible way to live so whatever we can do to prevent that — whatever it is — and keep you out of the ER, that is reasonable. I think that you are not having kids. You are 39 — You’ve been suffering for nearly 30 years and, while it may be endometriosis, it may only be severe primary dysmenorrhea. A hysterectomy is reasonable for that, but there are alternatives — I would support what you want.”
In the end, I decided to remove my uterus entirely. The final push for me to make this move was in realizing my goals: I want to live a life of travel. For the past nearly 30 years, I have had to be keenly aware of where hospitals were at all times; and with Andy’s and my plan to travel full-time in our 1965 Clark Cortez motorhome, maintaining that close proximity would simply not be possible. The more I thought about missing travel opportunities, the more I looked at all I had already missed in my past. I was tired of rescheduling and cancelling travel trips to instead lie on the bathroom floor or be admitted to an emergency room again. I did not want to miss any more family gatherings. I had built up such fear and anxiety that I would suffer an attack at work that I was now calling out multiple days at a time. I was tired of people telling me how lucky I was to be skinny when that meant my body was ill and forcing me to vomit each and every month. Essentially, I did not want more bandaids in the form of pills to take every day for the next many years.
I wanted a cure — a final magic end-all cure.
As I prepared for my surgery, I began to find other benefits: With an estimate of $35.00 a month in feminine products and pain medications, the amount of money on average that we would save would be $420.00 a year. Removing my uterus also meant there was zero chance of pregnancy, which was beneficial in two ways: We could pocket additional cash instead of paying for contraceptives. The most important one though involved other aspects of my health: Due to having multiple sclerosis and taking the disease-modifying treatment Ocrevus, pregnancy is warned against due to studies showing a high rate of miscarriages, pre-term births, stillbirths, and birth defects. Andy and I could now eliminate that risk entirely.
That surgery was two weeks ago today, and it meant signing off for a long list of procedures: a total laparoscopic hysterectomy, cystoscopy (looking inside the bladder with a camera, which is standard for this surgery), bilateral salpingectomy (removing both fallopian tubes), laparoscopy with excision of endometriosis, and a possible appendectomy (removing the appendix due to it being the most common organ endometriosis is found on).
NOTE: The bilateral salpingectomy does not affect ovarian function. If leaving the fallopian tubes, there is a 50% chance of developing cancer; however, if the fallopian tubes are removed, that risk drops dramatically to one to one a half percent.
As it turned out, no trace of endometriosis was found, which lead my doctor to feel confident that my pain was solely from severe primary dysmenorrhea so — despite having a normal-looking uterus — I am grateful it was removed. Along with this, my surgeon also found and removed a cyst, which was sent away to be biopsied.
Today, I’m still recovering. There was a minor complication during my surgery, which required inserting a stent but that will hopefully be removed today for my last surgery pain-free experience. Beyond that, I am reminded of how remarkable the human body is — My three incisions have nearly all healed. That means from here on out, I will hopefully figure out that a fabled pain-free life is not so imaginary … and to celebrate that, I totally plan to throw a Farewell to My Uterus party at the precise time at the end of the month time that, well, my uterus would have wanted to prove its existence.
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For those suspecting they have endometriosis: Visit Nancy’s Nook. This is a Facebook educational page run by a nurse named Nancy. There, you will find research and data on the endometriosis and many endometriosis resources, such as credible links on endometriosis and a list of vetted doctors who specialize in endometriosis.
A thank you to the following people:
To my mother, thank you for so diligently tracking my health journey since childhood and continuing to take me to specialist after specialist. Our fight is finally over.
To my sister, in seriousness: Thank you for taking me to the hospital on such short notice. In jest: I’m sorry you had to trip over me sleeping by the toilet growing up when you went to the bathroom.
To friend with the same name as me, thank you for sharing your story and allowing me to open up about mine. You are the reason I can finally say I have my cure.
To Katelyn, thank you for the thoughtful flowers even in the midst of all you are going through. Your big heart continues to amaze me.
To my husband, friends and family that helped me by taking me to the ER, came over to care for my puppy Paris when I was lying on the bathroom unable to care for her, and checking on me after my surgery, thank you for showing patience and care. You remained by my side, and I’m so grateful.