My Journey to Having a Hysterectomy

From the time that my cycle began at the age of 13 I felt at odds with my Uterus.

So much so that my father created a shirt for me in college that said, “My Uterus Is My Enemy” with a stylized organ that, if I remember correctly, bore a likeness to Freddy Krueger. Time has softened a lot of my younger self’s angst against my reproductive organs, or I grew tougher. More likely I grew more distracted. Discomfort is quid pro quo during a woman’s cycle. Shooting pains and crippling cramps are par for the course, ne pas?

Then all of my ire turned to awe and joy as my Uterus shed her mantle of evil for a brief moment, a week and a half to be exact, so that I could conceive my first child. Neither I nor my husband expected I would conceive so quickly; however, I was not one to look a gift horse in the mouth. I was overjoyed. My Uterus behaved for 39 weeks and 6 days, nestling my precious first born with nary a complication. My first child emerged into this world via an au naturale birth and my life was forever changed. I stuffed an IUD into my Uterus as soon as I could and thus my reproductive organs behaved a bit for a few years. Those pains and cramps persisted but again . . . quid pro quo?

Let me cut in here for a moment to say that yes, I did speak with my gynecologists over the years about the sharp pains and cramping that occurred outside of my cycle. I spoke with them about the crippling, vomit inducing cramping and heavy bleeding while I was in my cycle. Solutions ranged from changing birth control to suggesting a heating pad. So, after a while, I grew silent. If I had to sneeze I knew sometimes I would be doubled over with a sharp searing pain on the left side of my abdomen. It had always been that way. If I rose too quickly off the couch, sometimes I would be rewarded with twin pains just inside my hip bones. But it all passed. I figured it was somewhat normal. I mean, who the hell knew what went on in there anyway? I’d never had an abnormal pap smear and later when my world went pear shaped biopsies also revealed I was “healthy.” So why worry?

Cue second child. Again, my Uterus ceased her raging for one precious moment and I conceived my second child within a month of yanking the IUD. I was truly blessed. Two pregnancies, two babies, a gift rarer than the world would think. This lil’ rascal was a stubborn one. Breech from the word, “Go” he defied all attempts to turn him and nestled down with alacrity into my pelvis. The feeling of two of my beloved obstetricians trying to wrestle him from my pelvis as my body jerked and weaved and I gritted and resisted the urge to scream during a failed ECV will forever live with me. My second beloved arrived via c-section one week before his due date.

I sloughed my anger, frustration and feelings of failure that I had acquiesced to a medical birth, because he was here and safe and that was what mattered above all else.

Due to the medical interventions needed to harbor my second (and last) child safely into the world, I opted for a tubal ligation while they were inside of me rummaging around. Age, finances, my marriage and yes, my health all played into that decision. My heart burned and twisted with the knowledge that my Uterus would only bear two precious children. Oh, but what gifts they were. The first things in my life that came easily to me, I am breathless with thanks to my Uterus.

Cue second scene.

My Uterus is done with her duties. Now she dons her mantle once again and becomes . . . my enemy.

Following my youngest child’s birth I didn’t experience excessive post-partum bleeding. But due to the tubal ligation, I also didn’t opt for any hormonal birth control. As the tubal holds the same percentage of efficacy as an IUD I didn’t worry. (And don’t you worry either – the tubal was a success.) However, it soon became clear that something was not okay inside of me.

I suppose I should disclose that I do have other health issues, removed from my Uterus. I have chronic Epstein – Barr virus, an incredibly common virus that affects over 70% of the population and causes the mononucleosis virus. However, what is not common is the chronic state of it. EBV titers will forever show positive for me (it seems,) and symptoms range from internal pain, crushing fatigue, mental fogginess to suppressed immune responses. Fun times, eh? But it was part of who I was, even prior to meeting my husband so I often forget about it. After my two babies, the fatigue got nearly unbearable. I was so exhausted I was in agony. So, let’s tack on some Chronic Fatigue Syndrome, Fibromyalgia and Adrenal Fatigue to the mix. I can be flippant but these were not assigned without care. Still, I figured, “Oh well, call it what you will, this is my life and this is how I feel.” You could have diagnosed me with Rainbow Ginko Fart disease (not real) and I wouldn’t have cared. The reality was that this was how I felt and diagnoses only gave me tools to persevere. I had two precious babies that needed their momma functioning, so I did. I functioned. I hurt, but I functioned. Meanwhile, guess what?

Oh yesssss, dear Uterus you were just bleeding. And bleeding, and bleeding.

Why? Oh, who knows? I was anemic from bleeding, bleeding because my adrenals were stealing from my estrogen to fuel my adrenaline thus leading to severe hormonal imbalance, tired from the anemia and the adrenal fatigue and oh . . . you get the picture.

A visit to my gynecologist led us to insert another IUD. I needed the hormonal support but darned if I was to remember taking a frickin’ pill every day at the same time. I kept my head above water but continued to breakthrough bleed or just flat out bleed with no rhyme or reason. It was *ahem* killing my sex life. And not to get too personal . . . wait . . . oh, heck I’ll just say it. Sex hurt, too. I know! Nail in the coffin here folks.

Now, let me say that as a mother, the thought of another baby never really goes away. Even those of us who are flat-footed, arms akimbo sure as fire they are DONE with child bearing find themselves wondering in a soft and secret manner. What if? What if we won the lottery? What if someone needed a surrogate? What if?

So here is where the expectation vs reality comes in (you were wondering, weren’t you.) Hysterectomy, the eternal punch line. I hate my Uterus? Yank her! I don’t need her!

I’m done with babies, good bye sweet Cradle o’ mine. Or my absolutely “favorite” line (yes, read that with sarcasm,) “Take the playpen but leave the playground.” I would flippantly joke with my friends about having a hysterectomy. I had for years. But sitting in an office with your gynecologist and hearing HER say it, well, that is a completely different universe folks.

Also, there is one other little thing. Due to the position of my second precious rascal in utero, I was experiencing an astounding amount of POP. Pelvic Organ Prolapse. Dude, you have no idea how fun it was . . . (just kidding – don’t google – trust me it sucks.) I was quite literally falling apart.

My Book of Life has many chapters. Some I close and lock for good and some I dog-ear. But my relationship with my Uterus was one that was swiftly coming to a close and I was panicking slightly. Not because I enjoyed bleeding for nearly three years straight and not because I enjoyed being in pain, but because I felt out of control. Let me assure you that I’ve swallowed enough cramp bark and shepherd’s purse and tried all sorts of other things to wrangle her savage heart, but my Uterus would not be tamed.

Decision time. And true to form, my biggest concern was recovery. I ran a household and had two small rascals. I Googled and read and let the tears course down my face unchecked. Reality sucked. Losing my Uterus was NOT a flippant thing and I was internally disgusted I had joked about it in such a casual manner. Defense mechanism? Maybe. Social dance? Definitely. When another mother asks you how you feel, you can sometimes feed her a bit of the truth. When a good momma friend asks you how you feel, you tell her the truth. And then you watch as her eyes open wide in horror, sympathy oozing from her like a slow moving fog, and you backpedal and diffuse with humor. You just do, it is part of the social dance.

I underwent a brief stint with no hormones after yanking the IUD for the last time; it had done a fair job but in the end I grade it C- for keeping the bleeding in check. I dabbled for one week with oral birth control which led me to CrazyTown. I took myself off oral birth control 7 days in when I realized I was close to homicidal/suicidal/freak-out-a-cidal? At that point my back was against a wall. Years of bleeding postpartum, prolapse severe enough to interfere with my quality of life . . . and no answers. Rest assured, dear readers, I did receive answers.

But I had to get to the Other Side for that.

I will spare you the details of dealing with the procedures at the Continence center and grading my prolapse, let me say that I wish none of you ever have to deal with it. Although, a great shout out to my pelvic floor physical therapist – a much more amazing experience than I had ever imagined. So, I sat, speaking with the specialist. My own personal “I will fix you” doctor. I said, “I’m ready.” She said, “Awesome, let’s rock this.” Okay . . . she didn’t but I imagined she did. The surgery scheduler gave me a date and it was two WEEKS from that day. Two. Weeks. My mind flipped, flopped, twitched and stopped. My rascals were running free but gearing up for camp, blessedly starting in two weeks. I had just started a job that I absolutely loved, but had wisely told them when I was hired that I *might* have surgery *someday.*

Imagine two weeks of scrambling, calling in my reinforcements in the form of my Mother (who never stops and is amazing) and then I fell apart. I shut down. I sat at my computer for hours on end just stared. I apologized, I cried. I even snuck in a quick trip to Montreal with my husband to celebrate our 10 year anniversary. So we could be intimate before the “Event.” But I was just rewarded with some of the heaviest bleeding and debilitating cramps that I’d had in a while. Did my Uterus know? Was she getting in one last hurrah? It sure felt like it.

One of my most effective coping mechanisms has always been the knowledge that THIS cannot last forever. I will not feel THIS way forever. There will come a time that I will be on the other side of THIS. I know this to be true because I’ve employed this method for decades. Waiting is always the worst. Just do it already.

So I did. I got scooped and tucked and repaired and voila. New me. Oh dear, did I make that sound easy? It absolutely, emphatically, was NOT easy. Far from it, but I did get answers.

I got two big answers. Neither of whom were scary in a “You have a sneaky cancer” way that I fretted about in those hours when the night holds its breath. But cold, clinical, exact answers.

I had adenomyosis. In simple terms, I had a boggy uterus. It is an imbalance of glandular to muscular cells that make up the walls of my uterus. It was triggered after the birth of my second child. It led to eternal bleeding and overall heaviness of my uterus. Goodbye Bog of Eternal Bleeding, may you rest peacefully in a hazardous waste bag somewhere. Maybe you deserved a better send off for your service in providing Life but I will not be one to look back with regrets.

I also have endometriosis. Are you surprised? I was. I was extremely surprised. It was tucked up on the top of my uterus, ninja style. Endometrial cells had sprinkled about inside my abdomen, reacting to the bat signal of hormones my healthy ovaries had shone during my cycles. Causing pain, sharp and dull, all of which I attributed to being a woman. My dealings with endometriosis had been through friends and reading stories, women in so much pain they couldn’t function, complications from the disease leading to infertility and other horror stories. Surely that wasn’t me? How did this get missed all of those umpteen years I had mentioned pain to my gynecologists? Because it couldn’t have been diagnosed without exploratory surgery, and also because after a while my complaints whispered away and I endured the pain because as a woman, that is what we do, right? I have a very high threshold for pain and I have a strong, “suck it up” will. These were my Achilles Heel. My own stubbornness had masked this sinister situation.

Because of the aforementioned discoveries my “routine” vaginal hysterectomy slotted for a bit over 5 hours in the OR stretched to a staggering almost 12 hours on the table due to complications from the massive amounts of scar tissue inside of me. After my C-section; my body had reacted to the manhandling by exploding with hyper-healing. Adhesions had glued my bladder to my uterus and small bowel and my fallopian tubes were so scarred from the tubal ligation sites that they were probably glad to be removed. I now sport 4 incisions in my abdomen where they had to place a camera port and other laparoscopic doodads to aid in the safe removal of my uterus.

So now I sit, sans Uterus and fallopian tubes, with my healthy ovaries bobbing around, my prolapses fixed for now and those sneaky endometrial cells nestled in my abdomen. But I can tell you this, I am no longer bleeding. I will get better and I don’t regret my decision to have a hysterectomy at 38 years old. It is sobering to think that even if I won the lottery I will no longer be able to carry life. It is devastating to hold a baby and feel an empty ache inside of me. My heart mourns the loss of this magical ability that I had and willingly removed; the ability to create and sustain life.

But my brain assures me in soft, supple, agile fingers that this act, the removal of my Uterus, will eliminate my nemesis and lead me to a fuller quality of life for my babies . . . and myself.

Written by: Jen Caldwell-Jeans

I am a mother, writer, crafter, gamer and lover of nature.  My boys are growing up with a steady diet of love, dirt, frogs, and cat hair.  Just kidding . . . maybe.  I can be bribed to do almost anything in exchange for coffee and chocolate.  I’m much more introverted than people think.  I absolutely love New England but this is the 6th state I’ve lived in since my birth.  Having resided in Vermont for over 2 years now I feel blessed to have so many amenities close at hand while enjoying the peace and quiet of Westford.  The best of both worlds in my book.  I have my own business, am sorely behind on my blog and completed a novel during last year’s NaNoWriMo event.  I’ve been writing for as long as I could hold a crayon. For good or ill, I doubt I will ever stop.  When I’m not writing or gaming, I’m watching cat videos online, chasing one of my rascally boys or digging in my beloved garden.