Exile From Hysteria

When a hysterectomy is not the ending, but a beginning.

Category: Babies

Post-op blues

I’m entering week five of recovery feeling a bit beat up.

The high-energy enthusiasm that carried me much of my journey (both pre- and post-op) has abandoned me.

I’ve been fighting some form of depression that has left me uninspired and mentally exhausted. And the pain in my lower right back has returned, with gusto.

Overall I have made great strides. My abdominal incision from the hysterectomy has closed beautifully, and I’ve built up my strength to the point I’m now able to walk respectable distances.

Still, something feels out of whack.

It could be as simple as missing my morning lithium dose a couple times last week. It could be that my constant companion/boyfriend has returned to work. It could be that all my lady parts are missing.

I made an appointment to see my psychiatrist next week, so I’ll let him chime in on the situation.

It appears I have a case of the post-op blues. This has to be common. So much change. Such a huge buildup. Then nothing.

Literally.

I struggle with the fact the date came and went for my scheduled period.

My heart races when I watch a storyline about a woman getting pregnant, then it plummets to my stomach when I realize I’ll never feel a baby inside me.

The sadness at times is intense, and haunting.

I get nervous about any emotional changes because I am bipolar. I have known about this diagnosis since I was 26, and work very hard to keep my emotions in check. I like to brag that my psychiatrist calls me “highly functional.” So anytime things feel askew, my anxiety level rises a bit.

As easily as these emotions wash over me, I know they will fade. I’ve got to give myself some time. And no matter what, I need to keep moving.

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Beyonce, and the meaning of motherhood

Beyonce unveils her baby bump.

Beyonce unveils her baby bump.

I really wanted to like Beyonce’s docu-performance “Life is But a Dream.”

My girl crush was unveiled Superbowl day when I spontaneously started snapping and bobbing my head in time with Beyonce as she belted out “Independent Woman (Part 1)” and “Single Ladies.” Matt marveled.

“I didn’t even know you were a fan,” he later whispered in my ear.

Between the Superbowl and Beyonce-gate (her dynamic lipsyncing of the National Anthem at President Obama’s Inauguration), I was smitten. I shared my excitement with an intern at work. She pulled me close.

“Did you see her documentary?” the intern asked. “It debuted last night on HBO.”

I decided right there I would save it for post-hysterectomy viewing. Later that night, I set the DVR to record and checked off yet another item on my hysterectomy prep list.

Fast forward five weeks.

This morning I woke up kind of achey, and not motivated to do much that involved getting off of my recliner. I grabbed the remote and decided it was time. I selected Beyonce’s show, and settled in with a cup of coffee and a warm blanket.

Everything was going fine at first. Lots of dancing and gyrating, peppered with insightful behind-the-scenes stuff. Perfect. Then she got pregnant. I had avoided previews of the show on purpose, so I was surprised to see the majority of the documentary examined her impending motherhood.

I sobbed when she shared in whispers of hearing her first child’s heartbeat … then miscarrying one week later.

I cheered for Beyonce when she felt nauseous, then took a test to confirm what she suspected. A baby!

I worried when she hid the pregnancy, partly because I hoped she could keep it private but mostly because I feared her “Bootylicious” moves would somehow dislodge the embryo. Seriously.

The more pregnant Beyonce became, the more introspective she became. This all made sense to me.

Until she said: “Bringing a baby into the world is the most powerful thing a woman can do.”

I wondered where that left me. With no womb to nurture a baby. Was I less of a woman? Does my hysterectomy make me less powerful in the world?

OK. I know, I know. I need to take a chill pill. Beyonce is a celebrity, and honey — with all those hormones coursing through her veins — she didn’t mean it literally.

Or did she?

Beyonce seemed very emotional when she spit out the words, and I’m sure she meant every bit. Bringing life into the world is powerful act. And who wants to argue about the power of childbirth?

Not me.

Yes me.

I’ll never know what it feels like to give birth. Or even get a positive result on a cheap pregnancy test. I forfeited that chance over and over with failed relationships, career-building promotions and a cornucopia of missed opportunities.

And now that I’ve had a hysterectomy, I know that the most powerful thing I ever do won’t be giving birth.

I’m filled with crazy potential, and none of my value is tied to my baby-making abilities.

At the end of the film, Beyonce cradles Blue Ivy in her arms, and wistfully acknowledges the abundance around her.

And just as her baby apparently made Beyonce’s life complete, I measure my success with a different scale.

Matt and I will build a family of our choosing. We don’t know what it will look like, but I’m pretty sure it will be the most powerful thing we ever do.

Resurfacing

Jillian waits to go under.

Jillian waits to go under.

Exile from Hysteria is complete.

Yesterday, sometime between noon and three, a surgeon removed my uterus and cervix along with my right ovary and fallopian tube. I’m not gonna lie. The pain is intense.

ivSadly I seem to be allergic to the best painkillers. I lived with the first one for almost 18 hours before the itching became too much. Then I switched to a different drug, but too closely on the tail of the first pain killer. Those next six hours are a blur. I came out of it with a swollen allergy lip and demanding that Matt bring with him a back scratcher.

I’m not allowed anti-inflammatories, so I’m relying on ice packs and a stomach binder to keep the swelling down. This part is simply miserable.

beeperMatt has been a trouper. He stayed at the hospital waiting room, hopefully watching an electronic board post my latest status update as I moved through the various stages of surgery. The front desk gave him a restaurant-style beeper to carry that would alert him when I cleared significant hurdles, and more importantly when I was ready to go up to my hospital room.

I don’t remember much about yesterday, but I do remember Matt was there for all of it. He called my mom and brother when I came out of surgery, he met with the surgeon to get the skinny on what went down, he escorted me up to my hospital suite and fed me small pieces of a pork chop dinner.

I sense that resurfacing will take a long time.

My surgeon stopped by this morning, and spoke with me in detail about the surgery. She confirmed a long-standing suspicion that I had about endometriosis moving high in my abdomen. In recent weeks I had another doctor tell me I most likely have gall bladder issues causing the pain below my ribs. It ends up that it was endo the whole time. The surgeon was able to break it down, hopefully eliminating that problem.

Later today I was overcome with unfocused crying jags. I had read about this possibility in the discussion forums, but when the first wave came I was completely unprepared. “Are you in pain?” the nurse asked. “No. I don’t know why I am crying.”

The second jag was inspired simply by the fact that my room is in the Obstetrics wing, and that I can hear the shrill cry of newborns.

Sigh.

I fear this resurfacing will take place in phases. The road I took here was winding. How could I expect the road out would be any different?

On turning 43: Welcome to Exile

cake

Tonight I officially welcomed exile.

I marked the occasion with a small birthday cake bearing the image of an angry uterus. In a few short days, a hysterectomy will remove mine.

Somehow turning 43 was more of a milestone than I expected.

Some would say I’m starting out this new year on a bad foot. That getting a hysterectomy seven days in is just terrible form.

I disagree.

The last two months have been beyond enlightening. I’ve had tough discussions about babies with the man I love. Made gut-wrenching decisions about my future. Opened up to share my vulnerabilities with strangers. Allowed myself to accept help from friends.

Along the way, something funny happened.

I got stronger.

More than you’ll ever know.

So in a way, this hysterectomy, the twisting pain from the endometriosis, is all a blessing.

candlesWith this in mind, I thought hard about my birthday wish as Matt pushed candles in the cake.

I closed my eyes, reflected on the upcoming few days, and blew the candles out.

I’m pretty sure that wish will come true.

(No more) close calls

I blame the last time I took a pregnancy test on endometriosis.

As a long-term sufferer, I had grown used to heavy periods. Very heavy.

But all of that changed about six months ago once I started the pill. Aside from the obvious birth control, it was supposed to slow the monthly flow. While my periods became noticeably lighter, something unexpected happened. My menstrual cycle became wildly unpredictable.

During the week of “dummy” pills, my period was very light at first. Almost undetectable. Then the next month I got my period a week early. It got to the point that I was completely unsure of when or how heavy my period would be.

Then a couple months ago, it just didn’t arrive. I racked my brain trying to remember if I somehow missed a pill.

Could it be that I was pregnant?

I checked the calendar. I was five days late. On the pill. Everything seemed improbable. My boyfriend and I weren’t exactly ready for a baby, but I was open to the possibility. We would make it work, I told myself.

I considered this possible accidental pregnancy. I thought of changing the spare bedroom into a nursery. Buying a stroller. Deciding between cloth or packaged diapers. We would get by. Our mothers would make sure of that.

I pushed my hands into the bathroom closet, feeling around in the dark for a leftover pregnancy test from a couple years prior. I pulled it out and checked for the date. Expired by eight months. It would have to do.

I ripped open the thick foil package, and proceeded to pee on a stick. It took almost 10 minutes to get the result: not pregnant.

I tossed the test in the trash. My heart sank a bit. I realized I was in no way ready for a baby. But the smallest hint of one, just the faintest possibility somehow lifted my spirits. The next time I buy one of those, I told myself, would be a happy occasion. Matt and I will be prepared, and actively trying to conceive.

Two months later, my heart breaks. Now that I have decided to get a hysterectomy because of my struggles with endometriosis, I realize there will be no more close calls. No anxious trips to the drug store to buy a pregnancy test. No more daydreams of maternity clothes. Of people debating if my baby looks more like Matt or me.

When I found out about the surgery, my gynecologist suggested having a baby right now, then having the hysterectomy. Others told me I should harvest my eggs and consider using a surrogate. Both of these options just didn’t fit. The timing was off. Matt and I discussed it, and we just couldn’t justify having a baby to accommodate a surgery. And the egg-harvesting route sounded complicated, and expensive. Another definite no.

As I tearfully explored these options, Matt gently reminded me of the many children already in the world who desperately need parents. That we could provide them with the family they need. He was right. Knowing we had this option somehow lessened the weight of the situation.

The luxury of an accidental pregnancy has passed me by.

This much I know.

But I refuse to believe a hysterectomy is the end of the road.

Not now. I have too much love to give.

Closed for business

Leaning back in the examination chair, I tried to think of questions I had for my orthodontist.

Would I be able to keep my Invisalign braces in during my hysterectomy? (No.)

Will I have to keep my braces in longer if I take them out for the surgery? (Just a few more days depending on how long I leave them out.)

The assistant cheerfully noted my surgery plans somewhere in my file, then pulled her rolling chair in close.

“Ya know, I’d love to get a hysterectomy,” she said. “I’m so tired of getting my period. I mean, I’ve already had my babies, so what’s the point?”

Suddenly my tongue grew, filling my mouth, preventing me from eviscerating her.

My hysterectomy is not voluntary, I wanted to scream. I want this pain to stop! I have no choice but to surrender my uterus.

And even then, it’s no guarantee.

I still wanted the option to have biological kids. To create a little kidlet who would magically look a little bit like my boyfriend Matt and me. But the timing is all wrong, and the reality is that I can’t wait a couple years to see if I’m ready to get pregnant. The endometriosis pain is real, and now, and steadily increasing. So I will sacrifice.

I try to make excuses for her. I tell myself the assistant didn’t mean anything by it. Who wouldn’t want to be free of monthly bleeding?

Me. That’s who.

Rite of passage

I think back to when I got my first period. I was 14, and the second-to-last in my eighth-grade class. I know this because all the girls were polled, one by one. I was mortified when the girls came to question me, but knew I couldn’t tell a lie. I was sure it would never come, that something was terribly wrong with me.

Then one day I rode my bicycle up to McDonalds to spend some of my hard-earned babysitting cash. In the bathroom stall, I looked down and saw a stain of reddish brown blood in my panties. Could it be? I couldn’t wait to go home and tell my mother. I had finally got my period.

Later that night, I sat on the front porch staring at the stars stretched out in the sky. My dad eventually joined me. We both sat in silence on the steps.

“Your mother told me that you became a woman today,” he said, with all the levity required. I had successfully navigated this rite of passage. And with it came responsibility.

“You know you can become pregnant now, right?” he asked. I can’t remember if he made eye contact, but I doubt he did. Us kids had sex ed in school, and my friends and I talked. We were more than old enough to know where babies came from.

End of the road

The orthodontist’s assistant isn’t the first person to say something insensitive to me since I’ve disclosed my surgery plans. I’ve had people tell me I need to freeze my eggs. To hire a surrogate. That I haven’t fully investigated my options. That I need a different doctor.

All without an invitation for feedback.

Trust me when I say this decision was devastatingly difficult. I still weigh it. Every day.

But this outcome stands.

I’ve come to the end of the road with my uterus.

Much sooner than expected, it will be closed for business.

A will?

will

With a major surgery hanging over me like a dark cloud, I realized I had to get my life in order.

Specifically, I had to write a will. My first one.

How did I make it to 42 years old without writing one out? Easy.

Denial.

Up til now, I haven’t had reason to get all serious. I mean, I have no children, and I’m not married. I own a house and a beater car, but I have no jewelry or items of worth.

And there’s mortality to think of. Or not. I’ve opted to bury my head deep in the sand, waiting for a sign that I should start acting like an adult.

Finding out I need a hysterectomy was all the nudge I needed.

From what I can tell, the morbidity rate for hysterectomies is relatively low — although abdominal procedures like the one I will have rank a bit more dangerous. Still, my neurotic mind goes all sorts of crazy as I imagine the possibilities.

Recently during dinner at a restaurant, without warning I blurted out: “I want to be cremated.”

My boyfriend Matt purposefully chewed a piece chicken.

“OK. If that’s what you want,” he said, grabbing the basket in front of him. “Pita?”

Yeah. No one wants to talk about this stuff. But it’s got to be done.

So I called my lawyer, the one that helped me out when my grandfather was dying. I told him I was finally ready to fill out a will. He asked me what took so long.

There’s not enough time in the day.

I had him give me the works. A final will and testament, a general power of attorney, a living will, final disposition instructions, just to name a few of the documents that were drawn up. I will go next Wednesday to sign them all and make it final.

I’ve lived a pretty carefree life up until now. I’ve stared death straight in the face … and laughed. On more than one occasion. Not once did I ever wonder if I had my affairs in order.

But a lot has changed. A few years ago I got sober. Life has come into focus. I’ve also had my share of death in recent years. I lost all four grandparents. An uncle. My father. I’ve seen how a solid will can make things easier for surviving family members. I’ve also seen how a poorly drafted will can destroy them.

So this week I will formalize documents that legally acknowledge my end.

I consider this a beginning.

Falling apart

In a moment my life changed.

But really it had already been falling apart in fragments.

For the last four months, the pain in my lower abdomen has been unyielding. Unbearable. So bad that on occasion, when I can’t roll over, I require assistance to get out of bed.

I tried to ignore it. When my psychiatrist casually asked about my endometriosis, I told him the pain had returned. When I told him my plan was to hold off on going back to the doctor until I couldn’t take the pain, he quizzically looked at me. More honestly, he shot me a look that said, I know I’m your psychiatrist, but are you insane?

I made an appointment to see my gynecologist. I half expected her to tell me it was nothing, an overreaction. Worst-case scenario, I envisioned her telling me I needed another laparoscopy surgery, like the one I had five years ago to diagnose my endometriosis.

I wasn’t prepared for what happened next.

After bringing her to to speed, and an examination, my doctor laid out the options. She said I could try another laparoscopy, which would address a dangerous situation leftover from the first surgery but would not guarantee freedom from pain. Also, sometimes surgery can lead to increased endometriosis, so this is a dangerous gamble. Then she suggested a hysterectomy. She would leave my ovaries but remove my uterus. With this surgery it’s not a sure thing that the endo pain would go away. But she said it was worth the chance that it would help.

This all was dependent, of course, upon my child-bearing plans. Gasp. My boyfriend and I aren’t even engaged yet. And I know I pushed it by placing career before babies, but even at 42 years old I thought I had a few good years to sort things out. Maybe have a baby along the way.

But now those plans were skewed, and I needed to have a serious talk with my boyfriend. We hadn’t even seriously discussed marriage, and I had to put him on the spot and see if he wanted to have babies with me.

My heart. Breaking.

The doctor said I could have a baby then have the hysterectomy once I recovered. I felt the air escaping from the exam room. Was this really happening?

She ordered a pelvic ultrasound to rule out abdominal masses and said this would clear me for surgery. Once the test results came back, I could give her a call and tell her my decision. We would be speaking in less than a week.

I walked to the car not noticing my winter coat was unzipped, the cold winter air rushing up under my sweater.

In the car, I called my boyfriend right away. I immediately told him I had serious news to discuss but that I wanted to wait until I got home to talk in person. That lasted about 30 seconds. I spurted out news about the hysterectomy, and how we need to decide if we want babies. It was awful. He said he didn’t know if he wanted kids. I sobbed. We both realized we were not emotionally or financially prepared to welcome a child in the next couple years. I sobbed again.

My boyfriend mentioned adoption, and spoke of the numerous babies and children in the world that needed homes. That we could do that for them. I smiled, and did my best to keep my car on the road.

I wasn’t even home yet, and the emotions were overwhelming.

And the grief had not even begun.