Exile From Hysteria

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

Tag: chronic pain

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.

Steppin’ out

Charlie and I celebrate my first adventure outside since returning from the hospital.

Charlie and I celebrate my first adventure outside since returning from the hospital.

I knew my first walk outside since I got home from the hospital would be a big deal, but nothing could truly prepare me for the experience.

Since most of the snow has melted, I chose to walk out back with my pup Charlie. The experience left me truly overwhelmed … by the amount of dog poo that needs to be picked up. That’s right. Without the snow to camoflauge, I was out for a hike on Poo Mountain.

Normally I would grab a couple plastic bags and take care of the situation. But with strict restrictions on bending/lifting/twisting, the Poop Patrol was a no go. So I skillfully bobbed and weaved my way to the back of the yard, surveyed my path, then scouted out a return trip. The mines were everywhere. I didn’t want to step on one, especially with my nifty new slip-on Merrill shoes. So I let Matt lead the way, and managed to even avoid the puddles of mud.

For the last week, the most exercise I got was traveling from my recliner to the loo. When I was feeling feisty, I would loop through the kitchen and grab a cup of coffee. Or maybe to the bedroom to pretend I was putting on something other than a nightgown. Again.

It took days to work up to the trip outside. I starting talking about it at the beginning of  the week. “I’m gonna walk all the way to the neighbor’s driveway!” I would declare to no one in particular. Usually such bravado would be followed by a serious nap.

I would look out the front window, and imagine walking along each cement square into unchartered territory. Then the doctor’s voice echoed in my brain. “Remember: As far as you walk, you need to still make it back.” She was right. My next door neighbor’s yard seemed an attainable goal.

I surprised Matt by suiting up this afternoon. I even traded in my nightgown for a pair of black sweatpants and a grey turtleneck. When I started zippering my coat, Matt sat up on the couch. “Hey! Where are you going?” he asked, genuinely amazed to see me up and about.

“I am going for a walk,” I said. Matt quickly hopped up and slipped on his shoes. “Why don’t we go out back?”

I hadn’t even considered that option. But I liked it. If I fell, or contorted into some ungodly post-hysterectomy shape, I wouldn’t have an audience. Save for Tangelo, our neighbor’s newly adopted golden retriever. But he’s a trustworthy fella. I doubt he would cause trouble.

So we went out back. Charlie bounded between the piles of poo, and I made my self dizzy staring down at my foot placement as I made my way through the yard.

Once I got back in the house, I surprised myself with a burst of energy instead of a nap.

In all honesty, I didn’t expect today to go this way. Last night I abandoned my recliner and tried sleeping in my bed for the first time. The experiment ended badly, and I woke up with my back in painful spasms. This morning I could hardly even roll out of bed, and definitely didn’t have any form of exercise on my agenda.

But in this I found a lesson. I pushed through the pain, and kept moving.

I don’t see another option.

Post-op: Day five.

suitcase

First, I’m glad to say the pain meds are working. I’m on percocet every four hours, and I’m feeling minimal pain from the hysterectomy. Mostly it’s just when I get up and sit down. Somehow the abdominal incision still feels numb, so mostly it’s internal stuff (especially where my right ovary and fallopian tube were removed) that’s causing me discomfort.

I’ve been home for two days and have been trying to get up as often as I can. This usually means for pee breaks (I’ll circle around to the kitchen to take the scenic route back to the recliner). Walking is good to prevent blood clots and to build strength. I ask no questions. I just walk as much as I reasonably can.

I found that I packed well for the hospital. I used everything I packed, and only sent my dear boyfriend home for a backscratcher after an unfortunate allergic reaction to a painkiller.

Here’s a list if what I packed:

  • Two pairs of pajamas. After the first day, I was ready to ditch the scratchy hospital gown and put on something that made me feel good. I also brought my own socks, although the hospital socks worked well.
  • Shampoo/conditioner. You’ll love having your own stuff when you finally get your shower. This also goes for toothbrush/hairgel, etc.
  • Computer/cell phone/power cords. I didn’t use these much the first day. I was sleeping, and if I was awake I was busy hitting my painkiller button. But by the end of day two I was on my computer, checking my Facebook and posting a blog update. I found my attention was short, but I still appreciated the distraction.
  • Lap pillow: This is essential, especially with a abdominal incision. I used it to hold close as I sat up in bed, and sometimes just laid it atop my belly for a gentle pressure on my abdomen. I found countless uses for the pillow, including placing it beween myself and the seatbelt on the way home.
  • Sleeping mask/earplugs. I got mad use out of the eye mask. I was fortunate enough to have a room of my own, but there were some lights that wouldn’t go off. And sometimes I wanted to snooze while my boyfriend was in the room. I never had to use the ear plugs, but I’m glad I had them, just in case.
  • Underwear. I bought undies that are about a size too big to accommodate the dreaded swelly belly. It ends up they fit perfectly. I made sure they are cute and girly, just because pink and purple polkadots are awesome. If you have an abdominal incision, you need to make sure the waistline of the panties is higher than the incision. Mine lies about five inches above the cut.
  • A personal item that brings comfort: I brought with me a crocheted uterus, complete with ovaries. She’s got a cute smile, and it reminds me of the great journey I am on.

The great victory since I’ve returned home is that my bowels have resumed function. I had no idea that once the surgeon touched my intestines, they would react by significantly slowing down. It took a while to bring them back to life, a process that almost was thwarted hours after my surgery when I was accidentally fed a pork chop instead of ice chips for dinner. Yeah. A few days of abdominal discomfort followed and finally was resolved through belly massage, drinking lots of water and walking a lot. That and twice-daily doses of colase.

What I find  most amazing about this whole experience is that I was in the hospital for a total of 52 hours, from check-in to exit. I find this hard to comprehend, when I consider that I underwent major surgery with at least three pairs of hands inside my belly. I was ready for a four-day stay, and was shocked when the nurse cheerfully told me it was time to go.

While I did find comfort in having a button of dilaudid at my fingertips and a medical staff and my beck and call, there’s a lot to be said about recovering in my personal space.

As they say, there’s no place like home.

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?

Pre-op meeting

paperwork

The nurse released the pressure cuff on my arm and looked me square in the eyes.

“Why are you so nervous?” she asked, noting my 186-over-something blood pressure. “You’re just talking today!”

It was hard to explain how this pre-op meeting made everything real. Official. In seven days, my doctor would cut me open like a fish and remove my lady bits.

If anything, my doctor is no-nonsense. We got through my list of questions quickly.

Will I need a walker? No.

What kind of lifting restrictions? Nothing over 10 pounds for the first six weeks.

When can I drive again? As soon as I stop taking narcotics for pain.

We discussed my ovaries. She’ll definitely take my right one since it is diseased and covered in endometriosis. During the hysterectomy, she also will examine my left ovary and make a decision about its fate. The hope is that it will stay put. The doctor also said she would poke around in my abdomen and break down endometriosis where it’s possible to do so.

I told her about my incessant back pain, and she said if it persists after the surgery I will need to see an orthopedic doctor.

I confessed my growing fear of the surgery, more specifically of the pain afterward. The doctor told me the nerves were normal. She assured me that I would most likely not remember the first couple days, and that I will have a button to push that will disburse pain medication on demand.

Knowing that I enjoy long, hot showers, Matt suggested getting a shower chair for me. The doctor enthusiastically agreed, and said it may come in especially handy in the first few days I am home since my balance will most likely be off. She said I can take up to 15-minute showers for the first couple weeks, then as long as I want after that. Baths will have to wait until six weeks post-op.

She saved the fun part for last: bowel prep the day before surgery.

Next Tuesday at midnight, I will have to stop eating solid food. I can drink what I want until 2 p.m. Wednesday, then I need to switch to clear liquids. Also at 2 p.m., I will begin my bowel cleanse with a shot of milk of magnesia and a Dulcolax laxative. Yeah. Fun times.

Matt already is planning gourmet Jello squares, with a side of chicken broth.

Given that I will spend the majority of Wednesday near a loo, I decided to call in sick to work, and also to cancel a hair appointment I had made for that night. The doctor laughed that I was even planning to get my hair done.

“Once you have that surgery, you’re gonna want to look a mess,” she said.

You know, she’s right. I’ll get a makeover right before going back to work.

Doctor’s orders.

The end: Period.

My last box of tampons. I kept these in Matt's truck as emergency backup. I figure at this point, use 'em or lose 'em.

My last box of tampons. I kept these in Matt’s truck as emergency backup. I figure at this point, use ’em or lose ’em.

For the last 29 years, almost like clockwork, I received my period.

Like an unwanted gift, we politely made room for each other. Over time a deep respect developed.

Today, we began our monthly ritual for the last time.

In less than three weeks I will have a total abdominal hysterectomy. The hope is that removing my uterus also will remove the constant pain I endure from endometriosis. It will also abruptly end my monthly flow, and all of its idiosyncrasies.

In the last year, my period has been wildly unpredictable. True to form, it came four days early this afternoon. Its arrival startled me; I was convinced if anything it might start over the weekend. I imagined pomp and circumstance. An emotional moment as I prepared to part ways with my menses.

Instead I grabbed a tampon from the bottom of my desk drawer and soldiered up to a stall in the women’s bathroom at work.

Cravings? What cravings?

Driving home tonight from dinner at Mexican Village, I suddenly interrupted Matt and urgently told him, “We need to go to 7-Eleven.”

My directive wasn’t entirely accurate.

A secret craving finally revealed.

A secret craving finally revealed.

I needed to go to 7-Eleven. It was an emergency. I needed chocolate, stat!

I didn’t tell him why. It was embarrassing to say I was freaking out about a candy bar. Somehow I had managed to hide my monthly chocolate cravings from him. Up til now. Up ’til the final hour.

I ran in and grabbed a king size Hershey bar.

As I climbed back in the car, Matt looked at what I bought.

“Just straight up chocolate? Nothing fancy?” He was flummoxed.

I tucked the bar in my coat and smiled. He didn’t need to understand.

Life without punctuation

I wonder what life will be like without a period. No more Costco supersized boxes of mega-absorbent tampons. No more bleeding through on the one day I wear white pants. No more asking friends if they could spot me a tampon when Aunt Flo unexpectedly stops by.

I wonder if chocolate will still taste this decadent, this sinful.

I wonder what will replace the monthly punctuation that I’ve learned to embrace.

I wonder if I’ll miss the cramps that burrowed into my lower back and deep in my belly. Is it possible to miss pain? To feel wistful for misery?

The answers wait for me.

And I am ready.

A patient patient

I’ve been known as a patient patient.

I’m proud to say now that reputation’s shot.

I politely waited nine days to find out my assigned hysterectomy date, then busted my way in to ask: What’s the holdup?

I called. Three times. Finally a receptionist plainly told me the surgery scheduler had 40 procedures to coordinate and that I needed to be … patient. I told her I already waited nine days and deserved to at least know where I stood in the surgery line.

She took my name and number and said she would personally delivery my message.

Yesterday morning, at 7:30 a.m., I received a call from the scheduler, Melissa. It ends up something much more confusing caused the delay in communication. Melissa said the doctor forgot to submit my surgical request paperwork. Seriously.

She profusely apologized and offered to put me on a waiting list to jump up in line. Suddenly I felt awkward about my medical situation. It may have been the adrenaline from actually talking to the scheduler, but in the moment I wasn’t in pain. Almost as if endometriosis hadn’t bound my innards into a cruel bundle of knots. I told her I could wait the six weeks she predicted it would take once she received the official surgical orders.

I contemplated our near miss. It’s a good thing I disregarded all those “good girls wait” voices telling to just suck it up and be quiet. If I hadn’t been persistent, it would be summer and I’d still be politely waiting by my cell phone.

It never pays to be patient. Especially with medical issues. Especially with anything.

While I have great friends and family, an amazing support system … I’m really on my own in this. I have to be my own fierce advocate. And getting here has been no easy task.

Since I was a young girl, I learned to keep quiet about my pain.

With a history of not being believed  (both as a child and as an adult) I trained myself to ignore my discomfort. To the point that nagging abdominal pain recently resulted in a recommendation for a hysterectomy. I took this obvious disregard for my own well-being as a wakeup call.

No more delaying routine medical appointments.

When I have an ache or a pain, I speak out about it.

If I think a doctor doesn’t believe me, I get a second opinion.

Common sense? Perhaps. But I never felt empowered enough to make these seemingly simple decisions on my own.

True to its unpredictable nature, my endometriosis reared its ugly head later last night when lower back pain woke me from a deep sleep. I startled myself awake with a gasp, then Matt asked if I was OK. I could feel the ache wrapping around my waist; I tried not to move. As I stared at the ceiling, I counted two more mornings until it was Monday. I prayed that would be the day I would finally find out the surgery date.

I plan to give the scheduler until noon. Then I’ll pull out my phone.

I’m a patient patient no more.

War and Peace

The argument was about a chair. A recliner I hope to convalesce in after my hysterectomy.

Seemingly out of nowhere, Matt said I was being “fatalistic.” That I didn’t wish to get better. That I wanted to spend weeks, if not months wasting away in the recliner.

What I’m sure was a slight misunderstanding, or perhaps a brewing resentment, exploded into a torrent of angry words and sobs.

“Why are we arguing?” Matt asked.

“I don’t know,” I said, wiping the tears from my chin. “I’m on your side, babe.”

“You know I love you,” Matt said, his face glowing red. “If I didn’t care, I wouldn’t be looking for this recliner for you.”

In a moment, when I wasn’t paying attention, the stress and horror of the situation almost strangled us.

I said I felt alone, and Matt said he could tell. In fact, he felt I excluded him from important parts of my fears, of my grieving.

“This affects me too,” he told me.

And Matt was so right.

Losing my uterus would have an effect on our lives, our beliefs on what defines a family. We would need to do this together. Up to this point I truly thought I had included Matt. But in this moment, as I saw his sad eyes, I realized I had fallen short.

Fighting shape

The thought of being cut open frightens me. I imagine the incision coming open and my innards falling at my feet. I know this is irrational. In fact, I have not found evidence of one woman to which this has happened. But this image, this fear is stuck deep in my gut. The core of me. Probably exactly where my uterus sits for a final few weeks.

What I do know is that my recovery will most likely be swift. My doctor said if all goes well I should be in fighting shape by four weeks post-op. Time will tell, but I’m hoping Lady Luck is on my side.

What I do know is that many women with endometriosis who have a hysterectomy report an immediate improvement in their abdomen pain. This eases my anxiety.

What I do know is that I plan on starting a workout regimine this weekend to prepare for the surgery. Most women I’ve spoken with recommend getting in shape before the hysterectomy, and report that it significantly improved their recovery time. I also plan to get moving as quickly as possible post-op.

What I do know is that I need permission to grieve, to move slow when I feel like it, to not be a superstar. Although I’m pretty sure I’m rocking this out.

Love letter

In an unconventional way, this is a love letter to the man I love, perhaps the only person I’ve truly let into my heart.

I am terrified. And I know he is, too. I have to remind myself I’m not the only person suffering a loss in this gig. I may be losing my uterus, but we both are sacrificing dreams, frantically readjusting expectations.

We are not the first couple to run into these speed bumps. It just makes sense that we are stressed. And scared.

I make no apologies. This is raw. Honest. Emotional.

I don’t know another way.

This also is a love letter to myself. A reminder to treat my self gently. To believe that I can do this.

I am doing this.

And best of all, I’m not doing it alone.

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.

Pulling the trigger

I’ve just pulled the trigger to end my relationship with my uterus.

After a half-hour meeting with my gynecologist, and revisiting my ongoing struggles with endometriosis, I have decided to proceed with a hysterectomy.

Getting here was not easy. But armed with a notebook full of questions, saying the words was much easier than I thought.

Once the surgery is scheduled, I will receive a phone call telling me the date. My doctor said she expects it to be either the end of February or early March.

I will have an abdominal hysterectomy, meaning they will cut my belly open (“at the bikini line”) to  remove my entire uterus and cervix. The surgery should take two to three hours, depending on any complications from my endometriosis scar tissue. The gynecologist said she hopes to leave one ovary intact in the hopes that it will produce enough hormones to prevent me from going into premature menopause. If the ovary fails to work, I will evenutally go on hormone replacement therapy.

After the surgery, I will stay in the hospital for two to three days. Then I will spend the rest of my recovery (about six weeks) at home.

This is starting to feel real. That I will have surgery. That I may finally find a solution to my chronic pain.

My boyfriend Matt (who kindly accompanied me to today’s appointment) asked helpful questions, specifically about the number of women who find pain relief through a hysterectomy. My doctor was frank. She said I had a 50 percent chance of living pain-free after the surgery. She estimated that 25 percent of women experienced some form of relief (even if temporary), and that 25 experienced no change in their pain level. She repeated that a hysterectomy was not a guarantee that I would finally be free of my chronic abdominal pain. But after a diagnostic laparoscopy five years ago, and a steady increase in pain … my doctor said this was my best option.

And although the odds aren’t tremendous, they are good enough that I’m willing to give it a shot.

NOTE: The doctor suggested two Web sites for helpful hysterectomy information: The American Congress of Obstetricians and Gynecologists and Web MD. I have added the hysterectomy pages for both sites to my Resources page.