Exile From Hysteria

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

Tag: women’s health

Road to recovery

Most days now, I don’t even think about my hysterectomy.

It’s as if I’ve almost forgotten this huge portion of my emotional map. The reminders come as I notice my pants are too snug (residual inflammation sweetly nicknamed “swelly belly”) or I reflexively pull back from a sudden muscle twinge deep within.

Life has moved on, carrying me in tow.

Two weeks ago I returned to work. I’d say it was a smooth transition. Still, I find myself completely tapped by 3:30 p.m. I know this will improve with time.

At my six-week checkup, my surgeon declared me well on the road to recovery. The only outstanding piece of business were two stubborn stitches that remained in my vaginal cuff (where my cervix once was). She cheerfully told me to hold off on sex for two more weeks.

She also cleared me to start working out again. After the surgery I lost 7 pounds, but then swiftly gained that and some extra. She told me to slowly build up my weight lifting, and to trust my gut when determining how far I can push myself.

After I thanked my doctor for everything — the accurate diagnosis, the skillful surgery, the kind bedside manner — she surprised me by saying this most likely would be our last meeting. She encouraged me to get pap smears (yes, I’ll still need those!) with my primary care physician, along with my breast exams. If I really wanted to see her, that would be fine, but she made it clear there was no reason. This made me sad. She had guided me on the toughest medical decision of my life.

I looked her in the eye and said goodbye.

The doctor soon stood up and grabbed my chart. My instinct was to pull her in my arms, and hug her deeply. But instead I watched as she opened the door, smiled and walked out.

Most days now, I don’t even think about my hysterectomy.

Except today.

And I’m grateful for the experience. Every bit of it.

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.

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.

Wait! Was that a hot flash?

My first hot flash took me by surprise.

I was snuggled in on my recovery recliner, wrapped up in a sweater, a blanket and wearing slippers. I always run cold, and have taken to covering up instead of engaging in Themostat Wars with Matt. Even with the blanket, I still make him concede to a 70-degree temperature when I am home.

So this  afternoon, as I felt a drip of perspiration fall down my ribs, I knew something was amiss.

“Honey, is it hot in here?” I asked, plainly expecting Matt to dramatically exclaim how he was melting. Instead, he said, “No. It’s not.”

I threw the red-and-white knitted blanket to the floor in one big motion.

“Your face is bright red,” Matt said.

I jumped out of the chair, energized by the heat. As I kicked off my slippers, I swirled around, closing my eyes as the small breeze tucked under my purple nightgown.

“Jill, you better sit down. You’re going to get dizzy.”

So I sat. The hot flash celebration was short lived. The intense heat wore off in about five minutes. Out of habit, I put my sweater back on. That didn’t last long. It took a good 30 minutes before I felt close-to-comfortable.

In all honesty, I wasn’t expecting a hot flash. My surgeon had salvaged my left ovary and fallopian tube. The hysterectomy was designed to keep menopause at bay for another 10 years.

Still, I knew there was a chance this might happen.

When I went under the knife, a good portion of my internal organs “went to sleep” — including my remaining ovary. I’ve heard sometimes it takes weeks, or more, for the remaining ovary to “wake up” and fully function again.

There’s also the chance it won’t start working again. And I will go directly to menopause. If this happens, I will discuss hormone replacement therapy with my surgeon. In the meantime, I will keep a journal of my symptoms and present them when I see the doctor a week from today.

I have a bum thyroid that leaves me basically always freezing my butt off. So up until today, I always made jokes about how hot flashes will be a welcome change … when I get the change.

Now that I got a taste, I’m not so sure.

I thought I’d love the sensation of being hot, but really I just felt flustered and sweaty. And the randomness of it all sorta freaks me out.

A friend of mine recently told me getting a hysterectomy is the beginning of my story, not the end.

I suspect she was right.

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.

Sign me up!

To help out by bringing food, visiting or giving a ride, please click on this photo and sign up.

Want to bring food, visit or drive me somewhere? Click on this pic and sign up.

I’ve been searching for an etiquette book that addresses the age-old post-surgery quandary: How to be gracious when you’re doped up.

Is that even possible?

I’m guessing it’s going to be a delicate dance when I’m recovering from my hysterectomy.

With the surgery less than two weeks away, the majority of my “To Do” list is crossed off. Now, quite a few friends and family members have been asking what they can do.

Being the self-reliant woman I am, my first instinct is that I don’t need any assistance at all. But the reality is that I probably won’t be moving much the first week after I get home from the hospital.

So how can you help out? Aside from wiping the drool from my chin, here are a few ideas:

  • Visit. But ring me first. Or sign up for a time to come over. I know it sounds funny to schedule a chatfest, but I’m going to need time to amp up to the occasion. And don’t be offended if I don’t last long.
  • Bring food. Make no mistake, Matt is the master chef in our home. But for at least the first week I am home, he might be too busy caring for me to worry about roasting brussel sprouts. Plus, the second week he goes back to work and I’ll be on my own. If you think you can bring some grub, sign up for a day on the helper list. I’ll slip you some cash for your troubles.
  • Call me maybe, but definitely before you show up. I’d love to hear from you. But most likely I’ll be sleeping. Still, give it a go. And if I don’t pick up, leave a message. Or send me a text/email. I promise to get back with you once I’m feeling up to the task.

Some people have asked what they can bring. My “fun stuff” wish list is simple: chocolate and gossip magazines. The trashier the better. And if they have insider information on any of the “Housewives,” you get major points. Or as Nene would say, “Bloop!”

My life’s about to change. In a big way.

But with friends and family like you at my side, somehow it doesn’t seem so scary.

Thanks for that.

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.