Exile From Hysteria

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

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.

(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.

A perfect storm

notebook

I finally have a date.

I will have an abdominal hysterectomy at 11:30 a.m. March 14.

Is it wrong to be excited?

All this waiting has been dreadful. Now I finally have something tangible to work toward. Lists to draw up. Shopping excursions to plan.

This is where I shine.

I keep organized with a turquoise/blue journal. Without it I’d be lost. I categorize everything, and keep track of medical details and things like what to pack for the hospital. I also use it to break down what to expect in each of the six weeks of recovery.

And I’ll admit it. I’m neurotic. Just a bit. (Ask Matt.) So in many ways, prepping for a surgery is the perfect storm. All these lists, all these phone calls, all these websites to read and appointments to check off one by one.

I heard this lap pillow will become my best buddy in recovery.

I heard this lap pillow will become my best buddy in recovery.

In my blue book, I have a list of things I need to buy in advance of the surgery. Last weekend I bought the first item: a lap pillow.

Matt actually spotted it while we were late-night shopping at Meijer.

“Hey, didn’t you say you need a pillow?” he said, pointing up at a shelf filled with what looked like fluffy puppy dogs. “How about this one?”

He tossed me a bright, multi-colored pillow shaped like the head of a flower. I held it against my belly. It was perfect.

The research I’ve done suggests getting a small pillow to hold against my stomach incision. This will ease the pain when I cough, or when I put on a seat belt.

I also purchased a pair of oversized men’s sweatpants. Yeah, I know. Sexy. But after the surgery I’ll be going for comfort. I’ll have to save fashion for “Project Runway.”

Four weeks sounds the perfect amount of time to prepare for a major surgery. Not too far out. Not this Friday.

In some ways, this reminds me of preparing for a hurricane. When I was 10, I hunkered down in southern Florida as Hurricane David powered through. I remember the shopping trips, taping up the windows, putting batteries in the flashlight and radio. Nervously looking up at the ceiling as I heard the rafters moan. Rejoicing with my Barbies out back once the sun reappeared.

Four weeks. Just enough time to cross everything off my lists.

The perfect storm? You bet.

And I’m riding this one out.

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.

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.

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.