Exile From Hysteria

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

Month: January, 2013

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.

Nervous Nellie

I made it to 24 hours from my meeting with the surgeon before anxiety almost suffocated me.

With so many unanswered questions, I worried. Just an little bit. Mostly, I fixated on whether or not the doctor would be able to provide me with a surgery date.

Deciding to undergo a hysterectomy was a hellish process. Having to confront my concepts about family. Redefining my relationship with my boyfriend. Exploring the meaning of femininity, and the emotional/political implications of losing my uterus. Once I pushed through all of that and made a decision … I was ready. Now I’m desperate for the process to start, for me to have a solid goal to move toward.

I told myself I could wait to make the call to the OB/GYN. I looked at the clock. How could it be that only one minute had passed?

I picked up the phone and dialed the number out of memory.

The receptionist had a calm voice, undeterred by my nervous Nellie energy. I explained that I wanted to know if I would be assigned a surgery date when I came in. She promptly told me no.

This was unexpected. Not that I had Googled “surgery date assignments” or anything. Still, I stammered then quickly regrouped. I then proceeded to ask the same question at least four different ways.

The bottom line: I will not receive a surgery date tomorrow. Much of it depends upon the availability of hospital surgery suites, and the number of surgeries that the doctor already has to schedule. The surgeon will have to skillfully juggle three different calendars before deciding upon a date.

The receptionist paused to look at my file, then said the doctor would most likely not schedule my surgery on the same day as another patient.

“It looks like she’ll be working on you for quite a while,” she said.

The reality of the situation hit me hard in the gut. I imagined my endometriosis shattering, then dissolving into nothing. Instead, I knew it would involve a several-hours-long procedure in which she painstakingly scrapes the endo from my internal organs. I’m not sure if she’ll do this before or after she takes my uterus.

Tomorrow is almost here. It will validate what I feared would evaporate into a hypochondriac’s illusion. This is real. I will have a hysterectomy. And tomorrow I will be able to ask all the questions I want.

For a nervous Nelllie, this is a good thing.

Game changer

When I think back five years to my laparoscopy surgery, and compare it to my experience today preparing for a hysterectomy … it’s obvious there’s one  big game changer: social media.

Without it I’d be a sniveling mess.

The support is instant. I can post a blog, Tweet, follow someone on Tumblr, and immediately receive feedback. I can put out a question, or fear, and within minutes hear from a handful of women who have gone through the exact same thing.

Whether sharing a similar procedure, or offering simple words of encouragement, these messages propel me.

Thinking back five years, I can’t believe the difference. While the internet obviously existed, and I could conduct basic research on my procedure, I had absolutely no one to talk to about this except my gynecologist. And she thought it was no big whoop. Being the melodramatic gal I am, I was convinced my exploratory laparoscopy was going to kill me. I sobbed, and begged my boyfriend to write me a love letter that I could bring with me into the hospital. The poor fella obliged.

I did have access to a now-defunct endometriosis-specific message board, but it was nothing compared to the instant companionship offered through various social media platforms. And now a new, comprehensive hysterectomy message board has come along that offers a true sense of belonging. HysterSisters offers space to women dealing with endometriosis, those who are pre-op, post-op, menopausal, etc. No matter where you are at on your journey, there’s a space for you and your story.

Luckily the icon for my blog (the knitted angry uterus) is pretty darn cute, and the ladies on Pinterest seem to love it. The icon may draw them in, but they stay for the … hey, someone just pinned me!

This project, this social media experiment, actually is not an experiment at all. It’s not about crunching numbers or collecting friends. These connections are about creating a community of my choosing for powerful, dynamic dialogue.

Facing a hysterectomy is a game changer in itself. Everything that I once thought was solid has shifted. My thoughts on family and children have radically changed. I am forced to confront my mortality, and prepare for enormous pain. I’d like to say I am a strong endo warrior, but these things terrify me.

But speaking with my endosisters on Twitter, Tumblr, message boards, WordPress … suddenly I know I am not alone. They will hold me up, and remain by my side throughout the entire process.

Some say social media is impersonal, but for me this is a whole new level of intimacy.

Female trouble

My run with female trouble spans a couple of decades.

Looking back, I see 20 years of missed opportunities. Because endometriosis is difficult to diagnose, and its symptoms mysteriously mimic other diseases or simply refuse to show up on scans, I learned to silently endure the growing pain. Endless tests showed nothing. I was losing hope. I told myself I was stronger than the pulling sensation deep in my belly, that I could will the pain away. And I made it work … until a couple weeks ago.

Lost in prayer

I first was aware that something was awry sometime in my early 20s. I had developed a deep cramp in my lower right abdomen. I tried self-massage, laying on my belly, laying on my back, pushing my fist directly into the pain … nothing stopped the burning ache.

Finally, late one night when I could not stand the pain a moment longer, I drove myself to the hospital. A doctor in the ER palpated my belly, and said he felt a large mass in my abdomen. He asked if my family had a history of intestinal cancer. I said no, but I had no idea. My family didn’t really talk about heirloom ailments.

I was given orders for an abdominal CT scan, and a lower GI. I returned a couple days later for the day of testing. My family all prayed to  Father Solanus Casey, a late Catholic priest known for curing sick people who also was under consideration at the time for sainthood.

When the tests returned, doctors told me they found nothing. That the mass had mysteriously disappeared. My family rejoiced and praised Father Solanus. I wondered what had just happened, because the pain in my abdomen continued to burn.

Losing trust

From an early age, I have a history of dealing with doctors who did not believe my pain. When I was in elementary school, I began experiencing chronic stomach aches that continued into high school. I endured enemas and scans and blood work, only to be told by doctors that they could not find a medical cause for my pain. I was referred for counseling. The confusion was so overwhelming. The pain terrified me, and the doctors who I had no choice but to trust told me it was all in my head. As an adult I came to identify those stomach aches as panic attacks, but I never lost my distrust of the medical establishment.

After having laparoscopy surgery five years ago to finally diagnose my endometriosis, my sense of distrust was reinforced. As a followup I went to a specialist because the initial surgery did not get all of the endometriosis. After waiting for 45 minutes, I finally saw the surgeon. For about two minutes. Just long enough for him to tell me I was not a candidate for surgery, that I should just learn to deal with the pain. He simply would not help me.

I burst into tears. Begged him to stay, to please cut me open and take out the pesky endo wrapped dangerously around an artery. He walked out of the exam room, and never came back.

I was devastated. I choked down my tears, and by the time I got to my car, I vowed not to talk of it again. And I didn’t. I never told my gynecologist, my therapist, not even my boyfriend. I became a dutiful soldier, and suffered in silence. I learned to embrace the pain, to modify movement, to avoid activities that required too much walking or standing. I was slowly losing myself to this monster growing within me.

Unwrapping fear

So a week from today, Matt and I meet with the gynecologist to set up my hysterectomy surgery … and I have a real fear she’ll tell me nothing is wrong. That after finally deciding to tell my family and close friends, all of this will all blow up in my face as an overreaction.

So I check my notes. Reassure myself by remembering conversations with my gynecologist. With the nurse. I trace the line of pain from under my right ribcage down deep into my abdomen. Of course this all flies in the face of everything the doctor already has told me. That indeed, I am sick.

Im learning to unwrap the fear, to embrace the pain, to accept the cards dealt to me as not an illusion … but a cold hard truth.

Possibly for the first time in my life.

Piece of cake

Lately I have been tired. Extraordinarily exhausted.

The shooting pains from my endometriosis have been unending. Mostly it has been a low-grade nonstop pulling pain that makes me want to curl up in a ball. In any position that may unwind my internal organs.

This makes me kind of surly. A whole lot surly, if you ask my boyfriend. It’s hard to stay engaged in a conversation when it feels someone’s pulling taffy in your guts.

Here’s my layman’s attempt at explaining what’s going on in my belly:

Basically, endometriosis occurs when uterine cells grow outside of the uterus in the abdominal cavity. When these cells grow and spread, they can bind internal organs together, causing significant pain. The only way to diagnose endometriosis is through surgery. There is no known cure, but removal of the uterus is believed to slow endometriosis growth and significantly reduce pain.

It’s a gamble I’m willing to take.

I called the gynecologist this morning to check on my pelvic ultrasound. The nurse put me on hold, then came back and cheerfully chirped, “It’s normal. In fact, the report says your uterus is unremarkable. Don’t take that the wrong way, honey. That’s a good thing.”

I explained that I expected a normal result, and that it was clearing the way for a hysterectomy. Immediately, her tone changed.

“Oh, well let’s just set you up with an appointment with the doctor,” she said.

2:20 p.m. Jan. 30. This is the day I will officially commit to a hysterectomy.

“Don’t you worry,” she said. “I’ve been there, done that. It was a piece of cake.”

Though she couldn’t see it, I smiled. It seems the more I open up about my troubles, the more women I meet who are experiencing the same thing or have already had a hysterectomy.

All that’s left is to sort through my insurance. The nurse noticed my primary care physician and my gynecologist are in two different networks. I recently had changed primary doctors in order to see someone closer to home; my previous doctor was 45 minutes away. I chose to keep my gynecologist out-of-network because a) she did my first laparoscopy surgery and I trust her, and b) because my HMO said I could.

I tried calling the HMO to make sure there wouldn’t be a problem, but today is Martin Luther King Jr. Day, and the office is closed.

I’m just hoping to get this straightened out before I see my doctor on the 30th. I want to go in with as clear of a head as possible.

In the meantime, I have lots of homework to do.

But no need to worry.

I’ve been told this is a piece of cake.

Owner’s manual

To clear the way for a hysterectomy, I needed to undergo a pelvic ultrasound. As a master multi-tasker, I decided to prepare for the procedure on the way to my appointment. The task: drink 32 ounces of water in 15 minutes.

I accomplished this in the first part of the hour-long commute to the clinic. Then I tried my best to ignore the bumpy freeway and think of anything other than waterfalls. My meditation was interrupted by my boyfriend Matt when he saw the check engine light go on in his new truck.

“Pull out the owner’s manual,” he asked.

I opened the glove box, and a small box of tampons flew into my lap. I vaguely remember buying them at a gas station when we were on a day trip somewhere. My period had made a surprise appearance, and I bought the tampons as insurance that I would make it home without making a mess.

I handed Matt the manual, placed the tampons back in the glove box and tried not to think about the irony of the situation.

Who likes tampons, anyway?

By the time we got to the clinic, I was bursting at the seams, and the receptionist assured me that was exactly where I needed to be. She encouraged pacing. I told her I worried about peeing my pants, and said I wouldn’t be the first one to do that.

The ultrasound room was small, and contemporary. I spotted the restroom right away, just feet from the exam table. The tech turned down the lights, then told me to lower my pants to my knees and lay back on the table. She squeezed blue jelly on my belly, and started the ultrasound.

“When are you getting your hysterectomy?” she asked.

I told her I didn’t know. That I still needed to set up a surgery date once the test results were back. I confided I had just learned about everything the day before, and that it all was still quite a shock.

“Oh, I’m sorry. I thought your hysterectomy was voluntary,” she said.

Voluntary? I wasn’t sure what she meant. Did women just decide to give up their uteruses because they are in the way? I know there must be myriad reasons why women have the surgery, but my muddled mind couldn’t sort through it all.

After the test was done, I looked at the screen and asked if I could have an image of my uterus. She apologized, and said no. It seemed I wasn’t the first woman asking for this parting gift.

I thought of my friends with children, and how they gleefully post ultrasound images of their babies on Facebook. I was hoping for a similar affirmation. At least a token reminder that my uterus once existed.

Instead, I wiped the blue jelly off of my stomach.

The tech told me it would most likely take three days for results. I closed the door after her, and sat down on top of my things. I breathed in deeply, taking in this small moment alone.

Suddenly I wished for an owner’s manual. Anything to explain away the malfunction in my body.

Because soon enough, I was sure I wouldn’t recognize my life anymore.

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.