Exile From Hysteria

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

Category: Grief

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.


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.


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.


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?

(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.

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.

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.

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.