Wednesday, September 19, 2018

"Sundown Towns"

We were driving north toward Bayfield, Wisconsin, where we had never been before, though some of us had lived in south-central Wisconsin for (could it be?) twelve years.  

We had passed the exit for Oshkosh, at the edge of Lake Winnebago—names familiar to me from Oshkosh overalls and the Winnebago RV.  

Do they make Oshkosh B’gosh overalls in Oshkosh?  Yes they do!, since 1895.  

Did they make Winnebagos in Winnebago?  Sadly, no. They made Winnebagos in Forest City, Iowa. 

As we approached Appleton, our minds drew a blank.  

I Googled Appleton.

Appleton was named after Samuel Appleton, who never once stepped foot in Wisconsin.  

The very first hydro-electric station in the United States powered Appleton’s prolific paper mills. 

In 1886, Appleton operated the first commercially successful electric streetcar company. 

The first telephone in Wisconsin was in Appleton.

The first incandescent lights in any city outside of the East Coast?  Appleton. 

From approximately 1930 to 1970, Appleton was a sundown town. Black people were not allowed to be in Appleton after sundown. 

You heard that right.

I paused and read the sentence a second and then a third time, slowly absorbing this information.

I Googled “sundown town.” 

Sundown towns (or sunset towns or gray towns) are all-white municipalities or neighborhoods in the United States that practice a form of segregation by enforcing a policy (explicit or implicit) of racial exclusion.  

In some places, a sign was posted at the town line that warned "colored people" to leave by sundown. 

Elsewhere, the policy was not so obvious; it was left to Midwestern discretion, a character perfectly suited to behind-the-scenes politics, to use back channels to implement a tacit policy of racial exclusion--quietly, so as not to draw attention from disapproving outsiders (and even some pious local finger-waggers, who best be kept in the dark about this one). 

I read aloud to our driver, who was French, about sundown towns from Wikipedia, where a footnote referenced Sundown Towns: A Hidden Dimension of American Racism, by James Loewen, as well as James Loewen's website.

We fell into an aghast reflective silence.  The mind boggled.  

"Lots of French fur traders up here," I reminded the driver. Because, honestly, it was shameful enough to have Trump in the White House; now I had to own this, too?  Not by myself.

"I was just thinking that," he said, kindly sharing the burden of my white American shame.

On the website by James Loewen, I found a list of known or suspected sundown towns in Wisconsin. 

"Is...?" the driver stopped in his words.

"Yes," I said.  My town was on the list, as unconfirmed.  Which meant that Loewen could reasonably infer from the census that it had been a sundown town.  Not a single black family had lived there up until the 1970s.  

Bayfield was on the list. 

And Ashfield, where the five of us would stay for the next three nights.  

Ashfield was a strange town.  Between tourism and industry, it chose industry, took on some kind of lakeside biohazard, and ruined its appeal for future tourists.  (This I also did not realize when I booked us there.)

With streets lined primarily by empty storefronts and consignment shops, we were cheerfully surprised to discover something unexpected: On every block, around every corner, there were murals.

They were colorful and vibrant and well cared for; a nostalgic look back through a sentimental lens at Ashland's halcyon years: the Thirties and Forties, by the look of the cars, and also the Fifties or early Sixties, by the look of the women's clothes and bathing suits (in one homage to sirens who were old ladies now).

Bus tours of Ashland's murals were on offer, but we didn't take the tour. We dashed along from block to block, peeping around corners and clicking our cellphone-cameras as the setting sun bathed the east-facing murals in golden light, leaving the west-facing murals entirely in shadow.

Sunday, June 24, 2018

Post-Op: Life After Essure

It was a little past six in the morning when my husband and I drove to Platteville for my surgery/salpingectomy on June 6.  (If you are interested in the medical and procedural details of a salpingectomy, please read my previous blog post.)  I had been bumped up to second surgery of the day from third, and was required to be there at 7:30 for pre-op.  We straight-lined it on 18/51 the whole way, bypassing opportunities for pastoral side trips. Even so, I saw two old barns from the highway between Mineral Point and Platteville that I desperately wanted to photograph.  One had an old metal roof that had taken on a lovely brown patina, sheets of metal loose like a spread of cards, barn slouching and sinking back into the earth, unsalvageable, organic, like a bittersweet memory of a bygone era.

The staff was faultlessly polite and kind.  The woman in charge of my care while I waited to go into surgery asked me to provide a urine sample so they could test whether or not I was pregnant.

I had recently become fiercely self-advocating.  I declined to pee into a cup for the purpose of proving that I wasn't pregnant.  I knew for sure that I wasn't.

We went back and forth on this a couple of times. I was not persuaded by her argument that I should comply because it was part of their formal procedure.

She would discuss my refusal with the doctor.

"That's okay," I said, not willing to back down, but not intending to be confrontational.  I was sorry if my refusal was going to make her look or feel less effective.

When the doctor came by, she did not mention the urine sample.

I was the oldest Essure-removal patient she had had--of many dozens of women.  I had the coils in  the longest--six years, the last five of which had been marked by the onset of fatigue and neuralgia, and a tentative diagnosis of Lupus that held out the promise of struggling to maintain a life that was necessarily physically active.

I live on a 5-acre farm. I have three horses.  (Full disclosure: One of them is a mini-horse.) I have three dogs, five cats.  I have a 14-year-old son.

For the past year, I struggled with fatigue that now cut most days in half.  After 12pm, I labored to finish what I wanted to accomplish before exhaustion and fever set in, driving me to bed to rest or nap for hours.  I had finally arrived at a point where I knew that I was kidding myself if I assigned any serious task to the second half of the day.  Everything had to be finished by 1 p.m., or it simply wouldn't get done.

In year six of housing Essure coils, I began to give thought to my limitations.  How long would it be before I no longer had the energy to work with horses?  Beyond their daily care (mucking stalls, sweeping the barn, hoisting water buckets and tubs of manure, pushing a wheelbarrow, stacking up 400 bales of hay), if I planned to actually ride my Palomino, for example, I had to work with him consistently or, like an unweeded garden, he went to seed. I don't have the kind of horse that I can saddle up once in a blue moon and expect good results.  Few people who have horses have that kind of horse.

I thought, maybe it would be better for Tanner if I gave him to someone who would work with him and ride regularly.

I comforted myself with the thought that Charlotte would take Fire if I couldn't care for him.  I didn't have to worry about that.  I wasn't sure who would take Cooper, the mini, who had been rescued and didn't have the best manners.  I could pay my friend to train him to where his behavior did not undercut the charms of his appearance.  Then we could find him a nice home.

My dogs were old and would not outlive my usefulness, so I didn't have to worry about them.

I would be left with cats.  Cats were easy.  With cats, I could face an uncertain future with a mischievous disease that could suddenly infect my kidneys or pericardium...Pleurisy, vasculitis, stroke...Increased risk for heart attack, blood cancers....

The doctor did not scold me about the urine test.  As before, she was smiling brightly, energetic, brimming with optimism that this would mark a turning point in my health.

"Six years," she said, for the third or fourth time since we met.  "That's a long time."

She was sorry I had been sick for so long.  On the other hand, there were many women who loved their Essure implants.

Really?  I wondered how long they had had their Essure implants.  Sometimes it took a while for side effects to kick in.  For most women like me who experienced Lupus-like symptoms, the  the coils had a cumulative effect.  It got worse over time.

Would they still love their Essure coils after five years? Or ten?

At 52, I was her oldest patient. Would those women still love their Essure implants at 52?

The anesthesiologist settled into a computer station beside me.  He typed into a keyboard and asked questions.

"Is your hair naturally red?"

"Yes," I said. "With a lot of gray mixed in."

"Red hair doesn't go gray," he said.  "It goes from red to blonde to white."

"Oh," I said.  Yes, technically, my gray hair was white.

"Redheads experience more pain and nausea than everyone else."

Really? Everyone?   I was prone to motion sickness.  It is a great sacrifice for me to sit in the back of a sedan, unless I am wearing pressure-point bracelets on my wrists, which I never travel without.

Was my pain more acute than everyone else's?  Pain had become so much a part of the fabric of my life--from extreme cramps to hammering migraines.

Recently, I learned that one good way to deal with pain was to focus in on it--to engage with it, rather than shrink away, like a dream in which I'm running but can't move forward.

It was one of my son's YouTubers who gave me the idea.  He ate a raw ghost pepper--you know, the way YouTubers are prone to do--so he was in agony.  As he explained in the course of his suffering, he focused intently on the pain and then, suddenly, it went away.  He was fine.  So, I tried that.  It didn't always work, but it usually did.

The anesthesiologist made me feel special, as a redhead.  I  have read the stuff my friends send me on FB about redheads being 2% of the population, having more acidic skin, absorbing extra Vitamin-D, and how people around the world generally fear and loathe us...But I don't really subscribe to any of that.

But in fact, we actually do feel super nauseous.

So, I get premium anesthesia:  Total IV, no gas.

Going into surgery: It's just like going to a party.  For the first five minutes, you're the center of attention.  Everyone's gathered around you, solicitous of your needs.  You manage to make one or two witty comments, everyone laughs, ha ha ha, and then you pass out and wake up at 2:30 in the afternoon, having totally blacked out, back in your hotel, ready to order room service.  

My husband told me the doctor said the operation went well.  They took out both coils.  Neither had broken, nothing was perforated.  The coil on the right side protruded further into the uterus than the left, so they cut out a bigger part of that corner of the uterus, and removed the coil with all of its surrounding tissue, which is exactly what they're supposed to do.

Maybe I imagined it, but it seemed like I felt better--specifically, cleaner in my head--as soon I woke up.  But, I realize, this could have been purely psychosomatic.

When I weighed myself the next morning, I had gained seven pounds in 24 hours.  This was surprising, given that I didn't eat anything the previous day until I woke up at 2:30 pm, when I had a small bowl of chicken noodle soup and two pieces of seemingly innocuous toast.  For dinner, I  had had a couple slices of pizza.  Okay: Maybe three.  But still: Seven pounds?

I was reminded of leaving the hospital after my son was born, and weighing more than I weighed before my son was born.  It took two weeks to filter all that saline out of my body.

For the rest of the day after my salpingectomy (let's call it a gecko spaghetti) my stomach was bloated and I looked and felt six or seven months pregnant.

It was weird, to say the least, feeling pregnant again at that juncture in my life.  But there's no better way to describe the feeling of a distended belly and the squidgy, loose structure of abdominal contents.  My viscera, which had been pushed up out of the way for surgery, were settling back into their basket like a sleepy half-charmed snake.  I walked gingerly, so not to rattle, and pressed my hands against my belly to hold it all together.

I wondered if that jangling looseness was a sign of impending prolapse.  Were things detaching?  Would they fall out?  Were they floating around and bumping into each other in  those seven pounds of foreign broth?

I wished I had been awake to ask the doctor questions after surgery.

By the second day, I felt five months pregnant.  I was still tired, but I could attribute that to having had surgery, according to my discharge papers.  

By the third day, I was back to my normal weight.  My belly was almost normal.  I still had moments of feeling loose inside, but they were fewer and farther between.

I wasn't supposed to lift anything heavy, but I did.  Tubs of manure.  I tried to avoid it, but manure keeps happening and has to go to the shit-pile promptly, or it will attract flies.

I lifted bales of hay and plastic blocks of shavings.

I did not lift a fifty-pound bag of barn lyme.

Every time I felt a twinge, I worried that I had done too much and ripped my uterus.

My feet were bothering me in the days before the surgery.   Things that I had used to think of as part of a life-long condition, that I felt confident I could tolerate indefinitely, were not so easily shrugged off.  They were the pricks and poison of a foreign invader. Every brushstroke of neuralgia that kept me awake, every flash of pain sheering across my foot,  every lost hour without energy to do anything, became pretty damn intolerable.

Because I wasn't supposed to be this way.  This was not my destiny.  This was the product of a mistake, of shoddy product testing, of aggressive marketing.  This was the fault of a giant greedy corporation named Bayer, which just bought up Monsanto, by the way, that notorious purveyor of carcinogenic weed killer and insecticide that's doing God-knows-what to our bodies and environment. (I say this as one who lives adjacent to fields of corn.)

That ramshackle barn with the rusted metal roof, the one I wanted to photograph?  That was me. That's how I felt: sinking into the soil under a weather-beaten patina, deteriorating and decrepit.

But, this past Thursday, the fatigue, like a rain cloud, lifted and departed.

On Friday, I was aware that I still felt good.  The fatigue was gone,  at least for now.  I might reasonably expect to do something with the second half of my day.

So, my son and I went to SummerFest in town on Friday night.  (I never go out on Friday nights. I am always exhausted at the end of the week.)  We left the house at eight and returned around nine-thirty or ten.  At no point did I feel like a martyr.  My mood never flagged.  I didn't have to make an effort to be cheery or patient.  I did not have to lie down as soon as I got home.

Compared to how I had been feeling for more than a year, normal felt amazing.

I see my rheumatologist in a week.  I'll be interested to find out how my labs compare now to what they have been: borderline anemic.

Who knows?  Maybe I'll find out that I have Sjogren's but not Lupus. Or maybe I don't even have Sjogren's.  Or maybe nothing has changed, it's all in my head, and history will show that the whole Essure-Sisters movement was a case of mass hysteria...but I doubt it.

I had my post-op meet with the doctor last week.  She assured me that fallopian tubes play no role in structurally supporting the uterus. There are lateral  muscles that do that, which are intact.  I have no reason to worry about prolapse.  The uterus was cauterized, it will not rip open.  Communication of hormones between ovaries and uterus has not been cut or diverted; the fallopian tubes never were a string between two cups.  They were only a path for an egg to travel from ovary to uterus.  The hormones commute through the blood.

So, that's it: it's done.  I feel solid and strong.  Who knows what the future will reveal?

Life goes on.

Saturday, May 26, 2018

The Continued Story of One Woman's Essure Ordeal

I made an appointment with an OBGYN in Platteville, Wisconsin--one hour and ten minutes' drive from where I live.  I gave myself plenty of time to get there, which was fortunate, because somewhere on Hwy 51, my map app directed me to take a certain exit, which I questioned, but took anyway because I was going 70mph.

I don't know why my phone suddenly decided to change course, adding another 15 minutes for a more scenic route.

Siri did not pipe up one exit prior and say, "Hey, Jess!  We have time; would you like to take a more scenic route to get to Platteville? I know how much you enjoy dairy barns and driving through obscure country towns."

I do enjoy seeing old barns, but I would have liked to have been consulted about this change in plans. The whole time I was cruising around the countryside, I kept wondering if this could possibly be the quickest way to Platteville, or had I been redirected to something worse.

Eventually, I realized I was on Rte A, a long sinewy road that meanders through every town between Hubbardston and Mineral Point.  I could have stayed on highway 51 and passed Mineral Point fifteen minutes earlier, instead of emerging from an endless country road into downtown Mineral Point, and having to drive all the way through downtown Mineral Point going 25mph, before finally being regurgitated onto Hwy 51, headed to Platteville.

I wasn't worried about getting to Platteville on time, and yes, it was a lovely drive.  But it wasn't the route that I had originally chosen.  I felt like my phone had taken that decision away from me.

I suppose, I didn't have to take that exit off of Hwy 51, but then again, I'd never been to Platteville before, so I can be forgiven for putting my trust in a satellite far above the earth.

Honestly, sometimes, I want to try to live without my cellphone and computer, because it feels like I can't have a thought without it being marketed back to me in one form or another.

I joked about going to Antarctica in an email to a friend, and since then I have been deluged with spam about touring Antarctica.

It's very Big Brother.

The other day, I was thinking about carpeting.  Just thinking about it, not saying anything, not doing anything.  And, creepy as hell, within 24 hours, I'm receiving spam about area rugs like the ones I had envisioned in the supposed privacy of my head.

And yet, here I am, tapping away at the keyboard, putting it all right out there online.

But at least this is information that I am choosing to make public.

I have decided to share this story for the benefit of other women, (as well as my own benefit, because for me, writing is therapeutic), and that's the difference.

I never asked for information about touring Antarctica, and I never said or wrote a peep about area rugs or preferring the longer, scenic route to Platteville.

I digress.

I had a very frank and open discussion with the OBGYN about my concerns regarding the Essure device as the likely cause of my autoimmune disease (which presents a wide range of symptoms, ranging from shooting pain across the bridges of my feet, to mid-day fevers and fatigue, headaches at night that feel like concussion in slow motion every time I roll onto my other side, Vitamin D deficiency, anemia, insomnia, brain-fog, joint pain, etc.,.)

The doctor had an energy different from mine.  It would have been clear to anyone, no matter what she and I had been wearing, that she was the fixer and I was the broken.

We agreed that I would probably feel relief from all of those symptoms after the Essure coils were removed.  But neither of us could guarantee, or be guaranteed of, that result; so, we formed a kind of forward-looking and hopeful bond in which I was the eager patient and she was the doctor who was probably going to fix most of what was wrong in my body and much of what was wrong in my life.

In the course of this discussion, she suggested that I consider ablation as a procedure to deal with my irregular and heavy periods.

Ablation, the removal of the uterine lining, is a far less radical procedure than, say, removal of the uterus.  I had read about ablation as an alternative to total hysterectomy; and I was a fan of ablation as an alternative to hysterectomy.

I agreed to have two procedures: The removal of the Essure coils, and electric ablation.

To remove the Essure coils, they will tilt the gurney or operating table so that my head will be lower than my feet.  The idea is that gravity (probably with the aid of massage and the introduction of gas to my abdomen) will attract my guts away from the reproductive assembly.

(I'll be unconscious, by the way, thank God.)

Right, so, they add all this gas to distend my belly and create a space in which to work (you know: like an artist's studio).

They will thread a camera through my bellybutton--presumably, not some boxy old Polaroid, and cut two five-centimeter-wide incisions, or ports (so nautical), a few inches to the left and right of my camera portal.

They will see with the camera and feel with (I don't know with what, their fingers?) exactly where the coils are located--whether they are where they should be, in the fallopian tubes, or whether they've migrated or perforated or motivated somewhere else, hopefully nearby.

Assuming that everything checks out, and my ovaries are in decent shape, they'll remove just the fallopian tubes, which should house the coils (one in each), and then they'll cut away the corners of the uterus into which the coils typically poke out from the openings of the fallopian tubes.

The trick is not to tug or pull on the coils--and certainly not to break them.

There are tiny filaments attached (hopefully, still attached) to the coils that were intended to create an inflammatory response in the fallopian tube--to encourage a scarring response around the coils, which is supposed to anchor them there in place.

But, as I think I mentioned in my earlier post, these filaments are what I believe to be responsible for the inflammatory response throughout my body--the whole Lupus series of events.

If they pull or tug on the coils, those filaments could easily become dislodged and drift through my body forever on the lazy river of my circulatory system.

So, best case scenario, I lose the fallopian tubes but keep the ovaries and most of my uterus and all of the rest of the stuff I was born with.  (You'll have to tune in later to find out what really happens.)

And then, Part II, Ablation.  The cervix is dilated to eight centimeters.  I was prescribed a vaginal suppository to use the night before to soften up the cervix in preparation.  They would insert a thin metal rod-like thing which, once inside my uterus (which they've somehow pre-measured), opens up like a paper umbrella in a colorful drink to the width of my womb.

And then they zap the uterus with a precisely portioned measure of electricity, effectively toasting the lining of my uterus.  The whole procedure, from insertion to maitai, takes 90 seconds.

As I drove directly  home (Hwy 151 East the whole way, no exits), I juggled a lot of feelings.  They were able to schedule the surgery for the exact day that I wanted, and I was happy about that.  I liked the surgeon and felt that she heard me and validated all of my concerns and the reality of my experience.

Several times, she had said that she was sorry that I had lived with so much illness for so long (six years).

I wasn't sure whether she was apologizing on behalf of the entire medical community, or simply conveying sympathy for my regrettable circumstances--which might have been fixed earlier, if I had come to her years before--say, in 2015, when the Essure law suits and newspaper articles first began to take root.

I was late in making the connection between my health trouble and the Essure coils.

I was late to the whole discussion about the side effects of Essure and the rush to get it to market.

I was one among hundreds of women whom this doctor had rescued from the coils over the past several years.

She wanted to assure me that everything would be okay, but, for medical and ethical reasons, she could only give me hope.  (It's possible that I just have Lupus.)

And I was eager to express my gratitude to her for her sense of urgency, and for seeing me so quickly and scheduling my procedure so soon.

"It will be awfully nice if this is the reason for all of my auto-immune disease," I said. "I had really expected it to shorten my life."

On the drive home, I felt eager to have the procedure, and full of hope for the very real possibility of having a completely different narrative to my life story: It would be longer, stronger, with much less pain and more energy. It would be a life in which I would be healthy for years to come. My mother would not have to worry about outliving me.  I would be able to guide my son through life until he is mature and wise.

Me: Not broken.  Here.

But there was another thought in my head: spoken by a small, wobbly voice.  And she was saying: No.  No ablation.  No ablation. I don't want ablation.  No ablation.

How badly did I want my periods to go away?  How much did I care about that?  At the time it had  seemed like such a casual decision: electrocute my uterus.

Had I been thinking about ablation before I walked into the doctor's office?  Maybe.  I wasn't sure. I knew what it was.  I knew why women had it.  Had I wanted one?  Had I given a thought to ablation one way or the other?  And why did I say yes, if I hadn't?

The ablation procedure: It felt like another turn off to a different route.  You'll like Route A.  It's longer, but bucolic.  You'll like the views.  You have the time.  

Why not have ablation?

That night, as I slowly drifted off to sleep, that still small voice in my head became emphatic:  NO ablation.  NO ABLATION.  NO Ablation!!!  A girl, throwing a tantrum, becoming hysterical.

Okay, okay, okay!  No ablation.

Did you hear me?  Stop shouting.  I said, we would not have ablation.  I promise.

But she was beside herself.  I could feel how hurt she was.

I'll call first thing in the morning and tell them, no ablation.

The last thought in my head, before sleep: No ablation.  No ablation.  No ablation.

The next morning, as I sat at my desk, prepared to clock into my work, I put down the pen and picked up the phone.

I left a message on the doctor's voicemail, to make it official and final.  I would have the Essure coils removed.  I did not want the ablation.  I would not the ablation procedure.  If she had any questions or concerns about that, she could call me.  And I would tell her.  No ablation.

Tuesday, May 15, 2018

The Herstory of Hysterectomy: A Horror Story

For those of you in Ukraine and Russia who drive up my blog stats but don't follow me on FB because you're robots, let me catch you up.

Here are links to articles I've shared on FB about the appalling rate at which women in this country have unnecessary hysterectomies, and to which I refer in this post:,8599,1644050,00.html

What started me on this hysterectomy jag was the video about the Essure device (see link from Chicago Tribune) in which Dr. Brett Cassidy talks about 100 women coming to him complaining about the onset of Lupus-like symptoms after receiving their Essure implants.

After he surgically removed their Essure implants, all of their symptoms went away--except when some tiny part of the implants (two coil-shaped medical devices with delicate inflammatory filaments attached) was left behind; in those cases, he had to go back in and surgically remove any remnants of the coils and associated filaments. Once he had successfully removed all traces of the Essure coils, symptoms of Lupus (fever, fatigue, pain, headaches, tingling, numbness, and anemia) just stopped.

I had read articles about the side-effects of the Essure device recently, but Dr. Cassidy's testimony in particular described my situation exactly, leaving little room for doubt that the Essure implants in my body are the likely cause of what my rheumatologist broadly refers to as Lupus.

For a host of reasons, it would be nice not to have Lupus.

So, I'm looking into having the Essure coils removed from my body. I have an appointment on May 22, with an OBGYN in Platteville--one hour's drive away.

She was recommended by other Essure "sisters" on the "Essure Problems Facebook" as a doctor who understands about the complications this device can present--unlike my rheumatologist and GP, who claim to know absolutely nothing about Essure at all.  (Apparently, they do not read.)

In the case of my rheumatologist PA, I found this gap particularly disappointing. She should be asking her patients if they have had Essure implants, and, if so, what was the timing of the implant relative to the onset of auto-immune disease.

If, as we are discovering, some women find complete relief from auto-immune disease with the removal of Essure coils, shouldn't that be discussed at some point in the rheumatological relationship?

Apparently not. (Clears phlegm from throat.)

I have to drive an hour east to Platteville to see a doctor who is willing to have that conversation.

I suspect I will have the Essure implants removed.

You might think I would be excited about this: a cure for all my ills.

You would be wrong.

I am not at all jazzed about the prospect of a hysterectomy. Surprisingly, I do not take a casual view to losing my reproductive organs--or any organs, for that matter.

Yes, I know that one in three women have a hysterectomy by the time they reach sixty.

One in three.  

At a glance, that seems like too many women having hysterectomies.

By comparison, what ratio of men have vasectomies?  One in ten.

My friend refers to vasectomy as the bag-of-peas procedure.  It's an outpatient procedure followed by a frozen bag of peas applied to the sutured area.

Maybe it would be more appropriate to compare vasectomies to tubal ligations.  One in four women, according to the link below, have tubal ligations. One in four.  Nowhere near one in ten. Not even close.

But what is a hysterectomy?  It is the removal of the uterus.  It may or may not include, as indicated, removal of fallopian tubes, ovaries, and cervix, too.

Since the late 1990s, there have been several alternatives to the wholesale removal of a woman's reproductive organs.

For example, a woman who has problems due to fibroids in her uterus may opt to have the fibroids removed, and keep her uterus.  Or, she may opt to have the fibroids and her uterine lining removed--but not the uterus.

Fact is, this kind of creative thinking is frequently discouraged.  Instead, a more casual attitude toward the inevitability of the total hysterectomy is encouraged.

However, in order for a woman to exercise free choice, which may include opting to keep her bodily parts, she needs to know that she has options.

The 1997 New York Times article (in one of the links above) noted that too many women (1 in 3!) are having hysterectomies simply because they are not being advised of their options and because...Well, it's easier just to take the damn uterus out.

Removing the uterine lining requires a level of surgical skill beyond the middling average.

And why bother become a more skilled surgeon if you can just take the whole thing out and be done with it?  (Just don't mention the other options and she won't know the difference.)

But there are alternatives.  You can go under the knife and have your reproductive organs removed in the manner of a c-section.  Or you can have laparoscopy.

Now, with the laparoscopic approach, you have a menu of options:

You can have a robot do it, but some people think that a skilled human surgeon is better than a robot, on average, by one or two sutures.

You could have a robot-assisted procedure, and that might be ideal.  You're in a pretty swank operating arena if that is on the menu.

You also have the choice of whether to have your reproductive organs removed through your abdomen or through...You want to sit down for this...through your vagina.  Yes, that's what I said.

Your uterus, cervix, maybe fallopian tubes, maybe ovaries, all passing ironically through the birth canal and out of the maternal body.

If you ask me, it's grotesque.  I don't appreciate that kind of irony on my body.  Even in books and movies, that turning of a woman's maternity inside out, the morcellation of her womb, the birthing of...God!  It's distasteful and revolting.

How do one in three women sign up for that?  How is this just a problem for me?

We haven't touched upon the possible side effects yet.

You really don't want to know.  But I will tell you anyway.

The worst possible side effect is having your intestines fall out of your body through your vagina.

This happens not immediately, but later, because the internal structures of support that once held everything in place are no longer there.

For that reason alone, if you can remove the uterine lining but not the uterus, all the better. Not only will save the uterus, which has a role in hormone regulation, but you will avoid (with any luck) experiencing vaginal prolapse.

(Vaginal prolapse can also result from giving birth to children, which can make everything kind of loose up there, and which used to be a shockingly common malady among middle-aged women before birth control was widely available, requiring many fruitful women to spend the remainder of their lives cooped up and sitting down.)

The ovaries, but also, science tells us, the uterus and fallopian tubes--the whole reproductive kit, as it were--are useful beyond their child bearing function.  They in fact belong in a woman's body and play a role throughout her life, if allowed to remain in situ.

There are sound medical reasons why some women's uterus (uteruses? uteri?)  cannot be saved.  In those case, let's hope that she may keep her ovaries--which play a key role in regulating hormonal balance.

Hey. Without hormones, there is no sex drive.  Without hormones, we are miserable.  If you can keep your ovaries, you won't need to prescribe to hormone replacement therapies for most of the rest of your life.

If we can keep our cervix, for God's sake, let us keep our cervix.  It is part of the structural integrity of the vagina and may allow a woman to avoid the misery of vaginal prolapse.

If we can keep our fallopian tubes, and the muscles surrounding our uterus, and our ovaries, then we will, in every sense, be structurally and in every respect more intact.

It may be easier for a mediocre surgeon to take everything out, wholesale.  If he is a surgeon who has, through hundreds of hours spent dissecting cadavers and cutting into living breathing bodies, lost his empathetic feeling for women's maternal organs, let him try to imagine the contents of his own testes run through a morcellator and dragged through the diminutive canal of his own prolapsed vagina (also known as a penis).

I'm not even going to get into the whole highly political matter of vaginal reconstruction or... (eyeballs rolling, gag reflex, deeply violent emotional response) hymen restoration.  Suffice it to say, both have been, to my everlasting outrage, medically normalized.

As the 1997 New York Times noted, there are too many unnecessary hysterectomies occurring in this country.  One in three women.  In the years to come, the article optimistically projected, that figure should be reduced, because there are now so many more options for dealing with different types of issues that a woman may have--options are that are less intrusive and much less radical.

There is rarely a reason to have a total hysterectomy, and compelling reasons why you shouldn't.

And yet...

And yet, twenty-one years later, with all of the alternatives to hysterectomy available from 1997 added to all of the progress of science introduced over the last twenty years, isn't it shameful and appalling to discover that the statistic for women having total hysterectomies in this country has not changed one iota.

If anything, the numbers have increased.

One in three women have a total hysterectomy by the age of 60.  We treat it like it's nothing.  We treat women like their maternal organs mean nothing.  We treat women this way.

Wednesday, April 11, 2018

Hard Lessons: Learning to Defend Our Bodies, Privacy, Lives

Yesterday, I received a letter in the mail from a "R___ M___" at "M___ Properties," at an address in Fitchburg.  "I am interested in buying your house," he said. "I have cash.  We can close soon. You don't have to fix it up, I will buy it as is. Call me!"

The name was fake. M___ Properties doesn't exist. The phone number belonged to an old man who had recently died. The letter was mailed from Milwaukee, not Madison, or Fitchburg.

And yet, my name and address were on the envelope. Creepy.

I hadn't shaken that creepy feeling when I read an article in the New York Times about Essure, a tiny coil-shaped contraceptive device.

This is how the Essure device works:  Two tiny coils are placed in each of two fallopian tubes, creating scarring, blocking the opening of the tubes, and preventing a woman's egg from reaching the uterus during ovulation.

The coils are supposed to remain in the woman's body until they fall away naturally, through the process of post-mortem decomposition.

Tens of thousands of women, the article said, have been reporting various unpleasant side effects from this birth control method:  One or more coils have broken apart in their bodies and become embedded in their uterus, or elsewhere.

Some women report having an allergic or auto-immune response to the nickel in the device.  Nausea, headaches, aching joints, fever and fatigue are among the list of side effects.

Many women have had the Essure coils removed, but that is not a simple operation. Assuming the coils have remained in place, the surrounding scar tissue needs to be cut away, along with the device, and then the fallopian tubes are either removed, along with part of the uterus, or they are carefully reconstituted  by a talented surgeon.

When the fallopian tubes and part of the uterus are removed, it leaves a woman vulnerable to uterine prolapse, an unhappy situation in which gravity causes the uterus to more or less collapse.
There's a tiny screen-like device frequently employed to prevent uterine prolapse, but that device has been implicated in its own impressive list of miserable side effects and unintended consequences (lawsuits, etcetera).

I had the Essure device installed in May of 2012.  By January of 2013, I started experiencing the onset of autoimmune disease--specifically, Sjogren's, plus what they call an undifferentiated connective tissue disorder with possible organ involvement.

There's probably no way of knowing for sure that the Essure device is or is not causing any or all of my auto-immune issues, just as there's no way to know for sure whether I do or do not have Lupus. (My rheumatologist keeps talking about Lupus as though I have it.)

I'm not saying I don't suspect causation, given the timeframe.  But, there is enough auto-immune disease in my family to suggest that the cause could be genetic. And, given how little we know about auto-immune disease, I don't expect to have satisfying answers to my many questions--some of which are quite new--anytime soon.

But what really galls me is how Bayer, the company that owns Essure, and the FDA, took such flimsy precautions before introducing a product to the market that could potentially make women very sick, or even kill them.

For a device that is supposed to remain in situ for a woman's entire life, and which is comprised of three different types of metals (nickel, titanium, and stainless steel), and which we now know is delicate enough to actually break into pieces in a woman's body...wouldn't you think that they might have tested the device for more than two years?

At the point when they released the Essure product to market--with reimbursement incentives in place for its implementation--Bayer had no idea what could happen with these little metal coils that had been implanted in a woman's body after five years.

I remember,  I had to take all of these medications starting 24 hours before the procedure.  My husband had to drive me to the hospital, because I was supposed to be woozy, although I don't remember feeling woozy.  Once there, I was outfitted with more drugs.  I was to be upright, conscious, but on a lot of drugs, so  I was confident that I wasn't going to experience much discomfort.

I was wrong.  My right fallopian tube went into spasm.  It was excruciating, but the doctor pressed on and finished the procedure in what felt like six hours, but may have been six minutes. I was in agony the entire time.

I have had my share of pelvic inflammation and cramping.  The fluttering fallopian fiasco felt worse than bad cramps that feel like a waffle iron burning in your pelvis. It was just as intense as that, but sharp, and relentless (unlike cramps, which come and go in waves, like a cruel tide).

I had a follow-up appointment some months later to make sure that the scar tissue had formed around the coils, and that the coils had properly colluded and created a barrier at the opening of the fallopian tubes.

That procedure was also extremely unpleasant, but for different reasons.

The doctor asked me if I minded if a resident at this teaching hospital, a man, observed the procedure.  She said he would stand off to the side, preserving my privacy.  I agreed.  But in fact, my privacy was completely discarded.  So, basically, she had lied to my face, confident that I would not point this out, protest, or complain.

And she was right: I said nothing.

Not surprisingly, her technique with the ultrasound wand was harsh.  It felt like I was being assaulted.

She had to be a little rough, she said, to make sure that the test was done correctly.

It's just one of those things that you continue to wonder about for the rest of your life.

I feel like, as a young woman, and as a girl growing up, I was always prepared to disconnect from my body, if necessary.  Whether it was at my first or twelfth appointment with a gynecologist, or whether I had agreed to do something physically or sexually that I wasn't particularly happy about, there was always the sense I had that my body wasn't really me.  That way, if something bad happened to it, it  happened only to my carapace, and not my spirit.

I don't know when or why I came up with that idea of disconnecting from my body, but it was there very early, and it helped me get through some awkward and trying times.

The problem with that perspective is that it led me to do things or to let things happen that I might not have done or let happen if I had felt more respect for my body.

If I had thought of my body as something that belonged only to me, that was mine, my possession--in a real sense, my only possession--then I might have been less passive about defending its sovereignty at various times in my life.

Perhaps, I learned to objectify my body--to think of it as a carapace--in response to being called fat or chubby as a kid.  It may have been a defense mechanism against identifying too closely with a body that some people evidently found disgusting.  It may have been a defensive response to other forms of unwanted attention that my developing body would later attract.

Sometimes, and for different reasons, my body seemed like a distasteful costume that I was forced to wear in public--not something that I should enjoy or be proud of.

But, nothing belongs to you so much as your body.  Not your child.  Not your clothes. Not your dog.  While we live, we have a body.

So, while it may bring me grief to love and respect my body when others treat it as though it belonged to them, or as though they enjoyed some kind of rights or privileges over my body that I did not  willingly or knowingly grant them...Still, despite that grief for injuries incurred, I think I would do well to respect and love my body anyway, and defend it more assertively against those who would do me harm.

And now, I have to think about and remember again the ordeal I went through having the Essure device implanted: How my fallopian tube screamed bloody murder and sent stabbing pains of grief and rage radiating through my pelvis.  I have to think about the drugs, all of the drugs, that I took into my body because I was told to take them, though they did nothing except cloud my judgment.

Bayer conducted two years of testing, mostly on rabbits, before releasing Essure on the public.  It's enough to make you think that nobody--not Bayer, not the FDA, not the AMA, no attorneys general--cares very much about the health of women.

To the contrary, in fact, you might conclude that they really don't give a damn about anything, except money.

I am really angry with Bayer and with the doctors who promoted Essure, told me it was safe, and implanted it in my body.

But I am also mad at myself, and I think I should be.

I should have been more suspicious in the first place. I had had an IUD removed right before the implantation of the coils--during the same appointment.

Before that appointment, three doctors at three separate clinics had tried unsuccessfully to remove my IUD.

Why, after the ordeal with the IUD, would I then agree to have weird little metal coils inserted into my fallopian tubes?  I must have been out of my mind!

When you think about it, it's related to the whole personal data Facebook fiasco.

India knew it wasn't safe to give personal data to FB, so they didn't embrace FB the way we did.

The EU sued Google for the right to disappear--the right to have one's personal stuff NOT online at all.  Europeans jealously guarded what they viewed as an incursion to their right of personal privacy.

But we Americans, no.  We took all the quizzes that told us who we were and, in return, we willingly relinquished all of our contacts and social network data.  Seemed like a good idea at the time.

We're a young country compared to India and Europe, and apparently, we have some growing up to do.  We're still in the process of figuring out who we are.  (That's why we had to take those quizzes.)

Maybe we could take a lesson from all of this, and become much more suspicious of things like GMOs (genetically modified food crops--which the European Union wants nothing to do with but we consume without question), pesticides (which are giving us cancer but we refuse to worry about it), K2 (artificial marijuana--a GMO sprayed with pesticide which we smoke as if it were pot though it kills us).  Maybe we shouldn't take every medication our health providers recommend because they have a financial incentive for promoting pharmaceutical products.  And finally, maybe we should say no to having weird little fish hooks inserted inside our bodies that are supposed to stay there forever, like shrapnel.

Maybe we should not be such dupes.

Take the letter I got from Mr. M___.  Totally fake name. Totally fake address. Totally fake phone number.  Very poorly written.

"Call me to discuss your options," he says.

I don't even know where to begin NOT responding to this letter.

What am I supposed to do, call a dead man and ask him how much he wants to pay in cash for my house?

What kind of fool does he think I am?  (Am I on a list or something?)

Anyway, I have no interest in selling my home. I like my home. It's where I live:  In my house, in my body, with my two little fish-hooks, coiled around a scar.

Friday, March 23, 2018


Where At All Other Times, They Riot  (2017-2018)

I walk through snow and woods to see
Trees collapsed in each other’s branches,
Held aloft by a notch or twig.

One has snapped in two,
Its splintered shards rising like
Pikes and steeples;
The trunk bent over
Like a gate, or a bridge.

To me, it looks forbidding.

But the dog wades out,  
Through nettle and thistle,
To the bridge of the broken tree.
She will return, covered in thorns.
It will take me an hour to pluck them.

Some trees land hard;
Others are caught up in another’s embrace,
As if it had been waiting
For that moment all along.

So much happens where I walk,
Peacefully, among trees,
Where, at all other times,

They riot.

Deep Winter (2012)

Deep winter.
Fatigue, unaccountable loneliness.

Other people flee to warm climates
Joyful, hopeful,
Sustained by anticipation.

And though this winter has been mild,
(I think I’ve shoveled twice)
I see nothing to photograph:
A bare oak in a field,
Vacant nests among branches;
A red-tailed hawk perched on a wire
scanning the ground for a meal. 

It’s Tuesday.
Valentine’s Day.
I feel a sense of loss
And the beginning of the flu.

Tired, unsentimental,
Memory does not serve.

A bench in winter, covered by snow:
Unwelcoming. Solitary.

My thoughts, far from God,
Run cold.