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.