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.