In Lieu of Recent Scent Diaries

So, heads up: medical stuff goin’ on, y’all. Life stuff, really. Sorry, no perfume at this point, though I hope to get back to it eventually.

A few years ago, I stopped getting regular checkups. I got discouraged at hearing my doctor say to me, “There’s nothing wrong with you. You just need to lose weight. Eat less. Exercise more.”

And when I would say to him, “Look, my feet hurt. I’m tired all the time. I’m not eating burgers and ice cream every meal; I eat grilled chicken and veggies; I try to eat healthy. I’ve been on a diet. I’ve been exercising,” he would say, “Well, eat less. And exercise more.”

I asked for a thyroid test, since I have a strong family history of thyroid disorder on both sides. “Your tests are normal,” he said. “There’s nothing wrong with you, except you weigh too much.”

The pain in my feet and ankles? “Lose some weight. And don’t wear those shoes.” (The shoes in question were not flip-flops or flats; they were a sturdy pair of leather mules with 1 1/2″ heels and arch support.)

The numbness in my hands? The brain fog? The constant fatigue? Could I please have a referral to the endocrinologist, because I’m the same age my mom was when she was finally diagnosed after 8 years of symptoms and “normal” test results, with a full thyroid panel? “Your thyroid is normal. No.”

The intermittent pain in my abdomen on the left side, the one that felt like something inside pinching me? “I can’t feel anything there. There’s nothing wrong with you.”

What about this rash on my upper arms, that I keep getting especially in summer when I’ve been outside? “Sun sensitivity. Cover your arms up. Wear sunscreen.”

And so my doctor secretly labeled me a complainer. A fat complainer. A fat, lazy complainer. A fat, lazy, non-compliant complainer. I got used to asking questions and being told not to worry about it. It was all in my head. There was nothing wrong with me.

Just lose some weight, and don’t wear those shoes.

I was tired of the not-so-secret judging. I quit seeing the doctor, unless I had a illness that needed medication. I do realize that this was an ostrich kind of move, but I don’t know if I can explain how much it affected my confidence, knowing that my doctor thought I was a big fat whiner and didn’t believe my pain or concerns were worth investigating.

Then I got a big wake-up call last August from an unlikely source: Consumer Reports magazine. See, I thought the vacuum cleaner was dead (as it turned out, it had just gotten too hot). I had gone to CR’s website to find their vacuum ratings — and found a gigantic ominous banner across the top of the website saying something like, “Essure Black Box Warning.”

My immediate reaction: Oh gosh. I have Essure. I’ve had it for, what, 10 years? What’s wrong with it? I haven’t had any problems with it.

So I go read the brief article, which says something like, “The FDA has recommended a black box warning for the Essure device. A black box warning is the strictest warning put in the labeling of prescription drugs or medical products by the Food and Drug Administration when there is reasonable evidence of an association of a serious hazard with the drug or product.”

My immediate reaction: Oh wow. Serious hazard? Well, I knew that it might not work, and I did have to sign a waiver thingie before Dr. Young put it in, about understanding that it might lead to complications. But he said that complications were super-rare, and that this was a good option for me, given that I was aging out of birth control pills and I had a history of IUD failure¹.  Essure wouldn’t involve surgery or hormones; it was all done in the office, so that must’ve been safe, right?

¹And thank God for that, or we wouldn’t have Taz. He was an unexpected blessing.

So then I go read this article, “The Consumer’s Guide to Essure Birth Control,” at Consumer Reports, which details the serious complications many women have with Essure. (It’s short. Go read.) I’m not convinced yet — but I’m wary. So then I go and look up the Facebook group called Essure Problems. I ask to join. I read the posts. I’m thinking, Wow, these ladies are very quick to say that Essure caused all their health problems. Gynecological ones, sure, that makes sense. But other stuff? I don’t see the correlation. And I have not had any serious gynecological problems.

There’s a frequent commenter on the page who says, “If you didn’t have it before Essure, it’s because of Essure,” often, probably at least once a day, and I still think that’s too simple. It’s bad science to rely solely on anecdotal evidence; commonality is not causality. Women who have never had Essure do develop illnesses, after all. I had my gallbladder out before I had Essure, for example, so I’m not sure we can say that every single case of gallbladder disease developing after Essure is definitely due to it. I am skeptical.

Two days later, someone posts, “Anyone having pain on the tops of their feet? Like the tendons on the tops of their feet are strained and inflamed?” and my jaw drops. I have that. Sure, Dr. Kincaid said not to wear those shoes, but I get those pains even when I wear good supportive athletic shoes, with good supportive insoles. And in real time, within 20 seconds twelve people reply, “Yes. I have that.”

The next day, two other people are talking about how their upper molars are just crumbling in their mouths, and how their dentist thinks they grind their teeth at night, and that they must never brush or floss. Eight others mention a metallic taste in their mouth. A doctor in the group comments that he thinks that Essure changes the chemistry of saliva.  And my jaw drops, because I have that. I’ve had that metallic taste in my mouth since 2006! Less than a year after I had Essure put in, I lost two upper molars which just cracked for no apparent reason. My dentist has given me a night guard, which probably saved a third upper molar via a crown procedure last year ($1200, thanks very much).

So I read some more, and I research some more, and it becomes clear to me that Essure is at the very least an agent provocateur in kick-starting medical problems that might not have developed, or might have developed later in life. In particular, it seems to be associated with problems in a few broad areas:

1) Gynecological. Heavy and too-frequent menses, early menopause, cysts, pain with sex, uterine/cervical/vaginal atrophy or enlargement, ectopic pregnancy, device migration, endometriosis, unexplained sharp pains in the abdomen, puncture of uterus or fallopian tubes, frequent UTI’s, repeated yeast infections or bacterial vaginosis resistant to treatment, etc.  I have some of these symptoms.

2) Auto-immune and unspecified inflammatory. Auto-immune, Hashimoto’s, thyroid, Crohn’s, gluten sensitivity, IBS, gallbladder disease, allergies (particularly to metal), weight gain resistant to diet and exercise, tendonitis, etc. I have some of these symptoms.

3) Dental. Severe cavities, teeth crumbling, gum disease. I have these symptoms, too, after decades of good dental hygiene and good teeth.

You can read more about Essure and its incomplete studies here, in an article from the New England Journal of Medicine.

If you have Netflix, you can check out a documentary called “The Bleeding Edge,” beginning July 27, about how the Essure device was rushed through FDA approval and how it has ruined thousands of women’s lives. As of a few weeks ago, Bayer — which bought Conceptus, the company that originally produced Essure, in 2013 — announced that they would end sales of Essure in the United States as of the end of this year, due to declining profitability. (Interestingly, or maybe suspiciously, the current head of the FDA, Scott Gottlieb, was a significant investor in the company that originally brought Essure to market in 2002 without a study of its long-term effects.)

So once I figure out that my Essure coils might be contributing to health problems, I get to researching how I can get them removed. Typically, a doctor would do some laparoscopic surgery, reach in with forceps or whatever, and pull out the thing that’s causing problems and then sew you up — but that would be a disaster. If Essure coils are cut or pulled or tugged in any way, that is likely to leave both metal fragments and PET fibers behind, and many women who had their coils removed have had excruciating medical problems dating to the improper removal. If you want to have them out, and they are “in the right place,” that is, mostly inside the fallopian tubes with a small portion trailing into the uterus, you will need at the very least a bilateral salpingectomy (both tubes removed) with a cornual resection (upper part of the uterus removed), or salpingectomy with hysterectomy (removal of the uterus and possibly the cervix as well).

Removal is a big problem for me. I don’t have any of the gynecological disorders that would induce an OB-GYN to agree that I need a hysterectomy.

Then I found out that there’s a doctor in North Carolina who, though primarily focusing on reversing tubal ligations in order to restore fertility, also removes Essure using microsurgery. He’s had good results in getting all of the coil without leaving fragments behind, and without needing to take any part of the uterus out.

So what do I do now?  I start jumping through the hoops. That’s been my year since last August, pretty much, and I’m going to detail it in the next post.

 

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4 thoughts on “In Lieu of Recent Scent Diaries”

  1. OMG! What a horrible situation for you. I totally understand your wanting more answers than a traditional primary care physician can usually provide, I’m glad you have started to find them. Hope on the horizon. Sending positive thoughts your way as you navigate the next steps.

  2. I did watch that documentary, and my heart goes out to you. It was despicable of your doctor to undermine you, and I probably would’ve reacted the same way you did. Good for you for moving ahead now. I hope you find answers and relief.

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