(If you’re here for the perfume, you’ll be disappointed today.)
Photo by Julia Maudlin at Flickr, Creative Commons license, some rights reserved. Photo may only be used with attribution and a link to the source. Click through for link.
My last post was about Essure and my gradual realization that many medical problems I had dismissed under the rationalization, “I’m just getting older,” or “I’m just fat,” may actually have been caused or simply worsened by a medical device that was rushed through FDA approval without adequate studies beforehand.
This post is about the timeline of hoops that I have begun jumping through, in order to reach the goal of having Essure removed.
1) In September 2017, after I find out that the FDA has recommended a black box warning for Essure, I decide to get rid of these things which have caused me so much insidious trouble. The doctor who placed my Essure (and delivered my first baby via C-section), retired seven years ago and I haven’t been to see another since. I call to request an appointment with another GYN, who is well-regarded, who used to practice with my implanting doctor, and who delivered my third baby, but it takes THREE MONTHS to get on her schedule. It’s now December 2017, and when I go in, she refuses to consider the possibility that all might not be well with my Essure. To humor me, she orders an ultrasound to locate my coils. I ask for a hystero-salpingogram (HSG) or an x-ray, so we can be sure they’re where they’re supposed to be. “They don’t move,” she says flatly. “Ever. Put that right out of your head. But I guess we can do an US, to make you feel better about it.”
2) I have the ultrasound in January 2018. It doesn’t locate my coils.
3) I see another doctor in my GP’s practice in March, for a sore throat that hasn’t gone away in two weeks. Unlike my usual GP, Dr. Kelly actually listens to me, considers a concern I have, and answers my questions without making me feel like an idiot and a fussbudget, instead of a woman with a bachelor’s degree who can understand some basic medical science. It is a revelation. There are doctors who do this? I NEED ONE OF THESE.
I notice that when The CEO began having pain in his ankle, Dr. Kelly prescribed an anti-inflammatory and sent him straight to physical therapy. Did I get PT for my foot and ankle pain? Did I get meds? I did not. I got the standard “Lose some weight and don’t wear those shoes.” I begin to realize that it might not just be me: my doctor might be part of the problem.
4) In May, I schedule a regular checkup and request to see Dr. Kelly instead of my regular doctor. The office manager tells me I can’t see him because he’s not my primary physician, and he’s not taking new patients. I’ve been seeing him, and other medical practitioners in this “family medicine practice,” for the past 20 years. How am I a new patient? “He’s not taking new patients, period,” the office manager says. I agree to see the female physician’s assistant. I weigh the most I have ever weighed, and I know I’m going to get fussed at for it.
5) I have my checkup with the PA. She listens. I think she’s skeptical, but she listens. We talk about Essure and my ongoing foot pain and my diet. She agrees to refer me to an allergist so I have testing done to see if I’m allergic to the materials in Essure. She agrees to test me for thyroid issues. She puts me on 9 Advil a day for 3-4 weeks, to combat my foot pain and inflammation. She suggests low-carb dieting, particularly because my blood pressure is creeping up. She suggests checking to see if my insurance will cover the new shingles vaccine, and she strongly suggests I get a screening colonoscopy. My blood work indicates no pre-diabetes or other issues. It also indicates that my thyroid is normal.
6) Into June now. The 9 daily Advil help so much that I actually do not feel like crap every day. The whole time I’m on them, I’m feeling good. I buy Chaco sandals. I put fresh plantar fasciitis-fighting insoles in my shoes. I don’t walk much, but I start water aerobics with the Fabulous Old Ladies at the Y, and sometimes I use the exercise bike. The pain in my elbow goes away. The pain in my right foot goes away. The pain in my left foot (always worse) is greatly lessened. I lose four pounds. I schedule my colonoscopy for the end of July.
7) I finish 3.5 weeks of daily Advil. The pain in my left foot is still there. I make another appointment with the PA. My appointment with the allergist will not be until August. I ask about the endocrinologist, and the PA sighs and says that if I really want an appointment she’ll try to get me one, but she doesn’t think there’s anything wrong with my thyroid. I ask about a referral to the podiatrist, and she says she’ll order one. She also orders an x-ray of my left foot, to see if I have bone spurs. My BP is up to 140/103, so she wants to put me on lisinopril.
8) In June/July, 10 mg lisinopril makes my BP go down to 120/85 most days. I read on the Essure Problems group site about a woman who had been suffering for days with pain in her pelvic area, until she was taking a shower and felt a sharp pain in her vagina. She reached down and found… yep. One of her Essure coils. Go right ahead and tell me “they don’t move,” Dr. Howell. Sure, they’re not supposed to. But that doesn’t mean they can’t.
9) In May, Carilion’s medical records archives unit cannot locate any records of the placement of my Essure, which is part of what Dr. Monteith in NC needs in order to talk about scheduling Essure removal. I call the office twice in June and get a response of, “Oh, sure, I’ll call the archives in Roanoke and tell them what we need. We’ll call you back,” both times. Neither person calls me back. In July, I go to the hospital for my x-ray, and stop by the medical records office to ask one more time. I get, “Oh, sure, I’ll call the archives in Roanoke and tell them what we need. We’ll call you back.” I also get a printout of the doctor’s transcribed notes from the procedure, which might be most of what I need, but it does not contain any of the pictures taken with that teeny camera, showing the coils in place. I do not get a call back, either. (Third time. Carilion medical records, you suck.)
10) July. The x-ray of my foot indeed shows bone spurs. Yay. (“Don’t wear those shoes” seems horribly callous to me right now. I’ve been having pain for three years. Did I get sent to physical therapy? Noooooooo.) The pelvic x-ray shows two Essure coils that seem to be intact and approximately in the right place. (Which is relatively reassuring, but also a potential block to getting someone other than the elective surgeon to remove them.) I talk to Dr. Monteith’s office staff about sending them the disk with the x-ray results on it. I fill out the preliminary form and email it to the office. The scheduling nurse calls me back and says that my BMI is too high for the surgery there.
11) The endocrinologist’s office in Salem is overwhelmed because another specialist in the area retired, and they refuse to see me for a full thyroid panel, saying I can just see my GP. (Who thinks my thyroid is fine, and never mind that my mom needed a full panel to be diagnosed.) Also, I am too fat for the surgery to remove the thing that made me too fat in the first place. If this is not discouraging, I do not know what would be.
12) I will keep my appointment with the allergist August 31. I may have recourse to removal if my tests show sensitivity to nickel. My dad says he will ask his endocrinologist if he’ll agree to see me since I’m getting the run-around.
13) I decide to try to lose the 50 pounds it’s going to take to get my BMI low enough for Dr. Monteith’s surgery. I may fail — Lord knows I’ve failed to lose weight often enough in the past — but I am going to try, and try really hard. It’s not going to be fun.
I check out the Paleo diet my college friend Heidi says works well, but it doesn’t allow cheese. That’s not going to work for me. I check out the ketogenic diet that a friend from church is on for his diabetes, but I do not think I could manage that food plan for the time it’s likely to take. I decide to do South Beach (the original reduced-carb/low-fat one from cardiologist Dr. Agatston’s book, not the new one where they sell you food like Nutrisystem) again. I lost about 20 pounds on SB a few years ago, but as soon as I started eating carbs again the weight came right back. I am going to have to say goodbye to favorites like mac-n-cheese and cake, like, forever. I mean, I can live without fruit for the first two weeks, and I can skip carrots and corn and beets for a while, and I can live indefinitely putting my fish tacos and burgers and sandwiches on lettuce leaves instead of tortillas or bread. I can probably live with pizza made on a cauliflower crust. (Although I LOVE beets.) But no baked potatoes? ever? 😥
14) I go for a walk the third day of my diet. My feet feel okay, and I go fairly slow for forty minutes. The next day, my left foot is killlling me, and I’m limping around as badly as I ever did. It occurs to me that the GP’s office has never gotten around to referring me to the podiatrist and I will have to call myself. AGAIN. I need a new doctor.
15) I call Dr. Monteith’s office back and ask if I can stay on their list. Sure, the scheduling nurse says. They’re expecting a rate increase (up from $7500) next spring, but they hold on to records for at least two years, so if I want to start an account I can do that. I say yes, please.
16) In late July, I see the podiatrist. Yep, I’ve got plantar fasciitis. I get new insoles and a prescription for anti-inflammatory meds. The insoles don’t really help. The hard massage ball does. The stretching does, a little.
17) On August 10, I manage to get in to see my dad’s endocrinologist in Roanoke. Dr. Bivens says that while I do have some of the symptoms of hypothyroidism, he doesn’t think that I have it, but we’ll wait for the labs to come in. My full thyroid panel comes back normal. Dr. Bivens suggests a sleep study; I could have sleep apnea. (The sleep tracker on my Fitbit seems to fit a fairly normal pattern most nights, but it’s not a real medical diagnostic tool. We’ll see, I guess. As of now the sleep study is not yet scheduled.)
Summary to date: There are likely more hoops to come. I am very lucky that The CEO has good health insurance.
I have currently been on the original South Beach Diet for one month now, and I’ve lost eleven pounds — that’s 15 pounds down from my heaviest. I’ll need a lot of support, but I continue to press toward a lowered BMI so that I can have surgery. That will be forty pounds from now.
(As a show of support for me, please do not send me chocolate. Or chocolate-scented perfume, for that matter. I will take commiseration, prayer, and hugs.)