Why You Can't Believe Everything Your Doctor Tells You

The whole point of going to the doctor is to get an expert opinion, but sometimes....

Last week, I had the joyous experience of coming down with Shingles. I knew that's what it was with a few clicks on my computer, but of course, I had to go in to a doctor's office to get an "official verdict" and get the anti-viral medicine that I needed. Since it was the weekend (of course), I ended up at an urgent care facility. The staff were very nice and the doctor very quickly confirmed my diagnosis. But the part that was weird is that she asked me, "Have you been around someone with chicken pox or Shingles? Do you know who you got it from?" And later, warned me to change my sheets frequently and keep my rash covered so that I wouldn't "give shingles" to anyone else.  And when I verified that I needed to stay out of the pool where I usually teach a water aerobics class, she said, "Yes. No pool. That's probably where you got it from."

So what's weird about all that? From all my reading, every source I'd found had been clear that you don't contract shingles from contact with the virus. You get it because the virus is already lying dormant inside of you.  From the CDC website:

"Shingles is caused by the varicella zoster virus (VZV), the same virus that causes chickenpox. After a person recovers from chickenpox, the virus stays dormant (inactive) in the body. For reasons that are not fully known, the virus can reactivate years later, causing shingles." ( https://www.cdc.gov/shingles/about/overview.html)

Furthermore, you can't give Shingles to anyone either. Shingles is contagious, but only in that you could give the virus to someone who has never had chicken pox and they could get chicken pox.  Again from the CDC:

"Shingles cannot be passed from one person to another. However, the virus that causes shingles, the varicella zoster virus, can be spread from a person with active shingles to another person who has never had chickenpox. In such cases, the person exposed to the virus might develop chickenpox, but they would not develop shingles." (https://www.cdc.gov/shingles/about/transmission.html)

It concerns me that the doctor I saw didn't know these simple facts about a very common disease (1 in 3 Americans will have Shingles at some point). I didn't bother correcting her. She gave me my prescriptions and I was anxious to be out of there. But it does leave a person wondering how often they are told completely inaccurate information by their doctors. 

It's certainly not the first time it's happened in our family. One time, years ago, I went in with a very swollen cheek and had the doctor diagnose it as an "infected saliva gland." When I followed up a few days later with my actual doctor (I'd seen her partner because she'd been out of town), she was appalled. She told me it was a toothache and that I needed to go see my dentist-- and she shook her head and said, "I don't know what she was thinking! The saliva glands are on the bottom of the jaw. Your infection is obviously on the top!"  And she was right, I wound up having a root canal. 

My husband went in to see his doctor once with a really bad sore throat. The doctor insisted it was just a cold and told him to go home and take some ibuprofen. He wouldn't listen to him when he insisted that it didn't feel like any cold he'd had or when he pointed out that he only came to a doctor's office about once every 10 years or so--basically only if he was dying. My husband wound up being admitted to the hospital a few days later with a peritonsillar abscess, but you know, it was just a cold.

And I could go on and on. I think we all could. Mistakes happen. I get that. But I get downright irate when I hear medical professionals complain about their patient's googling their condition. I've been told several different times NOT to look things up on the Internet. They act like we are children who can't handle this complex information properly so we need to leave it alone. But the fact of the matter is, with the right information we--who live in our bodies 24/7-- have a much better chance of diagnosing what is wrong with us than a doctor who sees us for five minutes. Rather than trying to keep patients away from information, it would be in everyone's best interest to make as much of it available to us as possible. And then they need to listen to patients when they say, "That just doesn't sound right" or "But that doesn't match _____." We might just save ourselves from a terrible medical error and save them a malpractice hearing. 

Female Urethral Spasms-- how well has it worked?

I thought I should do an update and let you know how my own personal battle against urethral spasms has been going.

The muscle-building exercises have definitely helped me a lot. I have felt better this past year than I felt in the previous 16! While I use to have some discomfort nearly every month at various times in my cycle, now I go many months between episodes. When I do have a little discomfort, it is mild and easily resolved with massage and manipulation to re-position the uterus. I've also had fewer problems with my digestive system-- less constipation and painful gas. I've realized that many of those problems were also symptoms of my uterus moving about, putting pressure places where there shouldn't be pressure and constricting passageways that need to be open. The stronger muscle wall keeps everything in place better so that happens less.

I've continued to use the heaviest egg-shaped weight for maintenance. I can hold it in for long periods of time-- even during exercise now. I've experimented with trying to make it heavier-- by dangling additional weight from it, but I've concluded that mostly works the outer edge of the pelvic floor muscles and I think those are strong enough now. It seems like most of my muscles are quite strong but there is still a weaker side, deeper in. I've experimented with trying to hold in a heavier glass rod-- with hope that that shape would require more uniform muscle use rather than concentrating on the lower sections of muscle--but it's harder to grip and takes very focused effort and therefore hard to work into my normal daily routine. And honestly, like I think most people, now that my symptoms are so much less, I am less motivated to put in the work. I've likewise been lazy with using my Minna Kegel exerciser. That also works the interior muscles and I need to get back into the habit of routine use. I would like to make sure I fully maintain the muscle strength I've built up and hopefully make it strong all the way around.

For the background info on my experience and more info on the methods I've found to address it, check out these other posts.

Background

Treatment without surgery

Exercise weights

Minna Kegel exerciser

Kegel cliffnotes

Miracle Pill?

I ran across this news article the other day which made some excellent points. It is about a very commonly taken drug that has recently been found to drastically increase the risk of depression in women, especially among adolescent girls. The article discussed why this new research hadn't created more of a stir.  It's a good read and if you haven't guessed, the drug is birth control. And the reason it hasn't created a big stir, because it is not politically correct to say anything bad about the magical pill that has freed women.

While the side effects of birth control pills apparently aren't considered very news worthy (or at least least not considered politically correct news), I don't think they are a big surprise to most of the women in the world. Female hormones are a messy soup we've all been dealing with since our teens and I don't think I've ever met anyone who has taken oral contraceptives who doesn't complain about some of the oh-so-fun side effects: depression, weight gain, change in sex drive, mood changes. I have met so many women who express hatred towards being on the pill.  There's also the deadly side-effects we try not to think about: the increased risk of certain cancers and the greatly increased risks of blood clots and strokes.

Personally, while I was on the pill I experienced morning-sickness-like nausea a few days each month as well as the weight gain, decreased libido, and mood changes. And after years of mostly being on the pill, when I stopped it to try to get pregnant I found my menstrual cycle was a mess. It no longer cycled on it's own. After waiting for many months for it to resume, I finally resorted to a massive hormone shot to get it jumpstarted again. That did do the trick and eventually I was able to get pregnant, but the whole experience made me much more aware of the fact that you can't mess with bodily functions without their being consequences--often ones you aren't too happy about. (Here's a pretty good list of some potential side effects of hormonal contraceptives.)

And it made me wonder whether there is any correlation between the increased infertility we see in the world and the oh so prevalent use of oral contraceptives.  The invention of the birth control pill has definitely greatly changed the timing of childbearing for women across the world. In the US, the number of women having their first child when they are 35-39 or even 40-44 has been increasing ever since.  Since fertility has been proven to decrease with age, using the pill to push back childbearing would definitely cause more people to encounter infertility problems when they finally try, even if messing with the hormone cycle itself doesn't do so. And increased maternal age also equals increased risk of Down's Syndrome, other chromosome problems, and spontaneous abortion. What is the price being paid for that extra "sexual freedom" in their 20s? When women finally decide it's time to have children and then have to go through IVF to get them, do they have regrets?

The newer birth control pills allow a woman to choose to only have a period a few times a year. Some even are set up to never have a period at all while on the pill. I have to admit that I am not a big fan of my period. It is messy and gross. I get moody. I get nasty cramps. I get migraines. But at the same time, I find the idea of chemically altering that very natural cycle of my body alarming.  This article discusses some of the pros and cons people see with the new style pills. The manufacturer's point out that even on the regular monthly period style pills, you weren't really having a period. It was just a fake period to make people feel better. That doesn't really make me feel better, but it probably does mean that the consequences of any style of birth control pill is probably about the same. Manufacturers also argue that in modern society, we have more periods than our ancestors did. I can believe that--fewer children equals fewer breaks in the cycle for pregnancy and nursing. Still, the idea of using artificial hormone manipulation year after year after year worries me. Many people will be on birth control pills for most of the time between 16 and 50, and while we're told that is safe, I don't feel a lot of trust in that. I ran across one article that admitted that it is hard to study the effects of long-term continuous contraceptive use. "It's important to note that there are no long-term studies looking at the health risks, if any, of taking birth control pills for more than one year. Segal says that's unrealistic because "it would require women to promise not to have babies for three, five, even 10 years."

My biggest concern with oral contraceptives is that they are handed out like candy that won't hurt anything, without serious thought and consideration of possible consequences. Especially now that you can get shots that last for months or implants that last even longer, it is important to know what you are getting into. Whether it is a teenager wanting to be sexually irresponsible (even though those pills aren't going to save her from STDs or the emotional fallout of too much intimacy too soon) or a woman who is having any sort of female complaint. The immediate answer is always "oral contraceptives." Seriously, I have never gone into a gynecologist with a complaint about my health that wasn't answered with that. They don't want to figure out what's up or why you're experiencing discomfort, they just want to throw some hormones at it and hope it goes away. If one doesn't work, they will just try trial-and-error until they find one that bothers you less. When you look for information on birth control you mostly find glowing reviews of the freedom of choice they've brought and little or no info on possible consequences. Stories like this one, that acknowledge all is not golden, are rare. I am glad I had the knowledge and tools to make choices about when I'd have children and how many, but I also think these decisions need to be made with full acknowledgement of the risks and consequences involved and I don't believe that usually happens. For example, as someone who has loved ones who suffer from depression (so I know firsthand how dangerous and destructive it can be), I think it is VERY important that the link between depression and hormonal contraceptives be well publicized.

And this has just covered some of the medical questions of the pill. Being a medical blog, I won't go too deeply into the effect birth control has had on the structure of the traditional family and society in general. Yes, it has made it possible for women to be as irresponsible and consequence-free in their sex lives as males were able to be. That may sound "fair" but is it good for society? It seems like we'd all be much better off if we'd developed a way for men to be made more accountable instead. This quote pretty much sums up my feelings: "Many young people across our nation, who in the natural course of life should grow up, marry, and rear children, are instead trapped in a world where sexual intimacy is casual, responsibility and long-term commitments are denigrated, and children are viewed as a burden, a distraction from the pursuit of happiness and personal fulfillment. They have lost connection with the divine purpose of mortal life, arriving instead at the sterile apex of the me generation."("Defending the Family in a Trouble World" by Bruce D. Porter) 

If you'd like to read a lot of different viewpoints on the effect birth control has had on our society, check out this article from CNN commemorating the 50th anniversary of the pill. 

How to Protect Your Modesty in a Medical Setting

So if you are like I am and care about maintaining your modesty, how do you do so while still getting the medical care that you need? Here are some practical ideas to try.

Communication
First off: communicate your desires clearly, firmly and in advance. Whenever a medical test or procedure is suggested or planned, ask your medical practitioner to clearly explain exactly what will be done, who will do it and what you will be wearing. That may sound over-the-top, but medical professionals seem to err on the side of take-it-all-off for even some of the simplest tests and procedures. Always ask for details. Even for "simple" procedures. Don't settle for the generalities they usually give you or you will most likely be unpleasantly surprised.  If you aren't happy with the answers, ask them to explain why certain aspects of the procedure are medically necessary and then discuss ways to provide the medical necessities while still maintaining your dignity and comfort.

For example, often patients are told that they must remove all their underwear before a test or procedure. When asked why, we had a nurse explain it was because certain synthetic fibers can cause problems.  The follow-up to that explanation would be: "So what material can I wear that would not cause any problems?" I'd much rather go buy some new underwear than to be stripped bear.  Another example, sometimes people are told they can't wear anything but a skimpy hospital gown into an MRI.  In truth, they just need to make sure you don't have anything metal-- no rivets, zippers, etc.--and it is faster and easier for them to make you take it all off than to sort out what would be problematic. A t-shirt and yoga paints (and underwear, too) go through an MRI just fine. I know. I've done it.

Talk to your doctor in advance about what is actually needed versus what is standard practice. These type of discussions are much more likely to yield results when you aren't already on the clock in the very expensive surgery center, MRI, etc.

Have your doctor include your wishes in their orders:
Nurses, technicians and surgery preps are very concerned with doing what the doctor wants--much, much more than they are worried about doing what you want. So as you have these discussions with your doctor, insist they write the modesty plans you make into the official medical orders. You will probably still have to point them out to the health care workers you encounter (they often don't seem to read all that paperwork) but once you point it out to them, they are unlikely to fight both you AND the doctor.

Play the religion card:
If you get push back on your requests for more modesty, choose your wording carefully. If you just say "it makes me uncomfortable" people are likely to treat you as a scared child who they need to convince there is no reason to be afraid. They will try to convince you that your desires are unnecessary and/or irrational rather than looking for alternatives that will work for you. However, they have been trained (or should be anyway) to be respectful and accommodating of people's religious beliefs. For example, if someone came in saying they needed kosher food, the health care worker would be in big trouble with all kinds of people if they tried to convince them that such belief was stupid and unnecessary. So make sure to clearly frame your desires for modesty as a religious belief. Example: "My religious belief is that it is wrong to let any man besides my husband see my naked body. How will your medical facility work to respect that belief?"

Hold your ground:
Don't let people bully and push you into doing something that makes you uncomfortable or that you will greatly regret later. There is nearly always additional options, even if they would rather not admit it. If you aren't happy with the situation, make it stop until a resolution is found that makes you happy. They have a schedule to keep.  That tends to make health care workers try to railroad you through whatever is quickest and easiest for them. But, if you hold your ground and absolutely refuse to move forward, it becomes quicker and easier for them to find a way to meet your modesty needs.

Blame Aunt Flow:
Ladies have one more option. If you really want to keep your underwear but aren't very good at being firm or making a scene, go ahead and lie and say you are having your period. They'll have no choice but to at least give you some lovely disposable underwear to wear.

Why it matters:
For background info on why patient modesty is important, read our other patient modest post.

Medical Records

It has always bothered me that at most doctor's offices, medical records are treated like secrets. It would bother me that when the nurse left the examination room, she would take the records with her and plop them in the door. Heaven forbid I should sneak a peak at records describing me!

According to the government, "The Privacy Rule gives you, with few exceptions, the right to inspect, review, and receive a copy of your medical records and billing records that are held by health plans and health care providers covered by the Privacy Rule." But actually getting providers to hand over those records can be expensive and sometimes frustrating. 

I have had a few doctors offices that are great. When we asked our cardiologist how we could get a copy of the echocardiogram he was running on our son, he happily popped in a CD and burned us a copy on the spot. When I went by later to get a copy of his EKG, the receptionist printed it out from her computer. Part of the trick is knowing who to ask. When we arrived for the echo, we asked the receptionist if we'd be able to get a copy ad she acted like it wouldn't be possible--in reality she just had no idea. Persistence paid off and the doctor gave us no trouble over it all. 

Many offices and especially offices out-source their records to third-party companies. That means if you want a copy, you usually have to fill out a form and commit to an indefinite amount of money for copying said records. How much they can charge you varies from state to state. You can look for your state here. 

After fun experiences with knee surgery and a decision to never go back to the Carilion hospital near us, I wanted to gather all the records from their system. After talking to the records department on the phone, I filled out the necessary form and submitted it. The records office warned me that asking for all my records could result in thousands of pages and thousands of dollars so I might want to be more selective. I wanted it all so I continued on. I was very surprised when I received a very thin envelope from HeathPort, the 3rd party information company that Carilion uses to store and retrieve its medical records. There were so few pages that it fell into the free category. The documents contained spotty information on a few procedures I'd had done and none on others. We called HealthPort. Their customer service was unfriendly and unhelpful. They insisted that they'd sent my complete records and demanded to know how we could know something was missing.  Hmmm, because they were missing entire procedures! We finally got them to grudgingly agree to try again. A few weeks later we got a larger package. This time it included an invoice for around $20. This time it at least had mention of all the procedures and had a more complete record of the surgery I'd had done. The copies were terrible quality but at least they were there. Still no images, though, even though we'd expressly checked that box on the records request form. No images from EKG, EEGs, MRIs, surgery, etc. We called HealthPort again and were told they don't do any images and that we'd have to contact the hospital. 

Back I went to the hospital record office. I sat there for over an hour while they tried to find and print out my images. They kept asking, "Are you really sure you had it done here? We can't find you?" That is definitely confidence-building. Finally they managed to find and print one EKG. I was told that they didn't have my EEGs. I'd have to try to contact the neurologist who ordered them. And they didn't have any images from the surgery. I'd have to ask the orthopedic surgeon about that. They also told me that I'd have to go to Imaging to get copies of the MRIs. That would have been nice to know before I'd already waited an hour because when I went to Imaging, sure enough, they could burn a disk for me, but it would be an hour or two wait. And no one ever, in the process of getting the MRIs, had let me in on the fact I could get copy of the images or how to do so. They only tell you if you ask. 

It was a long and frustrating day. I still haven't gotten up the energy to go through all that again with the orthopedic surgeon's office, but one of these days, I will.

So why bother getting them at all? Because unless you stay in the same town with the same doctor your whole life, this information will disappear. And someday you might want it. After all this, I realized I should try to get some records from a previous doctor in a previous state. I called... but it was too late. They'd been destroyed. How long medical facilities must keep records varies from state to state. You can check out yours here. 

Even if you stay with the same practice, if your doctor changes it seems to make your records vanish. I requested my records from the family physician's office I've been using. It came from another third party and was decently complete, except that it contained nothing from the first doctor I'd seen at that practice years ago. She was my doctor for several years and then left the practice and I was transferred to another doctor. The records contained none of the tests or visits I'd had with her, and there were a few things I wish I had.

So the moral of the story is: demand what belongs to you. You paid for these tests and treatments. You should have a record of what was done and how it was done. Don't wait for some one to offer the records to you (they won't).  Don't wait until you need them or they may already be gone.