Bogus Diagnoses
Six years ago on Easter morning, my plans for going to Church were thwarted by the car that drove into mine. My cheap car was wrecked because the cost to repair the driver’s door and front axle or something simply was not worth it. I climbed out of the car worried about everything from the old man who had been driving far too fast for his failing eyesight to the fact that I now had a broken car blocking the road. I knew that serious injuries sometimes do not show up for hours after an accident, but I wasn’t especially concerned about that.
The next day my parents’ D.O. took a look at me and determined that I was fine and should just take painkiller as needed. A week or two later I went to see a NP because my neck was worse and it hurt to hold up my head. She informed me that I had brought this upon myself by just living with the pain and not taking NSAIDs to prevent inflammation. She gave me a cervical collar to wear along with the lecture about two weeks of triple-dose NSAIDs.
It took a few months, but eventually my neck was fine. The odd thing was that my left shoulder had started to randomly ache, and would make an odd crackling sound when I rolled it. During the worst flare-ups the pain would radiate down my arm and part of my forearm would go numb. I could always control it with NSAIDs, but rarely did because I was ridiculously concerned about the dangers of such things and thought I should save the poison for those times of the month when I would really need it.
This spring I finally saw an orthopedic specialist. I was feeling well enough over all to realize that maybe it was stupid to passively accept chronic pain, even if I would only rate it as a 3-4 on a typical day. After physical therapy, x-rays and an MRI I was ready for a solution and would happily have had surgery ASAP if the doctor recommended it.
The doctor diagnosed me with snapping scapula and basically told me to live with it. He thought that it was probably something I was born with since it was not a sports injury, and he thought it was unlikely that it was the result of the car accident. But in any case, I had had it for a long time, physical therapy had not worked, and while there was another test he could order, he doubted that it would show anything.
Externally I accepted the diagnosis and left, but I lamented the fact that I had not gotten a diagnosis, merely a catchy descriptive term. I did not need someone with a million years of school to tell me that my shoulder popped and made funny noises! Josh thought that it would be worth seeking a second opinion, but I already felt like a whiny hypochondriac. The only thing I had legitimizing my condition was the fact that my mother–the woman who raised me for almost 18 years without ever having me see a doctor–my mother thought that there was something very wrong with my shoulder and agreed that it most certainly had not been like this prior to the accident. So I was supposed to find another specialist and tell them that my mother thought I had a real issue? Cute.
After a bit more reflection I realized that this bogus diagnosis wasn’t really all that different from what women receive every day from their gynecologists.
I have a diagnosis of endometriosis. What does that mean? Pretty much nothing. Women with endometriosis are often asymptomatic. Women may have endometriosis and be pain-free with perfect fertility. Women without endometriosis may experience horrible dysmenorrhea and infertility. Women who have never had adequate testing done will go around declaring themselves to have endometriosis based purely on symptoms which may or may not match up with endometriosis. And word on the street is that tossing the term around is a great way to get sympathy. Which is kind of funny, because in real life I have probably only spoken about it with 10 people, including doctors and family members. And since these days I have “‘normal’ bad periods” I am outraged at women who have “bad periods” who talk about it as if they understand what truly horrific pain is like.
No woman should have to deal with anything beyond mild discomfort and inconvenience when it comes to menstruation. It is bad enough that any woman should have to suffer because we as a culture do not take women’s pain seriously. But just because you have real pain that requires OTC meds does not mean that you have any clue what it is like for women with debilitating pain. Ironically enough, the fact that we are finally getting wider awareness of gynecological health problems means that people are more likely to dismiss women with extreme issues because everyone knows someone with issue X who can live with it perfectly well.
Of course the issue goes far beyond the question of pain. What about our good friend PCOS? The question these days is who does not have this amorphous diagnosis? Unlike endometriosis, which has an objective, unchanging criteria for diagnosis (if the doctor and patient happen to actually be interested enough to pursue such) PCOS is highly subjective. A woman with polycystic ovaries may not have PCOS, and a woman with PCOS may not have polycystic ovaries. One of my friends was diagnosed with PCOS based on the fact that she has long menstrual cycles and is overweight. The gynecologist said that she was able to make the diagnosis just by looking at my friend. No tests needed, thanks to the fact that bogus diagnoses are standard of care when it comes to gynocological health. Women with PCOS who fight very hard to maintain a healthy weight are sometimes told that they could not possibly have PCOS because they put the work in to control their weight. And don’t even get me started on those who feel the need to call it PCOD because disease sounds worse than syndrome?
And then what about the fact that these bogus diagnoses are made for life? People don’t walk around saying that they currently have cancer if they have been successfully treated. But somehow the same rules do not apply when it comes to women’s health.
I believe that bogus diagnoses are a problem because they prolong unnecessary pain. When women do not have an accurate understanding of their condition, they go along with inferior plans for treatment. When doctors are satisfied with slapping a convenient label on a woman without so much as running the only tests by which an accurate diagnosis could be made… well we already know what happens then, because we all live with it.
I hope you get your shoulder figured out. I also have endometriosis–diagnosed through surgery for what was thought to be some different issue. Except for the post-op healing pain I am doing better now, though I live in fear of doing anything that will cause scar tissue to recur or feed those pesky estrogen receptors…it’s not a diagnosis I would wish on anyone but I am grateful to have finally found a GYN who listens to and respects me, rather than the ones I saw before, one of whom told me I was “perfectly normal.” I’d love to show him my surgical report.
As someone who presented with very few outward symptoms of endometriosis, with a properly-formed diagnosis from surgery, AND who has recently seen a new doctor who isn’t convinced I have PCOS (but who also did not tell me to stop taking metformin for IR – which she said was also borderline) AND who just this morning called with labs saying my thyroid is in the normal range but higher than they like to see in someone TTC, I am feeling somewhat frustrated! (But the rest of that is for my own blog :)). However, I do totally agree that bogus diagnoses do no one any good at all – prolonging the pain of one while diminishing the experience of another is just bad news :(.
And seriously – I really hope they get that shoulder fixed, chronic pain (even a 3 or 4) is the worst!
It’s not just gynaecological diseases that get treated this way. I’m told I have Crohn’s disease. But there is still so little known about it, it’s effectively nothing more than a label for my symptoms. A lot of people who start with the diagnosis of Crohn’s find out later on they really have Celiac disease – an allergy to gluten. I’ve been tested every way possible for Celiac and have always tested negative. But I recently stopped eating wheat and my symptoms have gotten better. I don’t know if my doctor will even believe me when I tell her that. I don’t like to go to the doctor for stuff because they can never find anything, and generally when they do give me a diagnosis, it doesn’t mean anything – it just means I have a certain set of symptoms with no known cause and no known cure. It’s just disheartening after a while.
I must admit that I have diagnosed myself (but not with endometriosis or PCOS). Instead I went ahead and diagnosed myself with vaginasmus (http://www.vaginismus.com/), which is a sexual pain disorder. My doctor’s advice of ‘go slow, use a lot of lubricant’ just wasn’t cutting it ya know? As time goes on, and this baby comes out and things settle down, I will be pursuing this more. Hopefully to the point of having an actual medical professional either confirm or repudiate my claim. Because some things aren’t worth just letting be, especially if there is a fix out there. And on that note, I think you should go to another doctor. You never know what his/her mega-education will provide to your story!
Oh, I could go on and on and on about this. I’ve written several posts about how badly I’ve been treated at OBGYN offices (and I actually went off on a staff one time and slept like a baby that night) and medicine for children as well.
It blows my mind that doctors think someone who spends every breathing moment with themselves can’t possibly know anything about their body.
And oh hey, I’ve carried this baby for 9+months and I’ve examined everything about my kid from their hair on their heads, their throw up, bowel movements, inside their mouths, to the tips of their toes. I know they only like peanut butter on half their bread and will only eat grapes if they are split in half and try to skip out on two books at night?Forget about it.- but I’m crazy and can’t possibly think that your generic diagnosis MAY be wrong.
All this to say….you should become a doctor and I would fly to see you for check ups.
I’m one of those people with PCOS and was diagnosed about 14 years ago with a heap of tests, and then more tests when i changed doctors. But at some point it felt like the doctors had stopped listening to me. Like they had put me in with everyone else with PCOS and weren’t listening to me. They were happy to just put me on the pill and tell me that was the only way to fix it. I went off the pill when i got married, against my doctor’s advice and found a lot of my symptoms seemed to get better, but when they started again, they just wanted to put me back on the pill.
I had some other medical issues that a different doctor was investigating. My blood pressure had got very high which i actually found out from a sore shoulder. I’ve had so many tests done this year, and I feel like this new doctor has been very thorough and that he is actually listening to me. He found a cyst so big that they couldn’t even tell which part of me it was connected to until they opened me up. All this time i’ve been saying like it felt like something was growing inside me, none of those original doctors bothered to check. That specialist found me a new gynocologist who so far has been amazing. I don’t feel like i’ve been cast aside into some diagnosis they give everyone because its easier for them to deal with.