View Full Version : For those that fear doctors miss something... small revelation
Hi my fellow worriers,
If any of you have followed my posts, it is obvious I am in deep with this health anxiety. For the past 9 months, I have feared about 14 different types of cancers based on vague symptoms or a result slightly outside of the norm on a blood test. I am 36 weeks pregnant, and recently I had a drop in hemoglobin, which is EXTREMELY common in pregnancy, but I of course attributed it to a slow bleed somewhere in my body. That being said, I have had two endoscopes to look at my esophagus and stomach and 2 scopes to look at my colon. For some reason, I still can't believe that pregnancy caused this drop (even though my HG has remained stable around 115-120 the past two and a half months).
I, like so many others, obviously fear that doctors have missed something. For example, I am back to worrying about stomach cancer and worry that two expert gastroenterologists (with 50+ years combined experience), missed a bleeding mass in my stomach, twice. I also had biopsies done of the stomach and esophagus because they were down there. They noted an extremely small spot of erosion in my esophagus from acid reflux, but I think they missed a large, ulceration. And also, I apparently believe that I had a unique type that has not significantly progressed over 8 months. It is interesting that us health anxiety worriers always think we are the unique cases. I also assume that multiple ultrasounds, scopes and MRI's missed things too. Not believing the tests is one of the biggest challenges that I have. I was never like this before.
For those of you that worry about the doctors missing something, I wanted to let you know a revelation I had today. Since August, I have had 5 different abdominal ultrasounds done, at 5 different hospitals. The beginning of August, the first ultrasound noted that I had some mild water retention in the kidney (also very common in pregnancy, due to the uterus). Every 4 ultrasounds I have had done since then have noted the exact same thing (without the hospitals knowing about the results of the other one). This is something very minor that was picked up in every ultrasound. I have not had one where this (its like a few mm larger than my other kidney) was not picked up. Meanwhile, I am worried that a GI doctor missed a large mass, twice. This goes to show that if something is "wrong", even just slightly, it is found. Just some perspective!
Would love to hear from others on how they cope with doubt, uncertainty and the fear that the doctors missed something.
Think this post will really help people suffering from anxiety, I always see people saying "what if the doctor is wrong" which I struggle to understand in my head.
Doctors rarely miss anything, if they do it's very rare and not ever really the doctors fault, I see so many people "but I googled this and this happened" :wacko:
Glad you have seen through your anxiety and that you have a accurate scan so you can stop worrying, hope the labour goes well.
Sent from my iPhone using Tapatalk
Hi Ellie!
Definitely my hope that it can help fellow "what iffers". I have been notorious for it lately. It's always the big masses that I feel they have missed, meanwhile they can pick up something as small as a few mm different and make a note of it. Same with during the scope, the fact that they found a small spot of acid reflux (we are talking in the mm range), yet i think they miss something bleeding. The media and those horrible diagnosis stories online make it seem like mis-diagnosis happens all the time.
Some further perspective...
Most here know about my real health issues. My experience was that the medical professionals did their job and treated me accordingly. Do doctors get it wrong? It does happen but much less than you think. Under 5% from what I've read but not on serious issues.
My wife was misdiagnosed. The initial doctor was correct in that she had encephalitis but the type was misdiagnosed and he pursued treatment despite tests showing a negative result. That being said, what my wife had was so rare that most doctors have only read about it. I knew something was up and transferred her to the best hospital in our state. They diagnosed her within 12 hours and began treatment. Tests confirmed their diagnosis and there's no doubt that they saved her life.
Most of what people fear here has been seen by most if not all of the medical community. Tests are confirmation and there are no doubts left. So when that scan or x-ray or exam is negative... it's NEGATIVE. 99.999% of the time that's fact.
To worry about a less than .001% chance? Irrational.... and sad :(
Positive thoughts
Fishmanpa,
You are so right! When there is something really wrong, as we all fear on this site, they do find it. I also like the point about the things we fear have been seen my many doctors. I also tell myself the same thing about the GI doctors. The first GI doctor I saw, has been a GI doctor for 30+ years (plus med school training and residency!). He has seen many cases of stomach, esophageal and colon cancers. When they say "gastroscopy, normal", I need to believe them. It really is the misdiagnosis stories on the internet that I think get many people believing it happens a lot more often than it does. My very rational husband also tells me that when we read these stories online, we also need to realize that a.) the misdiagnosis stories sell WAY more... who is interested in reading an article in the paper titled "colon cancer found in 70 year old during colonoscopy" vs "colon cancer missed by two colonoscopies in 20 year old", b.) we have no idea where in the world these tests are being done, c.) We don't know if the stories are fully accurate when self-reported.
Anyone else have any input?
I have a hard time with this.
I have read too many medical journal articles on this topic to feel comforted that docs rarely misdiagnose. It probably depends on disease, but there is definitely an error rate, missed diagnoses, and even overdiagnosis.
This is especially relevant to me today. I have had a persistent cough for 3 months, at first it was not responding to meds, and finally I am improving somewhat but not 100%. Then, out of the blue last night, I started getting pain with a deep breath (i.e. pleurisy). I have had pleurisy one time before, last Feb, and they gave me a CT scan that came back normal. Then, because of the cough, I had a xray just in Sept that also came back normal.
Doctor today recommended doing nothing about the pleurisy since I have these two relatively recent scans indicating no problems. Then, she threw more allergy meds at me.
But, gah, I'd be lying if missed diagnosis hasn't crossed my mind. From reading, I know the percent of xrays that miss cancer, per medical studies, and it is pretty high...so....blech!!
I wish this wasn't so hard but, at the same time, if I was totally trusting, I know I would never get anything checked out. I never used to go to the doctor ever, which kind of freaks me out now knowing the things that I let go, lol. Obviously, they were okay and improved over time, but dang! Then, I have had recent occasions where things WERE misdiagnosed, including a soft tissue mass and a breast lump was also misidentified on imaging (did turn out benign, but not what the radiologist identified it as). I have also had things that worried me that turned out to be exactly what doctors or NPs have said they were.
I think the issue is striking a balance between trust and skepticism. Pure trust seems as foolish to me as pure skepticism. HA is a huge mental cross to bear!!!!
p.s. I know this isn't the "right" response to this post, but shrugs.
---------- Post added at 15:04 ---------- Previous post was at 15:02 ----------
I think you do make a good point about the veracity of self reporting when you read stories on the web of misdiagnosis.
CHELLEB1017
13-10-17, 20:11
I have had doctors think nodes were cysts so they were wrong but all in all they were correct on what I did have in fact was benign and nothing to be concerned about. I struggle with trust in every aspect of my life but am trying to make an effort at trusting a medical professional who knows more than I or google lol
It is definitely hard to trust doctors and medical tests when you have had those experiences. I think one of the points that most of us have tried to get at, is that typically serious conditions get diagnosed. It is very rare that someone has for example in my feared case, stage 4 stomach cancer that gets missed completely in two scopes. I think doctors are probably more likely to misdiagnose benign conditions. How many tests do we need before we believe our doctors? I feel very tempted to have a third endoscope (first one in June, second one in August). Why? For reassurance seeking no doubt.
CHELLEB1017
13-10-17, 20:27
Right?! All that does is just keep this crazy cycle going and I hate it! I am seriously trying so hard to not google things and to also give things 2 weeks before I see a doctor (unless it were very serious) and even on top of that if I do see a doctor to trust them! It is the only way we just may beat the dragon!!!
Yes! I've been working with a counsellor and my family doctor. I have been encouraged to not seek out any more tests. They always provide a temporary re-assurance, but obviously doesn't work long-term. I can't believe that I have had two endoscopes and still am convinced something sinister was missed. One of the hardest things for me is not test seeking due to the instant re-assurance. I don't know about you, but each time I go for a test I tell myself that this is it and I need to move on. Well... here I am...
Only have a test if your doctor says there is a clinical need to have one. Endoscopies are invasive and you shouldn't be having repeated ones. It's up to the doctor to say no if you can't stop yourself requesting them. Ultimately it's down to you to start believing the results of clinical tests ..which you know.
Hi Pulisa!
Thanks for your response. I definitely agree with what you are saying. My GP and I have determined that instead of me running to the hospital (this is the way I have gotten 5+ ultrasounds, 2 endoscopes, 2 colonoscopies and an MRI) that I need to talk with her first and she will determine next steps with me. I think because my anxiety has been reassured by the hospital and the tests, I have almost become addicted. Any bit of discomfort or anxiety I have, my first reaction is to go to the hospital and get a test.
Ah, the addiction element of all this!! Some people don't like this but I do think it plays a part in HA.
It's a very good idea to make your GP the first step in deciding about tests. In the UK we all have to be referred by the GP and wouldn't be able to bypass this step. It must be awful to just approach the hospital directly-dynamite for HA sufferers.
Hi Pulisa,
I can imagine people get upset about the addition piece, but I strongly believe it. I am actually not diagnosed with illness anxiety disorder, but a severe case of OCD. My obsessions and compulsions have been health driven for the past 8 months, but the psychiatrist said it's my current fixation. I have a book on overcoming OCD and there is a whole section on it being similar to an addition. There are some differences the book states, for example, someone addicted to gambling is addicted to a possible positive response (positive reinforcement), where with OCD/HA and the addiction of tests, we are more addicted to the anxiety relief (negative reinforcement). I started to notice it was like an addiction when I would get mad when the doctors would not give me the test I felt I needed. I have been working with my counsellor and approaching my health anxiety like an addiction (not going to the hospitals for anxiety relief etc). I have had OCD my entire life and this bout of HA has been the toughest.
You are obviously working very hard to manage your issues-it is such a complex problem and people don't understand what hell we go through. You are actively taking steps to understand your OCD/HA better and are challenging it in the best way possible. Anyone reading this thread should draw some inspiration from what you are doing and I wish you all the very best!
I feel like HA is very much OCD in most cases. Instead of being an addiction, that gives a high or whatever, it is a compulsion.
I try to set limits for myself in terms of doctor visiting. Occasionally, I will get a second opinion, and I never ask for tests. I just explain my symptoms and walk out without a test if that's what they say, as I did today with my lung issue.
IN the US, we don't have referrals, but we do have insane expense. I don't know how people who go to the ER all the time and ask for tests, etc can even afford it!!!!
I think it's a mixture of addiction and compulsion but ultimately it's severe anxiety which is the driving force.
Hi NervUs,
I agree that for most people it can mimic OCD. I had asked my psychiatrist about it and he said typically people with OCD have other obsessions and compulsions outside of Health Anxiety, which is true in my case. For me, seeking the reassurance of a medical test is no different than the individual with OCD that needs to check the stove 10 times. In both situations, we feel anxious and struggle to cope, we act on the anxiety with a compulsion (medical tests for me!), this provides reassurance and then quickly the doubt and uncertainty return. Previous to this bout of health anxiety in January, I had never had a test outside of regularly scheduled tests, I sure as heck never doubted a test and never had been to ER. Since experiencing the health obsession, I have had 15 tests or so, been to the ER probably 20 times and doubt every test that I have. This is such a hard beast to fight, but I realize for myself that I can't google (I've been really good with this), can't book appointments with my GP and go over the same concern multiple times and can't continually seek reassurance through tests. It's hard and my anxiety has increased, but it will eventually come down.
I have been worried about stomach cancer for about 8 months now. My husband pointed out to me that with stomach cancer, in 8 months you would be very ill and would have been diagnosed. I have not had any of the more alarming symptoms of stomach cancer (ex. vomiting or vomiting blood, significant unexplained weight loss, severe abdominal pain etc) and have had two scopes and biopsies. You would think that would reassure people, but not us!
Wow, this is all SO me! I've always been a worrier and would stress completely out if I suspected something was wrong but it wasn't ruling my life or anything until 2 years ago. Ever since it's been one issue after another and test after test etc. I realized that it wasn't helping me so just in the last week I've had two separate issues checked by my gynecologist and my GP I'm doing my best to trust their judgement and not ask for tests but of course my anxiety is yelling at me.
Hi Leslie,
It doesn't help because it's not the real issue. If you ask people without health anxiety how they would feel after a clear scope, x-ray, CT scan etc they would tell you total relief, no doubt and move on. Not for us. It's not because doctors and tests are more inaccurate with us, it's because of our mental health. As I said to someone earlier, my husband asked me the following question since I've been worried the two endoscopes missed stomach cancer. What is more likely: option 1- the experienced doctors that see these conditions all the time and are completing the gold standard tests missed a serious condition or option 2- there was nothing to be found and our health anxiety is driving it. One of the big issues I have is that I convince myself of a certain condition, learn the test used to diagnose and work at convincing doctors to give me that specific test. To me, no other test will suffice.
It's the "reading up" on these conditions which is so harmful and makes us believe that we have more knowledge and power than the doctors. Quelling the voice which tells us that we are right and the doctors are wrong/something has been missed etc is so hard but is the key to gradual recovery. Investing so much time in researching the condition, comparing notes and symptoms on NMP and similar sites and generally handing your life over to the condition and all its connotations despite not having an actual diagnosis of the disease/condition is simply illogical but so terribly important when in the midst of it.
I've managed my own HA by only having tests when there is a clinical need and even telling my GP I didn't want an endoscopy for reassurance which was very hard but I'm still here 18 months afterwards!! My OCD manifests itself in food rituals (I have had an ED for over 40 years) and cleaning issues and I need a strict routine (I have 2 adult children on the autistic spectrum but have been assured that I am not).
Life is so complicated with this stuff but all we can do is try to keep our anxiety on a relatively even keel and try and pace ourselves in times of stress. Not easy!
That is definitely the truth. We think we know more than the doctors. My husband has said to me a few times, "why even go to a gastroenterologist if you already know" . It's just so hard when the fear is so strong. I think it's also the unexplained symptoms that get to me. So I have two endoscopes, They don't find anything but some minor reflux from my pregnancy but I continue to have symptoms that I've attributed to esophageal or stomach cancer. In my mind, It's not because they are benign or likely explained by something else, but because they missed my feared condition. We think we become experts from some googling and that we know more than a doctor with 13-15 years training and 20+years experience. I've been able to give up the googling, so my new goal is to not test seek when my anxiety spirals. I need to believe that with 2 endoscopes with biopsies, multiple ultrasounds, A chest x ray and an abdominal MRI, something abnormal would have been picked up. I've had more tests in 9 months than some people have in their life.
You are right on that. I don't question my test results especially if they are invasive and conclusive. The danger is that no test will be conclusive if you allow your doubts to spiral and the only one that would be would be a post mortem and then you are not around to experience the 100% reassurance.....It's a sobering thought. I appreciate the continuing battle you are fighting and you are doing all the right things imo.
I think what gets me is I read on forums ad such about how we should be our own health advocates. I read that A LOT! I was stuck on a breast dimple last year, I read on the BC forums about not trusting mammograms and breast MRIs were the way to go. I convinced my Dr to order me one. It was clear. My Dr said it was stretched skin but those forums made me not trust him and I needed to be my own advocate and get an MRI. So I did. Yet my Dr was right the whole time. If I had trusted him I would have saved myself about 6 months of stress.
I think for someone without health anxiety, they understand when they need to advocate for themselves. When I has my first endoscope done I remember saying to my husband that something still feels wrong and i need to advocate for a second opinion. My judgement is broken right now. I was also talking to my counsellor last night and we spoke about it being silly to doubt medical tests. Often mis diagnosis happens if a doctor doesn't refer for proper investigation and even that's not very often sue to fear of law suits. It's important that once we have been told everything is okay that we trust it and move on.
Powered by vBulletin® Version 4.2.5 Copyright © 2024 vBulletin Solutions Inc. All rights reserved.