View Full Version : Need some help to not give into my reassurance seeking.
Hi everyone!
I've been posting on here more regularly, hoping to gain some strategies and also sharing what I've been learning along the way. I have been diagnosed with OCD (on the severe end) and have been having health based obsessions and compulsions since January. Anyone who has read about my story knows that I've been convinced of about 14 different types of cancers and have had multiple tests done.
In February I started to convince myself I had stomach cancer from likely early pregnancy and anxiety symptoms. I also started noticing a sensation of food getting stuck and became convinced there was a mass in my esophagus or blocking my stomach. I became obsessed with needing an endoscope and was convinced if this came back clear I would move on. In June, I had an endoscope, the results were: acid reflux otherwise normal gaatroscopy, no obstructive changes. Biopsies of lower esophagus and stomach came back normal. I continued to experience the symptoms that worried me and became convinced that the scope missed it. In August, I went to a see a different GI doctor and had another endoscope done. I was handed a sheet of paper that said acid reflux, was told biopsies were taken and would hear back if biopsies were concerning. Once again, temporary relief. I had third trimester bloodwork done that showed mild anemia and instantly panicked thinking it must be colon cancer. My fear then switched to colon. I've had multiple scopes done on my colon, Once again, clear results so I have moved back to stomach cancer.
I am trying to fight the urge for a third endoscope as I'm now convinced the two others missed something. I know that this is not the solution and no test has ever "cured" me of my health anxiety. I am trying to work so hard at not feeding the reassurance wheel. Any suggestions on what others do when they feel they need a test so Strongly?
Don't get the test. It won't help and the underlying issue here is anxiety.
How many weeks pregnant are you? Can't you focus on that, when I was pregnant I had loads of symptoms I would panic about if I wasn't - I had a cold for 9 weeks! I was so poorly, I had severe rib pain that was only before 20 weeks ;)
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Dealing with this requires sheer willpower.
You just can't make another docs appointment for this, end of story. You need to sit with the discomfort, and when you wake up everyday, remind yourself that you are alive and well.
Not feeding the reassurance wheel is actually a huge step you are taking and you should feel proud. Getting yourself out of this negative cycle will take time and it will be uncomfortable. There is no getting around that!
Thanks everyone. I really appreciate all the feedback. I have to fight this for my baby and husband. I've been seeing a therapist since February and also will call the counselling service that I get through my work as well. I've stopped all body checking (weight, lymph nodes and temperature) and I've stopped googling. The problem is that I remember all the stories I read on the internet and I don't know why I attribute them to me. I realize the odds of stomach cancer at my age, with no risk factors and no family history, no serious progression over 8 months and two endoscopes and biopsies (plus all the other tests I've had that I'm sure would pick up something suspicious) my odds are so slim. I'm trying to find a strategy for when I feel one of the symptoms that I worry about. So far I've been trying to ask myself if it's fact or opinion that this is because of stomach cancer and remind myself that if there was an obstruction, cameras would not make it down to my stomach and it sure wouldn't be missed twice.
Thanks everyone. I really appreciate all the feedback. I have to fight this for my baby and husband. I've been seeing a therapist since February and also will call the counselling service that I get through my work as well. I've stopped all body checking (weight, lymph nodes and temperature) and I've stopped googling. The problem is that I remember all the stories I read on the internet and I don't know why I attribute them to me. I realize the odds of stomach cancer at my age, with no risk factors and no family history, no serious progression over 8 months and two endoscopes and biopsies (plus all the other tests I've had that I'm sure would pick up something suspicious) my odds are so slim. I'm trying to find a strategy for when I feel one of the symptoms that I worry about. So far I've been trying to ask myself if it's fact or opinion that this is because of stomach cancer and remind myself that if there was an obstruction, cameras would not make it down to my stomach and it sure wouldn't be missed twice.
Did you get these tests while pregnant?
I've been seeing a therapist since February and also will call the counselling service that I get through my work as well.
Does your therapist know about posting on the forum?
Positive thoughts
Hi fishmanpa,
Thanks for reaching out. My therapist does know this and feels it's okay as long as I'm not seeking reassure 've for my symptoms. This works for me as I don't trust doctors and invasive tests, I'm sure not going to believe people over the internet that I'm okay. I'm hoping more for strategies that people use when they start to feel the overwhelming urge to engage in their safety seeking behaviours (for me getting tests)
I'm hoping more for strategies that people use when they start to feel the overwhelming urge to engage in their safety seeking behaviours (for me getting tests)
What techniques have you learned about in therapy that would help you? There's a FREE CBT course here that's helped many. Why not download it? There are many techniques and worksheets that are very beneficial in helping you with this. http://cbt4panic.org
I ask about your therapist as most worth their salt would discourage participation. Reading about other's fears or similar fears as your own will only fuel the dragon.
Positive thoughts
Hi Fishmanpa,
I will definitely download the program and give it a try. I do find myself very aware of what I choose to read and not read on this site. I'll ask my therapist again and see what they think.
Some of the techniques I learned about are CBT based in that I need to work on challenging my automatic thoughts. I also have been doing some exposure and response prevention (which is common with OCD). So if a doctor has given me the clear, I am not to seek a test out again for the same problem. I am able to do some challenging etc but where I seem to be getting stuck is with not seeking more tests.
Remember the facts here:
All your invasive procedures (carried out always with a risk of organ perforation so not to be performed for reassurance-seeking purposes only) have come back clear of any cancers
Pregnancy very frequently results in mild anaemia due to the baby draining the mother's haemoglobin supply. It's very common and very normal. Here all expectant mothers are offered iron supplements. Are you taking an iron supplement?
Whoever is caring for you medically is not doing a very good job. You shouldn't be able to just buy the tests you want based on your own "diagnosis". It's risky and you know you don't believe the results so what is the point?
Use your GP as a middleman if you can't stop yourself from ordering tests directly from the hospital. Think of your baby-no tests come without risks especially the sort you want.
I would keep things simple but definitive. You can't afford to give yourself an inch on this otherwise where will it stop? Will you be wanting tests in the labour ward?
Hi Pulisa,
You have been such a great help! Thank you for following my story.
I did not go to the hospital today, so I am working on the steps to not reassurance seek. I know what I need to do, it is just SO hard! It is so hard when my brain is firing anxious thoughts at me, trying to convince me that it's right and all of the doctors and tests are wrong.
The therapist I spoke to yesterday told me I have the right steps down with the challenging. I have also started thinking about facts vs opinions. I am not a skilled GI doctor and am basing my fear on stories I have made up about my own symptoms. I have done this time and time again and have been wrong this whole time. What is fact, is that 2 experienced GI doctors with 50+ years experience did endoscopes on me (if I am worried about obstruction, how would the camera get down or at least not notice an obstruction), that the conditions I am worried about are unlikely to begin with (I think like 5 in a million) and biopsies came back normal. I imagine to people without HA, they just think I am completely irrational. My goal now is to stop getting reassurance through tests.
Hi Pulisa,
You have been such a great help! Thank you for following my story.
I did not go to the hospital today, so I am working on the steps to not reassurance seek. I know what I need to do, it is just SO hard! It is so hard when my brain is firing anxious thoughts at me, trying to convince me that it's right and all of the doctors and tests are wrong.
The therapist I spoke to yesterday told me I have the right steps down with the challenging. I have also started thinking about facts vs opinions. I am not a skilled GI doctor and am basing my fear on stories I have made up about my own symptoms. I have done this time and time again and have been wrong this whole time. What is fact, is that 2 experienced GI doctors with 50+ years experience did endoscopes on me (if I am worried about obstruction, how would the camera get down or at least not notice an obstruction), that the conditions I am worried about are unlikely to begin with (I think like 5 in a million) and biopsies came back normal. I imagine to people without HA, they just think I am completely irrational. My goal now is to stop getting reassurance through tests.
As pulisa stated these tests are invasive, I don't know how you managed to get so many. When I was pregnant I struggled to get a X-ray - they don't really like doing surgery or tests to pregnant women.
Isn't your unborn child enough reason to not want these tests? Imagine the stress it puts on you both.
I wish you all the best and you try and get help before your baby is born as having a baby is the hardest thing ever and definitely makes your emotions/hormones go all over the place.
You HAVE to concentrate on FACT and not your own HA fiction. My son was actually born without an oesophagus so I am very clued up on oesophageal/stomach abnormalities and treatments and also on the dangers of repeated, unnecessary endoscopies. The fact is that any cancers would not be missed and the scope would not be able to pass down an obstructed gullet as you say (trying to convince yourself !!) You don't need to immerse yourself in any more medical info because you have had normal endoscopies with no remarkable findings other than pregnancy-related acid reflux which is very common and benign.
You can do this, Casey. You have to for the sake of your baby and to stop you projecting your HA onto your baby because you know it's a slippery slope.
As pulisa stated these tests are invasive, I don't know how you managed to get so many. When I was pregnant I struggled to get a X-ray - they don't really like doing surgery or tests to pregnant women.
Isn't your unborn child enough reason to not want these tests? Imagine the stress it puts on you both.
I wish you all the best and you try and get help before your baby is born as having a baby is the hardest thing ever and definitely makes your emotions/hormones go all over the place.
I agree with this.
How often do you attend therapy sessions?
Thank you all for your support. It is so helpful to know that there are people who can somewhat understand what I am going through. This has completely taken over my life. I think one of the hardest things with health anxiety or health related obsessions of OCD, is believing that nothing physical is wrong and fully addressing the mental health. I am still so worried that they missed stomach cancer. My brain continues to think the "what ifs". I wonder, "what if the doctor didn't look enough into my stomach, what if I didn't relay the symptoms that would prompt them to look more closley, what if they didn't biopsy any suspicious spots so it came back as normal, what if stomach cancer isn't obvious on an endoscope". The doctor(s) went right into the duodenum so they would have had to look through my stomach. I also do think about the chances of two doctors missing stomach cancer. I am continuing to try to challenge this, but it is hard. I constantly have the urge to see if anywhere will give me a third scope, so I am currently working on fighting through this. I remember after the first scope, i told my husband, one more scope for a second opinion and I have to move on. I moved on... to colon cancer... now that, that fear has been cleared, I am back to fearing stomach cancer.
Thank you all for your support. It is so helpful to know that there are people who can somewhat understand what I am going through. This has completely taken over my life. I think one of the hardest things with health anxiety or health related obsessions of OCD, is believing that nothing physical is wrong and fully addressing the mental health. I am still so worried that they missed stomach cancer. My brain continues to think the "what ifs". I wonder, "what if the doctor didn't look enough into my stomach, what if I didn't relay the symptoms that would prompt them to look more closley, what if they didn't biopsy any suspicious spots so it came back as normal, what if stomach cancer isn't obvious on an endoscope". The doctor(s) went right into the duodenum so they would have had to look through my stomach. I also do think about the chances of two doctors missing stomach cancer. I am continuing to try to challenge this, but it is hard. I constantly have the urge to see if anywhere will give me a third scope, so I am currently working on fighting through this. I remember after the first scope, i told my husband, one more scope for a second opinion and I have to move on. I moved on... to colon cancer... now that, that fear has been cleared, I am back to fearing stomach cancer.
You need help for your anxiety, the tests you are getting are strongly not advised in pregnancy.
Your whole stomach is changing of course you'll have symptoms of something you are pregnant and to get another test is simply selfish, you already know you have nothing wrong with you.
I really am failing to understand how your doctor hasn't picked up on your overuse of tests and noticed some anxiety, I may not know your whole situation though.
Are you going private for these tests?
Casey,
One of the positive things I've noticed about your posts is the self-awareness of the challenges you face. That's light years ahead of many here on the boards. Your motivation and the fact you're seeking professional help is a huge positive as well.
I face different challenges from the real physical issues I face and it's sometimes a daily battle to do the things I need to do to maintain the progress I've made but I force myself to do them and while I falter occasionally, it's all about the getting up and continuing. We cannot expect to take every step forward. We must expect a step back now and again and not beat ourselves up about it.
Many here, including yourself have fears about illnesses that can put you six feet under. Read the quote in my signature and take it to heart. I actually have physical issues that can put me in the ground. Sadly, the mental issues and fear so many here have is doing that above ground. Living in fear is not really living.
IMO, I see you moving in a positive direction and you have motivating factors to continue doing so.
Positive thoughts
Casey, what happens after the potential 3rd opinion? A 4th? At what point will you call a halt to the stomach cancer scenario and what will you move onto next? You must be spending a hell of a lot of money on these tests and the hospital clinicians are complying with your HA by just taking your money and not appreciating the extent of your addiction for tests. Surely your therapist and your GP should liaise to stop this dangerous practice? If you can't stop yourself you have to get others to do it for you?
Hi guys!
Thank you Fishmanpa. I am really trying hard. I do have a good recognition of what is going on. It is unfortunately when I experience a "Symptom" of the condition I am fearing that all rationality goes out the window, I panic and try to go for a test. This behaviour of getting a test has continued to reinforce me and my actions, as each time I go and get a test, I get a clear result (or something minor found) and it relieves my anxiety. The problem is, with HA, you don't believe it and you question it. When i think rationally, the fact that I think two separate, experienced GI doctors missed esophageal or stomach cancer is completely inappropriate, but it;s those automatic thoughts.
Pulisa, I totally agree with you. It is actually one thing that keeps me from not getting a test. When I get the urge, I say to myself 'what would the third one do that is separate from the second?" or why would i believe the third one when I don't believe the second one. How many would i need to believe it (i know the answer would be that I could have 10 and still doubt). I am also very ashamed of what I have done to get these tests. My GP is not the one referring me to them and I am lucky she hasn't fired me as a patient. I go to hospitals to get them done. I will travel to different hospitals if one won't give me the test that i believe I need. My GP and I have tried to work out a plan that I go and see her first and she will be the gate keeper. Issue is, when I get really anxious, I don't seem to care about this plan and just want to alleviate the anxiety.
Your GP has a duty of care to you and should alert hospitals to what you are doing. This is dangerous, Casey, and it's no good her just talking to you about it. Your unborn baby is at risk too.
Just a thought but perhaps you can modify one the CBT worksheets to address your impulses. There's a worksheet in the FREE CBT course (link in my signature) that deals with your thought and the reality. Maybe by using it to record the thought and "rational" action as opposed to the reality would be beneficial. So your irrational though for example may be "I have stomach pain, it's cancer, need an endoscopy" and the rational action would be "I had two previously and they were clear. There's no need for it!"
Like I said, it seems to be a matter of controlling the impulse as opposed to the reality. Keep going to therapy. If you're not on meds, perhaps have that discussion as they may help in controlling the impulses.
Good luck and as always...
Positive thoughts
What does your obstetrician think about this? Does he or she know?
My OB does know about this. She recognizes that I have really severe anxiety related to my health and i have been connected with a special clinic about an hour from my house that deals only with mental health that really takes off during some sort of female reproductive cycle (ex pregnancy, postnatal, menopause). I have my second appointment there tomorrow with the psychiatrist. I'm also on the wait for specialized OCD counselling there.
Thank goodness. I hope you will be made a priority case, Casey because you desperately need specialised help and I think it's too much for you to try to challenge these behaviours and compulsions yourself.
Well, I still haven't gone to the hospital to try for another endoscope. It gets so hard when I feel food is stuck in my throat. I just panic and get so ready to run to the hospital. I've been reminding myself that I've had two endoscopes for the same issue and nothing but a small spot of reflux was found. If they found that, I'm sure they wouldn't miss a mass that's obstructing. It's wild how irrational health anxiety makes you! I'm also home alone on mat leave before the baby comes, which means I don't have my husband to talk to when my anxiety sky rockets and it's easy for me to go to the hospital.
I am going to a local hospital today... But for something different. I'm having my second appointment with the psychiatric team regarding my severe OCD.
Yeah i really do think its a hyper focus thing. I can eat things like pizza etc and I think I'm just paying attention to the sensation and thinking oh it's stuck! I also have reflux which I think can irritate the throat which probably doesn't help. The other thing for me is that it hasn't progressed. From what the GI doctor told me, things like esophageal cancer progress so rapidly that usually in a matter of a month you are struggling to get liquids down and bring up everything you eat. More conclusive, two cameras went down my throat LOL. I still wonder "what if they missed it though"
budgie1979
19-10-17, 16:56
Yeah i really do think its a hyper focus thing. I can eat things like pizza etc and I think I'm just paying attention to the sensation and thinking oh it's stuck! I also have reflux which I think can irritate the throat which probably doesn't help. The other thing for me is that it hasn't progressed. From what the GI doctor told me, things like esophageal cancer progress so rapidly that usually in a matter of a month you are struggling to get liquids down and bring up everything you eat. More conclusive, two cameras went down my throat LOL. I still wonder "what if they missed it though"
Have you written all of these things down in a thought record so that you can refer back to them when you get anxious? Thought records always seemed silly to me, but when I'm at my worst I really do find it helpful to actually write out all the reasons why I don't have what I think I might have.
FWIW, I have the food going down sensation too. My ENT recently diagnosed me with reflux based on looking down my throat, and guess what? All of a sudden the sensation of food getting stuck is so much worse. So while I'm sure I probably have a little esophageal irritation from the reflux, I really think anxiety magnifies the sensation tenfold. I think non-anxious people probably have the same sensation and barely notice it because they aren't worried about it. A few weeks ago I told my husband that I felt like when I ate there was a bunch of food just piling up at the base of my esophagus, and he said "Oh yeah, when I was at my worst with reflux I felt like that all the time." He had never mentioned it to me at the time, because he knew I was already worried about him, but apparently he was in just as much discomfort as I am now. The difference is, he doesn't have an anxiety disorder, so he was able to notice the symptoms, tell himself "this is reflux", and get on with his day.
I really hope that you can find some peace and move past this. You've had the tests, and you know logically that you just have reflux which will probably go away when the baby is born. What self-care are you doing to help you stay relaxed? Do you like to go for walks, or do any crafts? Have your therapists given you any mindfulness exercises to practice? One technique my therapist gave me when I was at my worst is to do something mundane like washing the dishes, but try to focus on every sensation (smell of the soap, tickle of the bubbles, the slippery feeling of soap on your hands, the sound of the water, etc). It sounds weird, but it's really very relaxing and centering, and is an easy thing you can incorporate into your daily routine.
Well just for a bit of an update....
I still have not gone to the hospital. The urge has been strong some days for a third endoscope but I have been able to fight it. My husband has said to me that even after a third scope, I will continue with the symptoms and still doubt. I don't know about you other reassurance seeking type sufferers but in my mind I always think, something is wrong, I just need one more test.
I went to the mental health clinic for follow up. Spoke with the psychiatrist a bit and I'm on the waitlist for intensive counselling for OCD. He told me that unfortunately OCD is one of the most difficult conditions. He has also told me that he has worked with many people with OCD and health based obsessions that have caused physical issues due to all of their test seeking. He told me that I need to stop seeking tests or the anxiety will just continue (which I know). I've been home on mat leave for the past week and a half and it's been difficult to not seek out the hospital when my anxiety peaks. I'm so convinced something is wrong with my stomach.
Thanks everyone for listening and giving input!!!
Casey have you ever suffered with ibs? I haven't seen many of your posts so don't know your exact symptoms but wondered if it was a issue for you.
Hope you're feeling better soon :)
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Hi Ellie,
I do have suspected IBS! My current issues have been more upper gastrointestinal lately (heartburn, stomach pain, indigestion).
Thanks for reaching out!
Hi Ellie,
I do have suspected IBS! My current issues have been more upper gastrointestinal lately (heartburn, stomach pain, indigestion).
Thanks for reaching out!
I have all of these, I went to the hospital once thinking I was having heart trouble and it turned out to be trapped wind :blush:
Pregnancy also makes IBS worse so that could explain your symptoms, remember heart burn means your baby will have hair! ;)
Casey, the psychiatrist is only telling you what we've all told you on this thread. Your symptoms are happily benign. If you continue to seek tests you will be harming both yourself and your baby. I think it's very serious that you can just walk into any hospital and buy tests without a professional medical referral and for people with HA it's cruel.
Hi everyone!
Just a bit of an update. Still have not been to the hospital. I have had many moments of panic where I am completely convinced I have stomach or esophageal cancer. I really hope that one day I have relief from this anxiety. It is really driving my poor husband mad. I still feel so desperate to have another endoscope done, that feeling has not gone away. I have been continuing to challenge my anxious thoughts and try to think more rationally. I often ask myself, what is more likely to be incorrect? That I am misinterpreting symptoms or that the doctors, endoscopes, biopsies and all of the other tests I've had missed everything.
For those of you that also struggle with reassurance seeking, I have been doing a lot of reading on OCD reassurance seeking and found a helpful article that recommends you ask yourself the following two questions before seeking reassurance:
1. Is your goal to remind yourself of what you already know?
2. Is your goal to reduce your anxiety about something?
If the answer is yes, then you should probably not do it. This information was from the OCDLA site.
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