› Forums › General Melanoma Community › How do you get doctors to be concerned?
- This topic has 12 replies, 3 voices, and was last updated 9 years, 11 months ago by
holy moly melanomy.
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- September 24, 2015 at 7:05 pm
Hello All! I am wondering if I can pick your brain on something. How do you get doctors to have a little bit of concern about your health?
Along with Melanoma, I also have Ulcerative Colitis throughout my entire large intestine (DX 2007). The last couple of years I have had this pain that I assumed was the U.C. July of this year I had my 2 year colonoscopy and everything looked better than it has in years – no ulceration, very minimal inflammation – which is great news, however it doesn't explain the pain.
Pain is all day, every day. Mainly lower right side, achy at best – sometimes more crampy. A few times a week I will get an intense stabbing pain that luckily only last a few seconds. I can actually feel my intestines throbbing during "bad days".
Following the great colonoscopy, I went back to my PCP (Kaiser) and informed them about the pain. She suggested a PAP and an ultrasound to check my internal lady bits: uterus, fallopian tubes, ovaries and bladder are tip-top shape. Back to the drawing board.
Two weeks ago, I passed blood. The following day, I got up to go to the bathroom and couldn't stand up straight because of the pain – I thought I was going to collapse.
Last Friday I saw a Gastro doc who ordered several blood panel tests and everything is in the normal range except for my lymphocytes being out of range low – some others are right on the cusp of being either too high or two low (examples: C-Reactive Protein, Basophils & RBC Nucleated). She also gave me an anti-spasmodic to take and she assured me this would help with some of the pain.
Fast forward to almost a week later – not really helping. Tuesday morning @ 3am I was lying in bed and had the sharpest pain that I have had yet. I wrote the doctors and told them what is going on and asked for a scan or something (which I'd love the pill camera just for the damn science of it).
I got a response this morning saying that "it's likely I have IBS". I cried. IBS doesn't bleed. IBS doesn't wake you from a sleep for pain. How do I get them to be concerned??!
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- September 24, 2015 at 7:47 pm
Sorry you are going through so much pain. I would insist that the Camera Pill be dont. My husband sufferred for a year with many trips to ER for abdominal pain, blood loss, etc, just to have scope after scope and colonoscopy after colonoscopy done and fining nothing. I finally went to another doctor who suggested the camera scope, as the the scopes can not see all of your small intenstine. There is 20 feet and the middle cant be reached with a scope.
After becoming so anemic they had to keep doing blood transfusions, the camera pill was done. They found his melamona has metasticized to his small intestine and causing the bleeding.
Do you pains come hours after eating at all? His would come about 3-5 hours after eating because it took that long for the meal to pass and was not able to go through the obstruction.
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- September 24, 2015 at 7:47 pm
Sorry you are going through so much pain. I would insist that the Camera Pill be dont. My husband sufferred for a year with many trips to ER for abdominal pain, blood loss, etc, just to have scope after scope and colonoscopy after colonoscopy done and fining nothing. I finally went to another doctor who suggested the camera scope, as the the scopes can not see all of your small intenstine. There is 20 feet and the middle cant be reached with a scope.
After becoming so anemic they had to keep doing blood transfusions, the camera pill was done. They found his melamona has metasticized to his small intestine and causing the bleeding.
Do you pains come hours after eating at all? His would come about 3-5 hours after eating because it took that long for the meal to pass and was not able to go through the obstruction.
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- September 24, 2015 at 8:36 pm
Thanks for the response 🙂 I'd love the pill cam – that is SO interesting to me. The last gastro doc that I saw said that she didn't think the pain I am having has to do with the U.C. because it was so glorious. Pain is pretty steady throghout the day. Currently I am taking anywhere from 4-6 500mg Tylenol – by the end of the day it's managed. The sharp, stabbing pain is pretty random, most of the time being the morning before I've eaten anything or taken any meds, however the morning is when I spend my 'bathroom' time, if ya catch my drift…so it could be from that and all the fun stuff moving through my system.
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- September 24, 2015 at 8:36 pm
Thanks for the response 🙂 I'd love the pill cam – that is SO interesting to me. The last gastro doc that I saw said that she didn't think the pain I am having has to do with the U.C. because it was so glorious. Pain is pretty steady throghout the day. Currently I am taking anywhere from 4-6 500mg Tylenol – by the end of the day it's managed. The sharp, stabbing pain is pretty random, most of the time being the morning before I've eaten anything or taken any meds, however the morning is when I spend my 'bathroom' time, if ya catch my drift…so it could be from that and all the fun stuff moving through my system.
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- September 24, 2015 at 8:36 pm
Thanks for the response 🙂 I'd love the pill cam – that is SO interesting to me. The last gastro doc that I saw said that she didn't think the pain I am having has to do with the U.C. because it was so glorious. Pain is pretty steady throghout the day. Currently I am taking anywhere from 4-6 500mg Tylenol – by the end of the day it's managed. The sharp, stabbing pain is pretty random, most of the time being the morning before I've eaten anything or taken any meds, however the morning is when I spend my 'bathroom' time, if ya catch my drift…so it could be from that and all the fun stuff moving through my system.
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- September 24, 2015 at 7:47 pm
Sorry you are going through so much pain. I would insist that the Camera Pill be dont. My husband sufferred for a year with many trips to ER for abdominal pain, blood loss, etc, just to have scope after scope and colonoscopy after colonoscopy done and fining nothing. I finally went to another doctor who suggested the camera scope, as the the scopes can not see all of your small intenstine. There is 20 feet and the middle cant be reached with a scope.
After becoming so anemic they had to keep doing blood transfusions, the camera pill was done. They found his melamona has metasticized to his small intestine and causing the bleeding.
Do you pains come hours after eating at all? His would come about 3-5 hours after eating because it took that long for the meal to pass and was not able to go through the obstruction.
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- September 24, 2015 at 7:59 pm
What you're describing sounds serious. I'd absolutely be very concerned too, and frustrated at getting no answers. I've heard many say Kaiser can miss things and you get passed off like you are describing. They are supposed to have a hospital patient advocacy program where you might be able to get help with your case, and help to try to ride herd on the "team" of doctors. I've heard other Kaiser patients say that they have had to fight to get the care they needed.
When I got diagnosed with stage IV melanoma, I switched to a PPO at the next open season, knowing Kaiser only had 1 melanoma specialist, possibly nationally AFAIK. I had the luxury of multiple insurance choices, not everybody does.
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- September 24, 2015 at 7:59 pm
What you're describing sounds serious. I'd absolutely be very concerned too, and frustrated at getting no answers. I've heard many say Kaiser can miss things and you get passed off like you are describing. They are supposed to have a hospital patient advocacy program where you might be able to get help with your case, and help to try to ride herd on the "team" of doctors. I've heard other Kaiser patients say that they have had to fight to get the care they needed.
When I got diagnosed with stage IV melanoma, I switched to a PPO at the next open season, knowing Kaiser only had 1 melanoma specialist, possibly nationally AFAIK. I had the luxury of multiple insurance choices, not everybody does.
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- September 24, 2015 at 8:44 pm
You know, Kaiser is great for people that don't have much medically going on. The ease of it is wonderful – you don't have to go to outside labs, they call you when you're due for follow up – in general it's smart.
People that have chronic conditions, cancers or other serious illness it's differnet. I haven't had the same doctor for long periods of time. My derm that I've seen a few times is a N.P. (although she's VERY thorough). It's funny because at the dermatologist there, they have a poster on the wall that describes Melanoma and it says "If you have been diagnosed with melanoma, you should see a Melanoma specialist" – and you're right, they only have ONE and you can only see him if you're stage III or higher.
Sometimes I get a wild hair and think of going to a non-Kaiser ER and claiming mucho pain and other symptoms, in hopes that other hospital will treat me – even though I know that they would just transfer me to a Kaiser facility. I've thought about getting an indiviual insurance plan not through my employer so I could see my melanoma specialist prior to Kaiser – I loved him.
Anywho – thanks for the response. I'd rather be the annoying person complaining all the time rather than hold my tongue. I can't risk that anymore.
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- September 24, 2015 at 8:44 pm
You know, Kaiser is great for people that don't have much medically going on. The ease of it is wonderful – you don't have to go to outside labs, they call you when you're due for follow up – in general it's smart.
People that have chronic conditions, cancers or other serious illness it's differnet. I haven't had the same doctor for long periods of time. My derm that I've seen a few times is a N.P. (although she's VERY thorough). It's funny because at the dermatologist there, they have a poster on the wall that describes Melanoma and it says "If you have been diagnosed with melanoma, you should see a Melanoma specialist" – and you're right, they only have ONE and you can only see him if you're stage III or higher.
Sometimes I get a wild hair and think of going to a non-Kaiser ER and claiming mucho pain and other symptoms, in hopes that other hospital will treat me – even though I know that they would just transfer me to a Kaiser facility. I've thought about getting an indiviual insurance plan not through my employer so I could see my melanoma specialist prior to Kaiser – I loved him.
Anywho – thanks for the response. I'd rather be the annoying person complaining all the time rather than hold my tongue. I can't risk that anymore.
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- September 24, 2015 at 8:44 pm
You know, Kaiser is great for people that don't have much medically going on. The ease of it is wonderful – you don't have to go to outside labs, they call you when you're due for follow up – in general it's smart.
People that have chronic conditions, cancers or other serious illness it's differnet. I haven't had the same doctor for long periods of time. My derm that I've seen a few times is a N.P. (although she's VERY thorough). It's funny because at the dermatologist there, they have a poster on the wall that describes Melanoma and it says "If you have been diagnosed with melanoma, you should see a Melanoma specialist" – and you're right, they only have ONE and you can only see him if you're stage III or higher.
Sometimes I get a wild hair and think of going to a non-Kaiser ER and claiming mucho pain and other symptoms, in hopes that other hospital will treat me – even though I know that they would just transfer me to a Kaiser facility. I've thought about getting an indiviual insurance plan not through my employer so I could see my melanoma specialist prior to Kaiser – I loved him.
Anywho – thanks for the response. I'd rather be the annoying person complaining all the time rather than hold my tongue. I can't risk that anymore.
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- September 24, 2015 at 7:59 pm
What you're describing sounds serious. I'd absolutely be very concerned too, and frustrated at getting no answers. I've heard many say Kaiser can miss things and you get passed off like you are describing. They are supposed to have a hospital patient advocacy program where you might be able to get help with your case, and help to try to ride herd on the "team" of doctors. I've heard other Kaiser patients say that they have had to fight to get the care they needed.
When I got diagnosed with stage IV melanoma, I switched to a PPO at the next open season, knowing Kaiser only had 1 melanoma specialist, possibly nationally AFAIK. I had the luxury of multiple insurance choices, not everybody does.
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