Doctors aren't supporting me enough with an unknown, potentially serious condition

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Anonymous #1
#1
Report Thread starter 3 years ago
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This year, I peed blood for about a week. I went to the doctor, I was given antibiotics (despite no infection signs) and that didn't clear it. I went back, they were concerned, but nothing came of it.

Before this, I had had three bouts of bleeding from my bowel; large blood clots, abdominal pain and feeling very unwell (severe fatigue, sensitivity to light, very cold) whenever it happened. My bowel was swollen with patches of inflammation in the first investigation (when I was still unwell), but they've ignored that because my second examination that took place when I was well, came out clear unsurprisingly (and the pictures showed me just how swollen my bowels were compared to what a normal bowel should look like). So they've swept it under the rug with a "well you're not ill now so what's the problem?" attitude.

The first time I was ill, I had to go to hospital on my college trip! Months after this, a doctor who was keeping an eye out on me, who I gave another sample with blood in, sent me to hospital immediately and told me to exaggerate and make out I was in agony, as that would be the only way they would give me an investigation, which just shows how terrible the NHS is. I didn't overreact or lie, though my stomach was so bloated, I could barely move. After about 5 hours in A&E, I was sent home with no answers or investigation.

I've gone to the doctors a few times, asking for answers, but nothing. Not even a urology referral. I've had gastroenterology (extremely rude nurses to add), ironically, talking out their ass with ridiculous "ideas" of what could've happened like a cut bowel. But a cut bowel doesn't cause patches of inflammation, swollen bowels, with no sign of a cut, making you very unwell and happens three times. They just said I had bad bowels. Bleeding from the bladder months later with no other symptoms just added to my concern.

I am constantly going back to the doctors, them looking at me in wonder and then sending me for blood tests or urine samples which always come back normal as I am not unwell at the time. I feel like I have been forgotten and left in the dark.

I have health conditions that are a result of a genetic mutation. In that gene, the immune system is affected (I have always had a terrible immune system*) and I have had Erythyma Nodosum in the past (this should've been investigated more thoroughly to find a cause, but I only received a blood test), which is basically where my immune system attacked my leg.
Many people with my conditions have MCAS which is a similar thing of the immune system messing up. I am wondering if maybe my immune system is attacking the cells in my bladder and bowels, causing inflammation and bleeding. I brought this up to a doctor but got nothing out of it, just blood test and sample again; I was hoping to see an immunologist.

* At the end of last year and into this year, I had tonsillitis 4 times, a chest infection and a bad head cold, one after the other. They were unrelenting, every week I was getting ill and I had to have antibiotics to stop this onslaught of illnesses!
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Kindred
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(Original post by Anonymous)
This year, I peed blood for about a week. I went to the doctor, I was given antibiotics (despite no infection signs) and that didn't clear it. I went back, they were concerned, but nothing came of it.

Before this, I had had three bouts of bleeding from my bowel; large blood clots, abdominal pain and feeling very unwell (severe fatigue, sensitivity to light, very cold) whenever it happened. My bowel was swollen with patches of inflammation in the first investigation (when I was still unwell), but they've ignored that because my second examination that took place when I was well, came out clear unsurprisingly (and the pictures showed me just how swollen my bowels were compared to what a normal bowel should look like). So they've swept it under the rug with a "well you're not ill now so what's the problem?" attitude.

The first time I was ill, I had to go to hospital on my college trip! Months after this, a doctor who was keeping an eye out on me, who I gave another sample with blood in, sent me to hospital immediately and told me to exaggerate and make out I was in agony, as that would be the only way they would give me an investigation, which just shows how terrible the NHS is. I didn't overreact or lie, though my stomach was so bloated, I could barely move. After about 5 hours in A&E, I was sent home with no answers or investigation.

I've gone to the doctors a few times, asking for answers, but nothing. Not even a urology referral. I've had gastroenterology (extremely rude nurses to add), ironically, talking out their ass with ridiculous "ideas" of what could've happened like a cut bowel. But a cut bowel doesn't cause patches of inflammation, swollen bowels, with no sign of a cut, making you very unwell and happens three times. They just said I had bad bowels. Bleeding from the bladder months later with no other symptoms just added to my concern.

I am constantly going back to the doctors, them looking at me in wonder and then sending me for blood tests or urine samples which always come back normal as I am not unwell at the time. I feel like I have been forgotten and left in the dark.

I have health conditions that are a result of a genetic mutation. In that gene, the immune system is affected (I have always had a terrible immune system*) and I have had Erythyma Nodosum in the past (this should've been investigated more thoroughly to find a cause, but I only received a blood test), which is basically where my immune system attacked my leg.
Many people with my conditions have MCAS which is a similar thing of the immune system messing up. I am wondering if maybe my immune system is attacking the cells in my bladder and bowels, causing inflammation and bleeding. I brought this up to a doctor but got nothing out of it, just blood test and sample again; I was hoping to see an immunologist.

* At the end of last year and into this year, I had tonsillitis 4 times, a chest infection and a bad head cold, one after the other. They were unrelenting, every week I was getting ill and I had to have antibiotics to stop this onslaught of illnesses!
Push for a referral to a urologist and mention your immune system concerns when you see them.
Look into the possibility of going private. It's costly, but could be worth it if you GP is more willing to refer you private and that appointment then leads to you being taken seriously on the NHS.
Check your and your families work bonuses to see if health insurance is included and if it would be worth you getting on it.

Otherwise, keep nagging your GP for a referral and seeing them every time anything happens concerning it. Any time they say "this is clear" ask "what is it then?". Stay persistent.

It sucks when you're not taken seriously with something obviously wrong. Unfortunately you're pretty much limited to annoying people until things get done.
It will also help to keep a written record of anything that happens (maybe even with photo evidence) so you can show it to a specialist when you eventually get referred and avoid the you being well at that moment issue.

Sorry I can't give any more inspiring advice. I hope that helps though.
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Anonymous #1
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Anonymous #1
#4
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I've seen on the news that the NHS are trying to reduce referrals for some reason. They're always so quick to refer me to physio but not the ones that are the most important. I guess I'll have to go to a doctor again and refuse a blood test and sample. I've had enough of them, I need to see a specialist. Nothing has happened since, so they like to ignore it as it's in the past, thinking I'll just be happy being "well", but no-one would be happy after experiencing these health issues. If the doctor's family or themselves were experiencing what I was, they would have much to say about it and would demand to be seen!

(Original post by Kindred)
Push for a referral to a urologist and mention your immune system concerns when you see them.
Look into the possibility of going private. It's costly, but could be worth it if you GP is more willing to refer you private and that appointment then leads to you being taken seriously on the NHS.
Check your and your families work bonuses to see if health insurance is included and if it would be worth you getting on it.

Otherwise, keep nagging your GP for a referral and seeing them every time anything happens concerning it. Any time they say "this is clear" ask "what is it then?". Stay persistent.

It sucks when you're not taken seriously with something obviously wrong. Unfortunately you're pretty much limited to annoying people until things get done.
It will also help to keep a written record of anything that happens (maybe even with photo evidence) so you can show it to a specialist when you eventually get referred and avoid the you being well at that moment issue.

Sorry I can't give any more inspiring advice. I hope that helps though.
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Etomidate
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Patchy inflammation on your colonoscopy and erythema nodosum sounds an awful lot like inflammatory bowel disease.

Surely they took a biopsy of the inflamed bowel to gain a diagnosis, did they not?
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Anonymous #1
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They ruled that out. I had biopsies and again, it showed inflammation but everything has been set at normal and clear.

Also, ever since this all started, nearly every time I pass a stool, it is covered almost entirely with mucus.

(Original post by Etomidate)
Patchy inflammation on your colonoscopy and erythema nodosum sounds an awful lot like inflammatory bowel disease.

Surely they took a biopsy of the inflamed bowel to gain a diagnosis, did they not?
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Reality Check
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(Original post by Etomidate)
Patchy inflammation on your colonoscopy and erythema nodosum sounds an awful lot like inflammatory bowel disease.

Surely they took a biopsy of the inflamed bowel to gain a diagnosis, did they not?
Damn Florida - that was my favourite username for such a long time!
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Anonymous #1
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OxFossil
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(Original post by Kindred)
Push for a referral to a urologist and mention your immune system concerns when you see them.
Look into the possibility of going private. It's costly, but could be worth it if you GP is more willing to refer you private and that appointment then leads to you being taken seriously on the NHS.
Check your and your families work bonuses to see if health insurance is included and if it would be worth you getting on it.

Otherwise, keep nagging your GP for a referral and seeing them every time anything happens concerning it. Any time they say "this is clear" ask "what is it then?". Stay persistent.

It sucks when you're not taken seriously with something obviously wrong. Unfortunately you're pretty much limited to annoying people until things get done.
It will also help to keep a written record of anything that happens (maybe even with photo evidence) so you can show it to a specialist when you eventually get referred and avoid the you being well at that moment issue.

Sorry I can't give any more inspiring advice. I hope that helps though.
This is pretty good advice.

In any case, keeping a record of your symptoms will always be useful for you to see if there are patterns in your symptoms, even if it is less useful for your doctor(s).

I always try to be as clear as possible with my medics about their understanding of my conditions and their plans for management. With some of them, this is hard work! But the basic questions are: "So what do you think is causing this?" "So what do you think is the best way of managing this?" and "So the plan is that I take these tablets for X weeks, then see you again, but come back sooner if I get increase in symptom Y?". If I have a specific worry - for example, that my symptoms are linked to being on a specific med for too long, I try to ask about this as directly as I can - "One worry I have is that it may be caused by being on drug Z for such a long time. What do you think?"

Likewise, if you want a further specialist referral, ask your GP directly about when and how that would be triggered.

If you are still unhappy with all your GPs, consider a private assessment. You generally need a referral letter from your GP to do this, plus up to about £200 for a first consultation. Bear in mind that systemic auto-immune disorders are usually treated by rheumatologists, not immunologists.

Sorry if these points are too basic, but TSR probably isn't the place for clinical case conferences!
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Anonymous #1
#10
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I have asked specialists/doctors directly as you said and they just sigh, tell me they don't know and that doctors aren't magicians and don't know everything. Or even worse, they are obviously caught out and not wanting to lose their pride, they start waffling about all kinds of very minor things to make it look like they know something. I'd rather a doctor just say "I don't know" than underestimate my condition through waffling. They've gone from a cut bowel to lacking a type of enzyme in my bowel. Another doctor once said that I could be in a group of people that always have clear/normal results, despite something going on medically.

I see a rheumatologist yearly who is absolutely dreadful. He makes us wait up to 2 hours after my appointment time and then I am only in there for a maximum of 10 minutes. He just talks over me and then rudely dismisses me; doesn't even say bye or wish me well. When I see him again though, I intend on bringing this up with him, if I can, but I have a strong feeling he will dismiss it before I can get all the facts out to him. He will likely focus more on the normal results (despite the inflammation shown in the first one) and not connect the dots or see what I'm trying to get at.

I guess I'll just have to go back to the GP again and again tell them I'm fed up and want someone to connect the dots and that I am not having more blood tests/samples done. I want to see a specialist who can help work out what this all is! And I would feel a little more comfortable having my bladder checked, as it should've been anyway!


(Original post by OxFossil)
This is pretty good advice.

In any case, keeping a record of your symptoms will always be useful for you to see if there are patterns in your symptoms, even if it is less useful for your doctor(s).

I always try to be as clear as possible with my medics about their understanding of my conditions and their plans for management. With some of them, this is hard work! But the basic questions are: "So what do you think is causing this?" "So what do you think is the best way of managing this?" and "So the plan is that I take these tablets for X weeks, then see you again, but come back sooner if I get increase in symptom Y?". If I have a specific worry - for example, that my symptoms are linked to being on a specific med for too long, I try to ask about this as directly as I can - "One worry I have is that it may be caused by being on drug Z for such a long time. What do you think?"

Likewise, if you want a further specialist referral, ask your GP directly about when and how that would be triggered.

If you are still unhappy with all your GPs, consider a private assessment. You generally need a referral letter from your GP to do this, plus up to about £200 for a first consultation. Bear in mind that systemic auto-immune disorders are usually treated by rheumatologists, not immunologists.

Sorry if these points are too basic, but TSR probably isn't the place for clinical case conferences!
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OxFossil
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In that case, my only further suggestion would be to join a users' forum like those at Health Unlocked, where you can share your experiences with others with chronic illness
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Anonymous #1
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Thanks for responding and that heath unlocked site looks really good!

(Original post by OxFossil)
In that case, my only further suggestion would be to join a users' forum like those at Health Unlocked, where you can share your experiences with others with chronic illness
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Jamie
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(Original post by Anonymous)
I have asked specialists/doctors directly as you said and they just sigh, tell me they don't know and that doctors aren't magicians and don't know everything. Or even worse, they are obviously caught out and not wanting to lose their pride, they start waffling about all kinds of very minor things to make it look like they know something. I'd rather a doctor just say "I don't know" than underestimate my condition through waffling. They've gone from a cut bowel to lacking a type of enzyme in my bowel. Another doctor once said that I could be in a group of people that always have clear/normal results, despite something going on medically.

I see a rheumatologist yearly who is absolutely dreadful. He makes us wait up to 2 hours after my appointment time and then I am only in there for a maximum of 10 minutes. He just talks over me and then rudely dismisses me; doesn't even say bye or wish me well. When I see him again though, I intend on bringing this up with him, if I can, but I have a strong feeling he will dismiss it before I can get all the facts out to him. He will likely focus more on the normal results (despite the inflammation shown in the first one) and not connect the dots or see what I'm trying to get at.

I guess I'll just have to go back to the GP again and again tell them I'm fed up and want someone to connect the dots and that I am not having more blood tests/samples done. I want to see a specialist who can help work out what this all is! And I would feel a little more comfortable having my bladder checked, as it should've been anyway!
You are frustrated because no one has come up with a unifying diagnosis.

Get over it.
I sympathise, but get over it.

Because at the end of the day it is not worth the resources nor the risk to keep repeatedly tesitng you in the hope that finally a cause is found. Sometimes a watchful wait is the best approach.

Furthermore I suspect you have had a rather large amount of testing and input and quite an array of expertise.
Sometimes doctors simply cannot say what it is, but can only say what it isn't.
The skill - as other vague nameless chronic disease sufferers will tell you is to get over it and get on with life. not to obsess and not to go down the rage route.
The advice about keeping symptom logs is reasonable and essentially you need to live life and wait for either something to happen or everything to settle.

Or start lobbing cash at some private doc to do every test under the sun (and perhaps give you the name of the disease for which no treatment will be warranted...)
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Anonymous #1
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I have got over the bowel thing but to have bleeding from the bladder, which should be fully investigated and it isn't is frustrating. I had a full investigation into my bowels, but didn't have a full investigation for my bladder. It is not comfortable to be always expecting to have something seriously go wrong with you or have internal bleeding again. When these things happen, I get sick for weeks and it affects my life. It's not fair to live that way but doctors don't think about that.

(Original post by Jamie)
You are frustrated because no one has come up with a unifying diagnosis.

Get over it.
I sympathise, but get over it.

Because at the end of the day it is not worth the resources nor the risk to keep repeatedly tesitng you in the hope that finally a cause is found. Sometimes a watchful wait is the best approach.

Furthermore I suspect you have had a rather large amount of testing and input and quite an array of expertise.
Sometimes doctors simply cannot say what it is, but can only say what it isn't.
The skill - as other vague nameless chronic disease sufferers will tell you is to get over it and get on with life. not to obsess and not to go down the rage route.
The advice about keeping symptom logs is reasonable and essentially you need to live life and wait for either something to happen or everything to settle.

Or start lobbing cash at some private doc to do every test under the sun (and perhaps give you the name of the disease for which no treatment will be warranted...)
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Jamie
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#15
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(Original post by Anonymous)
I have got over the bowel thing but to have bleeding from the bladder, which should be fully investigated and it isn't is frustrating. I had a full investigation into my bowels, but didn't have a full investigation for my bladder. It is not comfortable to be always expecting to have something seriously go wrong with you or have internal bleeding again. When these things happen, I get sick for weeks and it affects my life. It's not fair to live that way but doctors don't think about that.
At any point you can develop cancer.
At any point you can develop an autoimmune disease
At any point you can trip and fall in just the wrong way and crack your head open.

Don't live that way, just get on with life.


You were investigated, you just want more investigations.
So lets say they do a flexi cystoscopy. Its also nomral (highly like as the haematuria has resolved)
"O but my pee was normal at the time, they should do it when my pee was not normal"
You need to flip your thinking.
Its not that doctors dont care, its that they have a different way of thinking. And that is
'Don't perform a test if it is not going to change the treatment'.

Given at the moment further testing is unlikely to change 'treatment'...no testing.

If new symptoms arise that might point in a new direction then testing might be warranted.

But until then, as Ms Carlisle said 'live your life be free'. Or not, your choice.
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