Type 2 How do you cope with "we can't help you" ?

[Mep]

Hi everyone

I had a long awaited urologist appointment today and I was seriously hoping for a decent answer and a discussion on a treatment plan. What I got instead was a lot of mumbo jumbo doc speak for "I don't really know what you have" and "I can't help you". Just to give you a background, I had already been diagnosed by a previous urologist as having interstitial cystitis, but then I had a string of kidney infections which I got hospitalised for a few times. This same urologist told me I've never had a kidney infection... strange that 3 different hospitals and docs told me otherwise. Also I wasn't getting an effective treatment plan for my condition I was diagnosed with... and I'm not getting relief or reprieve from symptoms. So my GP said that's it... we need a 2nd opinion on this. So here I am at another dead end and feeling rather deflated. I can't help thinking my sugar is so out of whack lately from all the pain and things I've been dealing with and today I had hope that finally I'll get some resolve. I'm yet to get treatment for another condition resolved too... but another story. So what I'm saying here is that the feelings that come up when you have a let down are just so overwhelming and I feel powerless. It's like no one cares. And get this... I have to go back the urologist that was rude and contradicting to me the first time as it turns out the condition I supposedly don't have (according to this current guy) is only treated by her where I live.... it seems like no other urologist knows about the condition. If I told you what was said in my consult today you'd be laughing... when I recap it in my head it is like I'm replaying a comedy.... except it is me that is copping the brunt of the jokes. Just when I think I'm used to let downs by medical professionals, when I get another one it doesn't hurt any less. It's so frustrating. I'm currently a bit stressed out over it and teary. I'm arranged to see a counsellor, but earliest I can see them is Monday. I can see my GP's face already when I have to see him to discuss it... he is as frustrated as I am. Poor doc. I don't know why I seem to have conditions that specialists are clueless about? It doesn't help my diabetes though having no answers and dealing with the stress of it all... ineffective treatment as well which means I'm not sleeping too well at all. I'm just hanging in there and trying not to let it do my head in. argghh. Anyone else have this type of experience that seems like ground hog day with medical professionals? I'm sure there would be a few of you. But I'm interested in how you coped... eg. any sure ways you got through the maze.

 

[Daibell]

Hi. First you need to eliminate the possibility of candida which will appear if your blood sugar is into the teens of mmol. After that and with relatively good blood sugar you obviously need to try to find a good urologist.

 

[Mep]

Hi. First you need to eliminate the possibility of candida which will appear if your blood sugar is into the teens of mmol. After that and with relatively good blood sugar you obviously need to try to find a good urologist.

thanks, but I don't have thrush... I've been diagnosed with a chronic bladder condition (not a uti) that I've been living with for a couple of years and I was seeking a second opinion. I've been treated for thrush numerous times in the past though. Thanks for your reply.

 

[ButtterflyLady]

I have had this problem from time to time over the years, of being let down by doctors when they run out of answers. How I coped was to do my own reading and not rest until I had found the info I needed online. Then I would take it to the doctor and politely insist that they engage with it. Getting second and third opinions is a good idea. So is taking a support person to appointments. The rude ones seem better behaved when they know they are being watched. Writing to the doctor can work too. If you keep it brief and to the point, and remind them of the facts that are known, eg test results, and ask questions, that usually works better than a long winded letter.

Many years ago I saw a urologist for interstitial cystitis and he put me on oral anti-fungals and that seemed to resolve it. I think that even without clear thrush symptoms, candida could still be an issue.

Have you been able to find information about what treatments people have used for IC?

 

[Mep]

I have had this problem from time to time over the years, of being let down by doctors when they run out of answers. How I coped was to do my own reading and not rest until I had found the info I needed online. Then I would take it to the doctor and politely insist that they engage with it. Getting second and third opinions is a good idea. So is taking a support person to appointments. The rude ones seem better behaved when they know they are being watched. Writing to the doctor can work too. If you keep it brief and to the point, and remind them of the facts that are known, eg test results, and ask questions, that usually works better than a long winded letter.

Many years ago I saw a urologist for interstitial cystitis and he put me on oral anti-fungals and that seemed to resolve it. I think that even without clear thrush symptoms, candida could still be an issue.

Have you been able to find information about what treatments people have used for IC?

Thanks

Yes, I'm part of a couple of support groups for IC so I have read a lot of information and had a lot of responses from other people with the condition. Some of them have lived with it for many years. There is no cure of the condition, just that sometimes people can go into remission for a while apparently. Because docs haven't discovered the cause of it, they really are just treating the symptoms of it generally. The problem I'm having is that I'm not really getting the help. Now I'm having to go back to the first urologist by the sounds of it and she was so arrogant with me and my last discussion with her she sounded rather confused about what my problem is... she said I definitely had interstitial cystitis, that I have never had kidney infections, and she thought I had fowlers syndrome also but then changed her mind and said maybe you have a neurological problem that is also affecting your bladder too... so she wanted me to see a neurologist. It sounded like she was palming me off and didn't want to help. If she can confirm I have IC then she should be providing an effective treatment plan at least. This current urologist I'm clearly at a dead end with. I think I'm just sick and tired of this type of nonsense. I just don't seem to get anywhere. It's harder on me too because I don't have close family or friends that know much about my health to come with me to advocate. I've become more isolated and lonely thanks to illnesses.. This year I've probably only seen my family about 3 times. I'm not sure when I'll see them next. I see my friends on average every 6 months probably as well.... so I'm not that social... but I've been quite unwell. I put all my energy into work and what I have to do and that's it. I do most of my communicating online. So these docs are just doing my head in at the moment. I will hopefully get things sorted at some point... well I can only hope.

 

[ButtterflyLady]

Thanks

Yes, I'm part of a couple of support groups for IC so I have read a lot of information and had a lot of responses from other people with the condition. Some of them have lived with it for many years. There is no cure of the condition, just that sometimes people can go into remission for a while apparently. Because docs haven't discovered the cause of it, they really are just treating the symptoms of it generally. The problem I'm having is that I'm not really getting the help. Now I'm having to go back to the first urologist by the sounds of it and she was so arrogant with me and my last discussion with her she sounded rather confused about what my problem is... she said I definitely had interstitial cystitis, that I have never had kidney infections, and she thought I had fowlers syndrome also but then changed her mind and said maybe you have a neurological problem that is also affecting your bladder too... so she wanted me to see a neurologist. It sounded like she was palming me off and didn't want to help. If she can confirm I have IC then she should be providing an effective treatment plan at least. This current urologist I'm clearly at a dead end with. I think I'm just sick and tired of this type of nonsense. I just don't seem to get anywhere. It's harder on me too because I don't have close family or friends that know much about my health to come with me to advocate. I've become more isolated and lonely thanks to illnesses.. This year I've probably only seen my family about 3 times. I'm not sure when I'll see them next. I see my friends on average every 6 months probably as well.... so I'm not that social... but I've been quite unwell. I put all my energy into work and what I have to do and that's it. I do most of my communicating online. So these docs are just doing my head in at the moment. I will hopefully get things sorted at some point... well I can only hope.

Maybe there is a professional or volunteer worker who could come with you? It can be anyone really, just someone to make up the numbers and prick their conscience a little. It's also nice to have someone on your team; it can boost your confidence. There might be support/social worker types in non-NHS organisations such as community agencies or church based social services. It's a small amount of time for them but it could make a huge difference for you.

Are any of the treatments available to a GP? For me, the key to managing several different disorders that may or may not have specialists involved, has been to build a really good relationship with my GP. When needed, she will write to them, and they are more inclined to listen to her than they are me. My GP has also been able to prescribe meds that in the past only specialists would be able to. This might be a NZ thing, though. There has been a move in this country to empower GPs to deal with more things than in the past.

 

[Mep]

Maybe there is a professional or volunteer worker who could come with you? It can be anyone really, just someone to make up the numbers and prick their conscience a little. It's also nice to have someone on your team; it can boost your confidence. There might be support/social worker types in non-NHS organisations such as community agencies or church based social services. It's a small amount of time for them but it could make a huge difference for you.

Are any of the treatments available to a GP? For me, the key to managing several different disorders that may or may not have specialists involved, has been to build a really good relationship with my GP. When needed, she will write to them, and they are more inclined to listen to her than they are me. My GP has also been able to prescribe meds that in the past only specialists would be able to. This might be a NZ thing, though. There has been a move in this country to empower GPs to deal with more things than in the past.

Yeh I'm in Australia... I have a very good GP, being seeing him for 10 years. He has seen me go through a lot. He gets equally frustrated with these specialists too as he is asking them for advice. I've found from experience that my GP is usually always right... he's barely wrong with me. He was the first to say I had a GI motility problem, he was also the first to say I have IC. But what happens here is once the diagnosis and treatment plan is given by a specialist, my GP just monitors me. He then will refer me back to specialists if needed for review, he will also contact them for advice. This is what is happening with me at the moment. The urologist appointment I had yesterday was supposed to provide me with a definite diagnosis and treatment plan... but I just got a lot of contradiction in that consult. Then he let me know that he doesn't even treat the condition... so basically I've wasted an entire year in hopes that he will be better than the previous urologist. Oh well. I keep having this problem though... it's not new for me. It seems to me that if a specialist can't fit you in their 'box' then you are just too hard for them to figure out. My gastroenterologist and my endocrinologist are both very smart men and they train other doctors and teach at the uni's. They're probably the best specialists I've ever had. But even so, my gastroenterologist is a bit stumped with me right now. He will think for me though which a nice change.... like with my last endoscopy and colonoscopy he decided to do more than the routine biopsies on me... the previous gastroenterologists never did this. He also was the first to let me I actually have illnesses and it's not in my head or 'functional' as the others would say (their term they use to describe anything when they don't know I've worked out). Yeh I'm not sure who I can get to advocate for me. I usually get things worked out eventually. My GP has been good at sticking up for me. He will tell me exactly what he thinks of a specialist... when he gets ridiculous letters from them I can see he is so frustrated. He wants to help me but he is a GP and not specialised in all these areas I have a problem with. He has been a doc over 30 years and has told me numerous times I'm the most severe GI motility patient he has ever seen. But trying to get help from other docs is the problem really... and I also find they don't look at your overall health either. They're only interested in what they specialise in... so my GP has had a look at their responses and he shakes his head and says they seem to not be factoring in this or that that you already have been diagnosed with. Sorry for long response. But just so you get the idea. I do think my GP advocates for me well. I haven't seen him for well over a month and I've had a lot happen.... he's probably wondering where I am as I'm usually seeing him fortnightly.

 

[azure]

I've never seen a urologist, but I did have frequent cystitis which was horrible. I read a lot online and tried a low oxalate diet and that's helped a lot.

I don't know if that's appropriate for you, but I just thought I'd mention it so you could look into it if you chose to.

And I also want to say that I'm sorry you had such a hard time with your appointment. No wonder you're stressed. It sounds awful.

 

[ButtterflyLady]

I think when they use the word functional they are being accurate, because often there is no structural/measurable signs they can pinpoint, but they know the symptoms or effects are happening, so they call it functional. It doesn't mean they think it's not real. I have been diagnosed with functional dyspepsia, because there is nothing visible on endoscopy or any imaging, but they know from my symptoms that something is definitely not normal. A good doctor knows that sometimes they can't find out what is happening in the body but they should still treat the symptoms and try to reduce suffering. A lot of medical treatment is symptom control and that's ok.

 

[Mep]

I think when they use the word functional they are being accurate, because often there is no structural/measurable signs they can pinpoint, but they know the symptoms or effects are happening, so they call it functional. It doesn't mean they think it's not real. I have been diagnosed with functional dyspepsia, because there is nothing visible on endoscopy or any imaging, but they know from my symptoms that something is definitely not normal. A good doctor knows that sometimes they can't find out what is happening in the body but they should still treat the symptoms and try to reduce suffering. A lot of medical treatment is symptom control and that's ok.

Yeh I got told I had functional dyspepsia a few times.... but when you look that up it is just saying you have indigestion. My current gastroenterologist diagnosed 6 things wrong and said it's not functional dyspepsia I have. He explained everything well. I think it just depends on the skill and experience of the specialist.

 

[ButtterflyLady]

Yeh I got told I had functional dyspepsia a few times.... but when you look that up it is just saying you have indigestion. My current gastroenterologist diagnosed 6 things wrong and said it's not functional dyspepsia I have. He explained everything well. I think it just depends on the skill and experience of the specialist.

My GI doc told me that my dyspepsia is caused by a triad of things - reduced stomach lining (from using NSAIDs), increased acid production, and increased muscle spasms. He said each thing contributes to the other in a vicious cycle. Luckily I was able to break the cycle with omeprazole.