I have had a problem with my bladder for quite some time. I never really understood what is going on but I thought it was because I am so often physically unable to go to the toilet as often as I need to. This results in holding the urine which can cause infection. I still do not have adequate medical care as my GP surgery simply don't offer me any meaningful treatment. I am looking for another surgery, but don't want to jump to another only to find that their doctors also believe that my illness is somehow psychological and undeserving of treatment.
In the meantime I have found this website which gave me far more information and some suggestions. I hope it might help some of the rest of you who are suffering with bladder pain and problems.
bladderproblem.co.uk There is also a Bladder Diary there that you can do online. The purpose is to have information to take to your GP so that you can describe the problem adequately. In my case, I think this would require a GP who is interested and knows something about this problem. Anyway, I am doing the bladder diary for my own benefit as I may be able to see some patterns that will help me untangle the problem
I have also begun eliminating most of the foods on the list of acidic foods that I found online. This was a link from a British Association of Urological Surgeons, I think. I have looked at a lot of websites in an effort to get a scientifically based food list of things which are really going to cause irritation to the bladder. I found what seemed to be the best list at foodsmatter.com.
However, they have on their patient section of the website a part that indicates what should be done by the physician when you go there with a urinary tract infection. I find that this examination has NEVER been done and it seems a lot more detailed than any I have ever had, even when I had completed more than two courses of antibiotics and the symptoms came back within a few days of completing the tablets. Although I have not really complained, I did make it clear that this was the case and I was left with no suggestions about what to do. It seems that I am being ignored by my doctor. I wonder if this is just the way GPs operate now, or whether it is due to them thinking that a person with a Fibromyalgia diagnosis is imagining or pretending to have symptoms.
Here is the link for what to expect when you visit your doctor with a possible urinary infection:
Think the diary will put some evidence in becoming your own expert that should make future interactions with the medical profession more productive. With collaboration on treatment options the empowerment of involvement in care should provide better outcomes.
Very important area well covered thanks for posting this.
What I have experienced so far with doctors, is that when I ask specific questions after having become more informed, or if I refer to something I have read, even when I say, "I really don't know a lot about this, but ... then ask a question, they tend to become irritated with me as though I am taking up their time and should just accept their general or simple answer that it's nothing to worry about. This has made me reluctant to even do this in the future.
It seems obvious from what we have seen of the psychologists and psychiatrists statements about Fibromyalgia and ME, that they believe one cause of our 'psychosomatic' illness is that we catastrophise (read: they believe that we find 'minor' things and wonder whether they could indicate a serious problem) and that we are constantly paying attention to symptoms and normal bodily activities with the idea that we are ill. They say as much, and their CBT courses for us try to get us to stop paying attention to our symptoms.
I'm getting the feeling when I ask a question, like, "What is this soft lump just at my sternal notch? Does it need to be investigated?" I just get brushed off. They don't touch me, they don't seem to do the diagnostics that i read online they should do. I believe this is because they think that any symptom of a person with Fibromyalgia or ME is just part of the syndrome. Honestly, when you are met with that kind of unresponsiveness, how do you handle it?
Again, want to state that I rarely go to the doctor or request any treatment. This is mainly because I was told that nothing could really be done and I am already on the maximum dose of Pregabalin.
I would love to hear if others of you have experienced this or if they have even said as much to you, when you ask about something or especially when you appear to have done a bit of research about it.
I am looking into getting an advocate who could help me with these issues. I think this will happen, so that may get me some better treatment, but knowing the general beliefs of the Rheumatologists around here and the one Neurologist I saw, I am not sure where a better attitude toward these illnesses can be found in my part of the UK.
A good GP would welcome patient insight into chronic illness which narrows the choices: one stay where you are and educate the GPs perhaps with advocate support on a patient comity, or second choice move in search of greater comprehension of the reality of living with illness.
My lungs are where the blame is put I have COPD and had chemotherapy for a kidney tumour that brought me down with Chronic Fatigue that I have not got over in a year.
I'm so sorry to hear that you are having difficulty also. I do think it's important to get your feet up. I read that for swelling around the ankles, you need to have them at the same level as your heart for periods of time. I am not sure of specifics.
Great information the diet is also a bowel issue pain meds slow that way down. Taking a look at the neuro kidney.niddk.nih.gov/KUDise... it has been a neuro since 1969 on WHO ICD 10.
Young physicians open thinking are what I look out for when chasing down the most out of a consultation.
See your havin some tough breaks hang in there we are with you
I have done extensive online research into the Interstitial Cystitis/Overactive Bladder problem and ways one can cope with it. I still don't know if that is what I have because my GP would not do anything about it except prescribe a medication for incontinence, which is rarely a provlem.
I have cut out almost everything on the list of foods that irritate the bladder according to the urological surgeons websites links, and I have bought some expensive low acid coffee, which I need to kick the effectiveness of the cocodemol I take almost daily for breakthrough pain.
I really missed my former 2 cups a day of espresso with lots of milk (cafe au lait). The new coffee was one I found on Amazon and it came from Finland. It is smooth and like a French roast espresso. So I at least have one of my faves that I can still enjoy. Haven't been able to drink it without milk for several years due to acid reflux.
I love strong coffee, and it turns out, from my research into this, that the stronger the coffee is brewed, The more likely it is to be lower in acid. Brewing it longer reduces the acid as brewing continues.
Some companies accomplish this removal of acid also by adding a chemical, but others do it in a natural process. I could not find any specifically labelled low acid coffee for sale online from the UK.
If the symptoms stay gone for several weeks, I may try one of the coffees I have seen reviewed on the gourmet coffee sites to be low acid by nature, rather than through later processing. Evidently it depends on the origin of the beans--some regions produce less acidic coffee, the type of beans, the method of drying and preparing them, and finally the roasting process.
Alternatively there is a cold brewing method you can do with any coffee of your choice. They even sell the setup to do it, or you can use your own jars, etc. if you don't want to spend about £37 to buy one. I'm holding off on that until I see how this works long term.
I can't, however, exclude all the foods on these lists, and particularly the additives are a problem as I am unable to cook. My carers are not here for my main mealtimes and even if they were would not be able to prepare meals from scratch for me.
So I continue to eat frozen microwave dinners from Wiltshire Farm Foods which do contain quite a lot of additives. I try to choose the best ones, but there are almost none that do not contain at least two of the 'irritating' things from the lists.
The one thing that I found helpful in addition to this is bicarbonate of soda in water between meals. Best to wait so food can digest before taking it. I am doing 1/2 teaspoon two or three times a day in addition to having cut out everything I like most
The burning sensation around my bladder is all but gone now except for when I am too weak or semi-paralysed for hours and really need to go but can't.
I do think the bicarb is helping and I saw some ME info somewhere that it is a good idea to keep taking a small amount each day... like under 2 tsps total, and mixed in a glass of water. I read that it helps with ME. Sorry I can't recall where or in what way or why. My brain is often like a sieve. Even if I copied or posted a link for myself, I'd be hard pressed to find it now.
I thought it was important to update this post and let you all know what happened with the bladder problems.
After about 3 or 4 lots of 3 day each prescriptions of antibiotics, I still had major burning pain in my bladder, dark and strong smelling urine, etc. each time within a few days after the supplies of antibiotics was finished.
Each time I phoned the doctor, telling them that my symptoms were as bad or worse than ever, that they had cleared up a bit while on the medication, but come back shortly after it was finished. I asked each time if I should send in a urine sample for a culture.
I did a lot of research about the proper protocol that doctors should follow with urinary tract complaints. I read it all in the NICE guidelines and in the British Association of Urological Surgeons websites, plus a few other places. So I knew they were not following the proper way of dealing with me.
The first time I asked for a culture to be done, the doctor said yes, and I sent one in, with a whole lot of silliness resulting about a certain computer label with a barcode that the doctor was supposed to put on a little syringe and leave at the front desk--but she failed to do, all the while my carer stood at their desk being told they would not accept the sample I sent in the syringe they had given my carer the previous day, and on which which I'd filled in all info necessary in block capitals in indelible ink on its own little printed label on it.
Then they said they didn't know what happened to it. They didn't know if it had been taken to the lab or not. They told me to phone back. This went on for several days. I persisted in phoning again the next day.
Finally I said "I am in a lot of pain. I have phoned back three days in a row and been told you don't know. This is a doctor's surgery. Presumably there are some doctors there. I believe doctors are supposed to help people who are in pain. I would like somebody to take some responsibility to help me!"
I was quickly put through to the senior doctor who put the phone down and then said "It did come back. It was unreadable, so that's no help to us." When asked to clarify, he said that means it was probably contaminated. I said, "so should I send in another one?" He said NO, that's not necessary.
I persisted telling him that the symptoms are not going away and are almost unbearable. He could see I wasn't going to quit. He prescribed something. I learned when I got it delivered, that it is for incontinence and spasms of irritable bladder. Not for burning sensations.
I took it for two days. I couldn't get enough to drink. I halved the dose and continued to take it for another few days. Then I discovered that a half teaspoon of bicarbonate of soda in a glass of water helped as much, so I quit the prescription.
I also followed the advice of websites on Interstitial Cystitis, which I was never assessed for, treated, or referred to a
specialist for. It seemed a possible diagnosis... more or less the way I started to learn about ME because nobody was answering my questions or addressing my symptoms.
The burning and other symptoms came back stronger so I contacted the doctor again. This time, luckily, I got through to the registrar, who was helpful.
Do I have to play their games to even get enough antibiotics to cure a painful 6 month ongoing urinary tract infection?
I did get them in the end. My carer insisted that they do another urine culture. She spoke to the trainee doctor, and then they actually LOST my first sample that I paid the carer to deliver to their office!
My carer then persisted in asking that the doctor explain what happened to the sample. The poor registrar phoned back and apologised profusely, saying she had no idea what happened to it!
That was the second (possibly third, if the senior doctor was telling fibs) one they lost in 4 months!
Their surgery page on NHS Choices shows an awful lot of complaints about extremely late and lost prescriptions between them and the pharmacy and similar things over the past 4 years. All of these have been answered by the manager with an excuse about computer failure and the like. I have to wonder what is going on, and my experience has been that there is little and faulty communication among doctors and staff almost every time I or my carers phone them.
A few days later at the approved time to get the results.....Finally.... SUCCESS!
..........After having been told that I would not get any more antibiotics, that they did not want me to send another sample for a culture despite the fact that the last one was supposedly contaminated and the one a few months before that 'had too many white cells'; and despite the fact they had prescribed a medication for incontinence, when I persisted in asking that the burning pain and its CAUSE be addressed....!
I felt such a surge of jubilation that finally I was proved to actually have an ongoing infection after they would not listen to me. The realisation that I was shouting "YES!" at the news that my sample finally made it through to the lab and the results back to the registrar and conveyed to me... and shouting 'YES!' to hearing that I had a urinary infection, and told what the name of the bacteria was... THAT seems ironic.
The registrar gave me a week's worth of antibiotics and requested another sampel at the end of that time to make sure it was cleared.
Again I had to pay the carer to go through the process, and we got the result that this ordeal is over because the infection is gone.
Why are people not held accountable for medical negligence and disregard? I could have ended up in hospital with a kidney infection due to their dismissive attitude.
I now have no faith in these doctors. It will take a lot of proving for me to trust any doctor to do what is even in their own guidelines as the proper way to proceed.
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