Have you considered interstitial cystitis? A close friend of mine has this. She went through agony before it was diagnosed. It would explain the pain and urgency you are experiencing.
Taz x
Hi, it came on suddenly and I think that interstitial cystitis is a we don't know diagnosis.
Interstitial cystitis, painful bladder syndrome and urethral syndrome are ‘diagnoses by exclusion’
All of these diagnoses start with a negative dipstick test and urine culture. All of them fail to identify a cause for a patient’s symptoms.
So, IC, PBS and US are known as ‘diagnoses by exclusion’. They are simply shorthand descriptions for a group of symptoms which often occur together after a urinary tract infection.
What does the NHS have to say about interstitial and painful bladder syndrome?
The NHS Choices website says this on interstitial cystitis and painful bladder syndrome:
“Interstitial cystitis is a poorly understood bladder condition that causes long-term pelvic pain and problems with urination. It’s also known as ‘painful bladder syndrome’ or bladder pain syndrome.”
What causes interstitial cystitis?
The exact cause of interstitial cystitis isn’t clear. Unlike other types of cystitis, there’s no obvious infection in the bladder and antibiotics don’t help.
There are several theories about the possible cause of the condition, including:
damage to the bladder lining, which may mean urine can irritate the bladder and surrounding muscles and nerves
a problem with the pelvic floor muscles (used to control urination)
your immune system mistakenly attacking your bladder
an allergic reaction
Treatments for interstitial cystitis
Unfortunately, there’s currently no cure for interstitial cystitis and it can be difficult to treat, although a number of treatments can be tried.
Many chronic urinary tract infection (UTI) sufferers have had their symptoms dismissed by their GP or urologist on the basis of dipstick tests and mid-stream urine (MSU) cultures. Worryingly, these tests are seriously flawed.
Standard mid stream urine (MSU) cultures miss 90% of chronic urinary tract infections
Dipstick analysis (leucocyte esterase test) miss at least 60% of chronic urinary tract infections.
Just because your tests doesn’t find evidence of an infection, this is not evidence that you don’t have a UTI.
How do doctors diagnose urinary tract infection?
Diagnosis for a urinary infection is usually done in the GP surgery or a walk-in clinic. After you explain your symptoms,
a mid-stream urine sample is taken and a dipstick test is carried out to check for:
White blood cells – Also known as leucocytes, the presence of white blood cells This indicates that there is inflammation or infection in the urinary tract or kidneys and the body is excreting more white blood cells to destroy any possible bacterial infection.
Red blood cells – The bladder can bleed due to severe inflammation and the constant urination caused by a UTI. Some people can feel a “razor blade sensation” when urinating during a UTI attack.
Protein – The presence of protein can indicate a possible kidney infection as only trace amounts normally filter through the
kidneys.
Nitrates – Gram-negative bacteria like e-coli, which can cause a UTI, make an enzyme that changes waste urinary nitrates to
nitrites.
Any sign of these in the urine indicates bladder inflammation and a probable infection as the body’s immune system is reacting to the infection, but could also indicate other conditions.
Depending on the dipstick analysis, the GP may send the sample to a laboratory where they culture the urine for bacterial growth. The GP will discuss your symptoms with you, taking into account other current or previous health issues and any family disease history.
Negative test results
Unfortunately both dipstick test and the mid-stream urine culture test aren’t reliable and miss infections. There are several reasons for this:
Diagnostic criteria for UTI is based on outdated research
The use of MSUs and dipstick tests to diagnose UTIs are based on research by a scientist called Kass from the 1950s based on a study of a small number of pregnant women suffering from severe infections of the kidneys. These women, who were not suffering from lower urinary tract infections, are not representative of the typical UTI sufferer.
The current microbiological criteria to diagnose UTI, called the Kass Criteria, is set very high, meaning that levels of infection under this threshold are discounted. The Kass criteria threshold looks for at least 105 (100,000) bacteria per millilitre of urine of a single species of a known pathogen. But UTI symptoms can be caused by low levels of pathogens and caused by more than one pathogen.
The Kass criteria assumes that the bladder is sterile and a mixed growth results is likely to be a contamated test. But we now know that the bladder is not sterile The urinary microbiome is complex and a normal bladder hosts up to 400 different species of organisms.
Test miss bacteria that cause infections
Culture tests are insensitive and miss many pathogens that cause infection – it favours fast-growing bacteria, like e-coli, and is unable to culture slow-growing bacteria orpathogens that die on contact with oxygen. The culture test detects as little as 12% of other clinically significant species that can cause infections. 1
The dipstick test only looks for the presence of gram-negative bacteria, as e-coli, ignoring other possible pathogens that cause infections.
The dipstick detects the nitrites which are produced by gram-negative bacteria and white blood cells, produced when the body is fighting an infection. But even then the dipstick test misses infections; Positive for nitrite in less than 18% of UTIs and positive for leucocytes in less than 40% of acute UTIs with a positive MSU culture. 2,3,4
The dipstick and culture test do not detect bacteria that are dormant and embedded in the bladder wall, so they fail to detect embedded, chronic infections. Dipstick test fail to detect 40% of chronic infections. The MSU test fails to detect 90% of chronic infections. 2,3
New research missing from diagnosis
New research studies show that:
A healthy bladder is not sterile. Just like the gut, the bladder has its own balance of good and bad bacteria called the ‘urinary biome’. Our bladder contains about 500 different types of bacteria which usually coexist happily.
There is no evidence that UTIs are caused by a single type of bacteria and multiple studies suggest that multi bacterial infections are common. A healthy bladder has a balance of hundreds of different strains of bacteria which are more or less sensitive to different types of antibiotics. An antibiotic that wipes out all or most of one type of bacteria can allow numbers of another strain to rocket. The second strain of bacteria, which might not have been a problem when there was just a few of them, now becomes an infection.
Some strains of bacteria are easier to culture – they grow easily in the laboratory. Other strains divide too slowly to show up in the usual length of time given and they can be ‘crowded out’ by stronger, fast-growing types. Some types of bacteria die in the presence of oxygen so cannot be grown in a laboratory.
Research shows that epithelial cells are found in greater numbers in the urine of chronic UTI sufferers. The wall of the bladder and urethra is made up of urothelial cells about five layers deep. As an infection advances, bacteria move from the urine into the cells. The body’s immune system responds to the infected cells by shedding them. At this point, bacteria that have been living inside the cell burst back out into the urine and the infection flares up again.
What is the most reliable way to diagnose chronic UTI?
Relying on inaccurate tests sees many thousands of UTI sufferers misdiagnosed or even dismissed as ‘problem patients’.
Unhelpfully guidelines from the National Institute for Health and Care Excellence (NICE guidelines in England, SIGN guidelines in Scotland) – the body that produces treatment guidelines for England and Wales – insist that a positive dipstick and MSU are needed to diagnose a urinary tract infection in patients who have not got better after initial antibiotics.
The most useful thing that doctors can do is to listen to their patients and ask them detailed questions about their symptoms and how they started.
New research suggests that microscopy – analysing fresh urine under a microscope using a haemocytometer (a device used to count white blood cells and epithelial cells) – combined with listening to a patient’s story is the best way to diagnose UTI.
Urinary tract infection (UTI) sufferers for whom short courses of antibiotics haven’t worked and whose dipstick tests and urine cultures fail to show infection are usually referred for further tests. At this point, GPs and urologists have usually discounted bacterial infection as a cause of their patient’s urinary symptoms.
Common investigations for chronic lower urinary tract symptoms
Ultrasound
A scan of the kidneys and bladder to detect anatomical abnormalities of the urinary tract
Cystoscopy
A camera is inserted into the bladder to check the bladder wall and rule out bladder cancer
Biopsy
Tissue is taken from bladder wall to look for ulcers
Urodynamics
The bladder is filled with fluid while the patient is catheterized to measure how the bladder and urethra store and release urine.
Tests often find no cause for symptoms having already dismissed bacterial infection
These tests typically find no cause for the symptoms patients suffer from. This leads many people to be diagnosed with interstitial cystitis (IC), painful bladder syndrome (PBS), urethral syndrome (US) or over-active bladder syndrome (OAB). These conditions are ‘diagnoses by exclusion’ meaning that no physical cause can be found.
IC, PBS, US and OAB instead describe groups of symptoms – including pain, urgency, frequency, difficulty passing urine and incontinence – often with inflammation or ulcerations in the bladder wall. But inflammation can also be caused by bacterial infection.
Standard treatment options are bleak
The medical consensus on IC, PBS, US and OAB is that they are poorly understood and incurable. As no treatment does very well in trials, there is no universally agreed care pathway.
There is no evidence to show that any of these treatments are suitable for treating chronic or recurrent urinary infections. Instead they:
Offer no cure 1
Give just limited, or no, relief to symptoms 1
Have significant side effects and potential for severe harm 2,3
Are untested on children, yet children as young as six have undergone them 4
Can lead to loss of quality of life and productivity, low self-esteem and psychological harm when patients fail to benefit from repeated treatments despite reassurances from doctors. 5
Standard treatments for chronic lower urinary tract symptoms
Surgical treatments could include:
Urethral dilation
Bladder stretch
Bladder instillations (mixtures of medicines, painkillers or botulinum toxin (Botox) put directly into the bladder)
Bladder enlargement (augmentation cystoplasty)
Bladder removal
Sacral nerve stimulators (device implanted at the base of the spine)
Risks with surgical treatments include
Pain and bleeding
Further infections
Urinary retention
Urethral swelling
Bladder damage
Risks associated with general anaesthetic (if given)
Needing to self-catheterise to empty the bladder
Drug based treatments including side effects:
Cimetidine – an antihistamine
Side effects include: feeling dizzy, depressed, or agitated; breast swelling or tenderness (in men); joint or muscle pain; mild skin rash; headache; diarrhoea; nausea or constipation
Oxybutynin – an anticholinergic drug that relaxes the bladder muscles
Side effects include: being unable to urinate; constipation; dry mouth; blurry vision; dizziness; drowsiness; sweating less than usual; insomnia; headache
Vesicare – an anticholinergic drug that relaxes the bladder muscles
Side effects include: dry mouth, blurred vision and light sensitivity; increased pressure in the eye; hot and flushed skin; dry skin; abnormal heart rate, palpitations and arrhythmias; urinary retention; constipation
Betmiga – a bladder muscle relaxant
Side effects include: headache; joint pain; dizziness, blurred vision; tiredness; dry mouth; stomach pain; nausea; diarrhoea; constipation; bloating; sinus pain; sore throat
Elmiron – (pentosan polysulphate) thought to coat and protect the bladder wall
Side effects: hair loss, diarrhea, nausea, blood in the stool, headache, rash, upset stomach, abnormal liver function tests, dizziness and bruising
Cystistat – a liquid put directly into the bladder to coat the bladder wall
Amitriptyline – a tricyclic antidepressant also used to treat chronic pain
Side effects include: constipation, diarrhoea; nausea, vomiting, upset stomach; mouth pain, unusual taste, black tongue; appetite or weight changes; itching or rash; breast swelling; decreased sex drive, impotence, or difficulty having an orgasm
Gabapentin – an epilepsy medication also used to treat chronic pain
Side effects include: dizziness, drowsiness, weakness, tired feeling; nausea, diarrhoea, constipation; blurred vision; headache; breast swelling; dry mouth; loss of balance or coordination
Opioid painkillers
Side effects include: constipation; drowsiness; nausea; vomiting; addiction/risk of tolerance/worsening pain
So what tests and treatment are there for chronic UTI?
Early detection is key to preventing chronic UTI.
PMxx
Author
Topic: Is it normal to have a snow storm in your pee? (Read 4238 times)