I have heard from many of you over the past almost year in regards to bladder problems that are related to lupus. It is not infection of the bladder but inflammation of the urethra. It is called "Urethral Syndrome." This is very common in lupus patients. It happens usually to every 3 out of 10 individuals suffering from lupus.
Here is an excellent article I have found that may help shed some light on this unknown area.
Interstitial cystitis is described throughout this article and here is an explanation of it. Interstitial Cystitis is described as cystitis or inflammation, in the bladder wall. However, the inflammation does not appear to come from an invasion of bacterial. Its cause is unknown. Because symptoms vary so much from person to person, and repsonse to tratment is so unpredictable, doctors specializing in this problem are beginning to think about it as a "symptom complex" with a number of possible causes. Although it is a singular disease in many respects, interstitial cystitis has some striking similarties with certain other diseases in which inflammatory processes predominate: lupus, rheumatoid arthritis, irritable bowel syndrome, allergic rheninits, and polyarteritis (inflammation of the smaller arteries).
The Urethral Syndrome: The Orphan Disorder Many women go to their gynecologist or urologist and complain of prickly, tingly, or burning sensation around the urethra and/or vulva with occasiona episodes of urinary freqency and urgency, and sometimew painful urination. They symptoms often alre up after sex or the consumption of bladder irritants swuch as alcohol, coffee, or spicy food. Applied to women only, the term urethral syndrome is often used in cases where symptoms are present but are not reall well defined enough to suggest interstitial cysitis (which again is very common in lupus patients).
"Urethral" means focused on or around the urethra. "Syndrome" means a collection of signs and symptoms that describe a particular condition. The condition is very ill defined, and since it is neither life=threatening nor very dramatic, it has not been of much interest to researchers. What causes this condition, and which treatments are appropriate for it, constitute one of the most obscure controversies in urology.
Many doctors are baffled by these symptoms and may not be of much help to you. If you are lucky, they will tell you that they don't know what is causing your problem and treat it empirically, that is, with basically anything that experience tells them might work. If you are ot so lucky, you may be told that you have any number of other conditions, not unlike the list of misdiagnoses of lupus or another condition known as interstitial cystitis. Some doctors who see a lot of women with this condition have come to think of the so-called urethral syndrome as the milder end of the painful bladder spectrum, with interstitial cystitis being at the more severe end. It is often difficult, in fact, to say just where urethral syndrome ends and interstitial syndrome begins. However, if you have episodes of freqency, urgency, and nocturia, a feeling of pressure in the bladder or pain in the urethra after urination, you could probably benefit from some of the trestments that are used for interstitial cystitis.
Until the interstitial cystitis disorer is better understood it is unlikely that its relationship to the urethral syndrome will be clarified. It is estimated that 2 to 3 million women have bacterial cystitis have symptoms that afall into the urethral syndrome category. Some men have similar symptoms as well, and in them the condition is referred to as prostatodynia, which means pain in the prostate. At this point, it is impossible to say just what "urethral syndrome" is. At best, we can describe it, tell you the standard tests and procedures that are used in diagnosis, give you an idea of the range of treatments that have been tried and suggest some coping mechanism that have worked for women with the condition.
Some of the possible causes of urethral syndrome that have been suggested are urinary tract infection, inflammatory disease i.e. lupus, chlamydial infection, hyperactivity of the sphincter muscle or dysfunction of the urethral nerves, pelvic surgery (especially hysterectomy), estrogen deficiency, allergies, stress and quite a number of less common conditions. Sometimes these conditions can be identified and treated and sometimes they cannot. Many women are simply told, that they have a small bladder or a small, damaged or fibrotic urethra. In many cases, the functional capacity of the bladder may be diminished, but unless the bladder is distended under anesthesia it is not possible to tell what its true capacity is. And when a urethra is "too small" has yet to be defined.
It may be that swelling from inflammation causes a diminished urinary flow and prevents the bladdre from emptying completely---making the urethra seem smaller. Or it may be that in response to irritation or inflammation urinary frequency develops, causing the bladder's functional capacity to decrease--so you feel as if you need to urinate more frequently.
As with interstitial cystitis, the diangosis of "urethral syndrome" is made by excluding other conditions. Infection needs to be ruled out, and this often involves more than the routine urinalysis and culture and sensitivity tests. Several studies have found that about half the women who have urgency and frequency actually have some type of organism, such as chlamydia or mycoplasma (an organism which also causes pneumonia), or a low-colony count of infection caused by bacteria such as staphylococcus seprophyticus which does not show up on a routine urinalysis or culture and sensitivity test.
Infections caused by these organisms are generally classified as "urethritis" and can be treated with antibiotics. However, if you continue to have urethray symptoms after taking several rounds of antibiotics then your condition ay very well belong in the painful bladder category.
Distinguishing "urethra syndorme" from interstitial cystitis is often difficult and sometimes impossible. Without looking into your bladder when you are under anesthesia, there is no definitive way to tell whether you have what is now considered to be interstitial cystitis. in any event, preparing a voiding chart will provide a great deal of useful information for your doctor to work with. Whether its worthwhile to put you thorugh the tests necessary to make a definitive diagnosis is something that you and your doctor will have to decide. If your symptoms are severe enough to require treatments such as bladder overdistention or instillation of DMSO, then diagnostic procedures may be warranted.
The onset of urethral symptoms is often spontaneous and may be associated with a particular event, such as an urinary tract infection, sexually active, flare up of an inflammatory disease, pelvic surgery, menopause, catherization, getting very chilled or stress. Tests used to diagnosis this condition might include:
1) urinalysis and urine culture to rule out urinary tract infection;
2) urethral swab to rule out chlamydia or non-gonococcal urethritis,
3) urine cytology to rule out cancer; and
4) cystoscopy to rule out other urinary tract diseases.
For a long time, the standard treatment was to dilate the urethra with graduated metal rods. This practice is now generally frowned upong, but it has been shown to be helpful in some cases. Occasional dilations, or two or three at spaced intervals, will probably not harm the urethra. Some urologists still do a meatotomy, making lengthwise cut in the urethra to make the urethra permanently bigger. Thse procedures are considered very dangerous by most urologists and are strongly discouraged. At present, no studies have been done to show that dilation, meatotomy, or urethrotomy has any medical value. Given the potential for danger and scarring that these procedures can cuase, there seems little justification for them.
Based on the results of your physicial exam and tests, the following treatments are commonly done for urethral syndrome. Some of the drugs used to teat interstitial cystitis are also used in the treatment of urethral syndrome, especially anti-inflammatory drugs, diazepna, and occasionally alph blockers and estrogen and hydrocortisone cream rubbed directly on the urethra opening. Although these drugs only treat the symptoms, some people find that their symptoms may resolve after an extended round of drugs such as these. Even though no bacteria can be found in the urine, a few women respond well to longterm antibiotics. This is depending on your medical health.
Urethra syndrome, and its male counterpart prostatodynia, can be frustrating disorders for people who have them as well as for their doctors. When symptoms first develop, they are likely to be frightening because it may be difficult to find out what is wrong. Since there is no reliable medical remedies for these orphan conditions, a combination of patience, thoughtful experimentation with diet and personal habits, and a sympathetic doctor who is willing to help you find helpful remedies is your best solution.