What You Should Know About Painful Bladder Syndrome (BPS)

Painful bladder syndrome (BPS) is a chronic bladder condition that tends to cause recurring pain, pressure on your bladder and pelvic area, and the urgent and frequent need to urinate.¹ The symptoms of painful bladder syndrome are considered to be extremely variable and are therefore referred to as both painful bladder syndrome and interstitial cystitis (IC). In this article, we’ll refer to the two interchangeably (BPS/IC).

Many people who are diagnosed with interstitial cystitis experience extreme frustration due to the inconvenience of the syndrome itself. On some days, those affected by BPS/IC report using the bathroom as often as 40-60 times.¹ This alone is a large reason for concern. Imagine having to interrupt your day and night 40-60 times to use the bathroom. Unfortunately, there’s no cure for painful bladder syndrome/interstitial cystitis, but there are treatment options available to help manage your symptoms. We’ll discuss those later. In this article, we’ll go over what you should know about painful bladder syndrome/interstitial cystitis and what you should do if you feel like you might be experiencing the symptoms.

Signs of Painful Bladder Syndrome

The primary indication of painful bladder syndrome is the presence of urgency, frequency, and pain that have lasted for more than 6 weeks without any other clear cause or sign of infection.² Some people experience mild symptoms, others are severe. Some people experience symptoms that come and go, others are constant. While mild cases don’t cause as much of an interruption to your daily life, severe cases can leave you feeling debilitated. If you notice any of the following symptoms that persist, whether regularly or not, contact a urologist today. There are ways to manage painful bladder syndrome and avoid complications from severe cases. 

Frequency

Frequency is a common sign of painful bladder syndrome. People who have BPS/IC often see an increase in the frequency of voiding as the first noticeable symptom. This may happen slowly or all a once. On average, people urinate about 7 times a day and rarely have to get up during the middle of the night to use the bathroom.¹ People with BPS/IC often have to urinate much more often than this—so much so that it disrupts the sleeping cycle. As we mentioned above, some people with BPS/IC report having to use the bathroom as much as 60 times a day, even if they don’t produce that much urine.

Urgency

Urgency to urinate is another common symptom of painful bladder syndrome/interstitial cystitis.² For some, the urgency comes and goes. In severe cases, the urge to urinate may never go away, even immediately after you’ve used the bathroom.² For some people, certain things can make the urgency more intense, such as stress, certain foods and drinks, menstruation, and sex.²

Pain

The other telltale sign of BPS/IC is pain. This pain is often accompanied by a feeling of pressure and can get worse as your bladder starts to fill.² Depending on the severity of the syndrome, patients may indicate feeling pain and pressure in other areas of their body such as the lower abdomen, lower back, pelvic area, or perineal area.² Some women have also reported feeling pain in the vulva or vagina while men categorically feel pain in the scrotum, testicles, or penis.² The severity of your BPS/IC can impact how painful this is and the frequency in which you feel pain. In some cases, the pain is fleeting but in severe cases, the pain could be constant.

If you’re experiencing any of the above symptoms, especially over long periods of time, contact your urologist. There are treatment options available that can help you manage your symptoms and take back control of your life.

Causes of Painful Bladder Syndrome

Painful bladder syndrome or interstitial cystitis is associated with chronic inflammation of the bladder wall. Unfortunately, there is currently no known cause of BPS/IC and many experts believe it involves a number of variables. Some doctors believe that BPS/IC is due to a defect in bladder tissue while others believe it’s a reaction to the body’s immune system attacking the bladder.² However, at this time, all of these causes of painful bladder syndrome/interstitial cystitis are just theories.   

Who is at Risk for Interstitial Cystitis?

Interstitial cystitis or painful bladder syndrome tends to disproportionately affect women roughly eight times more often than men.¹ There are currently estimated to be about one to two million Americans living with BPS/IC.¹ Since symptoms mirror other conditions, some believe that the number of people affected is much higher—up to 4 million men and 8 million women.² Prostatitis mirrors similar symptoms, which could be one of the reason why men have fewer diagnosed cases, but more information is needed to confirm this.²

Currently, there are no behaviors that are known to increase your risk of developing painful bladder syndrome/interstitial cystitis.² There are certain foods or drinks that can however, worse symptoms. While genetics could play a role, more research is needed to confirm this connection. The lack of confirmed science revolving around BPS/IC causes a lot of frustration—both for doctors and patients.

Diagnosing Interstitial Cystitis

Diagnosing BPS/IC can be difficult due to the wide range of symptoms and the difference in severity between each person. Oftentimes, doctors will diagnose patients experiencing the above symptoms with BPS/IC after ruling out other conditions and infections. The diagnostic process works through the following tests:

• Medical History
• Physical/Neurological Exam
• Baseline Pain Tests
• Voiding Tests
• Urodynamic Evaluation
• Cystoscopy

Treatment Options for Painful Bladder Syndrome

Your treatment plan will always be built by your doctor based on individual circumstances. Everybody is different and painful bladder syndrome may present itself differently from person to person, therefore it requires different treatment options. The underlying goal of treatment is controlling any symptoms, reducing pain, and improving your quality of life. To approach treatment, most doctors work in terms of phases. If the first phase of treatment works, then you won’t need to move on to the second phase. Since there’s really no way to know who will react to which kind of treatment, the best way to approach it is to work through these phases until you find something that works for you.

First Phase Treatment

The first phase of treatment for BPS/IC is all about making positive lifestyle changes. Due to the low impact that this has on your daily life, behavioral therapy should always be tested prior to using medications or surgery. Your urologist will have you change your diet and record symptoms each day to try and pinpoint foods or drinks that cause symptoms to worsen. This is usually done through an elimination diet. Your urologist will also work with you to try to limit emotional and mental stress, as it can worsen symptoms.²  

Second Phase Treatment

If lifestyle changes aren’t working, the next step is trying different prescription drugs. Sometimes, your doctor will recommend taking any prescriptions while continuing behavioral therapy to try and maximize effectiveness. The two most common prescription drugs used to treat BPS/IC are oral pentosan polysulfate and dimethyl sulfoxide (DMSO).² Additionally, some doctors try using antihistamines like hydroxyzine, antidepressants such as amitriptyline, and a medication called heparin.²

Third Phase Treatment

The third phase includes neuromodulation, ulcer cauterization, and injections like Botox®.² These are more advanced therapies and often require a specialist to ensure the administration is done safely and correctly.

Fourth Phase Treatment

The fourth phase of treatment options for BPS/IC is using cyclosporine.² There are a substantial amount of side effects associated with cyclosporine and should only be used as one of your last resorts. Cyclosporine is also an immunosuppressant, so make sure and talk to your doctor about any problems, your risk factors, and questions you may have before starting this drug.²

Fifth Phase Treatment

The final option for treatment of painful bladder syndrome/interstitial cystitis is surgery. This should only be considered if all other treatments have been ineffective and the disease hasn’t responded to anything else.² Always talk to your doctor to understand the risks before getting surgery and what your recovery would look like.

After treatment, your symptoms could go into remission, but many people will need to continue the treatment indefinitely.² If you don’t respond well to treatment, you can look into pain management options to reduce the impact it has on your daily life. Talk to your doctor to learn more about what you can do to best mitigate the impact BPS/IC has on daily life.

Conclusion

Unfortunately, painful bladder syndrome/interstitial cystitis is an extremely variable condition that lacks a clear treatment path. While there are options for you to help increase the quality of your life and manage symptoms, it can feel like an uphill battle.  If you think you might be suffering from a BPS/IC, or have other symptoms that raise concern, call your doctor immediately. If you need any urological supplies or additional educational resources, visit our educational support page or our product selection guide. If you’re looking for personalized, confidential services, our teams of knowledgeable urological customer service specialists are here to help. 

Sources:

1 https://www.health.harvard.edu/diseases-and-conditions/diagnosing-and-treating-interstitial-cystitis