Bladder / Pelvic Pain

A Patient's Bladder Pain Story

The biggest problem with this condition is not the condition itself but the fact that it is misdiagnosed and mismanaged as a bladder infection or UTI with no improvement. This, unfortunately, goes on for several years before the patient comes to see us and this condition is diagnosed.

What is Bladder Pain Syndrome (BPS)?

It is a chronic condition that is associated with pelvic pain, pressure, or discomfort perceived to be related to the urinary bladder and 1 other urinary symptom such as increased daytime or nighttime frequency in the absence of proven urinary infection or other obvious pathology. Previously, it was called Interstitial cystitis or IC.

How common is BPS?

A large American study found prevalence rates of 2.3–6.5%. However, it may be much more common as in our experience a lot of patients are just missed or misdiagnosed. BPS is between two and five times more common in women than in men.

What BPS is NOT

  • It is not a UTI or frequent UTIs.
  • It is not endometriosis
  • It is not due to ovarian cysts.
  • Hysterectomy is never indicated for the management of this chronic pelvic pain condition, but several patients undergo this operation as the uterus is somehow falsely blamed for this condition.

Why does BPS occur?

The A nerve fibers carry the sensation of pressure and touch. In the bladder this is sensed as a fullness and desire to urinate, something that can be easily postponed.  

The C nerve fibers on the other hand, carry the sensation of pain and temperature which in the bladder is perceived as intense urgency and discomfort if voiding is delayed.

Normally in the bladder, the A fibers are active and dominant, and the C nerve fibers are quiet. However, if the C nerve fibers become active, the mild fullness sensation changes to severe urgency and discomfort/pain. This could happen if the inner coating layer of the bladder called the GAG layer becomes defective and the urine seeps through to the underlying nerve fibers thereby irritating these nerves. Once the irritation starts, it could keep going on by itself even if the GAG layer issue is resolved.

The activity of the pelvic C nerve fibers also presents as other symptoms such as vulvar discomfort, pelvic pressure, lower abdominal discomfort, pain during sex, irritable bowel syndrome (IBS) symptoms and abdominal bloating.

What are the typical symptoms associated with BPS?

This depends upon the organ affected:

1- Bladder: This leads to urinary frequency, urgency, feeling of incomplete bladder emptying, pain if holding urine for too long. Sometimes women are going to the bathroom almost every hour day and night! The amount of urine produced is also very small, making the patient feel that she is not emptying her bladder. Most patients do not complain of urine leakage as they are able to make it to the bathroom.

Some of these are the exact symptoms that are felt with a bladder infection or a UTI. Hence, it gets easily confused by healthcare providers as a UTI, and the patient is treated several times with antibiotics even though there is absolutely no infection!

2- Vaginally, women with BPS complain of discomfort during intercourse both with entry and with deep penetration. Women cannot complete intercourse because of the intense discomfort and pain and eventually stop having sex altogether.

3- Bowel complaints are those seen with IBS where there may be  constipation alternating with diarrhea or one of these may dominate.

4- Pelvic pressure: They may also experience intense pelvic pressure, pelvic heaviness, pelvic pain—often diagnosed as endometriosis.

5- Feeling of a prolapse: They may also feel as though organs are falling out of the vagina and may be wrongly diagnosed to have bothersome prolapse.

Effect of BPS on a woman’s quality of life:

BPS has a significant negative effect on a woman’s quality of life. She is always thinking about the restroom. It affects her ability to function at work. At home, she is up all night and feels drowsy during the daytime. The pressure sensation never leaves her and is nagging and affects her mental state as despite going repeatedly to the doctor and getting “all those antibiotics”, her symptoms never improve. In the bedroom, it strains the marital relationships as sexual activity is very painful and if she has sex, the next day, she is hurting as she is literally living in the bathroom due to the aggravated urinary frequency after sex.

HOW WE EVALUATE BPS

  • We take a detailed and targeted history: We make sure that we understand her symptoms, how much it is affecting her quality of life, what diagnostic procedures have been performed and what treatment has been given to her.
  • Perform a comprehensive Urogynecologic examination: this involves proper assessment of the vaginal opening. We assess whether she has discomfort at the vaginal opening, also assess if there are any atrophic changes within the vagina especially if the patient is postmenopausal and then look for trigger points as to where she has the pain or discomfort. This is a very thorough examination.
  • Urodynamic testing: if the patient is complaining of urinary incontinence, then we make sure to assess her bladder activity.
  • Cystoscopy (looking inside the bladder): this is done if the patient also has any risk factors such as blood in the urine or history of smoking, old age or family history of bladder cancer.
  • Urine analysis: In most cases of bladder pain syndrome, the urine analysis is completely negative for an infection. If there is any doubt, then the urine is sent for culture. Almost always, the urine culture comes back negative for infection.
  • Assessment of voiding function: this is done with the help of the bladder scanner where we make sure that the patient has emptied her bladder. Patients with bladder pain syndrome have a normal post void residual and usually empty their bladder well and do not have retention even though they have symptoms of incomplete bladder emptying.
  • Voiding Diaries and fluid intake log: this is very important to determine how many times the patient goes to the bathroom during the day and during the night and how much urine she puts out. Equally important is to see how much and what type of fluids she is drinking during the 24-hour period.
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OUR MANAGEMENT STRATEGY FOR BPS

We follow the American Urology Association (AUA) guidelines for the management of bladder pain syndrome, and we make sure that the patient understands the entire flow chart. This gives her the reassurance that a lot can be done for the management of this condition.

  • Patient education and Participation: this is extremely important as without patient participation, the management is not going to be successful.
  • The first line therapy is dietary modification and stress management.
  • The second line therapy is medication management. There are several medications that help with nerve imbalance and bladder pain syndrome symptoms.
  • The third line therapy is done in an outpatient center where a cystoscopic bladder filling is performed to help improve the capacity of the bladder and reset the bladder nerves.
  • The advanced therapies include sacral neuromodulation procedure which involves nerve stimulation with a battery that’s placed in the buttock fat or bladder Botox procedure where Botox is placed under the bladder lining.

Management of bladder pain syndrome can be very successful if the patient participates in this along with the provider. I always call it handshake management. Most of the symptoms of bladder pain syndrome can be satisfactorily controlled. Flare ups can happen, but these can also be curtailed.

In summary, bladder pain syndrome is a very common condition which is frequently misdiagnosed and mismanaged by healthcare providers. The management does not involve antibiotics or a hysterectomy. For the treatment to be successful, patient participation is critical.

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