Pelvis Problems: The Painful Peeing Syndromes

Hey Scarleteen readers! It’s time for another installment of the Pelvis Problems series with me, Caitlyn the pelvic health PT. This time, I’m going to talk about painful bladder syndromes — disorders that can cause pain with peeing, along with a number of other symptoms.

I’ll focus on two key conditions: interstitial cystitis (IC) and chronic prostatitis (CP). Each of these conditions go by a variety of names and abbreviations, which can make learning about them confusing. I’ll sort through the alphabet soup of names for these syndromes later.

Here is what’s on the agenda:

• What are the painful bladder syndromes?
• What are the symptoms of these syndromes?
• What causes them?
• How are they diagnosed?
• How can they be treated?

Let’s dive in!

What are the Painful Peeing Syndromes?

While the nickname I’m using here appears self-explanatory, defining these conditions isn’t quite as simple as it seems. While painful urination is a common symptom of both interstitial cystitis and chronic prostatitis, there are usually a number of other symptoms that occur. Plus, some folks with IC or CP may not experience significant pain with urination, or may only experience it on rare occasions.

These conditions we're discussing are classified as “syndromes,” not “diseases”. By definition, a disease must meet clear diagnostic criteria, have a fairly predictable pattern of progression over time, and respond to specific treatment(s). A medical condition is instead classified as a “syndrome” when it has a recognizable collection of symptoms and physical findings which do not (yet) have a known cause. For example, the common cold that most of us catch on occasion is technically a “syndrome” because it often has recognizable symptoms like fever, a sore throat, and a stuffy nose, but medical providers can’t identify the specific virus that caused the cold.

It’s important to note that just because medical science hasn’t pinned down a specific root cause for a given syndrome, this does not mean that the syndrome isn’t a “real” condition. People that live with medical syndromes experience very real problems, pain, and/or limitations, and their symptoms deserve to be acknowledged and treated just as thoroughly as someone with a known disease like cancer or diabetes.

The two key syndromes we will be discussing today, interstitial cystitis and chronic prostatitis, have a lot in common, which is why I’ve included them both in the same article. In fact, some researchers have proposed an umbrella term to encompass both conditions: urologic chronic pelvic pain syndrome (UCPPS). When we discuss the symptoms of both IC and CP later, you’ll likely see the similarities that led to this proposal. To keep things simple, though, I’ll start by defining IC and CP separately.

Interstitial Cystitis

IC is also known as bladder pain syndrome (BPS) or painful bladder syndrome (PBS), though it is more precise to say that IC and PBS are two separate conditions. IC and PBS are typically—but not always!—diagnosed in folks born with a vulva⁠ (vulva: The name for the external genitals of people assigned female at birth. The vulva includes the mons, external clitoris, inner and outer labia, fourchette and perineum.) , vagina⁠ (vagina: The internal passage leading from the opening of the vulva to the cervix of the uterus.) , and uterus⁠ (uterus: An internal, muscular reproductive organ in the pelvis. During pregnancy, this is where a fetus will develop. The lining of a person’s uterus is also the thing that sheds every menstrual cycle in what we call a period.) .

Interstitial cystitis properly refers to rare cases in which the internal lining of the bladder is very inflamed and filled with reddened patches called Hunner’s lesions or ulcerations. This is sometimes termed Hunner-type interstitial cystitis (HIC), and is estimated to account for anywhere from 5% to more than 25% of cases of people with IC/PBS symptoms.

Painful bladder or bladder pain syndrome is the term designed to refer to the cases in which a person has the symptoms of interstitial cystitis, but does not present with Hunner’s lesions (i.e., the inside of their bladder looks “normal”). PBS has been found to be more common than its cousin, IC, particularly in younger patients.

These two terms are meant to distinguish between the different subtypes of the condition (those with and those without lesions in the bladder). In practice, however, the abbreviations IC and PBS are used somewhat interchangeably, which can lead to a fair amount of confusion.

Chronic Prostatitis

Chronic prostatitis (CP) is also known as chronic pelvic pain syndrome (CPPS), and is another example of imprecise naming. CP/CPPS is diagnosed in people born with a penis⁠ (penis: One of the two external reproductive organs of people often assigned male at birth.) , testicles, and as the name suggests, a prostate.

Chronic prostatitis should specifically refer to the disorder caused by bacterial infection⁠ (infection: When harmful microbes, or germs, or harmful levels of microbes/germs, enter the body and multiply, causing illness. The common cold, flu viruses, sexually transmitted infections, chickenpox, impetigo, rabies and diphtheria are some kinds of infections.) of the prostate. It is essentially a type of urinary tract infection (UTI) that keeps recurring, caused by the same bacteria each time. In folks with CP, the prostate is chronically infected by bacteria, and the bacteria living in the prostate can spread to the urinary tract, causing symptoms similar to a classic UTI.

Chronic pelvic pain syndrome, by contrast, is more like an analog to PBS: it is diagnosed when the person has the symptoms of chronic prostatitis without the evidence of an active bacterial infection. CPPS is believed to account for >90% of cases of people with CP-like symptoms.

As in the case of IC/CPS, the terms CP and CPPS are often used interchangeably, despite the intent to define two different types of condition.

Is this just a UTI?...

Before we move on, let’s also be clear about what we are NOT talking about. These syndromes are not the only things that can cause pain with peeing. IC and CP are generally considered to be “diagnoses of exclusion”, meaning that they are only diagnosed once the other conditions that can cause painful urination have been definitively ruled out⁠ (out: Short for ‘out of the closet’. When someone’s LGBTQ+ identity is known to other people.) . Here’s a list of a few other issues that can make toilet time a real pain:

• Acute urinary tract infections (UTIs) – some or all of the urinary tract ( urethra⁠ (urethra: The urinary tract, where people pee from. On a penis, the opening to the urethra is at the head of the penis; on a vulva, the opening is above the vaginal opening and below the external clitoris.) /bladder/ureters/kidneys) is infected by bacteria (this does not include an infection of the prostate)
• Sexually transmitted infections (STIs) like chlamydia⁠ (chlamydia: A very common bacterial infection/STI. It can infect the cervix, urethra, testicles, fallopian tubes, and/or ovaries. It can also infect the throat when acquired through oral sex. Chlamydia requires medical treatment.) , gonorrhea⁠ (gonorrhea: A bacterial infection/STI which can infect the cervix, uterus, fallopian tubes, urethra, mouth, throat or anus. It requires medical treatment.) , and genital herpes
• Allergic reaction or sensitivity⁠ (sensitivity: A responsiveness to internal or external stimulus.) to soaps, body washes, etc. used in the genital region
• Irritation of the urethra (the tube where pee comes out) after sex⁠ (sex: Different things people choose to do to actively express or enact sexuality and sexual feelings; often this involves genitals, but not always. )

This is not a comprehensive list, but it includes the most common things that you and a physician must rule out prior to considering a diagnosis of IC/PBS or CP/CPPS. First things first: if it hurts or burns when you pee, call a healthcare provider⁠ (healthcare provider: A qualified person to provide sound physical and/or mental healthcare, such as a doctor, nurse, clinician, counselor, medical assistant, midwife or other healthcare professional.) !

What are the symptoms of these syndromes?

The overlap in symptoms between people with “chronic prostatitis/pelvic pain syndrome” and those with “interstitial cystitis/painful bladder syndrome” is striking, so much show that most lists of reported symptoms are nearly identical. The chart below illustrates these commonalities:

• ⁱ The feeling of needing to empty the bladder more often than once every 2-4 hours
• ⁱⁱ Involuntary leakage of urine, often with specific activities (jumping, sneezing, etc.) or triggers (the sound of running water, arriving at your home’s front door, etc.)
• ⁱⁱⁱ Needing to wake up to pee multiple times (>1) at night
• ^iv A sudden, intense need to void the bladder, often without warning
• ^v When it takes longer than 10 seconds to start the flow of urine, and/or difficulty maintaining a stream of urine, despite feeling the need to pee.

In both conditions, symptom “flares” are also very common: a flare is when someone experiences a worsening of their various symptoms, for periods lasting from a few minutes to several days. These flares may or may not have specific triggers.

While people born with vulvas and vaginas were slightly more likely to reports flares of their symptoms than those with penises and testes⁠ (testes: Reproductive glands of people with penises. They sit outside the body and are contained within the scrotum.) , nearly 80% of all folks with these symptoms will experience at least one symptom flare per year.

The correlation between these two lists is striking, and it should demonstrate why many experts have come to believe CP/CPPS and IC/PBS are actually the same condition (more on that soon).

I should note that while some of the symptoms only show up on one side of the chart, this does not mean that the symptom never occurs on the opposite side: for example, I’ve seen patients with penises and the diagnosis of “chronic prostatitis” who report occasional incontinence, and patients with vaginas and “interstitial cystitis” who have urinary hesitancy. Long story short, the two conditions are extraordinary similar, so it makes sense to look at them through the same lens.

What causes these Painful Peeing Syndromes?

As with many pelvic pain conditions, the root causes of these painful bladder syndromes are poorly understood: while there are many hypotheses, a consensus on cause remains elusive. Fortunately, a large research group with centers across the country is actively working to better understand these conditions and inform future studies on them. Let’s consider a few common theories.

Interstitial Cystitis/PBS

Let’s first examine some of the hypotheses for the cause of interstitial cystitis in people born with a vulva and vagina.

• Bladder damage: early theories postulated that damage to the bladder lining allowed urine to leak into the sensitive tissue underneath and irritate it, leading to pain and dysfunction.¹
• Chronic inflammation: some researchers have pointed to chronic inflammation as a cause: inflammation in general is a normal immune response to injury, but when it sticks around in the body longer than it should, it can become problematic and create a vicious cycle of pain and even more inflammation. ¹
• Prior pelvic surgeries: because surgeries trigger⁠ (trigger: In the context of behavior, a trigger is an experience that triggers a traumatic memory in someone who has experienced trauma.) a natural immune response in our bodies, some have theorized that a pelvic surgery for some “unrelated” reason—like a hysterectomy⁠ (hysterectomy: A surgical procedure to remove the uterus. In some cases, it may remove the cervix as well. ) to remove the uterus—can trigger the onset of IC. Additionally, scar tissue left behind by such procedures can create adhesions (areas of thickened, inflexible tissue), and this can contribute to dysfunction in surrounding organs.¹
  • Some experts think that IC was present all along in these patients, and perhaps the pelvic surgery just exposed it more clearly.¹
• Estrogen: because many people with IC tend to report decreased symptoms when their estrogen⁠ (estrogen: A steroid hormone found in the bodies of all people, produced in the ovaries and the adrenal glands.It is involved in puberty, menstruation, pregnancy, mood, bone health, and other things across the body and lifespan .) levels are lower (either naturally during their menstrual⁠ (menstrual: Having to do with menstruation.) cycles or when taking oral contraceptives⁠ (oral contraceptives: Hormonal medications, taken by mouth daily, used to prevent unwanted pregnancy. Another name for birth control pills.) to stabilize estrogen levels), some researchers think estrogen may play a role in IC.¹
• Pelvic floor muscle spasm: while we are still unclear on why this happens, many practitioners who work with people with IC agree that spasms and tightness in the pelvic floor muscles are almost universally present in this population. These muscle spasms are likely a primary source of symptoms for people with IC – they can press on the bladder and urethra and cause both urinary urgency and pain.¹

While genetics are factor in many medical conditions, genetics do not appear to play a key role for people with IC: if your parent or sibling has IC, there’s only about a 4% chance that you will also have it.¹

Chronic Prostatitis/CPPS

Previously, we discussed how the term “chronic prostatitis” should truly only apply to one specific case: the condition that arises when someone with a prostate keeps getting urinary tract infections from the same bacteria, which has chronically infected the prostate: the bacteria living in the prostate can travel to the urethra to cause repeated UTIs. Risk factors for this type of recurrent infection include:

• The presence of foreskin⁠ (foreskin: A loose tube of skin with nerve endings that extends from shaft of the penis to below the glans and which normally covers the head of the penis when it is not erect. ) in a person with an uncircumcised penis
• A stricture, or bend, in the normal course of the urethra
• A history of sexually transmitted infection ( STI⁠ (STI: Sexually transmitted infections: illness, infection and/or disease which is often or can be transmitted through sexual or other intimate contact, like HIV, Chlamydia or Herpes. Some people call STIs STDs.) )
• Retrograde ejaculation (when semen⁠ (semen: Fluid which comes from the urethra of the penis during ejaculation, and which usually contains sperm.) moves backwards towards the bladder instead of out of the penis)
• A recent medical procedure that required catherization or other invasive work around the urethra
• The normal increase in size of the prostate with aging (called benign prostatic hypertrophy, or BPH)

The vast majority of cases that may still be erroneously called chronic prostatitis are actually the non-bacterial version—chronic pelvic pain syndrome—in which no active infection of the urethra or prostate is present. Much like IC/PBS, the causes of CPPS are poorly understood, but most experts agree that changes in the way the nervous system processes pain are part of the problem.

One theory postulates that some prior injury or insult to the prostate triggered the nervous system⁠ (nervous system: The system of cells, tissues and organs that regulate our body's responses to internal and external stimuli.) to go into overdrive, leading to persistently over-sensitized nerves in the pelvis of someone with CPPS. However, not everyone with CPPS has had a previous injury to their prostate, so this doesn’t explain everything.

Interestingly, some recent urology research demonstrated that the brains of people with CPPS were actually different from the brains of those without it. Specifically, the researchers found changes in the structure and function of the regions of the brain that help control urine storage. This research suggests that CPPS is a system-wide problem that affects multiple areas of the body: it’s not just the bladder or the prostate causing trouble!

All in the Family: Urologic Chronic Pelvic Pain Syndrome (UCPPS)

As we discussed previously, there are many areas of overlap between IC/PBS and CP/CPPS. Researchers in this field have noticed the same thing, and recently, many experts have begun discussing and studying these conditions together under the unifying term “urologic chronic pelvic pain syndrome”. From here on, I’ll use UCPPS to refer to the pain conditions we are discussing, irrespective of genital anatomy⁠ (anatomy: The body, parts of the body, or physical structure of organisms like people, animals or plants.) .

What’s Wrong With Me, Doc? – The Road to Diagnosis

As with many chronic pain conditions, receiving an accurate diagnosis of UCPPS can be a long and winding road involving several specialists and a variety of testing.¹ Often, this is because the research on these conditions—particularly the research placing IC and CP under the same umbrella—is incomplete, and not all providers are up to date on it.

Don’t lose hope, though! Armed with this new knowledge, you are better prepared to advocate for yourself or a loved one living with the symptoms of UCPPS. Here’s what to expect during the diagnostic process:

History and Examination

As with any other medical concern, your provider should start by taking a thorough history, asking you about your symptoms: what you feel, when you feel it, the things that make your symptoms better or worse, etc.

If you tend to freeze in medical settings, or if you feel you often forget to mention key points about your condition, it can help to keep a diary or log of your symptoms for a few weeks prior to your appointment.¹ This can ensure that you provide the most accurate information, and it allows you and your provider to observe patterns in your symptoms.

A physical exam is also key to the diagnostic process.¹ This will often include palpation, in which your provider uses light touch in areas of pain, such as above the pubic bone (where the bladder lives) and along the abdomen.

Some providers will also suggest an internal examination: pelvic physical therapists like me are specially trained to perform digital examinations via the vagina or the rectum⁠ (rectum: The internal passage between the anus and the colon; stores solid waste until it leaves the body through a bowel movement.) . These examinations can really help define your symptoms and locate areas that may be contributing to them. However, internal examinations are never mandatory – it’s important that your provider explains what they would like to do and why, and gives you the opportunity to decline or delay such an exam if you aren’t ready.

Lab Testing

As we discussed above, it's important to first rule out other conditions like UTIs or STIs when considering a diagnosis of UCPPS. This is why your provider will likely have you undergo urinalysis (the pee in a cup test) to check for infection. If an infection is found, they will typically recommend treating it with a course of antibiotics.

However, if you use the antibiotics as directed and are still having symptoms after completing the course, you should go back to your doctor. Some folks need to try a different type of antibiotic. However, for many others, the active infection was layered on top⁠ (top: In sexuality, this is someone who wants to take the/a lead during sex with a partner or partners, or to consensually take the role of being in charge of sexual actions.) of underlying UCPPS, so more work must be done to help address the pre-existing pain condition.

If you are a current or former tobacco user, your provider may send your urine sample for further testing called urine cytology: this test looks for abnormal cells in your urine that could indicate more serious conditions for which smokers are at higher risk.

More Complex Testing

In some cases, your provider may recommend more extensive testing if your presentation is more complex – for example, if you have abdominal pain or other gastrointestinal symptoms, severe urinary incontinence, or gynecologic symptoms, some additional tests may be required to rule out other conditions. Here are few that you may encounter:

• Cystoscopy
  • A tiny camera on a flexible tube is inserted through the urethra to look into the inside of your bladder and check for Hunner’s lesions or other abnormal tissue¹
  • The urethra is anesthetized with a gel during the procedure so that it doesn’t hurt.
• Urodynamics
  • This a series of tests to assess how rapidly your bladder empties, how much urine remains in the bladder after you feel that you’re empty, and how much pressure naturally exists in your urethra.¹
  • It’s typically used to diagnose a different condition known as overactive bladder (OAB).¹ OAB on its own is not painful, so if you have persistent pelvic pain along with the urinary symptoms we’ve discussed, it almost certainly isn’t OAB – in that case, urodynamic testing usually isn’t necessary.¹
• Potassium sensitivity test
  • This test is honestly outdated, and most experts agree that it’s not very useful, because it results in a lot of false positive results, and it fails to identify about 20% of people with PBS.¹ If your provider recommends this test, you may want to seek a second opinion.

Remember: UCPPS is a “diagnosis of exclusion” – it’s given when all other possible diagnoses are ruled out.¹ However, this does not mean that treatment for it should be excluded too! Let’s get to the really important part now: how we can treat the painful peeing syndromes.

Treatment of UCPPS

Despite the complexity of this syndrome, there is plenty of hope for people with UCPPS. The process of diagnoses and treatment can be a long road, but with a good multidisciplinary team of providers, you can reach your goals and feel better. Let’s consider the key components of a treatment plan for UCPPS.

• Medications
  • Oral medications
    • A wide variety of medications have been studied in people with UCPPS. While no single drug stands out as the best option for all patients, a trial-and-error approach to a few different medications can help you and your physician find the combination that works best for you.
    • If you can find a urologist near you who specializes in the treatment of these conditions, they will be well-versed in the various medication options. They may suggest off-label uses of a few medications, like anti-depressants or antihistamines, that can help with some of the symptoms of UCPPS.
  • Bladder treatments
    • Instillations: this procedure delivers medication directly to your bladder through a catheter and it can be quite helpful for many patients.¹
    • Numbing injections to the bladder can temporarily reduce pain.¹
    • Various types of stimulation to the nerves that go to the bladder can help calm it down, reducing pain and overactivity.

• Pelvic floor physical therapy
  • I’m not including this one just to toot my own horn: multiple research studies have recommended pelvic floor PT as a front-line treatment for UCPPS. You’ll want to find a PT who specializes in pelvic health (aka women’s and men’s health, though “pelvic health” is more inclusive): you can find one near you here!
  • Your pelvic health PT can help you with the muscular problems that can result from, and exacerbate, the symptoms of UCPPS. They can also help you learn new techniques to manage pain and symptom flares.
• Dietary changes
  • There is strong evidence to suggest that certain foods and beverages can trigger symptom flares for many people with UCPPS. Tomatoes, soy products, citrus fruits and other acidic foods, and very spicy foods are common culprits, but of course, each person will respond a bit differently. Alcohol and caffeine can also exacerbate symptoms for many folks.¹
  • Your providers may suggest an elimination diet, in which you limit yourself to a very neutral diet, without any of these potentially aggravating foods/drinks, for several weeks.¹ If your symptoms improve, then you can gradually start adding back in one food item at a time to help identify possible triggers. Elimination diets aren’t right or safe for everyone, though, so it’s important that you and your provider talk openly about any pre-existing dietary issues you have or had, particularly if you have dealt with disordered eating of any type.
• Complementary therapies
  • Addressing mental health concerns is a hugely important part of treatment for UCPPS. Many people living with chronic pain conditions like UCPPS also struggle with anxiety, depression, and other mental health issues, often as a result of living with a poorly managed health condition like this. UCPPS and mental health conditions can operate in a vicious cycle, mutually reinforcing each other. Working with a counselor or other mental health professional can help you learn to manage these issues and break free from the cycle.
  • Alternative therapies, such as acupuncture and supplement regimens, can also help some people manage their symptoms.¹ While most of these approaches have not been rigorously studied in the research, many folks still find them helpful as part of a holistic treatment plan.
• Self-care plan
  • In addition to receiving care from the providers on your healthcare team, you also play an important role in managing your condition through regular self-care at home.
  • A regular regimen to help relax the muscles in and around the pelvic floor is a key supplement to your physical therapy treatment.¹ Your pelvic PT can teach you stretches and breathing techniques to perform at home between visits. If appropriate, they may teach how to perform some manual techniques on your own muscles to help them relax further.
  • Stress management is key, as elevated stress has been shown to exacerbate symptoms for many people with UCPPS. A mental health professional can help you learn techniques to better manage stress and prevent it from causing a flare.

This all may seem like a lot to digest on your own. This is why the road to recovery ideally starts with gathering together a team of providers and other supportive people, like trusted friends and family, to help you along your journey – it takes a village, as they say. I hope this guide was a helpful introduction to the world of the painful peeing syndromes, and that you feel ready to start your own journey towards better pelvic health!