Interstitial Cystitis

Commonly referred to as painful bladder syndrome (PBS) or chronic pelvic pain syndrome (CPPS), interstitial cystitis (IC) is a urological condition characterized by burning during urination, increased urinary frequency and urgency, blood in urine (hematuria), and discomfort or pain in the perineum, urethra, lower abdomen, and lower back.1 These symptoms are common among other urogenital conditions as well, including urinary tract infections (UTIs), yeast infections, and some sexually transmitted infections (STIs), making the condition difficult to diagnose. It is important that people experiencing these symptoms do not self-diagnosis, please contact a medical professional for an accurate diagnosis.

There are two types of interstitial cystitis: ulcerative and non-ulcerative.1,2 Ulcerative IC is characterized by red, bleeding patches on the wall of the bladder known as Hunner's ulcers. Ulcers are distinct areas of inflammation along the all of the bladder. Ulcerative IC affects approximately 10 to 20% of those diagnosed with IC.1 Patients are diagnosed with ulcerative IC based on the presence of one or more distinct, inflammatory ulcers. These patients tend to be older, have lower bladder capacities, have greater urinary frequencies, and exhibit neurobiological differences (compared to patients with non-ulcerative IC) that increase inflammatory processes.17 A patient is  diagnosed with non-ulcerative IC if there are no distinct ulcers, however the patient is experiencing similar symptoms. About 90% of IC cases are non-ulcerative.1

The prevalence of IC is significantly higher in females than in males, most likely due to the shape of the female internal anatomy.2 It is currently estimated that 3 to 8 million females and 1 to 4 million males are currently experiencing interstitial cystitis in the United States.3                   

What Causes Interstitial Cystitis?

The exact cause of IC has not yet been determined, but there are several theories as to what causes the condition. Some possible causes include the following:

  • An infection, inflammation, or lesion that caused damage to the bladder tissue can lead to imbalance in urine storage, thereby causing frequent urination, reduced capacity, and pain in the pelvic region.3
  • A specific type of inflammatory cell, called a mast cell, releases histamine and other chemicals that lead to IC symptoms.3,4
  • A person who has a first degree relative with IC is more likely to be diagnosed than the rest of the population. This is called a genetic predisposition. However, IC is not believed to be caused entirely by genetics, environmental factors also play a role.3
  • An autoimmune disease may cause the body's immune cells to attack the bladder. An unexplained association between IC and other autoimmune diseases such as inflammatory bowel disease, fibromyalgia, and others has been found.5
  • A neurogenic disorder in which the nerves that carry bladder sensations become inflamed. The patient experiences pain from events that are not normally painful.3,4
  • An unidentified infectious agent of bacterial, viral, or even fungal origin. One study points to an infection caused by Nanobacteria leading to the onset of IC in some patients. However, further investigations are needed to confirm these findings.3

Because a specific cause has not yet been determined, diagnosing IC is challenging. There is no test or physical exam for IC, so it is diagnosed after other conditions have been ruled out. Symptoms associated with IC are very similar to other disorders of the urinary system such as UTIs, bladder cancer, kidney stones, STIs, endometriosis, and prostatitis, among others.5 These disorders must first be ruled out before a patient can be diagnosed with IC. 

Treatment Options

While there is no known cure for interstitial cystitis, there are many ways to lessen the severity of the symptoms. Many patients find relief after making certain changes to their lifestyle, taking medications prescribed to them by their healthcare provider, and in some severe cases, undergoing surgery. No simple treatments exists to eliminate all signs and symptoms of IC and every patient responds to treatments differently. People who have been diagnosed with IC need to work with their healthcare provider to find a treatment plan that works with their body and lifestyle.

Diet and Lifestyle Changes

Many people with IC find that cutting out certain foods from their diet and replacing them with "bladder friendly" foods can lessen symptoms associated with IC. IC specialists, in collaboration with nutritionists, have divided foods into bladder friendly foods, foods that might bother sensitive bladders, and foods that are known to irritate the bladder.6 Some foods and beverages to avoid to reduce bladder irritation include soy products, overly processed foods, products containing caffeine, alcoholic beverages, spicy foods, and acidic fruits and beverages. Some foods and beverages that are known to soothe the bladder include water, blueberries, fish, milk, squash, eggs, and chamomile or peppermint tea. Nutritionists and IC specialists recommend keeping a food and symptoms diary to determine what may exacerbate IC symptoms.6

Many patients with IC report that smoking tobacco products intensifies symptoms.5 Quitting smoking and other use of tobacco products provides symptomatic relief for people with IC and decreases the risk of developing certain cancers, heart disease, hypertension, and other serious illnesses. 

Many of the urinary, bowel, or sexual dysfunctions associated with IC can be improved by pelvic floor physical therapy. Physical therapy techniques such as myofascial release, tension release, and visceral manipulation (massage therapy) reduce painful symptoms by lengthening pelvic floor muscles and reducing neural tension caused by physiological abnormalities such as tight muscles or narrow nerve paths.16 Myofascial release a physical therapy technique where the therapist applies gentle, sustained pressure to muscles and connective tissues to relive pain. In addition to physical therapy treatment programs, low impact exercise such as walking or stretching have been shown to reduce the severity of IC symptoms as well.5 These types of exercises also promote relaxation and decrease stress levels which can be beneficial as many IC patients report worsening of symptoms during times of high stress.4 Other relaxation techniques such as meditation can help with symptom relief.

A technique known as bladder training can help reduce frequency of urination.5 People experiencing frequent urination can focus on increasing the amount of time between urinating. For example, if a person feels the urge to urinate every 45 minutes, they can try to increase that time to 60 minutes. A diary can be used to track bladder training progress.5

Medications

If lifestyle changes are not sufficient in reducing severity of IC treatments, medications may be considered. The type of medication prescribed depends on the patient's symptoms and lifestyle. Some medications improve symptoms for some patients but not others. Some people with IC need to try many medications or a combination of medications to experience symptom relief. The following oral therapies have been shown to improve symptoms:

  • Sodium pentosan polysulfate (Elmiron): Elmiron is the only oral drug approved by the U.S. Food and Drug Administration (FDA) for the treatment of people with IC. Its mode of action is not entirely understood, but it is believed to act as an anti-inflammatory agent that restores the protective layer of the bladder epithelium.5 Patients take 100 mg orally three times per day. Patients in clinical studies did not show improvements until the drug had been taken for five to six months. Rare but  possible side effects include headache, rash, dizziness, diarrhea, dyspepsia (general term for indigestion), abdominal pain, hair loss, and liver function abnormalities.5 Elmiron is effective in relieving pain in about 30 out of every 100 patients.4
  • Tricyclic antidepressants: Tricyclic antidepressants alleviate the pain of IC and also help a patient deal with the psychological stress associated with a chronically painful condition.5 They also cause drowsiness and deepen REM sleep, which helps in decreasing nocturia (excessive urination during the night).5 Dosages vary depending on the type of tricyclic antidepressant prescribed. The dosage prescribed to patients with IC is much lower than the dosage prescribed to patients using tricyclic antidepressants to treat depression.9 A few examples that are used to treat IC are amitriptyline (Elavil), doxapin (Adapin, Sinequan), and imipramine (Tofranil).5 Some tricyclic antidepressants, such as amitriptyline, have antihistamine effects, decrease bladder spasms, and slow the nerves that carry pain messages.4
  • Antihistamines (primarily hydroxyzine): Hydroxyzine affects mast cell degranulation which is thought to play a part in some patients' IC. Mast cell degranulation refers to a cellular process involved in the immune response, especially during an allergic reaction.7 Hydroxyzine has been shown to decrease nocturia, daytime frequency of urination, pain during urination, painful intercourse, and bladder pressure.3 Hydroxyzine is available in a pill form (hydroxyzine pamoate) or a liquid form (hydroxyzine hydrochloride). Improvements can be seen within a few weeks to two months after beginning therapy.3  Potential side effects include sedation, dry mouth, and increased depression in patients who are also diagnosed with depression.3
  • Anticholinergics and antimuscarinics: These are the principal drugs used to treat overactive bladder, urgency, and urge incontinence. Tolteradine (Detrol), oxybutynin (Ditropan), and others are used primarily with good results and few side effects. High doses may be required and combination therapy may be effective.5 Antimuscarinics are drugs that help relax muscles in the bladder and urinary tract.8

Another medical treatment used to treat IC is a bladder drug installation (bladder wash). Using a catheter, the bladder is filled with dimethyl sulfoxide (DMSO) which is held in the bladder for 15 to 20 minutes before being expelled. This treatment is given every week or every two weeks for six to eight weeks.5 DMSO is believed work as an anti-inflammatory agent. Bladder washing can prevent painful bladder contractions and reduce frequency and urgency of urination.5 DMSO also works by increasing bladder capacity by breaking down scar tissue by preventing the formation of collagen, a protein the body uses to create scar tissue.10 technique does not require anesthesia, hospitalization, or use of an operating rooms and patients can catheterize themselves may be able to self-administer the treatment at home.5 DMSO is the only FDA approved bladder instillation treatment for IC.5,10

Surgical Procedures

Bladder surgery may be recommended for IC patients who do not respond to other treatments. It is important for patients to discuss all options with their healthcare provider, as surgery does not always improve symptoms. Some surgical procedures used to treat IC include:

  • Fulguration: fulguration is the process of using laser surgery to treat Hunner's ulcers.5,11 Fulguration  works by destroying a layer of tissue with a laser or an electrical current. This treatment can provide relief of symptoms caused by ulcers, but symptoms may return necessitating additional treatment.11 Laser surgery has only been approved for treatment of ulcerative IC.11
  • Augmentation cytoplasty: this surgery removes the scarred and ulcerated part of the bladder and replaces it with tissue from the large or small intestine.5,11 Urine continues to be stored in the bladder and emptied through the urethra. Following this procedure, some patients continue to experience symptoms of frequency, urgency, and pain. There is also a possibility of IC recurring on the segment of the intestine used to augment the bladder. There is also a risk of infections, incontinence, or the requirement of a catheter to empty the bladder.5,11
  • Urinary diversion: this is a procedure that intends to divert urine from being stored in the bladder and excreted through the urethra. In one type of urinary diversion, the surgeon fashions a tube or other conduit from a short section of intestine and places the ureters in this tube. Ureters are tubes that carry urine from the kidneys to the bladder. The conduit is then diverted to an opening in the abdomen called a stoma through which urine drains and is collected in an external collection bag.11 Urinary diversion eliminates frequency but not always pain.11
  • Cystectomy: this refers to the total removal of the bladder. Once the bladder is removed, different procedures can be done to reroute the urine. In some cases, a new bladder is formed from parts of the small or large intestine.5 Total bladder removal is rarely performed. Before a patient undergoes a cystectomy, they must undergo detailed and honest counseling.5 Some patients who have had their bladder removed still experience phantom pain in the pelvic region, indicating there are neurological mechanisms that play a role in IC that are not yet understood.11

Because bladder surgery is invasive and irreversible, it is often used as a last resort. Only a urologist specialized in treating IC can advise a patient on the appropriateness of surgery for a particular situation. It is important for IC patients to communicate with their healthcare providers to determine what other treatments or combination of treatments works best to alleviate symptoms and fit with their lifestyle.

How Interstitial Cystitis Can Affect Sexual Experience

Patients with interstitial cystitis report high levels of sexual dysfunction.12 Sexual dysfunction symptoms among females with IC include dyspareunia, symptomatic flares after sexual intercourse, and decreased sexual desire, arousal, and orgasm frequency.12Dyspareunia refers to pain during or shortly after intercourse, including burning sensations or aching when touched or penetrated. Bogart et al. found that of the female participants in a sexual relationship, 88% were currently experiencing at least one sexual dysfunction symptom.12 However, the prevalence of males or females who experience both IC and symptoms of sexual dysfunction is unknown. Male sexual dysfunction associated with IC has not been researched to the extent of female sexual dysfunction. Males with IC can have genital and perineal pain similar to pain females experience. Additionally, males may experience painful intercourse, low sexual desire, erectile dysfunction, and pain during and after ejaculation.13 Despite a higher incidence of sexual dysfunction among people with IC, experiencing a satisfying and rewarding sex life is very possible with some extra patience and planning. Below are some tips on how to make sexual activity more comfortable:

  • Plan ahead: It can be helpful for people with IC to try to plan their sexual encounters for when symptoms are less severe and when they are physically and emotionally ready for sex. Sexual experiences can also be planned for after IC treatments such as physical therapy or stretching, bladder instillations, oral treatments, etc.13 Taking a warm shower or Epsom salt bath before engaging in sexual activity can help relieve pain and promote relaxation.14 Showers or baths also provide an easy way for partners to get involved—it can be used as a way to relax, reduce pain, and begin foreplay.
  • Masturbate: patients with IC can determine what sexual activities are comfortable versus what activities exacerbate symptoms by experimenting through masturbation. Males and females can use a vibrator not only for sexual stimulation, but also to massage the perineum (small area of skin between the anus and the genitals) and lower back area which reduces pelvic floor tension.15 Females are encouraged to use a vibrator, dildo, or vaginal dilator to explore penetrative sensations and find what feels pleasurable.14,15

  • Engage in plenty of foreplay: this is essential for pleasurable sexual activity for people with and without IC. Foreplay is a term that describes a variety of sexual activities that are meant to increase arousal for both partners before penetration occurs. Acts of foreplay can include manual stimulation, oral stimulation, deep kissing, sensual massages, and more. For females, foreplay increases arousal and as a result increases vaginal lubrication. Lubrication reduces friction during sexual intercourse, making sex more pleasurable for both partners. Many couples incorporate personal lubricants into their sex lives to increase the amount of lubrication present, enhance sensation, or create novelty. Water-based lubricants are recommended for vaginal penetration.
  • Go slowly and experiment with different positions: females with IC often experience pain during penetration because of the proximity of the bladder to the vagina, uterus, and cervix.15 Attempting penetration slowly can help a female with IC relax her body and focus enjoying the activity and being intimate with her partner. Some females find that positions that reduce pressure on the bladder, such as side-facing positions, are more comfortable than male-on-top positions. However every person experiences IC differently and what might be comfortable for one person may not be comfortable for another.15 Some females with IC find that anal sex is a comfortable alternative for to vaginal penetration while others find that anal sex aggravates IC symptoms. When experimenting with anal sex, take it slow and use plenty of personal lubricants. To read more about how to have safe and pleasurable anal sex, read our article about anal sex. Do not feel pressured to engage in penetration—there are many other sexual activities to try that will leave both partners satisfied.
  • Communicate effectively: effective communication is paramount in any relationship. It is especially important for people with IC to maintain open and honest communication particularly when it comes to sexual activity.15 Discuss what is comfortable and what may be worsening painful symptoms. Patients experiencing chronic pain may have to redefine what a satisfying sex life means for them and it is important to include sexual partners in these conversation.15
  • Urinate before and after sexual intercourse: emptying the bladder before sex can reduce pressure on the bladder during intercourse which can decrease pain. Urinating after sex decreases the risk of contracting a urinary tract infection and can help alleviate pain after intercourse. A cold compress or a heating pad can also help soothe muscles after sex.14,15
  • Explore alternatives to intercourse: if intercourse is too painful for one partner, there are many other ways for partners to be intimate in a sexual way. Cuddling, mutual masturbation, oral sex, sensual massages, or dry sex are all sexual activities that do not involve penetration.

Adhering to these recommendations can greatly improve sexual experiences. People with IC and other bladder infections should talk to their healthcare providers about any risks involved with sexual activity.

Interstitial Cystitis Resources and Support Networks 

Experiencing symptoms of interstitial cystitis can cause a lot of feelings of confusion and frustration. Fortunately, there are many support groups and online blogs available to answer questions, and provide information and support for people struggling with symptoms or a diagnosis of IC. A few online resources are listed below:

If you are experiencing any symptoms associated with interstitial cystitis, please contact your doctor as soon as possible. While the causes of IC still remain largely unknown, there a variety of treatment options and pain management methods. If you have any questions about an IC diagnosis or treatment, please contact your healthcare provider. If you have any questions about sexual health or relationships, please Ask the Sexperts. Please note that none of us here at SexInfo are medical professionals.

References

1. Smith, Lori. "Interstitial Cystitis: Causes, Symptoms, and Treatments." MedicalNewsToday.com. Medical News Today. 24 Dec. 2015. Web. 17 April 2017.

2. Patnaik, Sourav Sanchit et al. "Etiology, pathophysiology and biomarkers of interstitial cystitis/ painful bladder syndrome." Archives of Gynecology and Obstetrics.10.1007 (2017): 1-19. PubMed Central. Web. 17 April 2017.

3. "4 to 12 Million May Have IC." ICHelp.org. Interstitial Cystitis Association. 18 Feb. 2015. Web. 16 April 2017.

4. "What Causes IC/BPS?" UrologyHealth.org. Urology Care Foundation. n.d. Web. 17 Feb. 2017.

5. Lazarou, George et al. "Interstitial Cystitis." eMedicineHealth.com. WebMD. 16 Dec. 2015. Web. 17 April 2017

6. Bayer, Julie. "IC Diet: Food List." IC-Diet.com. Interstitial Cystitis Diet: Confident Choices. n.d. Web. 17 April 2017.

7. "Mastocytosis and Mast Cell Disorders." Mastocytosis.ca. Mastocytosis Society of Canada. n.d. Web. 17 April 2017.

8. "Other Medicines." ICHelp.org. Interstitial Cystitis Association. 25 March 2015. Web. 17 April 2017.

9. "Antidepressants." ICHelp.org. Interstitial Cystitis Association. 25 March 2015. Web. 17 April 2017.

10. "DMSO." ICHelp.org. Interstitial Cystitis Association. 6 July 2015. Web. 17 April 2017.

11. "Surgical Procedures." ICHelp.org. Interstitial Cystitis Association. 25 March 2015. Web. 18 April 2017.

12. Bogart, Laura M. et al. "Prevalence and Correlates of Sexual Dysfunction Among Women With Bladder Pain Syndrome/Interstitial Cystitis." Urology. 77.3 (2011): 576-580. Science Direct. Web. 18 April 2017.

13. "Intimacy and IC." ICHelp.org. Interstitial Cystitis Association. 26 May 2016. Web. 18 April 2017.

14. "Jen's Tips for Great IC Sex." IC-Network.com. Interstitial Cystitis Network. 2 Sept. 2006. Web. 18 April 2017.

15. "When Sex Hurts: Intimacy and Interstitial Cystitis." IC-Network.com. Interstitial Cystitis Network. 2 May 2006. Web. 18 April 2017.

16. "Interstitial Cystitis (Painful Bladder Syndrome)." PelvicHealing.com. Sarton Physical Therapy. n.d. Web. 30 May 2017.

17. Peters, Kenneth M et al. "Are Ulcerative and Nonulcerative Interstitial Cystitis/Painful Bladder Syndrome 2 Distinct Diseases? A Study of Coexisting Conditions" Urology. 78.2 (2011): 301-308. Science Direct. Web. 31 May 2018.

Last Updated: 3 June 2017.