Interstitial Cystitis: Recognizing and Caring for a Wounded Bladder

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Julie Beyer, MA, RD

  According to the Interstitial Cystitis Association (ICA),1 interstitial cystitis (IC), a painful and puzzling bladder disorder, “is a condition that consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency and urgency.” The RAND Interstitial Cystitis Epidemiology study2 reported in 2009 that approximately 3 to 8 million women and 1 to 4 million men suffer from IC.

  Historically, IC was considered a chronic pelvic pain syndrome originating in the bladder, but epidemiological studies comparing IC with similar conditions belie the simplicity of this statement. International researchers working to describe what is happening to an IC bladder are including other syndromes similar to IC; hence, IC is referred to alternatively as painful bladder syndrome (PBS), bladder pain syndrome (BPS, used primarily in Europe), and hypersensitive bladder syndrome (HBS, used primarily in Asia). Men also may be diagnosed with chronic prostatitis (CP), which shares similar symptom characteristics with IC. For the purpose of simplicity, in this article the condition will be called IC.

Clinical Presentation

  Patients with IC experience urinary pain, frequency, urgency, and nocturia that cannot be attributed to other causes; thus, diagnosis frequently is by exclusion.3-5 Although symptoms of IC can be confused with a urinary tract infection, urine from an IC patient does not show any bacteria when cultured. The fundamental pathophysiology of IC is a damaged or wounded bladder lining. Both the glycosaminoglycans (GAG) layer (the protective mucous coating on the surface of the bladder) and the urothelial layer (the skin-like barrier that transmits the messages of pain and urgency to the brain) can be damaged in a bladder, causing IC symptoms. Diagnosticians may observe glomerulations, or petechial hemorrhages, when a patient undergoes a cystoscopy under anesthesia; however, there is some concern this damage could be caused by the procedure itself. Approximately 7% to 9% of patients actually have ulceration (Hunner’s ulcers) in the bladder lining.6 Mastocytosis (akin to having hives in the bladder) is also a common finding.7

Assessing Bladder/Urethral Symptoms

  For diagnostic purposes, IC pain generally worsens as the bladder fills with urine and is relieved upon emptying the bladder. The pain may or may not be perceived as coming from the bladder. Many patients report their pain is urethral, with varying degrees of pelvic pain. Other patients report back pain, shooting pain down the legs, and pain that is positional — for example, sitting in one place too long can trigger symptoms. In addition, both men and women report pain with intercourse. Men with IC often experience penile pain at the moment of ejaculation; women can experience pelvic pain up to 24 hours after intercourse. Women’s symptoms also may increase premenstrually and at ovulation.8 Brookoff9 explains that IC is primarily visceral. The messages for visceral pain travel to the same area of the brain where emotions are generated, so IC patients may appear to be highly emotional. In addition, IC pain can be neuropathic; the person is in pain for so long, the nerves become damaged, resulting in more intense pain signals over time. Patients considering cystectomy need to weigh the perceived and potential benefits of bladder removal with fact that many continue to experience neuropathic pain after surgery.

  The other two cardinal symptoms of IC are frequent urination and an unexpected urge to get to the bathroom immediately. Patients have reported having to use the bathroom up to 60 times a day. Nocturia and the resultant sleep disruption become a major cause of distress for patients.



says: January 23.2012 at 08:58 am

This is the one horrific disease. I've suffered from IC for the past eleven yrs and have had fourteen surgeries to the date. The burning is my chief complaint, it's non-stop. The pressure and feeling as if you're still pregnant or carrying a ten-pound baby in between your legs is just as painful. I wish this on no one.

It seems like no matter what surgery I have I'll always be in pain. It always debilitates you in some way. I'm completely house trained now, due to this wonderful disease it will keep you close to the bathroom if nothing else. Besides removing my bladder, which my urologist will do when I'm ready, can anyone else share some of their ideas for pain, besides the ten daily meds I take for this? My urologist said if he removes my bladder I will suffer from phantom pain, so that's my only hesitation for not removing this monster inside of me. Thank you for listening

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says: January 23.2012 at 00:10 am

I have a slightly different approach to looking at IC as "in the bladder" in that yes, it is the bladder where the pain is, but the bladder is the catchment for the waste and it is the very waste that is causing one to have IC. Since I have taken this a step backwards to eliminate/reduce the waste that causes the flare-ups of IC, my symptoms have really improved...not only in my bladder but also in my eyes (I was informed that the lining of the eyes are very similar to the lining of the bladder!!!). My, oh my, one really learns and knows what foods produce the irritating wastes that cause IC. These (for me) are high oxalate-rich foods, and artificial food dyes (esp yellow).
Everyone has an individual case, and it is a long hard road to learning and discovering what one's individual tolerance/avoidance levels are.

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says: February 1.2012 at 14:10 pm

I did not know about the eye/bladder connection, but do know my eyes get red a lot and one of my best friends says she can tell when I'm hurting by my eyes. The eye allergy drops do wonders for my eyes. I have had allergies so bad at times that only benadryl will help. Also I have had a blocked tear duct many times. I find Benadryl helps the ic pain and I do better if I take a daily antihistamine....prob.we all need to see an allergist.

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says: January 19.2012 at 16:29 pm

This article really explains what is it like to have IC...not just an article written for professionals...but the true REALITY of the disease. Which is VERY refreshing. Thank you for this article. I can use this to help explain it to medical professional who don't otherwise understand or have been misinformed.

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says: January 19.2012 at 09:10 am

When IC symptoms are worse before and during menstruation, this is a clue that the cause of a woman's IC symptoms is hormonal. If you check the ph of the urine during urine flow, it will read acidic. My IC is caused by estrogen dominance-having too much estrogen in the body. Symptoms are worse before menstruation because this is when estrogen levels are highest in the woman with IC. Estrogen is acidic by nature and therefore turns the urine to acid, causing pain and frequency. In order to combat estrogen dominance in the IC patient, hormonal balance has to be established via estrogen metabolizers, such as DIM and Myomin. Also, the IC patient with estrogen dominance is more than likely also suffering from adrenal fatigue,which also needs to be adressed. Furthermore, there is often a candida infection in the body of the IC patient that needs to be treated with the appropriate diet, antifungals, and probiotics to entirely remove the invasive pathogens from the bladder.

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says: January 19.2012 at 16:27 pm

What about post menopausal women or men??

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says: February 17.2012 at 18:34 pm

I just found out I am in presurgical menapause and had been taking estroden 2mg for 8 yrs after 2 gyns finally the 3 rd drew my blood and when I got the call back I was told I was getting no estrogen so they changed to a higher dose a month and a 1/2 I was worse called back drew blood again and my body was not asorbing the hormones so this month will be my 5th shot but I can tell a difference!!!! God Bless and as far as removing the bladder its a hard surgery and you still have phantom pain and nerve damage if you have had cystos and hydros you will hve in severe nerve damage which makes me sick we trust uros with our life and all they do is make things worse I do not even see a uro been through 7 stick with my 2 Great Mds and they take care of my IC meds and Pain meds !!

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says: December 16.2011 at 00:06 am

This is one of the most frustrating diseases, you look healthy, yet you hurt so bad and even though there are millions of women and men diagnosed with it, rarely do I ever meet a health care professional that is not a urologist that understands that this is 1. a chronic condition and 2. not a bladder infection. When I took my training for hyperbaric medicine, one of the speakers mentioned there has been some promising results in testing the effectiveness of hyperbaric medicine in treating IC, That was in 2008; does anyone know if there has been any further developments on the horizon for using hyperbaric oxygen as a treatment modality for the pain of IC?
Thank you for this article. The public needs the education!

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says: January 20.2012 at 12:56 pm

I agree with your comment, though i hesitate to add, even urologists do not fully understand IC and the best treatment I have received for my IC (of 9yrs so far) is from the pain management center.

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says: January 23.2012 at 21:51 pm

Hi. I have IC also and can you tell me what your pain management center did for you to help you? I so far have had 5 Dmso treatments which first 2 worked last 3 not so well. Been taking Elmiron 3x diet trying to keep low acid and taking Prelief. Then last year I went to univ. Min. and they did a different injection (sorry can't come up with the proper word at moment :( ) so far been relatively good. A flare up is about a day or 2 had one week where it lasted all week. This is since June last year. Any new ideas are helpful. Thanks! Shel shellyns71@yahoo.com

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