IC Disease

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There have been varying statistics for the number of people with Interstitial Cystitis. The last “official” report I found stated that in 1999, the National Institute of Health (NIH) estimated that IC affected approximately 750,000. That was almost 10 years ago, so that number would be significantly higher by now. There has been other research that says that IC Disease may affect as many as 1 out of 5 women and 9% of men.

But then you have a whole group of IC patients who have:

• not yet been diagnosed
• not been diagnosed properly, or
• have symptoms that are mild and they have never sought out treatment.

Even though IC Disease has been recognized for 200 years, and it is appearing to be a common chronic disorder, the condition is not chronically known. One of the reasons why is because there are a lot of different names given to people who suffer from a common set of symptoms. See my post on Illnesses that Have Similar Symptoms to IC Disease.

Urinary Tract Infections (UTI) have similar symptoms to IC Disease.  What is weird in my case is that every year from the time I was a teenager up through my diagnosis of IC Disease, I would have a UTI or bladder infection once or twice a year.  I have actually had so many UTIs that my body tests resistant to all antibiotics that are used to treat UTIs. Once I was diagnosed and treated for IC, I have never had another UTI since.  There have been times where I thought a UTI was starting but it was my IC symptoms.

UTIs are very common.  In fact, they are so common that a UTI is the second most common type of infection in the body. One in five women will develop a Urinary Tract Infection at least one time during her life.

The cause of UTIs are known. Urine is usually sterile but there are times an infection occurs when tiny organisms, usually bacteria from the digestive tract, cling to the opening of the urethra and begin to multiply. The urethra is the tube that carries urine from the bladder to outside the body. Most infections arise from one type of bacteria, Escherichia coli (E. coli), which normally lives in the colon. If a UTI is not treated, the bacteria will spread to the kidneys and a kidney infection is the result.

Many women suffer from frequent UTIs. Nearly 20 percent of women who have a UTI will have another, and 30 percent of those will have yet another. Of the last group, 80 percent will have recurrences. The theory behind recurrent UTIs is that for these women, the bacteria tends to attach itself to the cells lining the urinary tract.

Many of the symptoms of UTIs are very similar to IC Disease. Like I mentioned above, there were times I wasn’t sure if my IC was acting up or if I had a UTI. Here are the main symptoms of a UTI:

• Urinary frequency
• Urinary urgency
• Burning when urinating
• An overall sick feeling - tired, nauseated
• Abdominal cramping and/or pain
• Pressure above the pubic bone
• Despite urgency to urinate, only a small amount of urine is passed
• Cloudy, bloody urine

All of these are symptoms of IC Disease.  That is why when someone asks me what IC feels like, I tell them it is like having a UTI 24 hours a day, 7 days a week.

A UTI is diagnosed by having a urine specimen tested for bacteria.  If bacteria is present, antibiotics are prescribed.  It is important to take the entire course of antibiotics even after feeling better because the infection can return.

Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands), which should only be located inside the uterus, is found elsewhere in the body. Endometriosis can be found anywhere in the pelvic region or cavity: the ovaries, the fallopian tubes, the pelvic sidewall, cesarean-section scars, laparoscopy scars, and on the bladder, bowel, intestines, colon, appendix, and rectum. There have been rare cases of endometriosis being found inside the vagina, inside the bladder, on the skin and in the lungs, spine and brain.

The most common symptom associated with endometriosis is pain in the pelvic region. The pain often coincides with the woman’s menstrual cycle but she can experience pain at other times of the month as well. The pain can be so severe for some women that they are debilitated and are unable to function at a normal level.

Approximately 30% - 40% of women with endometriosis are unable to get pregnant. Besides pelvic pain, other symptoms of endometriosis include:

• diarrhea or constipation
• abdominal bloating
• fatigue
• heavy or irregular bleeding

Pain:

• before/during/after menstruation

• during ovulation

• in the bowel during menstruation

• when passing urine

• during or after sexual intercourse

• in the lower back region

The cause of endometriosis is unknown. Many of the symptoms fit that of IC Disease.

This is a great video to watch on incontinence and it debunks many of the myths out there surrounding this often embarrassing symptom. I know from personal experience that incontinence is common among women with IC Disease but up to 50% of all women experience incontinence at least once a month.

I always assumed that incontinence was something that just elderly women suffered from- until it started happening to me. I started having problems with incontinence shortly before my IC diagnosis. Incontinence affects approximately 17% of women who have had vaginal deliveries and women who are obese are at a greater risk of having incontinence.

The most important thing to know is that you don’t have to suffer in silence.  You need to talk about your incontinence issues with your physician because there is help available.

Vulvodynia is a chronic disorder that, described by the International Society for the Study of Vulvovaginal Disease as “chronic vulvar discomfort or pain, characterized by burning, stinging, irritation or rawness of the female genitalia.” The name vulvodynia describes the main symptom of the illness - “pain of the vulva”.

Like Interstitial Cystitis, the cause of vulvodynia is unknown and there is no cure. The theory is that it may be caused by:

• an allergic response to environmental irritants

• high levels of oxalate crystals in the urine

• an injury or irritation of the nerves that supply and receive input from the vulva

• a localized hypersensitivity to yeast

• spasm or irritation of the pelvic floor muscles

The symptoms of vulvodynia often vary among women with the condition. The main symptoms involve burning sensations and some women describe their pain as a stinging, irritation or a rawness. Symptoms can wax and wane. There are two subsets of vulvodynia known as Dysesthetic Vulvodynia and Vulvar Vestibulitis Syndrome.

Dysesthetic vulvodynia
Women who have this type of vulvodynia have pain that is throughout the vulvar region. Other areas affected include the labia, clitoris, perineum and the inner thighs. The pain may be constant or intermittent and is not necessarily initiated by touch or pressure to the vulva. The vulvar tissue may appear inflamed, but in most cases there are no visible findings.

Vulvar Vestibulitis Syndrome (VVS)
Women who have this form of vulvodynia have pain when touch or pressure is applied to the area surrounding the opening of the vagina. Women may experience pain with intercourse, tampon insertion, gynecologic exam, bicycle riding, horseback riding, motorcycle riding and wearing tight clothing such as jeans. Most often, the vestibule of women with VVS is inflamed and red.

Because of  the pain and burning felt in the vaginal area and the pelvic region, this is why women may be diagnosed with vulvodynia when indeed they have IC Disease.

Thank God times are changing for IC patients and the illness is starting to be more understood.  But even though advances have been made, there are still a lot of women being misdiagnosed by physicians due to their lack of knowledge on IC Disease.  Lack of knowledge isn’t the only reason that IC Disease may be misdiagnosed.   It can be difficult at times to correctly diagnose because IC resembles some other conditions that have similar symptoms. 

This week I will be breaking down each of the illnesses in detail I have listed below that resemble symptoms of IC Disease.

• Vulvodynia
• Endometriosis
• Urinary Tract Infection (UTI)
• Overactive Bladder
• Cervicitis

About a month ago my son started riding his bike without training wheels so he naturally wants to ride further than in our driveway.  I thought the exercise would do me some good so I went and bought a bike and we started riding in a new development behind our house that has very little traffic. 

I surprised myself by actually being able to ride after so many years of not riding a bike.  I guess it’s true you never forget!  I also have CFS & Fibromyalgia and typically exercise sends me to bed for a day or more.  I have been having a positive experience until last night.  Late last night I started having severe burning pain in my vagina and on the outside of it.  It hurt really bad and I’m sure it’s coming from the bike riding.  I wonder sometimes if I don’t have vulvodynia as well with my IC Disease.  It is common for women with IC to have vulvodynia as well.

Today the pain is not as bad but I still have an achy feeling down there.  Last night it was a deep, hot burning type of feeling - like someone was holding a match or lighter down there.  Ouch! 

With chronic illnesses like IC Disease that are hard to understand at both the patient and medical professional level, it is hard to know what methods are really going to work and which ones will do more harm than good.

I had read a good while ago an article about one doctor, Dr, Walt Stoll, who has a different viewpoint on treating IC Disease than a lot of other doctors.  I had written about him on my other website. 

Dr. Stoll believes that holistic medical practitioners feel that they know what causes IC Disease. He says that “mainstream” doctors will not tell their patients about the holistic approach to cure IC because the doctors and hospitals will not make money off of this procedure.

Want to know what Dr. Stoll thinks is the cause of IC Disease?  Click below to read my complete article on his theories!  It’s very interesting! 

A Physician’s Take On Interstitial Cystitis

Interstitial Cystitis can be an illness that can be hard to research for new patients because there are not an extreme amount of resources available on the Internet.  Through my own personal research, I have found some different sites that have been a great means of support and a powerful resource for the latest and greatest information available on Interstitial Cystitis.   This list comes from my other website, Fighting Fatigue, where I have a Resources page. 

An Angry Bladder - Life with Interstitial Cystitis

Fighting Fatigue

IC Disease

IC Network

IC Underground

Interstitial Cystitis Association

The Body Chronic

The Vagina Dialogues

• Diagnosis & Other Helpful Tools:

Diagnostic Criteria for Interstitial Cystitis

How to Cope with Interstitial Cystitis Flares

IC Cookbook

IC Fact Sheet

IC Patient Handbook

IC Sexuality Guide

Men With IC

Self Help Strategies for IC Patients

Stories From Patients: Living With Interstitial Cystitis