Question of the Week Results

August 11 - August 17, 2008

1. What single therapy has best helped you to control your IC symptoms:

Diet modification (75)	41%

Oral medications (64)	35%

Bladder instillations (29)	16%

Surgical procedures (7)	4%

Dietary Supplements (4)	2%

Other (4)	2%

August 4 - August 10, 2008

1. Does your IC healthcare provider acknowledge and understand the connection between IC and related conditions such as fibromyalgia, irritable bowel syndrome, etc.?

Yes (75)	47%

No (55)	35%

I do not have any related conditions (29)	18%

July 28 - August 3, 2008

1. If you were diagnosed with IC by a medical professional, how many did you see for your symptoms prior to obtaining a diagnosis of IC?

1 to 3 (155)	52%

4 to 6 (94)	32%

7 to 9 (24)	8%

10 or more (24)	8%

July 21 - July 27, 2008

1. When seeking a diagnosis for your IC, did a medical professional ever tell you that your symptoms were all in your head (psychological)?

Yes (136)	51%

No (131)	49%

July 14 - July 20, 2008

1. Do you consider your IC symptoms to be:

Mild (39)	9%

Moderate (67)	16%

Severe (109)	26%

A mix of the above, with intermittent flare-ups (212)	50%

July 7 - July 13, 2008

1. Do you think that it is important for people with IC to participate in IC research studies?

Yes (167)	92%

No (3)	2%

Not sure (11)	6%

June 30 - July 6, 2008

1. How were you diagnosed with IC?

Cystoscopy with hydrodistention under general anesthesia (162)	48%

In-office cystoscopy (33)	10%

Potassium chloride sensitivity test (KCl test) (44)	13%

Diagnosis based on symptoms only (50)	15%

I have not been formally diagnosed with IC (49)	14%

June 23 - June 29, 2008

1. Would you describe your IC symptoms as:

Pain only (48)	10%

Urinary frequency and urgency only (59)	12%

Pain, frequency, and urgency (193)	39%

Pain, frequency, and urgency accompanying other chronic conditions such as irritable bowel syndrome, fibromyalgia, etc. (187)	38%

None of the above (3)	1%

June 16 - June 22, 2008

1. Where did you first hear of the term “interstitial cystitis”?

Healthcare professional (202)	58%

Online research of your symptoms (78)	23%

Friend or family (38)	11%

Media (28)	8%

June 9 - June 15, 2008

1. Do you have any of the other chronic conditions that are thought to be related to IC, such as irritable bowel syndrome, fibromyalgia, vulvodynia, chronic fatigue syndrome, etc?

Yes (254)	86%

No (41)	14%

June 2 - June 8, 2008

1. Do you regularly use any of the following to help to control your IC symptoms (not including the IC diet):

Natural supplements (23)	15%

Vitamins and minerals (15)	10%

Massage therapy, acupuncture, or other body work (18)	12%

Other alternative or complementary healthcare practices (13)	9%

No, I do not use any of the above (82)	54%

May 26 - June 1, 2008

1. What do you think caused your IC?

Chronic urinary tract infections (74)	26%

Trauma or injury to the pelvic region (22)	8%

Pelvic/abdominal/gynecological surgery (26)	9%

Giving birth (15)	5%

Environmental or toxic exposure (10)	4%

Systemic condition already in place, such as an autoimmune, neurological, etc. (41)	14%

Inherited or genetic (16)	6%

Other (8)	3%

Not sure (71)	25%

May 19 - May 25, 2008

1. Did you develop symptoms of IC:

During childhood (28)	6%

During adolescence (38)	8%

In your 20s (142)	29%

In your 30s (91)	19%

In your 40s (84)	17%

In your 50s (65)	13%

In your 60s (33)	7%

In your 70s (7)	1%

At age 80 or above (1)	0%

May 12 - May 18, 2008

1. What is most important to you:

Finding better treatments for IC (52)	26%

Finding out the cause or causes of IC (17)	8%

Finding a cure for IC (93)	46%

Educating the medical community about IC (11)	6%

Connecting the dots between IC and related conditions (15)	8%

Meeting others who also have IC (12)	6%

May 5 - May 11, 2008

1. If a new treatment were to be investigated for IC, would you rather it be:

An oral medication (198)	78%

A bladder instillation (13)	5%

A internal neuromodulation device that uses electric stimulation (7)	3%

An external (non-surgical) neuromodulation device that uses electric stimulation (14)	5%

A surgical procedure (19)	7%

Other (4)	2%

April 28 - May 4, 2008

1. If you follow the IC diet, which of the following categories causes you the most difficulties:

Coffee, tea, caffeinated beverages (76)	34%

Juices such as orange juice or cranberry juice (54)	24%

Anything containing vinegar or lemon (17)	8%

Tomatoes (23)	10%

Carbonated beverages (25)	11%

Preservatives, additives, or chemicals such as MSG (27)	12%

April 21 - April 27, 2008

1. Who diagnosed you with IC?

urologist (242)	58%

gynecologist (83)	20%

urogynecologist (38)	9%

general practitioner (9)	2%

other medical professional (6)	1%

not officially diagnosed (42)	10%

April 14 - April 20, 2008

1. Has living with IC caused you to feel:

Depressed (19)	6%

Anxious (9)	3%

Isolated (5)	2%

Fearful about going out or being in social situations (6)	2%

Angry (18)	6%

Some of the above (101)	34%

All of the above (130)	43%

None of the above (13)	4%

April 7 - April 13, 2008

1. What support tool do you rely upon the most?

Local support group meetings (10)	11%

Family and friends (51)	57%

Involvement in a nonprofit organization, such as the ICA (9)	10%

Pets (19)	21%