Interstitial Cystitis

Here’s a free collection of resources about interstitial cystitis (also known as painful bladder syndrome)- Interstitial cystitis blogs, videos, support groups, first-hand experiences and advice from people who have interstitial cystitis, etc.

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Interstitial Cystitis Blogs

Here’s a list of interstitial cystitis blogs- blogs written by people with interstitial cystitis, or about interstitial cystitis.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Interstitial Cystitis Today	ic-today.com/blog	2017
Voices of Hope Blog	hichelp.org	2017
IC Network	ic-network.com	2017
Interstitial Cystitis Diet Confident Choices	interstitial-cystitis-diet.blogspot.com	2017
How IC it	how-ic-it.blogspot.com	2017
Interstitial Cystitis Support	icpbssupport.com	2016
Interstitial Cystitis: IC Gal’s Journey	iccatherine.blogspot.com	2016

Interstitial Cystitis Support Groups

Interstitial Cystitis Support Groups On Facebook

Other Interstitial Cystitis Support Groups And Forums

Daily Strength Interstitial Cystitis Support Group (216 members, 1,838 posts)

Interstitial Cystitis Survey

We’re surveying people about their experiences with interstitial cystitis. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)

**Click here to share your experience with interstitial cystitis**

Interstitial Cystitis Symptoms

What symptoms have you experienced?

Frequency, urgency, severe pain, incontinence, unable to void, limited mobility without pain. (Kelsie., 18 years old)
Abdominal pain, severe vulva pain, back pain, pain upon urination, frequency, fatigue. (Emily W., 19 years old)
Severe pain before, during & after passing urine, urgency, severe lower abdominal bloating, repeated UTIs, incontinence on 1 occasion due to not getting to a toilet in time, disrupted sleep. (Jane D., 19 years old)
Severe pain in the bladder. Not only when urinating but also either holding water or an empty bladder it’s crazy! Also struggling to hold it in. (Charley, 21 years old)
Frequency, painful urination, painful sex, retention, incontinence. (Hannah, 21 years old)
Extreme pain from flares on a regular basis. (at least 3 times per week) and urgency to wee but unable to do so. (Holly., 21 years old)
Burning, kidney pain, cystitis, kidney infection, frequency, reactions, painful sex. (Rowan, 21 years old)
pain, frequency and urgency. (Zackary, 21 years old)
Excruciating pain in the bladder and urethra, burning, pressure, frequency lower back pain. (Alexxys, 22 years old)
Abdominal and lumbar Pain, frequency, urgency, burning. (Amanda., 22 years old)
Pain, spasms, frequency, urgency, incontinence, bleeding. (Grace, 22 years old)
Mainly Pelvic pain, burning with urination, frequency. (Naomi., 22 years old)
burning, swelling, awful urinating problems, pressure, frequency, bloated. (Zac M., 22 years old)
Sever pain and frequent urination. (Katlynn l., 23 years old)
Frequency, urgency, low back pain, low abdomen pain, urethra pain and spasms, sharp pain in urethra, pain going down my legs. (Faith S., 24 years old)
Bleeding, severe pain, inflammation, stomach swelling, constant urination. (Georgina., 24 years old)
Frequency, urgency, sensitivity. (Jaimee, 24 years old)
Frequency, urgency, painful intercourse, chronic pelvic pain, nocturia. (April R., 25 years old)
Pain, urgency, and frequency. (Brittany, 25 years old)
Burning, frequency, urethral pain, pelvic floor dysfunction, stabbing pain in bladder, nausea, vomiting. (Emily, 25 years old)
Burning sensation during urination. Pelvic/abdominal pain. Abdominal swelling. (Jessica B., 25 years old)
Urethral Burning, Pelvic Floor Dysfunction, urgency, frequency, abdominal pain. (Meredith, 25 years old)
Urgency, frequency, IBS, PFD, dryness, lower back pain, bloating, burning pain. (Philomena K., 25 years old)
Pressure, increased need to urinate and painful sex. (Jennifer, 26 years old)
Urgency, painful urination, pelvic pressure. (Salwa., 26 years old)
Burning during urination, frequent urination, bladder pain and spasms, pressure, pelvic pain, painful intercourse. (Christina., 27 years old)
Pain that feels like hot needles being rolled over my bladder, lower abdominal pain, increased sinuses, painful urination, painful sex, trouble urinating, nausea. (Laney, 27 years old)
Lower left quadrant pain, burning, pressure, urgency, frequency, exhaustion. (Samantha B., 27 years old)
Bladder pain, bladder pressure, cramps. (Sharnti., 27 years old)
Frequency, urethral pain. (Summer., 27 years old)
Burning bladder, frequent urination. (Andrea, 28 years old)
Pain and burning every time—before and after. I have pressure all the time. I can’t walk around. Baths make it worse. I take azo, but it doesn’t help much anymore the last flare up I’ve had it’s been six months four docs and no help and wasted money. (Brandy D., 28 years old)
Frequent urination, urgency, burning, pain in nerves around tailbone and bladder cramps. Extreme burning, small amounts of urine output. (Christine, 28 years old)
Everything. Pain, burning, frequency, urgency, nocturia, I’m sure I’m missing something. (Jessica G., 28 years old)
“Daily pain about a 3 on a good day, urinary frequency, urgency, painful burning ruination, sharp pain within the pelvic floor and even in the penis.
Bad days or a flasher are different but for sure more intense. (Jon M., 28 years old)”
Bladder swelling/pain, hunners ulcers, frequency, urgency, pain with urination, pain with sex. (Jordan, 28 years old)
Pain, bloating, frequent urination. (Madison, 28 years old)
Severe pain, frequency, UTI-like symptoms. (Ashley D., 29 years old)
Flares, flares after intercourse, flares triggered by caffeine or alcohol, pain with urination, frequent urination, bladder pain, frequent UTIs. (Jessica F., 29 years old)
Stomach pain, back pain, pain before after and during urination, no motivation, depression. (Katelyn M., 29 years old)
Urgency, burning after urination. Painful sex. (Brandi, 30 years old)
Pressure in pelvic area always. (Jen, 30 years old)
Early childhood 4-5. Symptoms didn’t get severe till mid 20’s. (Jen, 30 years old)
Burning, frequency, urgency, painful bladder. (Jessica, 30 years old)
Pain, pressure, burning, frequency, urgency. (Jessica., 30 years old)
Frequency, pressure, urgency, pelvic numbness and back pain. (Rachel., 30 years old)
Pain, bloating, frequency and urgency. (Samantha., 30 years old)
Frequency, urgency, retention, pain, pressure, aches, weak flow, unable to empty bladder fully. (Susana, 30 years old)
Sharp pain, frequent urinating, cramps, nausea. (Tiffanie, 30 years old)
Burning when urinating, urgency, cramping bladder, bladder spasms, pelvic floor issues, back pain. (Adriane T., 31 years old)
Burning, cramping, spasms. (As9, 31 years old)
Frequency, urgency, retention, bloating, cramping, nausea, lower back pain, pelvic pain, painful sex. Feels like acid was poured inside my bladder at times. (Ashley P., 31 years old)
Pain and pressure on bladder, difficulty urinating, painful intercourse. (Emily, 31 years old)
Frequency, Retention, Nocturia, Vulvodynia, flank pain, stomach bloating, increased pain before and during and after period, back and neck and shoulder spasms, upper leg pain, nausea, allergies to food after diagnosis, fatigue, insomnia due to pain. (Jess, 31 years old)
Burning, urgency, frequency, perineum pain, urethra pain, painful evacuation of bladder, bladder pain, loss of appetite. (Jocee, 31 years old)
Frequent urination, stomach cramping, kidney pain, inability to pass urine, muscle spasms, fatigue, food/drink sensitivity, digestive upset, worsening symptoms in hot/humid weather. (Julia, 31 years old)
Painful urination. Burning with urination. Bladder spasms. Bladder cramps. Pain bending over. Overactive bladder nerve signals. UTI like symptoms with no infection. Blood in urine. Bladder negative reactions to acidic foods, caffeine, alcohol. Overly concentrated urine if I don’t drink enough water in one day. When UTI happen, my symptoms go from zero to as if I had a UTI for over a month in 24 hours. Bleeding from the urethra. Constant urge to urinate especially after drinking liquids. (Savanah, 31 years old)
Pain, urgency and frequency. (Tanya, 31 years old)
Frequency and urgency. (N/A, 31 years old)
Burning, bloating, spasms, pressure, tightness. (Stacy H., 32 years old)
Frequency, urgency, horrible pain, nausea. (Alexis, 32 years old)
Horrible pain. (Krista, 32 years old)
Pressure kidney infection like symptoms pain, nausea, urgency. (Lorraine., 32 years old)
Frequent UTIs. (Samantha J., 32 years old)
Pain, frequency, urine coming in spurts n shoots out everywhere due to scar tissue in urethra, burning, white bits in urine, dark color or see through, no in-between, strong odor. (Toni S., 32 years old)
Persistent urgency. (24/7) and frequency. (Kate., 33 years old)
Bladder spasms, extremely painful urination, severe fatigue, major depression, achiness. (Katina, 33 years old)
Severe pain, frequency, blood in urine, incontinence. (Lizzy R., 33 years old)
Urgency, pain, burning, sex hurts. (Mikki S., 33 years old)
Bladder pain/burning. (Sophie H., 33 years old)
Extreme burning and bladder pain. (Sophie H., 33 years old)
Frequency, bladder pain, vulva discomfort, constant UTI symptoms. (Kate B., 34 years old)
Pain in abdominal area. Pain during sex. Incontinence. (Lorraine, 34 years old)
Severe abdominal pain, fatigue, migraines, depression and Anxiety. (Michelle., 34 years old)
Burning, stabbing pain, nausea, fatigue, depression. (Amanda B., 35 years old)
Frequency, urgency, bloating, horrible nerve pain. (Christina., 35 years old)
Painful urination, abdominal cramping, painful full bladder, everything about going to the bathroom. (Jillian, 35 years old)
Pain bladder and back, nausea, vomiting, diarrhea, pants wetting, constipation, vaginal pain, sometimes constant cramping. (Laura, 35 years old)
Painful & frequent voids, urethra pain, bloating, belly button pain, vaginal pain, back pain. (Melissa, 35 years old)
Pain burning back pain pressure frequent urination changed my sex life in a very negative way. Everything has changed its hard to be active exercise daily routine all gets changed. (Mlm80, 36 years old)
Pain, burning, pressure, frequency, painful urination. (Sherri, 36 years old)
Burning, frequency, bleeding, extreme pain. (Tayna, 36 years old)
Pelvic Pain, urgency, burning sensation in bladder, painful sex, painful urination, trouble urinating. (Christina N., 37 years old)
Stabbing pain, frequent urination, burning while urinating, no sleep due to pain and frequent urination. (Nikole, 37 years old)
Frequent urination, constant pain, vulvodynia, urethra spasms. (Liz., 38 years old)
Pain, pressure, fatigue, dry mouth, sores in tongue, frequent urination, insomnia. (Renee, 38 years old)
Frequency, urgency, urethral spasms, tender bladder, pain. (Staci, 38 years old)
Mid 20s. (Yvette E., 38 years old)
Pelvic/vaginal pain and pressure, urge incontinence & stress incontinence, frequent urination. (Amy P., 39 years old)
Pain in bladder. (Christina R., 39 years old)
Urethral Pain, Burning, Bladder feels over full. Pressure. Pelvic ache I have severe fatigue. I have been diagnosed with Sjogren’s syndrome, IBS, Hypothyroidism, and Trigeminal Neuralgia as well. (Christine, 39 years old)
Painful bladder, sharp pains if I try to hold it too long, feels full when it’s not. (Denise B., 39 years old)
Urgency, burning in my urethra and air in my urethra. (Elizabeth, 39 years old)
Frequency, urgency, burning, painful sex, stabbing urethral pain, pelvic pain, hesitation, difficulty keeping urine stream going, difficulty emptying bladder, stabbing pain if I don’t empty bladder fully, frequent UTIs, flank pain during bad flares. Stabbing urethral pain if I don’t hydrate enough. (Jaime S., 39 years old)
Severe pain in bladder, pelvic floor & urethra. (Kristen S., 39 years old)
Pelvic pain, kidney pain, urinary frequency. (Lee-Anne B., 39 years old)
Pain after urinating, frequency. (Marie D., 39 years old)
Bladder Pain, burning, urgency, fatigue, lower back pain, pain during/after sex. (N/A, 39 years old)
Heavy, searing, stabbing type. (Alissa., 40 years old)
Urgency, frequency, severe pain, spasms, and inability to hold a lot of urine at one time. (Jamie, 40 years old)
inflamed bladder, frequent visit to the bathroom, pain in pelvic area and mild lower back pain. (Joy G., 40 years old)
“Constantly going to the toilet, Restless legs. Can’t sit still have to keep moving/walking. Can’t sleep. (Kylie H., 40 years old)”
Burning urination, pelvic pain, soreness, lower back pain, vaginal pain, abdominal bloating, tenderness, fatigue, pain while sitting, pain from clothes being tight on my stomach, pain after eating acidic foods, vitamin supplements, constipation, pelvic floor dysfunction. (Lyssa., 40 years old)
Pressure, urgency, going every hour, loss of sex drive. (Sarah, 40 years old)
Pain. (N/A, 40 years old)
Pelvic pain, bladder pain, burning, discomfort. back pain urethra pain, lose control of bladder, back pain. (Amy O., 41 years old)
Burning, frequent urination, tight abdominal muscles, moderate pain to severe pain. (Carrie O., 41 years old)
In a flare up, swollen stomach, hard to start peeing. (Layla J., 41 years old)
Urethral soreness and burning, pain in urethra and vaginal area. Lower back pain, pain in lower abdomen, tops of legs when bad flare. Frequency. Generally, very sore and uncomfortable in the lower area. Sharp stabbing pains in the urethral area as well. (Vicki C., 41 years old)
urgency, chronic pain, pain during sex, walking a good distance, and bending over. (John R., 42 years old)
Urgency, Burning. (Michelle, 42 years old)
Brain fog, fevers, cold sweats, clammy skin, swollen tummy, backache, fatigue, burning whilst urinating, dribbling whilst urinating, flaring after sex. (Rebecca W., 42 years old)
Bladder pain, burning, urgency. (Stephany, 42 years old)
For many, many years I had frequency and urgency to pee but the last few years it’s been accompanied by some pain. A few days a month it was really bad but then the last year and a half I started having blood in my urine and a lot more pain. The pain was in my bladder and included a painful pushing sensation after urinating. (I’ve since been told its bladder spasms) Now the pain has moved down my urethra as well. There’s always a constant burning ache that at times flares up to unbelievable proportions that are disabling. (Tammy, 42 years old)
Bladder pain. (Anna, 43 years old)
urinary incontinence & retention, pain, urgency, frequency, depression. (Liz K., 43 years old)
Burning, pain in pelvic area, cramps. (Michelle F., 43 years old)
Loin pain, frequency. (70+) bleeding. (Michelle l., 43 years old)
Frequency pain burning bloating pressure. (Tricia B., 43 years old)
Symptoms you’d generally get with a urine or kidney infection. The urge to pee but having nothing to pee. Lots of general aching from my chest down to my groin and back pain. (Claire F., 44 years old)
Pain, frequent urination, urinary tract infections, blood in urine, kidney pain. (Robynn, 44 years old)
Extreme pain, incontinence, urgency, frequency, back pain, leaking, urine retention, blood in urine, right side pelvic pain. (N/A, 44 years old)
Pelvic pain, frequent bathroom trips whether going or not, leakage, painful intimacy and bleeding after. (Dena, 45 years old)
frequent UTI’s, spasms, burning, urgency, frequency. (Heather N., 45 years old)
Severe pain in lower abdomen, burning, bleeding, urgency, lower back pain, kidney pain, nausea, and the feeling of my bladder and kidneys are on fire. (Jennifer P., 45 years old)
“Bladder pain, severe frequency at night, pressure, feels like I need to go when bladder is empty. (Lisa, 45 years old)”
Urgency, urethral spasms, pelvic pain. (Ruby B., 45 years old)
Pain, urgency, spasms. (Amy, 46 years old)
Pain, frequency, spasms. (Heather., 46 years old)
constant burning pain, frequency when flaring. flaring to a ton of medications. foods and supplements. IBS. Bladder swelling and soreness. (Kris, 46 years old)
Chronic pain, frequency, sensitivity. (Lauren, 46 years old)
Bladder pain, urinary frequency, soreness in vulva, pain in R pelvis, flank and hip. (Leanne H., 46 years old)
Urethra burning and pain, bladder pressure, urgency, frequency, bloating, feel overall sick. (Michelle C., 46 years old)
Frequent bladder flares, lower back pain, painful urination, front stomach/bladder pain, sharp urethra pain, blood in urine, IBS symptoms. (SAW, 46 years old)
Peeing constantly, burning of lower tummy and tops thighs, pain lower abdomen, bad back lower, doubled up in pain sometimes, entrance to hole very sore/tender, pee really stingy/burnt. (Cheryl B., 47 years old)
Pain, burning, spasms, frequency, pressure, urgency, stress incontinence, etc. (Cheryl E., 47 years old)
Frequency, burning, pain while urinating. Pain in my bladder and pelvic area, right side flank and abdominal pain. (Kimberly, 47 years old)
Constant pain & urgency. Above average number of UTIs. Depression. (Melissa, 47 years old)
Chronic urethra pain, pressure, urgency, spasms, peeing 40-60 times a day, flares are the worst. (Charity A., 48 years old)
Burning, radiating pain, sharp, stabbing, shooting pains, all of these get worse when I urinate. (Kristie, 48 years old)
Burning bladder and sometimes spasms. (Mary-Ann, 48 years old)
Ardor. (Diana F., 49 years old)
Pain, irritation, spasms, urgency. (Lorrie, 49 years old)
IC belly, severe stomach, side, back, flank, thigh, legs pain. Bladder spams that honestly feel like severe labor pains! Unbearable pain! In tears. My vagina hurts. Pelvic floor pain. Fatigued. (Tia, 49 years old)
Pain bloating frequent urination. (Jeannine, 50 years old)
Frequency, burning, stinging, pain and pressure. (Jennifer J., 50 years old)
Pain, Burning, Frequency, PFD, tiredness, depression. (Natalie A., 50 years old)
Kidney pain, frequent urination, leakage, pain when bladder is perceived full. (Sonia, 50 years old)
Urgency, frequency, pain, retention, hesitancy, painful urination, painful ejaculation. (Darren, 51 years old)
Pain frequency blood in urine getting up at night to pee 4 to 6 during night times not being able to pee never having a sleep in again. (Debbie., 51 years old)
About 2 years ago I started having bouts of what I thought were UTI’s until one time it was really bad! Nausea, cramps, I could feel something in the center of my lower abdomen was really swollen and hurt when I bent down or turned to the side. I had burning, incontinence, feeling like I needed to pee constantly, urgency, frequency and I thought it was just female menopausal symptoms. Nope, IC. I have had 3 instills, I take a probiotic like RePhresh and if I stay away from certain foods, I have a better day. (Mari, 51 years old)
Frequency, pain when urinating, weeing lots at night with lack of sleep and pelvic pain. (Teresa R., 51 years old)
Regular toileting, not emptying properly, back pain, leg pain, bloating. (Ellen J., 52 years old)
over active bladder with pain, anxiety. (Diane, 52 years old)
Thigh pain, lower abdominal pain, back pain, frequency. (Ellen J., 52 years old)
Bladder urgency/frequency, stabbing bladder pain, sometimes bowel urgency. (Laine D., 52 years old)
Urethral cramps, burning, painful stomach pains, lower back pain, pains down thighs, urgency for loo, sickness, inability to urinate sometimes, etc. (Margaret H., 52 years old)
Burning, urgency, aching. Shooting pain. (Sue, 52 years old)
Urgency, burning. Sensitivity to vibration i.e. car. (Sue, 52 years old)
Spasms, burning, stinging, frequency, cramping, pelvic pain, back pain. (Barbara., 54 years old)
Pelvic, back and abdominal pain. Frequency to urinate, painful bladder, pins and needles in bladder, sharp pain in urethra and vagina, feeling of things falling out. (Carole P., 54 years old)
Burning, frequency, low pelvic pain, blood in urine, urgency, pressure. (Cindy, 54 years old)
Frequency, urgency, incontinence, pain, pelvic floor disfunction, getting up at night to pee, infections, drug resistant infection, feeling all symptoms of infection but not having one. (Kathleen S., 54 years old)
Sharp stabbing pain, pressure. (Kelley, 54 years old)
Burning, urgency, pain, spasms, bloating. (Teresa E., 54 years old)
Going to the loo all the time, leakages all the time, lack of sleep. (Dawn H., 55 years old)
Acute Pelvic pain and discomfort. Urine frequency and bladder pressure. (Veronica H., 55 years old)
Urgency, Frequency, pain, pressure, spasms, the feel of knives cutting my bladder and vagina. Swelling of my Belly. (Katrina W., 57 years old)
Pain, frequent bathroom trips, painful sex. (Kim F., 57 years old)
urgency, frequency, nocturnia, depression. (N/A, 57 years old)
Frequency, excruciating pain, urgency. (Karen, 58 years old)
Burning, bladder spasms, urgency, pain. (Karen, 58 years old)
Omg Burning. Before. in after, pressure chills but the burning is all day 🙁 (. (Orlanda D., 58 years old)
Cramps, burning, aching, Constipation, vomiting. (Rosie M., 58 years old)
IC severe pain, urgency, retention! (Boria R., 59 years old)
Flare ups consists of pressure after going to bathroom like you never went. (Donna, 59 years old)
urgency, extreme pain in the bladder, total exhaustion, depression. (Lisa, 59 years old)
Extreme bladder, back, liver spleen stomach muscle, kidney and thigh pain. Having to pee every 20 min. Depression and anxiety. Urgency to pee. (Micki K., 59 years old)
Constant feeling of needing to wee and pressure. (Elaine Y., 60 years old)
bladder spasms/ pain, urethral pain, rectal pain, burning, frequency, blood in urine, pelvic floor dysfunction. (Deborah M., 62 years old)
Burning, frequency, blood, pain. (Patricia M., 63 years old)
burning bad spasms pain pressure. (Peggy, 63 years old)
Pain. Ruptured bladder during cystoscopy and hydrodistension. Bleeding. More pain. (Diane H., 64 years old)
Pain & burning. (Kathy O., 64 years old)
Pressure. Pain, stinging, frequency. (Linda, 64 years old)
Painful urination, burning, muscle spasms, frequency. (Janeen, 65 years old)
Pain. Urgency. Frequency. (Darleen O., 67 years old)
Pain and burning. (Linda, 67 years old)
UTI 10 a year for 30 years then E. coli. (Kathleen R., 69 years old)
“Urgency, frequency, Pelvic pain, Spasms, Thrushy feeling, Burning, Swollen soreness, Insides feel very heavy. Sharp pain, pain sometimes at the beginning of weeing and sometimes at end, or both. Desperate to go but unable to go! (Wendy P., 70 years old)”
Frequency, pain, burning, hunner lesions, blood in urine, constipation. Pressure. Itching. (Mary B., 73 years old)
Burning leading to pain. (Virginia N., 75 years old)
constant burning, urinating often. (Maude L., 76 years old)

Interstitial Cystitis Facts

What are some interesting facts you’ve learned about interstitial cystitis?

So much, it’s link with sex, how trigger points work, how closely related it is with IBS, pelvic floor dysfunction and fibromyalgia. (Kelsie., 18 years old)
It’s been interesting to learn about the IC diet and the all the different foods that can trigger people. I also had never heard of IC before my diagnosis but have now learned it could be related to other autoimmune diseases that I have. (Emily W., 19 years old)
More common in women than men. (Jane D., 19 years old)
It really depends on your diet. Things you eat, and drink can help massively! Also receiving hospital treatment helps to but it makes you feel better when you help yourself. (Charley, 21 years old)
It’s incurable. No one knows what it is or why it’s caused. (Holly., 21 years old)
everyone seems to have a different root cause. (Zackary, 21 years old)
That it’s more common than I thought. (Alexxys, 22 years old)
Everyone is different. There’s no cure for it, just maintenance. (Amanda., 22 years old)
It also affects young people. (Grace, 22 years old)
it’s not curable, I’ve heard that it has to do with your diet, it’s impossible to get rid of this horrible disease. (Zac M., 22 years old)
Aspirin causes massive flare ups. (Katlynn l., 23 years old)
That there’s no cure, not a lot of people know about it, it’s not that common. (Faith S., 24 years old)
Honestly. Doctors don’t know what they’re talking about, I have been suffering 13 years. (Georgina., 24 years old)
Nothing really. (Jaimee, 24 years old)
That stress is the largest flare and effector of symptoms. (April R., 25 years old)
Anything can be a trigger, even water. People are blown away when I tell them I get flares from different types of water. (Brittany, 25 years old)
That it is incurable but sometimes treatable. (Emily, 25 years old)
That there’s no cure at all. (Philomena K., 25 years old)
New to it, but I’ve noticed that certain drinks make things worse. (Jennifer, 26 years old)
A lot more people have it than I thought! (Salwa., 26 years old)
It feels like a really bad, really long UTI. (Christina., 27 years old)
Not a lot of doctors take it seriously and assume I’m after drugs. (Laney, 27 years old)
It’s incurable and triggers are different for everyone. (Sharnti., 27 years old)
How much diet helps. (Summer., 27 years old)
I recently learned a lot of water that’s not supposed to have acid has a lot look up water acid test blew my mind. (Brandy D., 28 years old)
The link to estrogen/hormones, how diet affects the condition. (Christine, 28 years old)
It’s all diet and autoimmune related. (Jessica G., 28 years old)
“It’s not a “”cookie cutter”” disease meaning it’s unique to some degree to each individual.
Also, it’s very rare for many men to have it, and rare for women to even know men can and do get it. (Jon M., 28 years old)”
That it’s potentially an autoimmune disorder. (Jordan, 28 years old)
Food effects your bladder. (Madison, 28 years old)
Symptoms vary for each person, some can use diet to control it. (Ashley D., 29 years old)
An over tight pelvic floor can contribute to IC symptoms. (Jessica F., 29 years old)
That no one has a clue how to fix it. (Katelyn M., 29 years old)
That it can be affected by hormones. (Brandi, 30 years old)
Nerve Damage and lining damage. Also, stress increases the pain. Often people with this are under a lot of stress. (Jen, 30 years old)
Remission does happen, everyone’s symptoms are different. (Rachel., 30 years old)
Food triggers flares. (Samantha., 30 years old)
That it can affect anyone at any age. (Susana, 30 years old)
Diet. (Tiffanie, 30 years old)
Evil twin of endometriosis. (As9, 31 years old)
It’s highly affected by diet. (Emily, 31 years old)
Incurable, can be helped with diet. (Jess, 31 years old)
Symptoms and causes of flares is vastly different for everyone. My personal causes for flares are medication or UTI or citrus. (Jocee, 31 years old)
Its incurable and if you don’t manage it, it will affect every day of your life. I am unable to wear jeans or any non-loose-fitting clothing. Potassium effects the lining of your bladder walls. Heparin and lidocaine help manage the symptoms. Water is the only liquid safe enough to drink. If it gets worse, you need a catheter or pace maker. Its affects your whole life. (Savanah, 31 years old)
It can be affected by good. Sometimes hard to tell the difference between bladder and uterine pain. (Tanya, 31 years old)
May be related to autoimmune disease. (N/A, 31 years old)
No one is the same. Different flare types. Different triggers. (Stacy H., 32 years old)
It’s not just about what you eat; it’s everything you do. (Alexis, 32 years old)
Doctors haven’t a clue. (Lorraine., 32 years old)
That it’s NOT cystitis so myths like cranberry juice don’t work. Drinking water does, food and drink I can and can’t eat what will help. (Toni S., 32 years old)
Diet really helps! I went paleo and felt 90% better! (Kate., 33 years old)
We’re all so different. (Katina, 33 years old)
The possible links to auto-immune disease. (Lizzy R., 33 years old)
That foods can affect it, as can the environment you’re in and stress. (Mikki S., 33 years old)
That diet can help. (Sophie H., 33 years old)
That diet and supplements can improve symptoms. (Sophie H., 33 years old)
That changing one’s diet can improve symptoms, symptoms are worsened by allergens, getting allergy shots and taking antihistamines improve symptoms. (Kate B., 34 years old) It’s more common now than what it was when I was diagnosed. (Amanda B., 35 years old)
It’s more common than anyone would believe. (Christina., 35 years old)
Not sure. (Jillian, 35 years old)
Diet, no doctor understands, opiates don’t work for pain, stress is a no! (Laura, 35 years old)
That it takes multiple tests to rule out other illnesses. Flares are inconsistent, and pain can be different for each flare. (Melissa, 35 years old)
It’s a real thing. That it wasn’t bladder infection UTI its IC. (Mlm80, 36 years old)
That it’s different for everyone. (Sherri, 36 years old)
I have several in my family with it. (Tayna, 36 years old)
What I eat effects symptoms. (Christina N., 37 years old)
Diet helps relieve some pain, herbal teas, there’s no cure, doctors think you’re crazy. (Renee, 38 years old)
Restrictive diet, no cure, different theories of causes of it. (Staci, 38 years old)
Cranberry is evil. (Yvette E., 38 years old)
I’m newly diagnosed, so I’m still learning. I was very surprised at some of the foods that are known to irritate the bladder. (Amy P., 39 years old)
Nothing. (Christina R., 39 years old)
It can be influenced by histamine related foods. Many IC patients have more than one illness i.e. Sjogren’s, IBS. (Christine, 39 years old)
Certain foods to avoid. Stress is a trigger. Flare-ups are a thing. (Denise B., 39 years old)
How food can affect your bladder. (Elizabeth, 39 years old)
I hadn’t known it might be autoimmune or connected to mast cells. (Jaime S., 39 years old)
Everyone has different symptoms. One minute you are great and then the next minute you are in severe pain for unknown reason. (Kristen S., 39 years old)
How much it is misunderstood by doctors. (Lee-Anne B., 39 years old)
Some, like me, hurt the most during and AFTER urinating. Some hurt before. (Marie D., 39 years old)
How it affects more than the bladder. I’m shocked by how few people know about clorpactin treatments. (Alissa., 40 years old)
Just learning which foods are acidic. And learning about acidic and alkaline has been very interesting and very important to the treatment of my disease. Figuring out my triggers has been life-changing. (Jamie, 40 years old)
The amount of acid in foods that can affect IC, how it’s hard to manage pain. Also, how stress can be related to it. The most interesting is that not many know about it or how to treat it. (Joy G., 40 years old)
That not many doctors where I live have a clue about it at all. (Kylie H., 40 years old)
That after having it awhile, your nerves are over sensitized for me it triggered ibs-c, and pelvic floor dysfunction. (Lyssa., 40 years old)
That no one has heard of it and presumes it’s just like normal cystitis. (Sarah, 40 years old)
It is different in everyone. (N/A, 40 years old)
That I haven’t lost my mind. That this is a real disease. (Amy O., 41 years old)
How doctors do nothing for you. (Carrie O., 41 years old)
It’s hard to control. (Layla J., 41 years old)
Not a lot of male’s report this till its way into it. (John R., 42 years old)
How much food affects it. (Michelle, 42 years old)
That embedded infections. (chronic UTI) in the bladder wall could be one cause of IC. (Rebecca W., 42 years old)
Common in middle aged women, has no cure, affected heavily by diet, has probable autoimmune component. (Stephany, 42 years old)
I’ve learned that IC causes the lining of my bladder to be inflamed, bleeding and shedding. I’ve learned that I can’t drink coffee, tea, pop or juice. (or pretty much anything other than water and milk) and I can’t eat any sugar, spicy foods, and processed foods. (still learning what other foods aggravate this) I’ve learned to expect to be useless the few days prior to and the week of menstruation because cramping affects the bladder as well somehow, possibly due to nerves being connected. I’ve learned that many people don’t take bladder issues seriously and that it’s hard to get proper care. (Tammy, 42 years old)
Aloe Vera works. (Anna, 43 years old)
baking soda helps, also Prelief. (Liz K., 43 years old)
Most have a toxic body. Detoxification may help though I haven’t tried it. (Michelle F., 43 years old)
It’s auto immune, possibly deep-seated infection. (Michelle l., 43 years old)
The cause of mine is a non-stretching bladder. (Tricia B., 43 years old)
That everyone has different symptoms. It’s not recognized by many doctors and the specialists are few and far between. (Claire F., 44 years old)
It does not affect two people the same way. Doctors don’t know the cause. Hormones and monthly cycles increase pain levels in many women. (Robynn, 44 years old)
it may be autoimmune disease. (N/A, 44 years old)
everyone is different. (Heather N., 45 years old)
That there isn’t 1 treatment that benefits everyone, because everyone is different. (Jennifer P., 45 years old)
“I had no idea it would be so difficult to treat or that most GPs haven’t heard of it
Just because your urine sample is negative it doesn’t mean you don’t have an infection. (Lisa, 45 years old)”
Connection to IBS. (Ruby B., 45 years old)
It is horrible, and I wouldn’t wish it on anyone. (Amy, 46 years old)
That is co exists with many diseases. (Heather., 46 years old)
that there are so many theories and how different we all are. allergies. autoimmune, pelvic floor dysfunction. ulcers. hormones. IBS and endometriosis are common to run along with I.C. etc… (Kris, 46 years old)
Foods can affect it and cause flare-ups. Also, that there is no definitive cure. (Lauren, 46 years old)
“Diet effects it constantly. Also, good gut health.
Less than 5% have ulcers. Stem cell therapy has a positive remarkable effect. (Leanne H., 46 years old)”
People’s symptoms vary, a lot more people have it then I thought, goes hand in hand with endometriosis. (Michelle C., 46 years old)
Everyone seems to have different degrees of issues. There’s a “spectrum” of problems. Many with IC have autoimmune issues, IBS, food allergies, etc. (SAW, 46 years old)
It can occur at any age. (Cheryl B., 47 years old)
There are multiple causes and multiple treatments. (Cheryl E., 47 years old)
I just learned that there are two kinds classic and non-ulcer. It is a difficult disease to diagnose and treat, I have read several things that my doctors never mentioned. Like IC can be related to autoimmune problems, one can experience pain in other parts of the body due to the nerves in the pelvic region being stressed. I have also learned that most doctors do not understand this disease and either don’t want to treat it or they make a person feel ridiculous when the try to explain the severity of their pain. (Kimberly, 47 years old)
Diet helps. Driving doesn’t help. (Melissa, 47 years old)
Doesn’t go away! (Charity A., 48 years old)
No treatment works for everybody. It’s interesting, yet sad, that some treatments work for some of us but don’t work for others. Some can find different treatments, and some can’t find anything that works. (Kristie, 48 years old)
There is no cure and little help. (Mary-Ann, 48 years old)
Que es una condicion que aun no hay medicamentos que funcionen. (Diana F., 49 years old)
Snore people suffer with this than what I thought. (Lorrie, 49 years old)
The strange flare triggers. Clothing triggers, exercise triggers, stress triggers, chemical/ environmental triggers. (Tia, 49 years old)
Food is related to pain. (Jennifer J., 50 years old)
That most doctors have no idea about IC, and baking soda helps. (Natalie A., 50 years old)
Emotions affect IC. (Sonia, 50 years old)
No cure, following a strict diet nothing acidic to eat that hunners Lesions can get better by them self over time by following a IC diet. (Debbie., 51 years old)
I haven’t learned much as I am also having other issues as far as female organs go and my stomach. I am sort of trying to learn about all my issues. (Mari, 51 years old)
That many doctors don’t know about the condition and you must find out what people suffer with on line. How many people have different symptoms. (Teresa R., 51 years old)
Diet can help, water intake important, when you need to go to the toilet go! Stress affecting severity. (Ellen J., 52 years old)
Acidic foods hurt the bladder, what works for one person might not work for another with IC. (Diane, 52 years old)
Some foods trigger, spicy, citrus & caffeine. (Ellen J., 52 years old)
It mostly affects women and. (therefore?) there hasn’t been significant research into widespread effective treatments. It appears related to many autoimmune and inflammatory disorders that also primarily affect women, and this may be why many healthcare practitioners know little to nothing about it and tend to dismiss it as a valid medical condition. (Laine D., 52 years old)
It’s non-cancerous, they don’t know what causes it. (Margaret H., 52 years old)
Vibration aggravates my bladder wall. (Sue, 52 years old)
The symptoms are different for everyone, foods can be a real problem. (Barbara., 54 years old)
More common than I thought. (Carole P., 54 years old)
Watching what I put in my body. (Cindy, 54 years old)
I cannot eat some of things I used too. (Kathleen S., 54 years old)
No one really has a cure. (Kelley, 54 years old)
Your diet can change your symptoms. (Dawn H., 55 years old)
Food and drink can cause a flare. I am better when drinking bottled spring water. (maybe something in tap water that irritates my bladder) (Veronica H., 55 years old)
That there are treatments than can relieve you for a while. There are supplements and meds that can be taken. That it is a debilitating disease. (Katrina W., 57 years old)
No two people are the same. (Kim F., 57 years old)
Doctors don’t know much; side effects from meds can be worse than IC. (Karen, 58 years old)
“That this disease is grossly underfunded for research. We are desperate for relief and there hasn’t been anything new in years. (Karen, 58 years old)”
20 years with this disability and I’m still learning. (Orlanda D., 58 years old)
Flare ups with stress. (Rosie M., 58 years old)
A lot of horrible severe pain! It’s growing. It’s a very painful experience and there is no cure which is Sad there should be more funding for this disease. It’s been around for quite awhile it’s very painful and there’s not a lot of help or treatments for a cure!!!! It needs more awareness!!!!! There should be cure, there should be medicinal prescriptions for pain for the disease!!! (Boria R., 59 years old)
that is auto immune disorder and there is no cure… (Donna, 59 years old)
Can somewhat control I C through diet. (Lisa, 59 years old)
No meds have helped. (Micki K., 59 years old)
The fact that everyone is different and have different symptoms. (Elaine Y., 60 years old)
IC affects many organs b/c of the closeness. (Deborah M., 62 years old)
Exactly everything linked with it. (Patricia M., 63 years old)
that it is terrible to live with I have become a stay at home person. (Peggy, 63 years old)
That there is no rhyme or reason. And doctors suck. (Diane H., 64 years old)
How much diet causes it. (Kathy O., 64 years old)
Diet. (Linda, 64 years old)
It can go into periods of remission. (Darleen O., 67 years old)
No cure! (Linda, 67 years old)
That citrus, alcohol, dairy products can’t take. (Kathleen R., 69 years old)
It ties you to the home and the toilet, it ruins your life, it makes it impossible to make plans as you never know how well you will be on any given day. (Wendy P., 70 years old)
Everyone is different, and IC affects everyone differently. During a flare it is unbearably painful and frustrating. (Mary B., 73 years old)
that I don’t know another person who has it! (Virginia N., 75 years old)
diet control. (Maude L., 76 years old)

Interstitial Cystitis Pain Management

What are effective ways to manage your pain?

Azos. (Summer, 27 years old)
Azo slots of Tylenol or mild pain meds. Curling up with my knees up with a pillow. Baking soda to ease the burning. (Brandy D., 28 years old)
Bicarb in water, herbal tinctures for the bladder, inflammation and hormones, quercetin has been a life saver too. (Christine, 28 years old)
Heating pad, benedryl, azo and hyrocodone. (Brandi, 30 years old)
Heat pad and pain medicine. (Samantha, 30 years old)
Lido jelly. (A., 31 years old)
diet control, contraceptive pill to prevent periods (no breaks), Paracetamol and tramadol as pain relief. (Julia, 31 years old)
Caffeine free acid free diet. (Lorraine, 32 years old)
Staying hydrated, cutting out sugar, and taking regular probiotics to reduce the risk of a flare, but once a flare starts, nothing will reduce the pain (including opioids). (Lizzy R., 33 years old)
Diet! Also pyridium, uribel and tramadol. (Kate, 33 years old)
I have different line treatments just like they have different line treatments in the AUA. I first go for the heating pad or hot bath, or marshmallow root and chamomile tea. If that doesn’t help, then I move on to the Levsin and Tylenol. If those don’t work, then I move forward with the big guns- the Percocets and the Belladonna and opium suppositories. My maintenance treatment is Botox injections in my bladder every three months under anesthesia. So it’s a just a matter of taking care of the flares in between. (Jamie, 40 years old)
Other then mild to moderate pain medication, and avoiding some foods, not much. (Carrie O., 41 years old)
Heat packs can help somewhat, but I also take Aleve, Tylenol and Tramadol. I’m hoping my doctor will help me find better pain management. I also recently started using PanAway from Young Living, along with a few other essential oils I buy from them, and it also helped (in conjunction with the pain meds). (Tammy, 42 years old)
Hot water bottle, anti spasmodic. Nothing gets rid of the pain. (Michelle L., 43 years old)
Food choice, prescription medicine, only water to drink. (Tricia B., 43 years old)
Prednisone, Aloe Vera juice, Ginger tea, IC diet, Probiotics and Narcotics. Vaginal Valium and deep breathing exercises. (Robynn, 44 years old)
Controlling my diet. (Diana F., 49 years old)
Heating pad, watching what you eat. (Diane, 52 years old)
Hot water bottle. (Sue, 52 years old)
Heating pad, medication, bladder instillations. (Barbara, 54 years old)
Haven’t found any yet. (Cindy, 54 years old)
I take Azo, which is a miracle tablet when I am feeling really bad. I have taken baking soda to reduce acidity. I take a proteolytic enzyme daily, which reduces inflammation. I use a heat pack on my pelvic area. When it’s bad paracetamol doesn’t touch the pain. (Veronica H., 55 years old)
Pain meds- strong. (Kim, 57 years old)
Amitriptyline. (Karen, 58 years old)
Azo. (Kathy O., 64 years old)
Follow the IC diet, and take Elmiron twice a day. (Virginia N., 75 years old)

Interstitial Cystitis Difficulties

What are hardest aspects of living with interstitial cystitis?

It’s inconvenient. (Summer, 27 years old)
I can’t keep a job. I have no sex life. I never leave my couch anymore and I was such an active person. I never sleep. I owe over ten times a day and that’s a good day. It’s worse at night. I may pee, but as soon as I lay down, it’s like I never went. I stay sad and depressed- I never want to go do anything. (Brandy D., 28 years old)
Sometimes not being able to leave the house when I desperately need to. Thoughts of suicide when enduring an attack, low level depression. (Christine, 28 years old)
Not being able to know from day to day how I’m going to feel. Having to tell my son I can’t go somewhere with him because of the pain. (Brandi, 30 years old)
Frequency and pain. (Samantha, 30 years old)
Managing pain. (A., 31 years old)
Diet control, contraceptive pill to prevent periods (no breaks), Paracetamol and tramadol as pain relief. (Julia, 31 years old)
The difficulty of trying to maintain a full-time job. (Lizzy R., 33 years old)
It affects your entire life. It makes you anxious, because you never know when you may flare! (Kate, 33 years old)
Doctors don’t care. (Carrie O., 41 years old)
The hardest thing by far is not knowing how to explain this to people. Some days I feel like I’m going to die from the pain. Most of my life I thought I had a fairly high pain tolerance level and wasn’t a dramatic type of person, but this has beat me. The odd day when the pain is under control, it’s hard to explain to people I’ve been unwell because this is nothing visible and people don’t understand. A close second in how hard this is would be saying goodbye to the life I’d like. My husband had to take time off work, and almost lost his job because of this. We had a herd of award-winning, purebred registered dairy goats, and I wasn’t able to milk them and feed the babies. Because they’re living creatures, somebody had to, so he took a leave from work until we could arrange some large sales and downsize. I’m not able to get any kind of disability because I’ve been at home on our farm, so we are left with less income, and I’ve had to say goodbye to my beloved animals. (Tammy, 42 years old)
Not being able to leave the house or some days even my bed. The way pain changes you as a person. (Michelle L., 43 years old)
People don’t believe you are sick. People say that all you do is pee. (Tricia B., 43 years old)
The sudden onset without warning, not being able to get pain relief. The severity of the pain, and how it effects daily life. Depression for not having understanding doctors and adequate pain relief. (Robynn, 44 years old)
Constant pain. (Diana F., 49 years old)
Always planning, making sure there is a bathroom. Bringing your own food. (Diane, 52 years old)
No sex. (Sue, 52 years old)
Frequency and pain. I always have to know where the bathroom is. I can’t travel far due to constant frequency. (Barbara, 54 years old)
Everything about it. (Cindy, 54 years old)
Daily pain and urine frequency makes you not want to leave home. (Veronica H., 55 years old)
My whole life changed- from foods to sitting, it’s very hard to ride long distances. Pain daily, I can’t exercise, I have a very hard time trying to work. (Kim, 57 years old)
Aside from pain, worrying about finding a restroom to use every hour, not wanting to leave the house. (Karen, 58 years old)
Making plans. I never know when I will have a flare. (Kathy O., 64 years old)
Having to explain it to others, as I follow the diet. (Virginia N., 75 years old)

Interstitial Cystitis Advice

What words of encouragement/advice can you share with others who have interstitial cystitis?

It gets better! (Summer, 27 years old)
Explain the best you can to the people around you. I try to remember it will eventually pass. (Brandy D., 28 years old)
Keep trying to figure out what triggers an episode. Be super strict with your diet! (Christine, 28 years old)
Hang in there, and keep your faith in God. (Brandi, 30 years old)
Don’t give up. (A., 31 years old)
Life around you doesn’t stop with diagnosis – don’t wallow in it, adapt, keep going because life WILL get better – you will find new and fun things to do around your IC. (Julia, 31 years old)
Stick with it and find answers. (Lorraine, 32 years old)
With knowledge and patience you can learn to get a better handle on IC, and gain some control back. (Lizzy R., 33 years old)
Don’t give up! It will get better! Change your diet! It really works! (Kate, 33 years old)
No matter how many things you tried- how many meds you’ve tried, how many procedures you tried, how many pain pumps you tried, there’s always something new to try. I have been doing this for 35 years since I was five years old. I obviously wasn’t diagnosed until my mid-20s. Before that I was treated as if I had bladder infections constantly, a lot of antibiotics and cranberry juice. Throughout the years I’ve tried everything that’s recommended, and tried it for as long as I could stand it. It took me a long time to get to the botox which has been very, very helpful to me. And it’s also taking me a long time to get to a good doctor that actually cares about me, my disease and my pain. These are important things. I always booked at the herbal treatments my friend would suggest and realized marshmallow root and camomile tea helps my bladder 50% of the time. That’s a pretty good number. I also booked at Kratom which I forgot to list, but I do use that on occasion, and it works very well with a lot less side effects than the Percocet. What I’m trying to say is just don’t give up- keep trying new things- try anything, try lots of different things. Because there are so many modes of treatment. If your doctor tries one or two things, and says I give up, I can’t help you- you’ve got a bad doctor. Find a better one. (Jamie, 40 years old)
Keep hope. (Carrie O., 41 years old)
I would encourage people to seek help early. I put up with my frequency and bladder issues until they were pretty bad, then when I finally saw my doctor about it, she felt I had an infection. Even though tests were negative, she put me on antibiotics and tested again (three times). Then finally months later a referral to a urologist but that took eight months, and the urologist ordered a cystoscopy, but the wait time is 16 months for that. I feel like from what I’ve heard, the earlier you’re treated, the better you can respond, and possibly keep this from getting so bad. Don’t wait, and don’t give up. Keep seeing doctors until you get some answers, and also join support groups. Hearing others going through the same things helps you not feel alone, and often times support groups are the best place for info and tips. (Tammy, 42 years old)
Stay strong, talk about how your feeling, if removal is an option then go for it. (Michelle L., 43 years old)
You are not alone! Don’t give up. (Tricia B., 43 years old)
Don’t give up. Educate others. Join support groups, or see a therapist ( IC can be overwhelming). Get tested for autoimmune disorders, because they tend to overlap IC. Be sure to get second opinions when you do not feel you are doing better. I have personally had to change doctors about three times in seven years. Each one taught me new things about the disease. (Robynn, 44 years old)
Try to find the trigger foods. (Diana F., 49 years old)
Don’t give up! We have all struggled, be patient. There is so much information, do your research. What works for one person might not work for another. (Diane, 52 years old)
It could be worse! (Sue, 52 years old)
A good doctor can help you manage. (Barbara, 54 years old)
Don’t ever give up. Talk to others who suffer from it and try different things until something works for you. (Cindy, 54 years old)
Drink lots of bottled spring water. (Veronica H., 55 years old)
You have to do your best, and accept what you can’t change. (Kim, 57 years old)
You are not alone. (Karen, 58 years old)
Try anything and everything. What works for me may not work for you and vice versa. (Kathy O., 64 years old)
Follow the diet. (Virginia N., 75 years old)

Interstitial Cystitis Diet and Exercise

What’s been your experience with diet and exercise?

Yoga and diet has saved my life. (Summer, 27 years old)
I have learned many trigger food and drinks. There are lots of acidic food that I never knew about. (Brandy D., 28 years old)
Diet has helped loads, I’m not sure about exercise, I walk quite a bit. (Christine, 28 years old)
Diet helps with symptoms. (Brandi, 30 years old)
Doesn’t help. (A., 31 years old)
Improvement in symptoms, weight loss and increased energy levels. (Julia, 31 years old)
Acid free diet. (Lorraine, 32 years old)
Cutting out sugar has made a big difference in my IC. I haven’t noticed much difference with exercise (other than needing to stay hydrated). (Lizzy R., 33 years old)
I don’t exercise much, but diet has helped a ton! (Kate, 33 years old)
Exercises have always been hard to do, because it does cause some pain depending on what I’m doing. I have found certain things I can do that cause no pain- riding a bike or riding the stationary bike at the gym are my go-to- I have a bad hip. Diet is really tough for me, because I have a problem with sugar. I like soda and I like candy. I have a sweet tooth. I’m working on that, and I’m working really hard on it, because some of these things of course can contribute to the pain as far as the soda and the chocolate that I love. (Jamie, 40 years old)
No blue cheese, coffee or high acidic food. (Carrie O., 41 years old)
I can’t exercise during a flare up. My last flare up has lasted a month, and I can hardly walk across my house. Diet definitely makes a difference. No sugar, no caffeine, and so many things I’m in the process of learning. (Tammy, 42 years old)
Didn’t work for me at all. (Michelle L., 43 years old)
It’s hard. (Tricia B., 43 years old)
A whole foods and organic diet has been helpful. Exercise is not an option for me with IC. Yoga tends to be the best option for many though. (Robynn, 44 years old)
Diet has been challenging, but the paleo diet seems to work good for me. I exercise when I feel good- the treadmill works great, walking outside. (Diane, 52 years old)
Diet doesnt work for me. Exercise exacerbates my symptoms. Gentle yoga or walking works best. (Sue, 52 years old)
Some foods cause flares. Exercise always results in more pain. (Barbara, 54 years old)
It’s hard and I fail in doing it but I continue to try daily. (Cindy, 54 years old)
Some drinks and foods can put me in a flare. (Veronica H., 55 years old)
I miss spaghetti so much!!! My body needs the exercise, but I can’t, due to pain! (Kim, 57 years old)
I gained weight from comfort foods and amitriptyline. I can’t even walk the dog without running back home to pee. Yoga makes me pee, too. (Karen, 58 years old)
Exercising is painful. Finding my diet triggers is complicated. (Kathy O., 64 years old)
You have to follow the diet. Riding the bike is not a good idea! (Virginia N., 75 years old)

Interstitial Cystitis Treatments

What’s been your experience with treatments (medication, etc.)?

Azos and pyridium (which are essentially the same thing) are the only medications I use. (Summer, 27 years old)
Emeiron helps. Azo helps some. Pain meds help. Resting a lot helps. Holding the fetal position helps, and holding a pillow. (Brandy D., 28 years old)
I only use herbs which have worked wonders in a quick space of time. (Christine, 28 years old)
Elmiron helped, then I was symptom-free for six years. Now after this bad flare I started instillations. (Brandi, 30 years old)
The cystoscope with hydrodistention helped with frequency, but increased pain. (Samantha, 30 years old)
Botox is life. And lido jelly, too. (A., 31 years old)
On the whole positive. (Julia, 31 years old)
Antibiotics do help , Botox treat mentioned for chronic patients. (Lorraine, 32 years old)
I’ve found medications tend to bring short term relief followed by seemingly long term damage. I have avoided surgical intervention after researching many people who have undergone various treatments only to either find no change, or worsening of symptoms. I have found the best results managing my IC with diet and other natural treatments. (Lizzy R., 33 years old)
Stay away from instills! They only hurt the urethra more! (Kate, 33 years old)
I’m one of the cases where literally almost nothing works no matter what we tried, it just didn’t work. There were many, many years and days that I spent in bed or crying or just so depressed I just couldn’t stand it. Then I open my mind a little bit more, and try different things, and I tried more natural medicines and herbal treatments, and then I got to Botox which isn’t really for interstitial cystitis, yet it works. You know 15 years ago I wouldn’t have tried the botox just because it’s not approved for IC- there’s a lot of side effects, but I am so glad that I opened my eyes, and opened my mind to all of these different ways of treating this disease. (Jamie, 40 years old)
Cysto with bladder stretching sometimes helps. (Carrie O., 41 years old)
I’ve had some bad reactions to medications due to a different autoimmune condition I have (Myasthenia Gravis), and can’t take anticholinergics because of it. Another tip I learned in a support group was that antihistamines help interstitial cystitis a lot in most cases, but when I tried it I found out the hard way it made my MG way worse too. I’m on Mestinon which has a lot of gastrointestinal side effects, so when I add other meds on top, it amplifies that, and I almost always feel nauseated. For now I’m on Mirabegron and it seems manageable. The Imipramine I was first prescribed was a nightmare of stomach cramping and illness, as well as flaring up my MG. I’m still waiting on the cystoscopy, and I have hopes of better treatments once that’s done. (Tammy, 42 years old)
I tried everything on the market, including antihistamine, major opiates, antispasmodic. Neo bladder and now urostomy. (Michelle L., 43 years old)
Cymbalta helps with pain. Amtriptaline helps me sleep. (Tricia B., 43 years old)
I have tried antibiotics, bladder instills and steroids. I do not do well with antidepressants that treat pain due to a MTHFR gene mutation. (Robynn, 44 years old)
Not good, they didn’t work. (Diana F., 49 years old)
I take Amitriptyline and Mybetrque- it seems to keep me on track. I also have my bladder stretched about one or two times a year. (Diane, 52 years old)
Cystitstat works for me most of the time. Sometimes need two treatments together. (Sue, 52 years old)
Burning of ulcers helped two times, not the third time though. Uribel helps some. Bladder instillations help a lot until ulcers get really bad. (Barbara, 54 years old)
I haven’t had any meds that have helped. (Cindy, 54 years old)
I have never been offered any medication. (Veronica H., 55 years old)
No treatments have worked!!! (Kim, 57 years old)
I literally thought I was going to die from Myrbetric side effects. Oxybutynin and Vestcare didn’t work on pain or frequency. Amitriptyline helps with pain, but not frequency. (Karen, 58 years old)
Azo helps. (Kathy O., 64 years old)
Elmiron twice a day and Urbel as needed. Benadryl at night occasionally. (Virginia N., 75 years old)

Interstitial Cystitis Recommendations

Anything you’d recommend for someone with interstitial cystitis?

Stay away from acidic foods and drinks. (Summer, 27 years old)
Stay strong. It will depress you. Always explain IC to your loved ones and your job. (Brandy D., 28 years old)
A diet free of triggers, herbal tinctures and quercetin, also treat for Lyme disease if this is the case, I use high quality essential oils taken internally. (Christine, 28 years old)
Research, and do what works for you. (A., 31 years old)
Relax. Stop thinking it’s the end of the world and you’ll never be able to work or be happy etc- you will. Just chill and find new ways of doing things. (Julia, 31 years old)
Prolonged kidney infection / infactions is what ur told or just normal cystitis. (Lorraine, 32 years old)
Taking regular good quality probiotics, and staying as hydrated as possible. Also cutting sugar from your diet. (Lizzy R., 33 years old)
Diet, physical therapy, and keep pyridium with you at all times! (Kate, 33 years old)
Educate yourself, ask her doctor tons of questions, and if your first instinct is you don’t like your doctor, get a different doctor. You can never do too much research on this disease, because you’ll find so many different ways to treat it, and people have so many different theories of where it comes from and how it originates. So please be educated about your body, and what’s going on in it. (Jamie, 40 years old)
Get a good doctor if you can find one. (Carrie O., 41 years old)
Sadly, quit drinking coffee and tea if you do. No chocolate or sugar, and use a food diary to see what else flares you. Try to reduce stress in your life, and be kind to yourself. Join interstitial cystitis support groups. (Tammy, 42 years old)
If surgical removal is an option then do it, I have my life back. (Michelle L., 43 years old)
Find a good doctor that helps and goes the mile. (Tricia B., 43 years old)
Find a good urologist and gynecologist that is familiar with IC. Research. Knowledge is power. (Robynn, 44 years old)
There is so much information out there today. Do your research, Facebook has some good IC groups, we are all going though similar symptoms and we want to help you…Doctors don’t know it all, and they don’t know how it feels to have IC. (Diane, 52 years old)
Try anything suggested to find what works for you. (Sue, 52 years old)
Get a good doctor who listens, join a group of other sufferers for support. (Barbara, 54 years old)
Bottled water. Try proteolytic enzymes. (Veronica H., 55 years old)
Cystoprotek. (Kim, 57 years old)
Beware of the cystoscopy. The second one made me worse. (Karen, 58 years old)
Keep talking with your doctor and others with IC. (Kathy O., 64 years old)
Just read and follow doctors’ advice. (Virginia N., 75 years old)

Interstitial Cystitis Resources

What specific resources have you found most helpful?

Cook books and support groups online. (Summer, 27 years old)
The internet and others with IC. (Brandy D., 28 years old)
Google and Facebook. (Christine, 28 years old)
Facebook groups and talking to my uro. (Brandi, 30 years old)
Medical journals explaining the progress of the disease. It’s not easy for most people to understand, but for me, knowing exactly what my body is doing is massively comforting. That pain isn’t me dying – it’s my bladder doing XYZ and it will stop soon etc. (Julia, 31 years old)
Forums. (Lorraine, 32 years old)
Talking to other people with IC on places like Facebook. (Lizzy R., 33 years old)
Facebook groups, and reading other people’s stories online! (Kate, 33 years old)
Personal websites I go to for a lot of things. The Interstitial Cystitis Network and the Interstitial Cystitis Association are two really big, helpful websites that I go to for a lot of things, and I just Google a lot of things as well to see what else is out there. I of course talk to many, many people that have this disease to see what’s helped them. There are tons of resources out there, especially in today’s day and age. (Jamie, 40 years old)
Support groups. (Carrie O., 41 years old)
Facebook support groups have by far been the most help to me in learning about IC. (Tammy, 42 years old)
These groups. (Michelle L., 43 years old)
Facebook has good groups to join. (Tricia B., 43 years old)
Facebook groups, such as Interstitial Cystitis 101. (Robynn, 44 years old)
IC Network. (Diana F., 49 years old)
The IC-Network is very helpful, finding groups on Facebook helps, and you don’t feel so alone. (Diane, 52 years old)
Facebook group. (Sue, 52 years old)
My doctor, Facebook group, Google. (Barbara, 54 years old)
The IC groups. (Cindy, 54 years old)
The IC group on Facebook. (Veronica H., 55 years old)
Food list off IC Network, cystoprotek. (Kim, 57 years old)
Facebook support groups. (Karen, 58 years old)
Facebook pages. (Kathy O., 64 years old)
Websites have helped me realize I’m not alone after 40 years. (Virginia N., 75 years old)

Interstitial Cystitis Stories

Share an experience you’ve had related to living with interstitial cystitis.

My significant other is very supportive. (Summer, 27 years old)
It’s been rough. It’s really hindering me from all my daily activities. (Brandy D., 28 years old)
People not understanding. if you say ‘kidney disease’ people are very sympathetic and even curious to learn… the second you say ‘bladder’ people get embarrassed and change the subject. (Julia, 31 years old)
Had so called kidney infection with pain as if I had kidney stones. (Lorraine, 32 years old.)
Going in to discuss possible treatments for my IC with a GP and him being honest and having to Google IC in front of me. He was surprised by my knowledge, but I was reassured by his honesty. In terms of a negative experience, my lowest point was probably when I pushed myself to carry on working as a delivery driver when I was in the middle of an awful flare, because I didn’t want to give in. I cried in pain for the whole round, and ended up wetting myself on someone’s doorstep because my bladder muscles went into spasm. I felt so defeated at that point. (Lizzy R., 33 years old)
I miss out on some of the things I want to do with my kids over the years. My one kid’s almost 22, my youngest is 13. There are days I can’t do anything. There are days that I can do anything. I hate the days that I can’t do anything. I still struggle with the guilt even though I know there’s nothing I can do about it, and I’m doing everything I can, and I need to be resting. It’s hard. It’s hard on friends and family. And a lot of them don’t understand why I’m sick if I don’t look sick, or they just don’t get it. (Jamie, 40 years old)
My experiences are limited because I stay home and avoid outings as much as possible, but last December our son got married and his fiance asked me to go dress shopping with her and her mother. I knew I couldn’t be leaving every ten minutes to pee, and I also had to try on dresses for her to choose. So the day before I didn’t drink a lot and the day of going to the city to meet her I didn’t drink anything at all. By that evening I was so dehydrated it was awful. Now looking back I’d try to wear an adult diaper…but that isn’t a great solution when trying on dresses that are form fitting. I resorted to buying adult diapers when I was 40. It was embarrassing and even though my husband and I are very close, I try not to let him see me in one and therefore hardly ever use them if I can at all avoid it. It’s also embarrassing to buy them at my age. (Tammy, 42 years old)
I hate to travel due to never knowing when my bladder will act up. I have to map out the bathrooms ahead of time so that I know where and when I can relieve myself. I traveled to NY city from California and had a break down in the airport due to pain. The security guard had to wheel me to the boarding area in a wheelchair. I have learned to accept help from others now. It’s nothing to be embarrassed about, and gives me a chance to inform others how IC effects me. The only way others will know is if we tell people. (Robynn, 44 years old)
I have to plan all errands around stores with bathrooms, every time. (Barbara, 54 years old)
Friends and family don’t understand. They look at you like your being a hypochondriac when you say you can’t drink alcohol or fizzy drinks, etc. One close friend said she would drink it anyway which showed her total lack of understanding. It’s very frustrating. (Veronica H., 55 years old)
I can’t ride far in a car, I have to take bathroom breaks, and stretch…the pelvic pain is horrible. (Kim, 57 years old)
People don’t understand the frequency and urgency. I had to use the restroom on a train to NYC, and couldn’t find which car it was in. Also, when I was driving with a friend, I begged her to pull over so I could pee on the side of the road. She refused. (Karen, 58 years old)
Missing an entire concert with my daughter. We had driven to Nashville, TN, and I had a very painful flare. Ended up sitting in the first aid room at the venue. (Kathy O., 64 years old)
Diagnosed as UTI for 10 years. After shopping around I found a doctor who told me what I had. She gave me literature and Elmiron. (Virginia N., 75 years old)