May 17, 2017

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 Netword 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 Cystits: IC Gal’s Journey iccatherine.blogspot.com 2016

 

Interstitial Cystitis Support Groups

Interstitial Cystitis Support Groups On Facebook

  1. Healing Interstitial Cystitis Naturally Facebook Group (7460 members)
  2. Interstitial Cystitis Group (3413 members)
  3. Interstitial Cystitis aka Painful Bladder Syndrome (3051 members)
  4. Interstitial Cystitis 101 Group (2677 members)
  5. Interstitial Cystitis Warriors (1729 members)
  6. #icstrong: Interstitial Cystitis Awareness Movement (1624 members)
  7. Interstitial Cystitis/Painful Bladder Syndrome Personal Support Group (1073 members)
  8. Essential Oil Wellness – Interstitial Cystitis (885 members)
  9. Interstitial Cystitis/Painful Bladder Syndrome  Support Group (788 members)
  10. Interstitial Cystitis: Awareness & Hope (685 member)
  11. My Invisible IC – Natural Healing for Interstitial Cystitis (624 members)
  12. Interstitial Cystitis Bladder Friendly Cooking (481 members)
  13. Interstitial Cystitis, Endometriosis and Related Conditions UK (389 members)
  14. Interstitial Cystitis . . . I Will Survive! (385 members)
  15. Interstitial Cystitis Support Group (380 members)
  16. Friends with IC (Interstitial Cystitis) (309 members)
  17. Interstitial Cystitis & The Circle of Bladder and Kidney Fighters (303 members)
  18. Interstitial Cystitis: Fresh Flavors and Recipes (282 members)
  19. Interstitial Cystitis Foodies (262 members)
  20. Interstitial Cystitis Friends (255 members)
  21. Interstitial Cystitis, Chat and Support UK (229 members)
  22. Interstitial Cystitis Support (228 members)
  23. Healing Interstitial Cystitis Using Natural Methods (176 members)
  24. Interstitial Cystitis Support Group of Metro Atlanta (165 members)
  25. Interstitial Cystitis & Essential Oils (120 members)
  26. (Interstitial Cystitis) IC Strong (118 members) 
  27. Interstitial Cystitis Awareness (118 members)
  28. Irish Interstitial Cystitis Support Group (116 members)
  29. Understanding Interstitial Cystitis for Spouses and Loved Ones (111 members)
  30. Interstitial Cystitis Awareness (100 members)

Other Interstitial Cystitis Support Groups And Forums

  1. 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, uretheral pain. (Summer, 27 years old)
  • Pain and burning every time I pee- 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 any more. The last flare up I’ve had- it’s been six months, four doctors, 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)
  • Urgency, burning after urination. Painful sex. (Brandi, 30 years old)
  • Pain, bloating, frequency and urgency. (Samantha, 30 years old)
  • Burning, cramping, spasms. (A., 31 years old)
  • Severe pain, frequency, blood in urine, incontinence. (Lizzy R., 33 years old)
  • Persistent urgency (24/7) and frequency. (Kate, 33 years old)
  • Urgency, frequency, severe pain, spasms, and inability to hold a lot of urine at one time. (Jamie, 40 years old)
  • Burning, frequent urination, tight abdominal muscles, moderate to severe pain. (Carrie O., 41 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 also included a painful pushing sensation after urinating (I’ve since been told it’s 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)
  • Loin pain, frequency (70+) bleeding. (Michelle L., 43 years old)
  • Frequency, pain, burning, bloating, pressure. (Tricia B., 43 years old)
  • Pain, frequent urination, urinary tract infections, blood in urine, kidney pain. (Robynn, 44 years old)
  • Burning. (Diana F., 49 years old)
  • Over active bladder with pain, anxiety. (Diane, 52 years old)
  • Burning, urgency, aching. Shooting pain. (Sue, 52 years old)
  • Spasms, burning, stinging, frequency, cramping, pelvic pain, back pain. (Barbara, 54 years old)
  • Acute pelvic pain and discomfort. Urine frequency and bladder pressure. (Veronica H., 55 years old)
  • Pain, frequent bathroom trips, painful sex. (Kim, 57 years old)
  • Frequency, excruciating pain, urgency. (Karen, 58 years old)
  • Pain and burning. (Kathy O., 64 years old)
  • Burning leading to pain. (Virginia N., 75 years old)

Interstitial Cystitis Facts

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

  • 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- it blew my mind. (Brandy D., 28 years old)
  • The link to estrogen/hormones, how diet affects the condition. (Christine, 28 years old)
  • That it can be affected by hormones. (Brandi, 30 years old)
  • Food triggers, flares. (Samantha, 30 years old)
  • Evil twin of endometriosis. (A., 31 years old)
  • The possible links to auto-immune disease. (Lizzy R., 33 years old)
  • Diet really helps! I went paleo and felt 90% better! (Kate, 33 years old)
  • Just learning which foods are acidic. And learning about acidic and alkaline has been very, very interesting, and very important to the treatment of my disease. Figuring out my triggers has been life-changing. (Jamie, 40 years old)
  • How doctors do nothing for you. (Carrie O., 41 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 (I’m 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)
  • 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)
  • 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)
  • That it’s a condition where there are no drugs that work. (Diana F., 49 years old)
  • Acidic foods hurt the bladder, what works for one person might not work for another with IC. (Diane, 52 years old)
  • Vibration aggravates my bladder wall. (Sue, 42 years old)
  • The symptoms are different for everyone. Foods can be a real problem. (Barbara, 54 years old)
  • Food and drink can cause a flare. I am better when drinking bottled spring water (maybe there’s something in tap water that irritates my bladder). (Veronica H., 55 years old)
  • No two people are the same. (Kim, 57 years old)
  • Doctors don’t know much; side effects from meds can be worse than IC. (Karen, 58 years old)
  • How much diet causes it. (Kathy O., 64 years old)
  • That I don’t know another person who has it!!! (Virginia N., 75 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)
  • 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)
  • 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)
  • 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)
  • 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)
  • 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)
  • 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)
  • 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)
  • 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)
  • 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 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)
  • 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)
  • 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 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)
  • 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)