Patient Comments: Interstitial Cystitis - Describe Your Experience

Question:

Please describe your experience with interstitial cystitis. Submit Your Comment

Comment from: Anne, 55-64 Female (Patient) Published: July 24

I have had interstitial cystitis (IC) for about 6 years now. I went to a urologist who gave me a cystoscopy and found it to be ulcers on the bladder, or IC, as we know it, I am now on Elmiron, that I take 3 times a day for the rest of my life. The pain disappeared after taking the drug for 2 to 3 months. I suggest you try asking your doctor about this IC medication. Good luck.

Comment from: Pain in Arkansas, 55-64 Female (Patient) Published: June 13

I've had this pain from interstitial cystitis for over 20 years, and I have seen so many different doctors it is unreal. I found a pain doctor over 20 years ago through my primary care, and he put me on 2 different pain medicines. I am also on an antispasmodic medicine, and it was great. I was able to live a normal life, but when I had to switch doctors, my new pain doctor will not treat the bladder pain. I do not understand why, but the pain has returned with a vengeance. I just can't live that way again. It took so long to get some relief, I cannot understand why I couldn't just keep doing what was working.

Comment from: Kristy Pac, 45-54 Female (Patient) Published: June 12

I have had interstitial cystitis (IC) since 2010. I didn't get diagnosed for a few years, but I was able to self-diagnose through research. I had always had frequent urination and was a late bed wetter, but this was a new intensity. It began with extreme frequency and urgency, with burning upon urination. I first saw an acupuncturist and took Chinese herbs. The burning calmed down maybe from the herbs, but the frequency and urgency did not, and I started having pain during intercourse and orgasm as well. I tried cranberry, next echinacea, thinking I had an infection. When I finally got tested in 2011, I had a yeast infection. They treated that, but the IC continued. Then I tried marshmallow infusion for nearly a year which didn't help. In 2012 I had a transabdominal and transvaginal ultrasound that came out normal. A specialist recommended the IC diet, which did not help at all. I actually tried even fasting with only water for 3 days during which I flared plus got a migraine from not having food. In 2013 I a specialist tried Elmiron, amitriptyline, vaginal diazepam (valium), oxybutynin, and trospium chloride over the next couple years. None helped, and the last made me really sick. Tried Azo, and in 2016 a specialist recommended physical therapy, neither helped. I got a broth culture to rule out any infection undetected by usual lab work. My urogynocologist prescribed Hyophen. She did a cystoscopy with hydrodistention and could not she see much visible inflammation on the bladder wall. She gave me another new test to triple check on the infection. Now in 2018 I'm 8 years in. On a good day I go minimally every 20 to 30 minutes during waking hours and several times during sleeping (can't keep track). On a flare day I will have periods of going every minute or more. I did a 3-day voiding diary, and my frequency had doubled since a diary 3 years prior. Two good days at 67 times and 94 times respectively. The 3rd day was 118 but included a flare in which I just kept going continually and was not able to count, so it was more than that. Lately I have been having flares nearly daily. It seems my condition is worsening in general. However, intercourse has improved with using a 98 percent aloe vera gel internally. Also, though I have burning labia pain that moves around my vulva, I had some success with topical lidocaine. Then that stopped working, but now I have a steroid cream that seems to give relief. I still have terrible itching sometimes, and nothing seems to relieve that. Though diet does not seem to impact, I avoid caffeine just in case. My doctor wants to try percutaneous tibial nerve stimulation. If that doesn't work, we will try distillations, but I'm putting that off, because catheters are so excruciatingly painful and cause me such after pain and flares. I am desperate and despairing about my health.

Comment from: Jones Daniella, 0-2 Female (Caregiver) Published: December 15

I have been suffering from IC (interstitial cystitis) symptoms for 8 months. I never had issues before that, but it came all of a sudden and it was horrible! I was left in absolutely excruciating pain after 4 rounds of antibiotics that I was given to treat the 'urinary tract infection' that I had. I was diagnosed with IC 9 months ago. I've been on the GAPS introduction diet for a week now. I've been trying to keep my spirits up but I just feel like I'll never feel normal again, because I have been to several hospitals for a solution but the doctors could not help me, I feel discouraged and helpless.

Comment from: jensavon1611, 45-54 Female (Patient) Published: November 10

I've read quite a few of these comments. I noticed most patients want to know about each other's pains, etc. I've had severe interstitial cystitis (IC) for 18 years. The most important thing I can say is get a good urologist, a good primary care physician, or if needed a pain doctor. I am on the strongest medicines possible, fentanyl and Dilaudid and I'm still in so much pain that I'm bed ridden with my heating pad. My IC has gotten much worse recently. No matter what, find yourself a doctor who truly understands what IC is because it is recognized in the MDR book as being as painful as cancer. I also have fibromyalgia, chronic fatigue syndrome, endometriosis and more. These are all connected. Get your social security disability. It will be a fight but if you can't work then you do what you have to do. IC is the worst thing anyone can have other than cancer. Treatments have been the only help to me. Good Luck and hang in there, it truly is awful all the way around.

Comment from: bella11, 55-64 Female (Patient) Published: April 09

The best thing I ever did for interstitial cystitis was to take an antihistamine like Claritin or Benadryl, the next best thing was to get the book of pelvic floor exercises. Go to a urogynocologist since less than 19 percent of doctors know how to diagnose this. Good luck on your journey.

IMAGES

Interstitial Cystitis (IC) and Painful Bladder Syndrome (PBS) See a medical illustration of the bladder plus our entire medical gallery of human anatomy and physiology See Images
Comment from: Sarah9739, 25-34 Female (Patient) Published: September 27

I have had interstitial cystitis for only about a year and a half. I started Elmiron which seemed to help a little bit. Then I got CBD oil. I take a couple of drops in the morning into my water and a couple at night. It has helped with my pain immensely!

Comment from: Istherehope, 65-74 Female (Patient) Published: October 31

Interstitial cystitis has destroyed my life. It took 3 years to get a diagnosis. After much effort to keep my job and struggling to cope, I had to quit my job as a teacher. Frequent bathroom needs and fatigue from getting up several times a night to urinate completely incapacitated me. I have used up my savings and have sold my home to have money to live on. When that's gone, I will be homeless. I have changed my diet and have had every test, medication and treatment under the sun. The only thing left is having an implant. Doctors will not support me in confirming that it is a disability, so my student loan entity will not acknowledge that this condition is disabling. I don't know where to turn anymore, and the anxiety of not knowing how I will live financially has made me a nervous wreck. I have met with the Bureau of Vocational Rehabilitation to find work; however, they told me that my condition is so restrictive that they may not be able to help me. I am now looking for any clinical trials I might be able to participate in.

Comment from: Patricia, 65-74 Female (Patient) Published: May 15

I was diagnosed in 2013 with interstitial cystitis (IC). I had been having urinary tract infection (UTI) symptoms since 2006. Primary physician would prescribe a course of Cipro and things would settle for a while but a few weeks later, I would have bladder pain, low back pain and frequency. I saw 3 different urologists before I found one who did a cystoscopy under anesthesia and stretched the bladder lining. After the surgery, he told me that I had interstitial cystitis. I had a Foley catheter for a few days and was bleeding for some time. After the bleeding stopped, I had a series of DMSO (dimethyl sulfoxide) bladder instillations and was started on Bactrim DS 1 daily. Things went well for about 3 years and then I had a real UTI and had Cipro for that. I had moved in the meantime and no longer had the same urologist and had to find a new one. She took me off the Bactrim DS and started me on methenamine hippurate 1 Gm daily orally. As the cause of IC is not known and there is no cure, I just keep up with the oral medication I am now taking. I had a total hysterectomy in 1983 and 20 years later, I had a cystocele repair as part of the bladder had broken through the vaginal wall. I was nursing at the time and had lifted something too heavy. I just today started having the symptoms of a UTI. Last one was in late 2016. So went 3 years without symptoms. I hope I do not need to have the cystoscopy again with the DMSO bladder instillations but if the symptoms continue regularly, I will need to do something.

Comment from: Monica, 25-34 Female (Patient) Published: March 25

I was diagnosed with interstitial cystitis (IC) when I was about 17 or 18. I am now 24 going on 25. I took tramadol and had the procedure done by a urologist where they stretched my bladder, along with a strict diet. All those things helped but my doctor said the underlying cause was endometriosis. Once that was under control, my IC symptoms would improve. After going to several gynecologists and being misdiagnosed for years, I found out I never had endometriosis, but pelvic congestion syndrome. I had surgery about 3 and a half years ago for that and have been much better since. Initially, my IC symptoms went away for the last couple of years until now. A couple months ago, I found out I was pre-diabetic (but I have the symptoms of a full blown diabetic) and my blood sugar levels hadn't really been under control. With diet, I think for the most part my blood sugar is under control but it may not be. My primary doctor refuses to put me on medicine for my blood sugar since I'm technically not a full blown type 2 diabetic. I think that this is the culprit of the flare up possibly. I will be talking to my primary care physician and scheduling an appointment soon to meet with my urologist.

Comment from: Taylor, 19-24 Female (Patient) Published: February 25

I went to the doctor and she told me that I may have interstitial cystitis (IC). She doesn't know because she couldn't run a culture. I've been dealing with issues for 2 years now. I will get symptoms that are close to a yeast infection and then sometimes I will feel like I'm getting a urinary tract infection (UTI). I also have frequent pelvic pain and also a lot of lower back pain. I was having discharge but the doctor told me that my cervix was very red and inflamed and that there were a lot of white blood cells and discharge. I was given pills for that and I was also given some UTI medication and fluconazole until I can get to a urologist. I'm very frustrated and I can't seem to get an answer from anyone.

Comment from: Carole, 45-54 Female (Patient) Published: February 19

After my second child I was having issues and I kept on getting the wrong diagnosis. Interstitial cystitis is a very serious disease. You are in so much pain and never sleeping. Not good for my mental health either. After several different procedures, they put me on Elmiron. It is a miracle drop for me. I took it daily for 3 years, I do have it on hand still for flare ups. I also have AZO Standard on hand too in case I do not have any Elmiron on hand.

Comment from: Patti, 55-64 Female (Patient) Published: November 12

I so sorry to hear your despair. I was diagnosed with interstitial cystitis (IC) by biopsy three years ago. This diagnosis is a journey. I don't want to get into my whole history. Diet is important, but be careful not to overdo that too. I am gluten/dairy free and watch the usual IC diet. That has helped as well as stress management/meditation. The drug Hyophen has been my best help. The only side effect for me is dry mouth.

Comment from: Moose, 55-64 Female (Patient) Published: October 13

I have had interstitial cystitis for over 10 years. It really irritates me when people tell me I should be able to eat things I know I can't. When I go to family picnics there is never anything I can eat. I usually have to eat before I go. My friends are more concerned about what I can eat than family. I have good and bad days. When I have a bad day I can't do too much. Sitting for long periods of time makes it flare up, and if I sit on hard chairs. I have found an herb that seems to help. It is aloe vera. It seems to help me. I also try to stay away from food that makes my IC flare up, which isn't easy to do. I drink lots of water every day and take ibuprofen when the flares get bad. It is good to know that there are people who understand what I am going through.

Comment from: Lyn, 55-64 Female (Patient) Published: October 13

I was diagnosed with interstitial cystitis with ulcers in my twenties. I am now 57. I was told I had the worst bladder they had seen. They suggested I go and have a bladder made. I refused that. I spent years with pain in pelvic area with 65 times a day in bathroom. I have tried every treatment offered. Amitriptyline 100 mg has been the only thing that has helped. I have been in remission for 4 years until this week. I went to my family physician and he said I had a urinary tract infection. I am going to urologist this week. I hope it is not back.

Comment from: Pain in Okla, 35-44 Female (Patient) Published: June 09

When I was first diagnosed with interstitial cystitis (IC) I was 22. It took seeing many doctors and several misdiagnoses before the correct diagnosis was made. My urologist started me on Elmiron which was not successful for me. The next step was bladder distentions, unfortunately those helped for a small window of time. My urologist relocated and I went without treatment for years. Two years ago at the age of 39 I was introduced to a urologist who specialized in IC. My first treatment with him was steroids injected into my bladder upon the discovery of Hunner's ulcers. The injections worked wonders, unfortunately it was only a short term fix, lasting only 9 months. A year passed and I could no longer function with the continual urgency and frequency. My urination was up to 30 times during the day and 5 to 6 night time trips do the bathroom. My urology specialist told me about InterStim therapy. After a lot of research on my part and many discussions we decided that having this disease for 17 years was long enough and it was time for a serious intervention. I had the one week trial of the Medtronic Implants to see if it would be a success for me. I kept a diary for a week, of my urination, including the urgency and frequency levels. During my trial experiment we tried and discussed the option of having not just 1, but 2 InterStim devices permanently placed to help my urgency and frequency caused by my IC. Upon my return for my follow up to report my experience, my doctor reported the trial was a success and we were ready for the permanent placement of the Medtronic InterStim therapy. It's been 10 months now since the surgery and it hasn't cured my urgency and frequency, but it has changed the severity tenfold. I do experience IC flares every now and then, but thanks to modern medications and a great urologist I know what to do to get through them.

Comment from: Bitty71822, 45-54 Female (Patient) Published: March 11

I am 51 years old and have been diagnosed with interstitial cystitis for 20 years now. It is awful. It is so painful, yet the doctors do not want to prescribe pain medicine. I don't know how much longer I can live with this condition. I don't smoke, drink alcohol, or have sex yet I still have flare ups. When I do, it is the worst pain I've had in my life. No doctor seems to understand it. I feel helpless.

Comment from: loco, 55-64 Female (Patient) Published: March 05

I have had interstitial cystitis (IC) for half my life now, ever since a bladder infection diagnosed at age 31 (I'm 63 now). I think I've tried almost every treatment and nothing has helped. Sometimes my teeth are on edge so much from the pain I want to scream, even while I am in front of a class. (I'm a teacher, so screaming would be bad!) Lately, I am taking more and more Pyridium, up to 3 pills a day, and hot baths, and I have started taking Paxil again which I used to take as a headache deterrent but now I am hoping will help take the edge off and make me more psychologically stable. I have also started doing daily meditation. I once saw a physical therapist who taught me internal massage on the pressure points using a dilator; I'm thinking of trying that again.

Comment from: Tamsy, 75 or over Female (Patient) Published: December 23

I have been taking Elmiron for interstitial cystitis (IC) for over 15 years and it has helped tremendously. Of course I have occasional flare-ups at which time I take Pyridium. It is thought that the IC is an autoimmune problem as I also have endometriosis, colitis and chronic sinus congestion. My main problem now is that the Elmiron causes high liver enzymes so my gastroenterologist wants me to stop the Elmiron. I don't see how I can do without it. Elmiron has a half-life of 20 to 25 hours which is not much, of course. If I stop it for several days, then my liver enzymes are normal. There should be a happy medium here.

Comment from: Tonya, 35-44 Female (Patient) Published: December 16

I am 36 years old and was diagnosed with interstitial cystitis (IC) in June of 2007. I had symptoms for years but was able to ignore them until about February of 2007 when I could barely work. My symptoms then are the same as they are today: fatigue, pain in pelvic area and low back, sometimes in my hips and down my legs, and tenderness when pressing on my bladder. I went to a primary care physician (PCP), had a urinalysis and he said it looked like I had 'a chronic urinary infection not acute' so he put me on an antibiotic. That didn't help so he gave me a longer regimen of the same antibiotic. That didn't help so he gave me a stronger antibiotic. No relief. He wanted to rule out kidney stone, appendicitis, etc. But I didn't have insurance at the time. The pain was so bad one day that I went to the emergency room (ER) and had several tests to rule out a kidney stone, any bacterial infections or STDs, appendicitis, and everything was negative. I had a history of endometriosis so I thought maybe it's that. I was of course at my wits' end and getting very depressed. I saw my gynecologist and he thought it was endometriosis as well, so he did a diagnostic laparotomy. All negative. After the surgery when I saw him in his office he gave me an IC questionnaire. He decided that's what I had. He put me on Elavil and Elmiron and did 2 bladder instillations in a week. The following week my house sold, I paid off a lot of debt, moved and took a great job, i.e., got rid a lot of stress! I didn't have any symptoms for about a year until I had several deaths in my family and a lot of stress again. I tried eliminating things from my diet but couldn't tell a difference. I've had numerous hydrodistentions and they eliminate the symptoms for a few months depending on my stress level. I'm almost certain that my flare ups are directly related to my stress level. I really hope my post helps someone. It is not easy to deal with.

SLIDESHOW

Urinary Incontinence in Women: Types, Causes, and Treatments for Bladder Control See Slideshow
Comment from: Sonkst, 55-64 Female (Patient) Published: November 19

I have had interstitial cystitis (IC) for 13 years. There were times I when I thought if I had to live with the pain for 25 more years, I'd rather be dead. Since I found the most wonderful urologist ever, I have learned how to cope. I'm not a fan of taking any kind of medication (since you never know if it will send you into a flare) but three things that are a must for me are, vaginal Valium, it doesn't seem to affect me the way oral Valium does so that was a plus; then Prelief before meals especially if I have noticed in the past there was a reaction to that particular food; and slippery elm and uva-ursi.

Comment from: Brinda, 25-34 Female (Patient) Published: November 11

I was living with constant urinary tract infections (UTIs), and 7 stones since I was a teenager. I can't tell you how many doctors told me and my mom that I had the worst infection of anyone they had ever seen. When I was 27, I was diagnosed with cervical cancer for the 3rd time since I was 19 years old. I also had ovarian cyst constantly that even amazed the doctors. So they did a hysterectomy on me and when I woke up I tried to tell the nurse that the catheter didn't feel right but they wouldn't take it out till the next morning. When they took it out I never urinated the same again. It was always constant pain and I could pinpoint exactly where the pain ran up to. So for 3 years now I have had kidney infection one right after another. And I would even feel like I had one and would swear that I did and I would be negative. My obstetrician/gynecologist that inserted my catheter during my hysterectomy told me that it was all in my head that there was nothing wrong with me and that I was pretty much a pill popper. So when I told my regular physician what he said, he sent me to a urologist and he knew exactly that I had interstitial cystitis (IC). So he put I me in surgery the next day and dilated my bladder. When I came to, he was telling my husband how bad my bladder was. Finally someone believed me and found out what was really wrong with me. I'm so sorry this is long story but this is the closest thing I have found for a support group. I had a flair up and I was alone and scared. I thought no one out there knew what I was and still am going through. I am so thankful I found this page! I thank you for letting me share my story, and letting me realize that I'm not alone. And there are people out there who know what I'm feeling, not just emotional but how the pain is overwhelming and sometimes debilitating.

Comment from: blondnj, 35-44 Female (Patient) Published: August 11

I was only diagnosed with interstitial cystitis (IC) a few months ago but it has been very difficult. Most of the medications the doctors have prescribed for me either haven't worked at all or only help for a little while. I had my first bladder instillation today and I just went to the bathroom for the first time a few minutes ago and the pain was so bad! It was like my first flare up almost a year ago when I didn't know what I had but that something was seriously wrong. I am in so much pain and on my 2nd doctor, so depressed because nothing seems to help me to feel better. I am on the diet and have lost a lot of weight. My family and friends say that I am too skinny but I am so tired of not being able to eat what I want, only being able to eat safe foods, even then sometimes I still get flare ups and am in pain. I am so tired of going to parties or out to dinner and not being able to eat anything there. Tired of being hungry and eating something safe and then being in pain later on anyway. Plus this problem put a big strain on my marriage because I couldn't have sex with my husband because it was too painful. No one I know has heard about IC, so tired of having to explain it over and over, feel so sad and alone, wish there was a support group where I had someone to talk to who understood what I was going through.

Comment from: keikee, 45-54 Female (Patient) Published: August 06

I'm a 54 year old sufferer of chronic interstitial cystitis. The first symptoms began very suddenly at the age of thirteen. One morning at school I was fine one minute and the next I was in the restroom with the urge to urinate and the urine felt like burning acid. My dad picked me up and took me to the pediatrician. There was no bacteria but plenty of blood in the urine. Nevertheless the sample was sent for culture, I was given antibiotics and sent home with a few Tylenol #3. I was absolutely shocked at the pain I was in. Over the next few days the symptoms got no better so I went back to the pediatrician who changed the antibiotic to a sulfa drug. With couple of more days of heating pad I did feel better. One month after that I was taken to the emergency room (ER) with agonizing bladder pelvic area pain. I was told there was bacteria and blood in the urine this time. I saw the pediatrician about five times that year with bladder infection symptoms. The fifth time he referred me to a urologist. Then the real fun began. I can't remember how many times my urethra was measured to be sure it was not partially blocked. It hurts to have a hard foreign object inserted into one's urethra. Then there was the tiny camera inserted so the doctor could look around inside. No anesthesia is given whatsoever. That hurts terribly. It was unreal. Though I was told my bladder wall was raw and red looking, I was sent home with only the antibiotics; that's only the beginning. Over the years I was made to feel the doctor didn't believe the pain was 'that bad'. Finally at the age of 35 I met a urologist who put me under anesthesia in the hospital operation room, distended my bladder and took pictures, etc. When I woke up later my husband and the doctor were talking in the room. The doctor said, “No wonder her bladder hurts! It's the color and texture of raw hamburger!” I should write a book! It's been a long road.

Comment from: Vanessa O, 19-24 Female (Patient) Published: June 02

I have been having urinary tract infections (UTIs) since I was 14. I would get them monthly and none of my doctors would give me medication and they would go away within a couple days. I had my son at 17 and my UTIs went away for years. I moved to the city when I turned 19 and about a year later the UTIs came back. They were not very frequent as before so the doctors did not have any concerns. At age 22 I had my daughter and the UTI"s came back monthly. My doctor finally sent me to a specialist and I was diagnosed with interstitial cystitis (IC). The specialist but me on Elmiron three a day, Uribel for pain and the diet. It has been two years now and I have found out food is not what gives me flare ups, sex is what gives me flare ups. My husband is gone 4 days a week for work and when he gets home if I have sex every night for the three nights he is home I flare up and am in pain for about 5 to 7 days. I had to quit my job because if I didn"t, I would have been fired for missing too much work. This disease sucks and is painful and I feel alone because no one I know really knows how painful the flare ups are.

Comment from: KaraC25, 19-24 Female (Patient) Published: May 22

I am 21 years old and I have been suffering with interstitial cystitis since I was 18. I find that when I don"t have a flare up, I can live a pretty normal life. But when I do have a flare up, I"m stuck in bed or on the toilet or in a hot bath trying to do anything to relieve the pain. I have an urgency to urinate, on top of excruciating pain. I cut out all soft drinks and citrus fruit. I don"t notice anything in particular that causes the flare ups. I have tried the bladder installation, which relieved the pain temporarily. I heat up a water bottle and stick it directly on my private area. I have currently dealt with a flare up for almost a week. Going to school full time and working is miserable.

Comment from: Jazzy, 35-44 Female (Patient) Published: April 17

I am 43 years old and I have been suffering from interstitial cystitis (IC) for about 7 years. I had extreme pelvic pain, endometriosis, cysts and tumors. Doctors suggested hysterectomy. I still kept getting seromas, went through interventional radiologist removing fluid filled pockets. Not to mention, after one of my surgeries the doctor cut my bladder and that is when all the spasm started. I have been on Elmiron, Elavil, Uribel, and Valium and I was just given the vaginal Valium to insert at night. It can be very depressing. The next stop is going to be pain management, which I don"t believe is going to help. I can"t be a zombie, I code neurosurgery claims every day.

Comment from: ahennasey, 25-34 Female (Patient) Published: March 26

I have suffered with interstitial cystitis for over 11 years now. I have extreme pain and nothing seems to make it go away. I have changed my diet, cut back on smoking and even gotten off the soft drinks. I have even lost weight to see if that would help, noting does. The pain is so bad at times all I want to do is cry and sleep. Individuals who do not have this or even know what it is have no idea of the pain and suffering that someone with this has. I wish there was a cure but unfortunately there is not. I really wish there were support groups that I could attend but I do not know of any.

Comment from: rwaltman, 35-44 Female (Patient) Published: March 03

I started to suffer with really bad bladder problems about 14 years ago, and the older I get the worse it gets. I get up at least 40 times a night and without a lot of sleep I feel horrible the next day. I use a heating pad that seems to help a lot and the Azos help with the pain a little. I thought that I was the only person in the world with this problem. I notice that when I drink orange juice or eat watermelon or eat certain foods it makes my bladder problems so much worse. I really hope that a cure for this interstitial cystitis is found because I really don"t know how much longer I can deal with it.

Comment from: Drained, 35-44 Female (Patient) Published: January 02

I was told I had interstitial cystitis about 5 years ago but suspect I have had it since I was 18. I had a bad flare up in January and for the last year flare ups happen often and at the moment I am on a 2 month flare up with no relief in sight. I notice obvious blood in my urine. I sometimes pass actual clots. I just joined a support group and I think that will make a difference because I will be able to talk to people that feel the way I do. I abide by the diet to a T. But still have these flare ups.

Comment from: mainelykk58, 55-64 Female (Patient) Published: September 15

I began my experience with interstitial cystitis with awful and extreme pain in my lower pelvic area. The pain became so bad that I could not do any simple household chores or complete sentences. I was first sent to my urologist where a cystoscopy was performed. Then I was put on medications including, Hydroxyzine, Elmiron, Levsin SL and Flexeril. This slightly relieved my pain but not enough to make me feel I was still among the living. I then was sent to a pain specialist where they went over my test results and spoke to many of my doctors. I have had Crohn's disease, chronic fatigue, osteoarthritis and thyroid disease for many years. I was told that this interstitial cystitis was part of an auto-immune disease grouping that many people get. It's as if your body is attacking itself, thinking good cells and tissue are bad and trying to destroy them. But of course, there are no bad cells or tissues, and my good tissues are being destroyed in this process. I would greatly urge anyone with this to be seen by as many doctors as possible for the ultimate in medication coverage. Then one must see a pain specialist to be given the most amount of pain relief medication possible without making a zombie out of you. With these things being done you will not be cured, but you will be able to “live” a better, more enjoyable life.

Comment from: loissamsin, 35-44 Female (Patient) Published: April 27

I hear you! I have the same problem. I was diagnosed with interstitial cystitis and it made my life miserable. My doctor prescribed medication that just made me sick so now I just stick to natural supplements, that work. I now use the Lady Soma cranberry concentrate and I've taken this everyday (sometimes twice a day) for over 3 years. It's incredible how much it helps with the burning that urination causes. I normally had to get surgery on my bladder once a year, but because this cranberry concentrate works so well, I've been able to go 2 or 3 years between surgeries. It also helps to control the burn that you feel while your bladder is filling up, and when it's full.

Comment from: Jasmine, 35-44 Female (Patient) Published: November 11

I am 6 weeks pregnant and I am suffering from interstitial cystitis. It has gotten worse since my pregnancy. I wake up every night from the burning and pain! The pain subsides after a while.

Comment from: Swanngirl 9, 25-34 Female (Patient) Published: May 27

I have had interstitial cystitis since I was 15, and it has gotten worse as I have gotten older. It hurts most at night, it hurts to take a shower, and simple tasks are hard.

Comment from: Nikka, 45-54 Female (Patient) Published: July 28

I came here hoping to hear what the pain is like to everyone. For me it is a constant burning in what feels like my bladder, but sometimes feels vaginal. Sometimes I have a pressure sensation that goes with it, but not always. It never hurts when I urinate. It seems my symptoms change from flare up to flare up. I'm just curious as to how other people with interstitial cystitis experience the pain.

Comment from: AlwaysaLady, 55-64 Female (Patient) Published: April 22

Three years ago I was diagnosed with interstitial cystitis (IC) and after having exploratory surgery and numerous amounts of antibiotics and bladder distentions, I am without any relief. I went to a holistic healer who suggested trying Benadryl once a day. I did and by the second day all the symptoms were gone and I have not had an attack since.

Comment from: jcampbell, 35-44 Female (Patient) Published: January 29

I have had interstitial cystitis for more than a year now and my pain has gone from mild to severe in a few months. I can't go to the bathroom without extreme burning and the pain after I go to the restroom lasts for at least an hour after that. It's made me have trouble siting, standing, even walking, the pain is so bad all I want to do is sleep. It got bad after a surgery.

Comment from: jodi1478, 25-34 Female (Patient) Published: February 06

I am 25 years old. I was diagnosed with interstitial cystitis two years ago. I have always had endometiosis, cysts, and tumors. I feel as if I'm always in pain. It was impossible to have sex with my husband because the pain was so bad. I had a hysterectomy because my gynecologist thought it was female-related, and after I had that done, I was still in pain all the time. So my doctor sent me to a urologist, and he tested me and told me I had IC. I take Elmiron 100 mg, three times a day and percocet as needed. I use vaginal valium before sex. My pain level is an “8” most all the time, and I get up about 10 times in the night to use the bathroom and about that many in the day. If I don't go to the bathroom as soon as I feel the urge, I will wet myself. When I do go to the bathroom, it is very painful!

Comment from: anniem, 65-74 Female (Patient) Published: February 05

I may have found a relationship between ZICAM Allergy Relief (inserted into the very first part of each nostril) and the pain of IC. I had a very bad flare up about 2 months ago, and I wondered if it had anything to do with taking a lot of allergy meds including this ZICAM. I have been free of pain for about 2 weeks, and today had an allergy attack, so took this ZICAM. All of a sudden, pain of IC again. I also took an inhalation of Advair because my chest seemed somewhat congested. Advair is just marvelous, but could it also be a cause of painful IC? It has helped the congestion, but has it also caused IC pain?

Comment from: recently married, 25-34 Female (Patient) Published: February 05

I have been living with ic for almost 2 years now. I do know my mother always complained of pelvic pain and urgency, but I guess I never really understood her. We both have it now, but we take different approaches to it. She decided she lived with it long enough and does not take medication -she lives with it-. I take Elmiron -have been taken it it for almost 1 yr. I experienced some relief, but as you know relapses when it likes to. Matter of fact I am up right now at 5:00 in the morning. No one else really understands what you go through and how exhausting the next day is with little sleep. The Urge is horrible, but thankfully no pain. I will try acupuncture since it brought some patients relieve, I am willing to try homeopathic meds if available.

Comment from: jodi, 19-24 Female (Patient) Published: November 19

I am a 23 year old university student who has dealt with IC for over 4 years. I was desperate to try anything to help since I was usually up at night anywhere from 10-24 times (ended up with severe insomnia as a result) and often had to make up to 42 trips to the bathroom during the day. I had to drop out of university and could hardly work. I tried everything from distentions, oral medications, instillations, and even some experimental medications. I was on a strict diet and using acupuncture to alleviate the pain (which surprisingly helped). After 2 years of no relief in sight, I had the sacral nerve stimulator implanted (which wasn't easy or pleasant, but worth it) and have since been enjoying a more normal life since! I still have had to watch my diet and avoid things like alcohol, but life is much more enjoyable.

Comment from: HP, 25-34 Female (Patient) Published: September 26

I was diagnosed with it three years ago. I was getting urinary tract infections every so often, but the last one I had didn't respond to antibiotics. My family doctor sent me to a specialist and after running all of the tests I was diagnosed with ic. three years before that I went through chemo and radiation for breast cancer and I thought my nightmares were over, but the ic has given me more pain and problems than the cancer. I was taking Elmiron, and feeling better, but then I quit taking it and my pain and urgency to go to the bathroom returned. I started taking my Elmiron again, but so far it's been 2 months and it hasn't helped. I pray that there will be a cure for this awful condition soon. My heart goes out to everyone with this problem, and you will be in my prayers. This might be helpful: I remember that I ate pineapple the night before I got my last flare up of ic.

Comment from: Msstarrgirl, 45-54 Female (Patient) Published: August 06

I have a lot of discomfort with my interstitial cystitis. I'm up one to two times every night to empty my bladder. The pain level is an 8, with 10 being the worst. My doctor told me that most people don't have the pain all the time like I do. I take Elmiron (100 mg) twice a day, and Ultracet for pain as needed.

Comment from: Red, 55-64 Female (Patient) Published: June 05

I've had interstitial cystitis since 1972. Citrus is a definite no-no for me. Too much acid.

Comment from: Michael, 55-64 Male (Patient) Published: November 23

I was diagnosed with interstitial cystitis six years ago. I've seen 12 to 15 doctors with no relief.

Comment from: susan, 45-54 Female (Patient) Published: July 17

I've been dealing with interstitial cystitis since 1993 and let me tell you I'm not the same person. My bladder dictates my every move and because of that I hardly ever leave my house.

Comment from: NACORAL, 35-44 Female (Patient) Published: April 14

I have suffered with interstitial cystitis for about 6 years now. I tried boric acid tablets that I make with vegetable capsules and insert one at a flare up. Works wonders. As for pain I stop stressing.

Comment from: Hope for all, Male (Caregiver) Published: March 20

For all of you who have interstitial cystitis. My girlfriend has it and more. I have been reading and the anti-inflammatory diet is a good start for all with this problem.

Comment from: c, 45-54 Female (Patient) Published: January 27

After I had the bladder sling/mesh surgery in 2012 for interstitial cystitis, I have had numerous urinary tract infections right after the surgery, then almost through the year in 2013 and now in 2014 I was referred to a specialists.

Comment from: Lady, Female (Patient) Published: August 20

Before being diagnosed with IC I had had many UTIs. After several very painful bouts where antibiotics did not help, I was seen by an ER doctor who prescribed hydrocodone 7.5 and Valium. This was a godsend. I will take the wooziness over the pain any day. My episodes last about a week, but only occur every two to three months.

Comment from: Beavcan, 55-64 Female (Patient) Published: May 21

I was admitted to the hospital Labor Day weekend in 2002, with what was thought to be a kidney stone. This was never confirmed, but my PCP wanted to find out more, so she sent me to a urogynecologist. He talked to me about what he thought it was, and I kept thinking, “oh, it's not that bad." It was. I "failed" Urodynamics, and had no idea inserting a catheter was that painful. The cystoscopy a few weeks later confirmed interstitial cystitis. I had no idea what this "IC" was. I had never even heard about it. That was December 2002. It is now May 2013, and I have been on disability for IC since April 2007. I now have cystos roughly every nine months, with some relief. Fortunately, I lived in the U.S. when it was diagnosed. Unfortunately or not, I now live in Canada. There are lots of medications available in the U.S. that are not available in Canada. Pyridium, for one, and Elmiron are not readily available here. I am lucky in that I have a really good urologist – one of the best in the area on IC. I was very lucky in the beginning to have a PCP who would not take not knowing for an answer. My urogynecologist in Connecticut made the best urogynecologist list in Connecticut; he was great, I miss him.

Comment from: ICsufferer, 25-34 Female (Patient) Published: December 18

I am a 31-year-old female diagnosed with IC six months ago. For quite a while it's been lots of pain. I had to work from home; I had to quit a job during the day. It helps when I sit on a warm heating pad. I am on Zoloft, Zanaflex and was prescribed Elavil. None of them really help. I take three Elmiron a day.

Comment from: yaya, 25-34 Female (Patient) Published: October 28

I started experiencing symptoms of interstitial cystitis around age 26. Since I also had fibroids & endometriosis, doctors concentrated on treating these two conditions. It took about 4 years before I was diagnosed with IC as well as endometriosis and fibromyalgia. Like most people with IC, the pain was unbearable. I was in and out of my doctor's office seeking relief from pain. I even had a spinal block done, but this too did not help. Over a 6-year period my life was at a virtual standstill as I had to rely on others to help me with most physical stuff. In 2006, I was referred to a pain clinic. Since I wasn't responding to my then current treatment regimen, he told me to take 100mg tramal 3 times a day, regardless of how much pain I felt. This resulted in an eventual turn around in my condition. In addition to Tramal, I take 25mg amytriptiline every night. This regimen has given me my life back. I'm now down to 200mg Tramal per day, as well as the amitryptiline. I still suffer from pain, but the highs & lows are manageable. It's now been two years and most people do not know I have a medical problem, unless I tell them otherwise. Most days I can put in a full day's work and I use my weekends to recover. I know which foods to avoid, as well as artificial sweetners.

Comment from: lady 1955, 45-54 Female (Patient) Published: October 24

I have had interstitial cystitis for 25 years. The only relief I get is to be on an antibiotic for bladder infection and one that also contains medication for the pain. I took urisid for many years and then prosed and now urelle. I have to be careful of caffeine and citric fruits as the tend to cause pain. It can definitely run your life. I always worry about where the bathroom is when I go places or travel. It's a lousy disease.

Comment from: Sue, 25-34 Female (Patient) Published: October 24

I am a 32 year old female, diagnosed wtih interstitial cystitis in Aril of 2007. Previously I had assumed it was chronic UTI's but multiple urine tests have shown otherwise. The pain is my worst symptom - to the point where I can't sit down, can't walk, can only hunch over and do the "pee pee dance" until the pain subsides with Pyridium. It's almost as though my bladder is spasming - that's the only way I can describe it to someone who hasn't experienced the pain. The Pyridium will help for a couple hours, but typically the episodes will last for days at a time. Strangely enough, I can't figure out a trigger - I can't relate it to foods eaten or activities. I do have to wonder if it is stress related. I've had several break outs of pain in the past couple of months and am considering asking my doctor for a trial of a daily medication. It seems that Elavil has some positive effects for others. I can go months without any problems though. Someone needs to discover some better answers for this horrible debilitating illness.

Comment from: Betsy, 55-64 Female (Patient) Published: September 15

I am one of the fortunate ones with interstitial cystitis because mine is avoidable if I abstain from beverages made with the sugar substitute, aspartame. Usually, if I consume 32 ounces of a diet soda (made with asparteme) in one day, the symptoms will appear. I have no difficulty with sodas containing Splenda. I am grateful to my urologist for identifying aspartame as a possible irritant.

Comment from: 55-64 Female (Patient) Published: September 15

I have had severe pelvic pain for almost a year, along with frequency and urge incontinence. My doctor says I "probably" have IC but can't say for sure unless a biopsy is done. Last month, I had an Interstim device (Medtronics) installed. My improvement has been marginal, but I was told that this device is sometimes prescribed for IC. Elmiron didn't work after six months, so I'm currently on Lyrica. It was very sedating at first, but I have high hopes for relief.

Comment from: Vee, 45-54 Female (Patient) Published: September 15

About six months ago, I was given a diagnosis of interstitial cystitis. I had been having severe pain for about one year. This pain started during my radiation treatment and after my chemotherapy treatment. At first, I just assumed this pain was from the cancer treatments and eventually it would go away. I've been taking Desipramine, which helped a lot up until two months ago. The pain came back, so I am also taking Elmiron. At this point, neither one of these seems to help. My pain level is about an 8 or a 9 most of the time.

Comment from: Stacey, 25-34 Female (Patient) Published: September 15

I have had bladder problems since the age of 5. I'm now 26. My doctor said it must be interstitial cystitis and gave me a lot of Cephalexin. So far, it hasn't helped. I am up at least eight times a night with the pain of having a full bladder, but of course, it's not full at all. Nearly eight years ago, I started getting excruciating pain when I emptied my bladder. Then it got worse, and the pain was so bad, I couldn't even stand up. The stinging sensation is breathtaking. For the past two years, I've been admitted to hospitals for tests. I was diagnosed with chronic interstitial cystitis in October 2007 and put on a course of treatment called Cystostat. I have to admit, I am feeling slight relief but not much. I have to take Dihydrocodeine for the pain and even with the treatment, I usually take two tablets a day. I can't hold water very long. I'm at the toilet every five minutes when I'm on a night out. I must have the bladder the size of a pea. I would love someone to find a cure for this thing because no one else I know can understand just how much this ruins your life. My life would be 100% better without it.

Comment from: Maggie, 45-54 Female (Patient) Published: August 27

I suffer with very bad bouts of interstitial cystitis with chronic pain and frequency where I can be up anywhere between four and eight times a night. This may last for two to three days, and then things settle down. Sometimes the periods between bouts can be two to three weeks; sometimes it's only days. I am not on any medications at present.

Comment from: jjmo1084, 65-74 Female (Patient) Published: August 27

I had been on a .25 hormone patch for 20 years after a hysterectomy. I decided to go off the patch in May of 2007. Then the chronic cystitis really clicked in. I have had a complete workup by a urologist including a CT scan. It is now August of 2008 and I still have an urgency to pee and pelvic pain. I have not eliminated a lot of foods. I do exercise every day by walking one or two miles. I am 74 years old. Also, the best relief I have found is from a low dose of an antibiotic (250 mg) a day. If I periodically go off the antibiotic, the infection returns within a week. I believe I have had this condition for many years. The patch made the bladder infections less frequent.

Comment from: Lea, 45-54 Female (Patient) Published: February 05

I am forty eight years old now. I have suffered from cystitis for 28 years, it was always related to E.Coli and triggered by intercourse. I was continuously treated with antibiotics. Now that I gave up on intercourse altogether, I have no more E .Coli infections but I have frequent need for urination and the wall of my bladder are always inflamed. Some days are better than others. If I overindulge with food and sweets the symptoms become much worse. I am not diabetic and my blood sugar level is normal.

Comment from: smellychelly, 35-44 Female (Patient) Published: February 05

About 14 years ago I had bladder pain so of course I went to a urologist. They kept giving me antibiotics, but the pain never went away. I finally was told about this Naturopathic doctor so I went to see her. I told her all my symptoms. She did a culture on me. Hello, no bacteria. There is no need to be on antibiotics if bacteria is not present. I was on them for so long that they can do major damage to your bladder wall. She gave me some paper work on IC and said, this it what you have. She then gave me all her little remedies to take. It worked! I get a flare up every now and than but it is usually from something I ate or drank. I never believed in natural medicine but I was sold.

Comment from: Alimum3, 35-44 Female (Patient) Published: February 05

I have recently been told I have IC. I've been having really bad pain in my bladder (I think). The Doc did a cystoscopy and lapendoscopy. He now believes I have IC. The only thing is I don't need to wee lots in fact quite the opposite. I only realize I need a wee when my bladder pain increases. I've been prescribed with Percocet which actually stops the pain but makes me very dizzy and wobbly.

Comment from: Tennisbam, 65-74 Female (Patient) Published: November 19

I have had IC for probably twenty years. For me, it is cyclic the severity changes from time to time. The pressure in my bladder refuses to let me sleep more than twenty minutes at a time. This has taken its toll on my quality of life. About ten years ago I was diagnosed with Fibromyalgia which has caused a tremendous amount of pain. For whatever reason, while I was going through radiation for Breast Cancer, my systems lessened. I would appreciate any help anyone could give.

Comment from: vernoti, 45-54 Female (Patient) Published: November 19

I was just diagnosed, but I don't understand, I never have to go. I had my ovary removed and the doctor said he found cystitis. Since my operation I have had pain and difficulty urinating but never had this problem before. Everyone has frequent urination, but I don't. The doctor said my nerves have been blocked that is why I don't feel the urge. Could this be right?

Comment from: angelwingsf38, 45-54 Female (Patient) Published: September 26

I have always had urinary problems but I finally got an answer when I just couldn't urinate anymore. I had a cystoscopy done and that is when I found out that I had IC. My doctor did the Bladder Instillation (Intravesical therapy), and it helped for awhile. Now I am looking at the oral medicine Elmiron to see if it will help. I can tell you this disease is not fun and does tend to run your life.

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