Patient Comments: Interstitial Cystitis - Symptoms and Signs

Question:

What were the symptoms and signs of your interstitial cystitis? Submit Your Comment

Comment from: Lilabet, 65-74 Female (Patient) Published: September 06

I was diagnosed with interstitial cystitis (IC) in 2015. Very painful and I am unable to go out without knowing where the next toilet was. I had Cystistat injected into my bladder monthly, 8 in all. I have stopped eating anything acidic, no alcohol, no fruit drinks, fruit, no caffeine including chocolate, and the worst thing was sweeteners. Having stopped all the above I am now in remission, can go out when I want and enjoy life again. Please try giving up all the above and see how you are, boring I know, but well worth it.

Comment from: Patient Chronic IC withhem, 45-54 Female (Patient) Published: July 17

I had the bladder hypertension done in 2012, confirming the diagnosis of interstitial cystitis. My pain was like I was hit with a baseball bat in the pelvis. The relief from the surgery only lasted about 6 months. I live with pelvic and back pain. I am on pain medication, makes pain bearable. I have just seen the urologist again. Going to start something new I hope. I notice that stress seems to make flare ups worse. I have PTSS (posttraumatic stress symptoms). So it's a catch 22. I am learning meditation. I feel desperate and depressed.

Comment from: 65-74 Female (Patient) Published: March 09

I was diagnosed with IC (interstitial cystitis) in January, 2015. The pain I was experiencing was terrible. I had pain in my urethra, my bladder and in my rectal area. Once I was diagnosed with IC, I was given 2 treatments. One was pain medication and the other was RIMSO treatment (which is a solution inserted into my urethra). Neither of these treatments give me total relief. The pain medication does work at the time but I am requiring to take it more frequently and more dosage. I am at wits' end to find ongoing relief. I understand what each person with IC is going through.

Comment from: hana r, 25-34 Female (Patient) Published: December 16

I had been diagnosed with UTIs (urinary tract infections) for about 6 years before finally being put into the emergency room from bad pain. They checked my urine and found a large amount of blood but no bacteria. So finally I was able to go to a specialist to get diagnosed with interstitial cystitis last year. I had to have my uterus checked first as well and it was all clear. They finally could diagnose me with a cystoscopy and found that a large amount of my bladder wall was covered in lesions and was bleeding. My symptoms were frequent urination and urgency, heavy feeling in my bladder area, pain from the front to lower back, feeling tired and sick until I emptied my bladder, needing to go again soon after, blood in urine and no bacteria.

Comment from: 4usully, 45-54 Female (Patient) Published: January 29

Before my diagnosis of interstitial cystitis (IC), I had suffered with intermittent and sometimes unbearable pressure in my bladder. I thought it was due to the fact that I was diagnosed with a large fibroid in my uterus. Well, soon thereafter, I started experiencing pain, and urgency. Sometimes, I even had stabbing pains in my urethra. I was told by a urologist that it was most likely IC, and that I needed to have a cystoscopy and hydrodistention performed. I have found that certain foods make the pain worse, so I avoid them. I am just living with it the best I can; along with fibromyalgia, and chronic pain disorder.

Comment from: palesa, 35-44 Male (Patient) Published: July 11

I had a flu few days ago and went to see a doctor. He injected me and gave me some medicine, Moxymax diclofenac, and I experienced some dizziness and it's too much.

Comment from: MissyA, 13-18 Female (Patient) Published: January 05

I had about 3 epidurals years ago, and they helped for a while, and no side effects except for a bad headache for days. But I am getting ready to start with them again and they have changed a lot since I had them back in 2000. I was put to sleep for mine. So I am a bit nervous. And I have had the spinal fusion done, which gave me nearly 12 years of pure relief and almost a normal life, except having to watch what I lifted, etc. If this new course of epidurals do not work, it is back for another fusion for me.

Comment from: Blessd4lif, 45-54 Female (Patient) Published: September 23

I had recently had abdominal surgery and came home with a catheter in. After the catheter had been removed, I started passing blood. I went to the doctor and had lab tests done and all were normal. The bleeding stopped but I started having to go to the bathroom more and more often. One night it was every 6 minutes. Anyway, interstitial cystitis (IC) was a new diagnosis at the time. I went to the urologist and he told me that I had IC after he'd looked at my bladder.

Comment from: SmokyMtnLady, 55-64 Female (Patient) Published: September 17

After suffering with reoccurring bladder infections and painful bladder, and visiting 4 different gynecologists and urologists I was finally diagnosed with interstitial cystitis (IC) in 2004. The last urologist I visited, instilled my bladder with the potassium solution to test for IC and I felt the pain from the solution. For me, the IC causes bladder spasms, along with symptoms of fullness, soreness, and tenderness in the bladder. I do not get the extreme urge to urinate, nor do I get extreme pain. However, I do have frequency, along with a dull throbbing pain in the bladder and pubic bone area. When I have a flare-up, the tenderness and soreness is so severe I can hardly raise myself out of bed or up from a sitting position. I get very sore and very tender, even radiating to my back! Taking hydrocodone seems to calm down the symptoms. But, Elmiron has been a god-send for me, along with taking amitriptyline and Atarax, and taking warm baths, or using a warm moist cloth on my pubic bone/bladder area. I rarely need the hydrocodone any longer. Luckily, I seem to go in remission for longer periods of time than when I was first diagnosed. My last remission was for 5 years. I watch my consumption of caffeine and acidic foods. Sitting for long periods of time causes my symptoms to be more severe.

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: Killashandra, 35-44 Female (Patient) Published: May 13

Okay, my experience with interstitial cystitis (IC) is not quite typical. In 2002 I had gastric bypass. I was 150 lb. overweight and have polycystic ovarian syndrome (PCOS) and my doctor said that patients with PCOS did well and most of the symptoms disappeared after the surgery. So I had it. He was right, by the way. Anyway, a year later I was having pain that was like the pain from kidney stones. I had had one of those about 10 years earlier, so I do know exactly what that pain is like. So, after describing the pain, I was given pain medicines (Vicodin) and told to try to pass the stone. After about two weeks, I still had the pain and the doctor decided to x-ray for it. But she couldn"t find the stone. I had an ultra sound, and still no idea why I had this pain because there was no stone. I went to see a proctologist who did a colonoscopy, and couldn"t find the reason for the pain. Then we tried a urologist. I went in for out-patient surgery with him, and he did the distention of the bladder. (I am never doing that again ever.) When I woke up he told me that I did have IC along with Hunner"s ulcers. (Ulcers in the bladder.) We had hoped it would have been one, or the other. Lucky me, I got both. I went into remission without any pain for five and a half years before the IC came out of hiding. Now, I have pain, but it"s random, not daily and sometimes not even monthly. I am not on any prescriptions for it, but I have increased a daily allotment for Benadryl (or generic) which one study is showing that it is reducing the symptoms. So, that"s my story.

Comment from: Judy, 45-54 Female (Patient) Published: February 04

I was just diagnosed with IC (interstitial cystitis) 3 months back. In 2007 I had a total hysterectomy and during the surgery my colon was nicked and three days post operation I had developed an E. coli pelvic floor infection. The infection ruined my colon. I have had eight abdominal surgeries over the last seven years. Including a bowel resection in 2009 as well as several laparotomies. Finally in 2011 my colon doctor said I have to have an ileostomy. I was having severe nonstop pelvic floor and lower back pain since the hysterectomy. I have also been seeing a pain management doctor since this nightmare began. I have been on a Fentanyl patch and Vicodin ever since. The pelvic pain has never gone away. It wasn't until a little over two years ago that I noticed that there was anything wrong with my bladder. When I was in the hospital during 2007 I had a urologist see me. Well, he did a cystoscopy and saw nothing abnormal at that time. So they had ruled out a bladder issue and focused on the colon. It took five years to try to fix the colon, so looking back I understand why no one thought that the infection was slowly destroying my bladder. After the ileostomy was when I stared to notice a change in my bladder habits. I didn't give it much thought. I never mentioned it to my doctors or really thought there was anything wrong. All I knew was that the pelvic floor pain from the infection was getting worse and worse. My pain medications were no longer working. I couldn't even get out of bed or go anywhere. I must have gone to the emergency room that summer of 2011 five times until my colon doctor sent me to a gynecologist/urologist/pelvic floor doctor. I had surgery two weeks ago. She did a cystoscopy with hydrodistention. The pictures were not good news. She started me on Elmiron which is very expensive where I live. It coast $700.00 a month, which I'm not sure we can afford for a whole year. Plus I have to do the bladder washes twice a week. Now my pain doctor wants to start weaning me off all my narcotics. She thinks I don't need them anymore because I started the Elmiron. I told her it would take months maybe a year to even see any results and it may not work at all. So now my stress level is sky high.

Comment from: Lynn, 55-64 Female (Patient) Published: March 20

I have had pelvic pain for years now and it really bothers me that if I really have interstitial cystitis (IC), when I had a colonoscopy the gastroenterologist only found benign polyps, which he removed. My gynecologist did a transvaginal ultrasound and they could not find my ovaries and my family doctor sent me to the urologist and right away she said I know what your problem is, you have interstitial cystitis. She immediately put me on Elmiron 3 times a day and she never did any testing on me to give me that diagnosis. I am not happy with the Elmiron because it is very expensive and I do not like taking a medication that may not be the right one for me. I have discussed this with her and she is determined I have IC. Now this is a thin blood thinner and you have to go off this for a week if you are having surgery and I just had a severe flare up that I thought was a bladder infection which my family doctor took a urine sample and it showed no bacteria, but lots of inflammation.

Comment from: Tina57, 55-64 Female (Patient) Published: October 08

Symptoms and signs of my interstitial cystitis are that I am in constant pain of some form or another! It's grueling pain: one day my hips and back down my legs, then another day my pelvic area and bladder are on FIRE! I feel like my body is toxic to boot!

Comment from: ahennasey, 25-34 Female (Patient) Published: February 15

I have had interstitial cystitis for almost eight years now. I can tell you it is a very painful experience. I have done everything from changing my diet, cutting down on smoking, drinking more water and exercising, but nothing seems to work. I have had many bladder distentions, although they are supposed to last for a couple of years it never does for me. I am in pain every day of my life to the point where it puts a damper on my life.

Comment from: Ramona, 65-74 Female (Patient) Published: February 24

Have had IC for about 12 years. At first was diagnosed with bladder infections and took antibiotics for years. Was diagnosed with IC about 6 years ago. Had all the treatments that are available and took pyridium all the time for the pain. About 2 months ago I had a sinus infection and took Aleve for it. After 3 days of Aleve I realized my bladder was no longer bothering me. I take an Aleve 220 mg. every morning now and have not had any problems at all in 2 months. My urologist told me to keep taking it. It may not work for you but is worth a try. I can't believe the difference - only go to the bathroom once at night and usually 5-6 times during the day. I drink about 64-96 ounces of water every day to keep everything flushed out.

Comment from: 75 or over Female (Patient) Published: September 15

I was diagnosed many years ago with IC through the cooperative effort of a wonderful family doctor, allergist, and urologist. I had suffered pain for many years before the diagnosis. The allergist placed me on a strict diet for one month, then we began to reenter foods one at a time to find the trigger. I have been able to control the IC since that time as long as I avoid corn, shellfish, and several fruits. If I do eat one of these foods, then approximately 24 hours later I start experiencing pain and it continues for several days.

Comment from: Shelley, 35-44 Female (Patient) Published: July 19

Hi I have been under a Urologist in Brisbane for over two years now for chronic cystitis. I have moved away to the country 12 hours away. My Dr put me on Endep for Cronic cystitis. After some playing around with dosages I have been pain free apart from the occasional day. I have been taking 1- 50mg tablet at night. I however find that in this time I have put on 14kgs. No amount of exercise or lack of food helps. I am a small eater, always been active and a size 10 -60kgs. I now find I'm struggling to fit into size 12/14s and weigh 74kgs and my feet swell up. I went on line to see what the side effects for endep are and found that excessive weight gain that can't be controlled is one, also fluid, another symptom. Endep does work well for me. I have tried decreasing it and even going off it altogether as advised by my Doctor, but found that the symptoms came straight back. I need to go on something else but don't know what. Something that won't make me put weight on. I have been going to the gym for the past 1 1/2 years.

Comment from: Lorraine, 45-54 Female (Patient) Published: January 21

I am a 52-year-old female and have been diagnosed with IC for just over a year. I have urinary frequency and pain when my bladder is empty. When the condition is at its worst, I cannot drink any acidic drinks and have been advised to give up caffeine. I have had cystoscopies twice in the past two years and both times areas of "chronic inflammation" were seen and subsequently burnt off. On the first occasion, my consultant urologist thought that I had bladder cancer but pathology reports were just chronic inflammation. She then thought it was an ulcer but pathology said just it was just chronic inflammation. Both times my symptoms improved after these areas were removed, but gradually they returned. I am now having bladder instillation every month, but the symptoms are gradually returning. I try to drink a lot of water and am currently not drinking tea or coffee, as this seems to make the frequency worse. Sex is not painful, and I do not have severe pain on urination; the pain is mainly when I drink acidic drinks and my bladder is empty.

Comment from: chalker58, 55-64 Female (Patient) Published: April 01

I have the symptoms of interstitial cystitis, the pain and frequent need to urinate. I"ve done some research and found that taking corn silk capsules or tea really helps. I purchased the capsules and will see how it goes.

Comment from: Santafe, 55-64 Female (Patient) Published: August 08

I was diagnosed with bladder infections from the time I was 20 and went through many painful procedures, including barbaric urethra dilations. Finally, when I was about 48, I went to another urologist who mentioned IC. He suggested I stop eating citrus, aged meats and cheeses, and drinks with caffeine or alcohol. He also prescribed Elmiron. For the first time in 28 years I didn't have pain. Since retiring I have stopped Elmiron, but I stay away from citrus and caffeine. I am so thankful for that urologist who told me about IC.

Comment from: Sadie, 35-44 Female (Patient) Published: August 08

I am a 42 year old female. I am currently in the process of being diagnosed with IC. For the last six years I have been torn between having bladder, urinary tract infections, yeast infections, and or bacterial infections. Many times I have been to the doctor with a burning sensation in my vaginal area. I have been tested several times for any sexually transmitted diseases, and always came back with negative results. Finally, I started researching my symptoms and came up with IC. I have had the scope performed and nothing was found several years ago. I drink a lot of decaf tea with lemon. I tried cutting down on the lemon, and I have seen some improvement. I have started to notice that I have to use the restroom and urinate more and more frequently. Hope to find some relief soon.

Comment from: Janrose, 45-54 Female (Patient) Published: July 09

I suffered from IC for about 1 year. I tried to limit the foods on the list provided by my Dr. But it didn't help much. I didn't realize that it was mainly the diet cola that was the cause of my IC problem, I am 99% better since I quit diet cola..I used to consume about 2 cans per day.

Comment from: Elmiron, 65-74 Female (Caregiver) Published: February 06

My mother suffered with interstitial cystitis. It was horrible. She was in such pain all the time. She ended up hardly being able to walk because of the pain. The doctor gave her pain medications and Elmiron. Nothing helped. When I would help her to the doctor for her appointments they would just look at her like it was all in her head. It is a terrible disease!

SLIDESHOW

Urinary Incontinence in Women: Types, Causes, and Treatments for Bladder Control See Slideshow
Comment from: coley, 75 or over Female (Caregiver) Published: January 03

My 81 year old mother has been dealing with interstitial cystitis for over ten years. This frail, little old woman is going thru hell and I am not sure what else we can do. She is on oxycodone 3 times a day and supplements that with extra-stength Tylenol. She is in constant and severe pain she does not have symptoms of frequency. She sits with a hot water bottle over her pelvic region. This disease has made an invalid of her. She can hardly walk; when she stands for over 5 minutes she suffers even worse for the remainder of the day. She has been to several urologists, a gynecologist and even a neurologist. We are at our wit's end. Even on her pain medications she states her pain is at an "8". I can hardly bear to be around her. She feels horrible all the time, it's so depressing.

Published: September 26

Most women have had a bad bladder infection. IC is like having one all of the time. One thing that helps me is drink water only. NO tea, coffee, soda, juice, alcohol. It will help. Also a supplment that helps is L-Argintine.

Comment from: brenderH, 55-64 Female (Patient) Published: January 26

I'm thinking interstitial cystitis is a possibility for what I've been experiencing this last week. I've had countless bladder infections in the past, I am incontinent, and I have had a urethral sling operation that was only mildly effective. This week I've awakened often during the night with bladder pain that is only relieved by urination. I went to the doctor and was told there was blood in my urine, and he prescribed Bactrim. After three days I saw no improvement, and he switched me to Cipro, which has always helped my bladder infections. Again, after three days, there has been no improvement. I was starting to fear there was a problem with the sling (I've read that they can erode the skin where they are attached), but the symptoms of interstitial cystitis make sense. Is there an increased risk of bladder cancer with interstitial cystitis? Both my father and his grandfather had bladder cancer.

Comment from: Ma ma G, 55-64 Female (Patient) Published: March 21

I have had IC for almost 10 years. I had a two-year remission but now it is back--probably due to a yeast infection, vaginitis, and stress. I am just recovering from shoulder surgery and the death of my father, so that explains the stress. I'm interested in hearing about natural treatments for IC. I have thyroid, osteoporosis and chronic fatigue issues. It seems that there is a chronic inflammation that causes these issues. I am going to return to my nutritionist and try acupuncture again.

Comment from: Sharyn, 55-64 Female (Patient) Published: November 13

I have had a sharp stabbing pain from the outer area or my vagina radiating to my left ovary area. This increased over six months with several bladder infections/UTI with the pain increasing 2-3 on the pain scale. Then I ended up having such severe pain that I was screaming the house down and ending up in hospital. I had six of these bouts with nothing being done other than staying in hospital, having tests which told the docs nothing. Just continued pain relief and antibiotics. Finally had a cystoscopy and biopsy and it was agreed that it was Chronic Cystitis. After reading this article, I believe it is Interstitial Cystitis related to my MS.

Comment from: Gpugh, 25-34 Female (Patient) Published: April 26

I'm 26 now and had interstitial cystitis since I was 15 but it wasn't diagnosed till I was 18. I had to have a biopsy to test for this debilitating condition. I had bladder washes, tablets and had been turned down to have sacral nerve stimulation and was told my condition wasn't severe enough even though I need the toilet and go up to 30 times a day. My urologist is seeing me next Tuesday the 3rd may 2011 really hope it helps.

Subscribe to MedicineNet's Women's Health Newsletter

By clicking "Submit," I agree to the MedicineNet Terms and Conditions and Privacy Policy. I also agree to receive emails from MedicineNet and I understand that I may opt out of MedicineNet subscriptions at any time.