Loading...Imagine pain every time you pee. Then imagine having to go every 15 to 20 minutes. That’s what it can be like to have IC, also known as interstitial cystitis.
Although symptoms are similar to a urinary tract infection, IC has no clear cause. Certain foods or beverages may aggravate this inflammatory condition. IC can be very hard to treat, and those who suffer from it often feel frustrated.
Several years ago we received this letter:
“I have IC (interstitial cystitis), a painful chronic disease. I have urinary pain, urgency and frequency. It has also resulted in painful intercourse and waking every 30 minutes to an hour at night to use the bathroom. I go 15 to 25 times a day.
“I’ve become depressed and anti-social. I take Elmiron, Prosed/DS and Enablex. Most people I know think of my problem as a bladder infection. They aren’t familiar with IC.”
The cost of a month’s supply of these three medications is approximately $650. They don’t cure IC, and don’t always relieve the symptoms completely. That’s why a survey conducted recently by the Interstitial Cystitis Association found that many people with IC turn to complementary and alternative medicine (ICA Update, Summer 2009).
High on the list of helpful therapies is avoiding dietary triggers. These often include acidic or spicy foods. Alcohol and caffeinated or carbonated beverages are frequent culprits. MSG and hydrolyzed vegetable protein also may pose problems. Each person needs to keep a food and symptom diary to determine which foods are responsible, since they vary significantly from one individual to another.
One reader asked for advice on coping with IC:
“I was diagnosed with interstitial cystitis about a year ago. My doctors tell me that only diet can make a real difference. I’m frequently tired, perhaps because I can no longer eat most vegetables or concentrated soy products.
“I’m probably missing out on lots of important nutrients, but vitamin pills irritate my bladder. Avoiding soy is especially problematic because I am a vegetarian.”
We consulted urologist Betsy Kavaler, MD, about this question. Dr. Kavaler responded: “I can’t tell you how many women are as confused and frustrated as you are! Dietary modifications can be helpful for interstitial cystitis, but with moderation. I recommend that you reintroduce soy into your diet because you need the protein. Vegetables are essential as well for bowel function and for their nutrients. You might try taking Prelief before eating soy if you feel that it is irritating your bladder. Generally, it takes one to two days to notice if a food causes a flare.”
The product Dr. Kavaler mentioned, Prelief, was also identified as helpful in the ICA survey. This over-the-counter supplement contains calcium glycerophosphate to counteract the acid in foods and beverages like orange juice or coffee. A study in the journal Urology (Jan., 2008) confirmed that Prelief (a sponsor of our Web site) can be very effective for easing the symptoms of IC.
Whenever an inexpensive, widely available treatment offers help for a painful chronic condition, we like to let people know about it. IC sufferers can learn more about Prelief at prelief.com.
Robin in Vermont
Vermont
Please do not take my word for the following, because I know how crazy it sounds. You should be skeptical of any advice you don’t get from your doctor. That said, what follows is my story, and it’s true.
For the last three years I have had occasional difficulty emptying my bladder. I’ve told all of my doctors and specialists and have had numerous urine tests that showed nothing wrong (i.e. no infection). Only one sent me to a urologist — to check for “functional defects.” There weren’t any. Of all my doctors (I have 6), not one could tell me what was wrong; nor did they seem particularly concerned once they saw my ‘clean’ urine test results.
But this year, the symptoms have gotten so bad that it’s hard for me to sleep at night. This past week, I’ve been living in the bedroom just so I’m closer to the bathroom.
Then two days ago, I was looking on the Amazon website for a product that women can use to pee standing up (I’m up and down off the toilet so much my knees hurt). There I happened to see a review written by a woman describing her IC symptoms, and it was like the words jumped out at me with a little light around them. Some online research convinced me that I finally had my diagnosis.
Then . . . I got really depressed.
But I had this nagging thought that I’d missed something. I opened my laptop again, and saw an ad for Marshmallow Root, so I looked it up and read about how it’s been used “for thousands of years” as a digestive and urinary tract treatment. Okay. I’m still not buying it, but it is more knowledge.
I decided to read the Amazon reviews for it, and there is was again — a reviewer mentioning how taking it was helping her IC!
So, I bought some, and I’ve been taking it for two days. And it works! I take two capsules every 5 1/2 hours. While it’s in my system, I have little to no IC symptoms. The burning pain is gone and I can urinate normally. As it approaches 5 + hours since a dose however, the symptoms begin to come back. Two more capsules stops them again.
Best of all: Marshmallow root has no bad side effects, and it’s not expensive — the most I’ve paid for it is $13 for an organic source, but you can find it for $6 online.
It WILL however, lower your blood sugar, which is great as long as you are NOT on diabetic medication.
If you take diabetic medication PLEASE check with your doctor BEFORE taking marshmallow root! It could be dangerous for you!
Since taking it, I’ve kept a detailed record of how many times I’ve urinated or felt the urge to go, before and after taking marshmallow root, and the comparison is stunning. 27 times in one four hour period without marshmallow root! While taking it, I can go a couple of hours before needing to go, I don’t have the pain or the “urge” feeling, and when I do go, it’s normal and it doesn’t hurt.
I feel like I was given a miracle right when I’d reached the end of my rope. I’m writing her because I need to pass it on.
Amy
Virginia
My daughter was diagnosed with diverticulitis and IC last year only after several months of pain. At one point she suffered with kidney failure too. The only medication she was prescribed was antibiotics (frequently). She then began self medicating with organic baking soda, organic ACV, cranberry tabs etc. The urologist said her inner bladder lining was continually being removed and replaced. Strange disease.
During a bout of constipation I brought her some natural senecot for relief. The hext morning she was shocked to find tiny rolled up pinkish worms in her stool. (Senecot is a known intestinal worm fighter). Were worms a contributing factor? Don’t know. I went to a health food store and spoke with a knowlegable clerk. She suggested Mediterrean oil of oregano, black walnut combination to finish out the worms and to heal. My daughter now keeps a food diary, her bloating has come way down, as has her weight. Oh, and she now stays away from raw fish and other suspect food. She controls diverticulitis with her food diary.
Terri
I was born with Spina Bifida so bladder and bowl problems are common place for me.
In 1999 I had a bladder lift because it had fallen when I was pregnant. While recooping from this surgery, I tripped and my uterus literally fell and I had to have a hysterectomy. After which my bladder fell again. I waited until 2002 to have a bladder repair, and only then because I was constantly having bladder infections, and my bladder was coming out of my body.
I felt great for about two months after the lift, then my bladder infections came back and did not culture out and would not respond to antibiotics. My urologist scoped me and I had lesions in my bladder, so I was very careful about my diet. I was also at the time taking generic Paxil and generic Soma for my back pain.
The bladder pain from IC was intense and I was given generic pain meds, which did nothing to help ease the pain. My urologist started me on weekly instillation of sterile water, lidocane (I am allergic to lidocane so that had to be stopped), elimiron dissolved in the water, and an ulcer medication. After each instillation I would spike a fever and get wicked chills for about two hours.
My urologist had never heard of this happening before, so I would take Tylenol before my instillations, but I still would get a fever.
During this time, my neighbor was talking to me one day about her daughter having severe stomach pain and her Dr.s had a phone conference and decided to remove her from generic Paxil and place her on name brand only Paxil. This made her stomach pain completely stop. Something clicked in my mind and I weaned myself off my generic meds (Paxil and soma), my Dr. placed me on Cymbalta for my neurologic pain in my back instead. Guess what! My IC is now in remission for over a year!
There is something in generic meds that I am allergic to (Spina Bifida patients are allergic to latex and fruit, and I seem to be allergic to a lot more as I grow older). I have tried once during the past year to take generic muscle relaxers, and it aggravated my bladder and my urine got cloudy.
I am not saying that this is the answer for everyone, it just worked for me. If anyone asks me about IC, which I have been asked by a couple of women in the family I always first say “listen to your body, pay attention to what you put in your body and when your IC flares, and watch your urine to make sure it is clear and not dark”.
I would never advise anyone else to stop their meds without first consulting with their physician.
Rita
I wrote a comment earlier, but I have one question. Have any of you experienced blood in your urine? My doctor said it was from a lack of estrogen and prescribed a vaginal estrogen cream. I was doing a lot better until I drank a wild cherry seltzer and it hurt to pee and I could see blood. Two days later after drinking only water, my urine was clear again. My doctor did a cystocopy and seen a red spot which he believed was inflammation. He did a biopsy that came back negative for cancer. I would appreciate a response.
Rita
I’ve been treated for the past month with an antibiotic. Went to the doctor on Thursday, and still a small amount of blood in the urine and a little infection. I noticed that certain foods triggered the problem and thought it was my imagination. These comments have helped. I will try the organic apple cider first. I also experience itching in the pubic area. No, no other problems there. Feel better already knowing that there are alternative methods to at least try. By the way, my doctor also prescribed a vaginal estrogen cream.
CJ
I have suffered from I.C. since I was 35 yrs old, I am now 63. I was placed on most of the common meds that Dr’s prescribe today. Nothing really helped. I did notice that once my menstrual period stopped my symptoms were not as severe. I don’t eat most vegetables or fruit. I can eat Gala apples because they are low in acid. Vinegar is the most irritating and it is in many processed foods, esp. salad dressings.
Potassium is another item that triggers my I.C. and is also found in many foods such as potatoes and yogurt. You have to read the labels. I recently was placed on Lexapro for depression and found that it made all my I.C. symptoms vanish. It started to work on my I.C. after being on it for 6 weeks, it has to build up in your system. I hope that some of this info. helps those suffering with I.C. and only another person with I.C. can really understand the suffering you are dealing with everyday, every hour.
Judith Ann
CA
RE: Lexapro and IC. I just started Lexapro for depression and anxiety caused by my IC which I have had for 10 years (worsening in May). I’ve read several patients’ comments that the Lexapro helped their IC to the point of making symptoms vanish to the opposite point of causing flares. I am the 5th day in on taking Lexapro, and while it has eased my depression somewhat, today I am having an enormous flare (I woke up with it – which has never happened before.) I am scared. should I continue the Lexapro? I am also taking xanax for anxiety which causes flares, and my psych. said it’s ok to take while I get the Lexapro into my system and zolpidem (for sleep). I would appreciate any advice/experiences.
mls
I am writing this to tell people to keep shopping for a doctor that will listen to you and not make you feel like you are imagining your illness. I have just recently been diagnosed with IC after suffering from this for about 5 years. My former doctors all blamed it as a problem that goes hand in hand with Fibromyalgia.
I have been prescribed Detrol, Vasicare, Enablex, and now Toviaz. All of these medications badly effect my eyes, cause constipation, stomach distress and the Toviaz added nausea and headache. The incontinence continues. I am at my wits end and nearly broke from the cost of disposable pants. I am going through at least one an hour. I had a cystoscopy last Monday and the doctor tried to stretch the bladder because I am only able to hold a small bit of urine before having spasms. Unfortunately, he said that he could only stretch it a bit because “the bladder is as hard as a rock from too much irritation for too long”.
I am very frustrated because my doctors in the past did nothing to help me and made me feel like it was all in my head. I had the symptoms of bladder infections but the tests they ran didn’t show anything that “warranted the pain that I was in or the incontinence.”
Formerly I was told to drink as much cranberry juice as I could hold. This only made matter worse and added to my daily calorie count. Since I can’t tolerate any prescribed medication I would appreciate any suggestions that possibly have worked for someone else. Thank you.
ic-er
Hello Irene G.,
This is a response long posted after your comment, but in the event that someone with IC should read these comments. It sounds as though you have had a bad experience with bladder infections, which are microbe related. Cranberry juice can adjust the pH level of the bladder (making it more acidic) and therefore reduce the growth of microbes. Good to know that you’ve been able to reduce the infections.
However, IC is not microbe related and, in fact, cranberry juice being very acidic can be very painful for someone with IC. If you suspect or know you have interstitial cystitis, please drink cranberry with caution. Unfortunately, I found out the hard way how it could aggravate symptoms.
JL
My sister-in-law suffered from what was diagnosed IC. She went for many years taking antibiotics for bladder infections, Elmiron, and bladder irrigations. She finally went to a well-known medical clinic and was advised to use hormones which she uses vaginally and the problem has cleared up. She was in her 60’s at the time. This might be a solution for post menopausal women.
CS
Dru,
Thanks for your comment. My mom has been told that she’s too old for an operation, not that she would agree to having one in the first place. I will tell her about your mom. I’m not sure if any Dr. in our area would do surgery. Where are you from? How long was your mom in the hospital after the surgery? How many years ago did she have it?
CS
VETP
For IC try D-mannose.
Irene G.
Re:Interstitial cystitis, I am Australian 68 year old woman living in Perth I have suffered with intermittent Urinary Tract and Bladder infections over the years….in 2007 I suffered an extremely bad episode and was so ill that I lay shivering in bed for 2 days and because I hadn’t been to the doctors to get antibiotics I went into sepsis.
Eventually when taken the doctor she after treating me, immediately referred me to a specialist Urologist… he did an inspection of my bladder with a camera and couldn’t find any abnormality, however he prescribed 1500mg of Cranberry Extract in capsule form daily, quite a high dose, plus, a very low dose of Vagifem 25 mcg’s (Oestradol) vaginal pessary twice a week.
He said in his experience this formula helped to prevent a re-occurrence of the problem…. he was right, so far after 18 months no infections…. I couldn’t believe that the medical fraternity are suggesting that we take herbal remedies and I told him so… he’s said that he would use whatever it takes to help people and high doses of Cranberry has been clinically proven that it does works in many re occurring cases.
I hope that this will be a help to anyone else suffering this painful debilitating problem.
KO
I use 1/4 tsp of baking soda in 8 oz of water to help my symptoms of IC. I then followed by 2 tums in one hr. I also avoid spicy foods, MSG, tomatoes, chocolate, alcohol and caffeine. I drink a lot of water. Since I no longer have my menstrual period (always got worse the week before), I am better. I use a small amount of estrogen cream twice a week and take a small amount of Remeron (anti-depressant) at night. Hope this helps someone.
Cherie H.
You can purchase pelvic toner systems (balls) on ebay. Used in the privacy of your home and it helps a great deal with incontinence.
MB/pixelpixey
I don’t know if the following was a fluke and only worked for me. I suspect that a person’s pH level may be a contributing factor in IC – at least for me.
Following a recent bout with an UTI (a rare occurrence for me) that was treated with Macrobid, I was still experiencing some discomfort during urination. My doctor suggested it could be IC or another issue and stated that there are a number of drugs available. Not one to jump for drugs, I replied that I wanted to see if it would work itself out on its own.
About a week later (still experiencing discomfort), I ate some bad food that turned my stomach. So, to settle the abdominal distress, I drank about a ¼ cup of diluted organic apple cider in filtered water (about 1 part cider to 4 parts water – at least a tablespoon of apple cider). I repeated drinking that later in the day.
The next time I urinated, there was no pain or discomfort for a couple of days. When the urinary pain returned, I again drank diluted apple cider in filtered water a couple of times that same day and the next. And again, the urinary pains stopped – for a much longer period of time – I have been pain free for the last couple of weeks. The UTI that triggered this occurred this past October. If the urinary pain returns, I plan to buy a pH kit to test my theory that pH level is a pain/trigger factor.
Perhaps drinking a little diluted apple cider vinegar may work for you. Apple cider vinegar adjusts pH levels. If you are allergic to vinegars or apples, do not try this.
kk
Just a comment–I’ve had IC for 8 years…i cannot work, am depressed, have IBS and no longer lead a normal life. I truly wish and hope that more people will learn about this horrible condition. Most do not understand how debilitating it is. Also, not all IC patients are responsive to dietary changes..many different situations can trigger the pain, including stress, hormonal changes or hormones in general, depression, lack of exercise, and yes, diet too.
If anyone knows someone with this condition please take the time to listen and have compassion. The pain has been compared to cancer level and kidney failure levels ,and at times really can be this bad. There are no one size fits all cures or relief for IC…understanding and education are the best hope.
Dru
CS, my Mom was also incontinent and didn’t like to leave the confines of her assisted living room. She constantly leaked through pads. The doctor performed surgery to tighten her up, and now, about 6 months post surgery, she wears one mini-pad a day. My Mom is 85. Ther surgery is very minimal.
GA
Everyone with suspected IC needs to read “Headache in the Pelvis” by David Wise, PhD and Rodney Anderson, MD (Urologist at Stanford University).
Eliza
Patient: “I can no longer eat most vegetables or concentrated soy products.”
Doctor: “I recommend that you reintroduce soy into your diet because you need the protein.”
This is Exhibit A of why vegetarians don’t trust most physicians to have a clue how to treat vegetarians. There are many, many good sources of vegetarian protein besides soy. Duh. Many vegetarians don’t eat soy because of digestive issues or hormone issues, and they’re getting enough protein in their diet.
I hope the patient ignored the physician’s advice. The patient needs a good vegetarian nutritionist or dietitian. And the physician needs to get educated.
CS
Is there any help for my mom? She’s ninety years young and has an incontinence problem. She has tried various types of drugs that are now on the market, but nothing seems to help. She uses Attends pads (3 at a time), but still has accidents and is really afraid to go far from home. One doctor gave her permission for kegel therapy, but she refused. She is getting more depressed knowing that this condition is limiting her socially. Any helpful advice would be appreciated.
Bill, Boone, NC
Though the symptoms weren’t as bad for me as some describe, I kept getting checked for a uninary tract infection when none was there. I finally read about IC and started paying attention to my diet in addition to taking Prelief.
It concerns me taking something I don’t know that much about but I no longer have any problem. I take two with my morning tea and two at bedtime. If I have a fruit smoothie or something else that worries me, I also take one or two, depending on the food.
Strawberries and tomato juice were among the worst for me and I try to avoid them. I rarely will get near a strawberry (I do love them so) but tomato products are more difficult to avoid. When I have them, I take Prelief. Other fruits and vegetable don’t seem to bother me though, as noted, I take Prelief when I have a fruit smoothie.
If anyone has more info on possible negative (or positive) side effects of calcium glycerophosphate, I would be very interested in knowing.