Health Conditions

Interstitial Cystitis – Not Just a Bladder Infection

Barb Zarnikow woke up one day feeling like she had the worst bladder infection of her life. Her extreme pain felt like acid was being poured into her bladder or that her bladder was being cut up by broken glass. She had a constant need to urinate. In fact, the urge was so strong it was painful. At times, the pain was so bad that she just wanted to stay in bed with a heating pad on her abdomen.

Repeated urinalyses never showed any signs of infection, but antibiotics were often prescribed, which seemed to help only a little.

“At the worst point during this journey, I couldn’t make a 20 minute drive to work without stopping along the way to use the bathroom,” recalls Zarnikow. “I was going to the bathroom at least 40 times a day/night.”

“At the worst point during this journey, I couldn’t make a 20 minute drive to work without stopping along the way to use the bathroom,” recalls Zarnikow. “I was going to the bathroom at least 40 times a day/night.”

Unfortunately, in struggling to get a proper diagnosis, Zarnikow experienced these symptoms for five years – until she was finally diagnosed with interstitial cystitis in 2000.

What is interstitial cystitis (IC)?

The Interstitial Cystitis Association describes IC as a bladder condition that usually consists of multiple symptoms. Most patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, along with urinary frequency and urgency.

Other names for IC include painful bladder syndrome, bladder pain syndrome, and chronic pelvic pain.

IC symptoms can be different for everyone. Some believe that there may be additional subtypes of IC: non-ulcerative and ulcerative. The ICA says that 90 percent of IC patients have the former. Patients who have the latter usually have Hunner’s ulcers, or patches, which are red, bleeding areas on the bladder wall.

According to the ICA, three to eight million women in the U.S. may have IC, which accounts for three to six percent of all women in the U.S. Women used to be ten times as likely as men to have IC, but now they’re only five times as likely. The reason for this difference isn’t known, says Dr. Robert Evans, MD, associate professor of urology at Wake Forest University and a well-known IC researcher and medical educator. He says it’s possible that the actual difference is even less as many male patients with IC symptoms are diagnosed with chronic prostatitis when they actually have IC.

There is a slight genetic component to IC, with a familial incidence of 10 percent, says Dr. Kristene Whitmore, MD, founder and director of the Pelvic and Sexual Health Institute of Philadelphia. The likely conclusion – and one researchers have found – is that IC doesn’t discriminate. Anyone of any age or race can develop it.

What causes IC?

The exact cause is unknown. Researchers have identified factors that may contribute to the development of IC, however. The ICA says that many researchers believe a trigger (caused by one or more events) may initially damage the bladder or bladder lining, ultimately leading to the development of IC. Some of these triggers may include:
• Bladder trauma (such as from pelvic surgery)
• Bladder overdistention (such as onset after long periods without access to a bathroom)
• Pelvic floor muscle dysfunction
• Autoimmune disorder
• Bacterial infection
• Hypersensitivity or inflammation of pelvic nerves
• Spinal cord trauma

As Dr. Evans explains, “It is felt by many investigators that the root problem is an abnormal lining to the bladder known as the glycosaminoglycan or GAG layer. This mucus layer in the bladder protects us against the naturally occurring acid in our own urine and for reasons that are unclear, it can break down, leading to the passage of acid and potassium across the defective barrier layer. When the acid leaks across, it causes a release of histamine from inflammatory cells, which triggers a response in nerve fibers. When they fire, it causes severe pain.”

Interstitial Cystitis – Not Just a Bladder Infection2

Diagnosis

It used to take up to seven years to be diagnosed with IC, but now it can be less than two years, says Dr. Whitmore. The average age at diagnosis is about 40 years old. Dr. Evans says he has children as young as eight as well as elderly patients diagnosed well beyond retirement age. Most of his new cases are women in their 20s or 30s.

There’s no definitive test to identify IC. Zarnikow hadn’t even heard of IC until she read about it in a magazine and realized that her symptoms matched the ones described. She found the ICA website and educated herself about the condition. She also spoke to a patient advocate. At this point, Zarnikow had been going from doctor to doctor to get a diagnosis. She actually told doctors that she suspected she had IC. One doctor told her there was no such thing as IC. Another did a bladder biopsy and told her she didn’t have it because she didn’t have Hunner’s lesions; he said she simply had a chronic inflammation of the bladder lining.

“Unfortunately, at that time, many doctors believed that the absence of Hunner’s lesions ruled out IC,” Zarnikow says. “The diagnosis of chronic inflammation of the bladder lining is IC – with or without lesions. By the time I was properly diagnosed, I had developed Hunner’s lesions!” Her diagnosis finally came when she met with an urogynecologist, a doctor specializing in female urologic and gynecologic issues.

Treatment

There is no cure for IC, but there are treatment options. Nothing works for everyone, however. Dr. Whitmore says that treatment is multimodal; all pelvic conditions must be treated. She lists some treatments: low acid diet, bladder analgesics, physical therapy, Botox, sacral nerve stimulation, home exercise programs, fiber and water, counseling, and medications. Dr. Evans adds biofeedback and stress management to the list.

Another treatment that has been found to help is bladder instillation, which involves filling the bladder with a medicated solution that includes the drug dimethyl sulfide (Rimso-50), also called DMSO. In this procedure, a narrow catheter is guided through the urethra to fill the bladder with the medicine, which is held inside for about 15 minutes before it’s drained. This can be repeated weekly for a period of 4-8 weeks. DMSO can pass into the bladder wall and has been shown to reduce pain and inflammation.

Medication hasn’t worked for Zarnikow. She’s tried natural supplements, but hasn’t found anything that’s really helped. Bladder installations have been helpful, acupuncture has helped some, and pelvic floor physical therapy has helped tremendously. She also does yoga, is careful about her diet, and tries to avoid trigger foods. Resting when she doesn’t feel well is crucial.

Future treatment

There are several exciting treatment options on the horizon, says Dr. Evans. One is Liris, a device that can be placed in the bladder where it releases lidocaine continuously. It’s been shown to decrease pain and has also eliminated ulcers. There’s also a new oral agent called AQX-1125 that shows a significant decrease in pain; it’ll be studied again this year in a larger trial. There may be new clinical trials for Tenazumab, a medication that will help prevent nerve growth.

Living with IC

Zarnikow says that IC affects every aspect of her life. Even simple tasks can seem daunting on bad days. Any time she goes anywhere, she worries about being able to find something that she can eat, or if there will be a bathroom. It’s depressing and causes anxiety.

The good news is once you learn your triggers and ways to manage symptoms, living with IC is easier. Zarnikow finally decided that she wasn’t going to let IC rule her life. She lets people around her know that she has it and how it affects her, so they understand her behavior. She tries to find humor in situations that arise.

The good news is once you learn your triggers and ways to manage symptoms, living with IC is easier. Zarnikow finally decided that she wasn’t going to let IC rule her life. She lets people around her know that she has it and how it affects her, so they understand her behavior. She tries to find humor in situations that arise.

“I think that often people, women especially, need to give themselves permission to spend the day in bed if they’re feeling bad, and that’s ok,” says Zarnikow. “But you also need to tell yourself that you won’t use IC as an excuse to get out of doing things you don’t want to do.”

Zarnikow says that knowledge is power. She recommends educating yourself upon diagnosis and keeping track of food and treatments, and being willing to try until you find a doctor or something that helps. Support is extremely helpful.

IC is an invisible illness, “because most of us who have it don’t look sick,” Zarnikow says. It’s a real condition. “We don’t just have small bladders and wearing Depends won’t solve the problem,” she adds. “The pain IC causes sometimes feels unbearable and people with IC need understanding from those around them.”

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Lisa A. Goldstein

Lisa A. Goldstein

Lisa A. Goldstein is a freelance journalist with a Master’s in Journalism from UC Berkeley. She has two kids, a love of books and sweets, and wishes her metabolism is what it used to be.

12 Comments

  1. Lana
    July 7, 2016 at 8:51 pm — Reply

    Thank you so much Lisa, great article! I learned acouple of new things about IC. I was recently diagnosed with it and It took my doctor over a year to figure it out. I started elmiron a month ago. I’m also doing pelvic pt. We are looking into acupuncture too. The bladder instillation work too. Definitely going to share with my friends & family. It’s unbelievable how it goes undiagnosed for so long.

  2. josephine lile
    July 7, 2016 at 10:03 pm — Reply

    Hi I have IC I was diagnosis after five years my Dr. put me on Vesicare and then after six yrs. later a inter-stem was put in my hip .I hope any one that has IC will go to their Dr. and get on Vesicare and then have the surgery.It gave me my life back.

  3. Kristina Fox
    July 7, 2016 at 10:14 pm — Reply

    I love your article. I suffer greatly from IC. I look forward to finding out more about these new treatments. I do bladder cocktail instillations of Heprin, Sodium Bicarbonate & Lidocaine. I’ve also tried DMSO treatments. Next I want to try Botox. I also have bladder distentions every year so I am not urinating 40x a day. The pain is insanely intense at times and I don’t have any support at home but I push through! Great info you have here. Thanks!

  4. Marilee
    July 7, 2016 at 10:21 pm — Reply

    The title of this article is misleading … Most people with IC do not have a bladder infection at all.

  5. July 7, 2016 at 10:46 pm — Reply

    Hi my name is Michelle, I have lived with IC for 12 years (took 2 to get diagnosed) and at one point shared this disease with another, endometriosis, until i had a hysterectomy 3 years ago. I understand the struggles, I live in Canada, we do not have much support, I have used this site (Interstitial Cystitis Association) to educate me on diet, and exercise, hiking helps me, I also use traditional medicine along side supplements such a marshmallow extract. Marshmallow extract has been a life saver for me, took about three months to work, but when it finally did, huge difference. Diet of course. Finding my triggers. I also take a low dose of percocet, one a day half at a time,(I increase half again later during flare-ups, this cuts the flare-ups in half) as for me the low dose of opium calms the bladder along side the marshmallow extract, antihistamines work wonders as well. I am lucky to have finally found what works for me, i am also on elmiron, though most know this is very expensive. without this entire concoction, reducing stress, diet , excersise, and my medications and supplements, i would be , well probably not up to writing this. This is hit and miss for everyone, and i hope it doesn’t take you as long to find what works for you, and like in my case might be many combinations. I am not a 100% pain free all the time, but i now go through periods of having no pain, which i haven’t had in a long time. Good luck to anyone just starting on this road, keep searching and asking questions, you’ll get there too!

  6. Gibber
    July 8, 2016 at 8:44 am — Reply

    I lost my bladder to IC when I was 28. The frequency never stopped even with a urostomy now. I’m now 45 and have since been diagnosed with lupus. All these years later I find out it’s lupus that caused my IC.

    • Ellen Wolfson
      July 23, 2016 at 12:28 pm — Reply

      I lost my bladder to IC at 27. I am now 47. I have an Indiana pouch which gave me life back and my sanity. I have had 4 surgeries since. My first surgery was one month after the bladder removal and was due to a fistula. The second one was a few months later due to a kidney obstruction. My 3rd surgery was because I leaked from my stoma and had to wear a bag for 6 years. I started having pain again, but not as bad. I went from Dr. to Dr. and no one would touch me. I was told my bladder (pouch) had once again shrunk and was told I had IC back in my pouch. By the grace of God I finally found my Urologist at UCLA (Shlomo Raz) .. in 2010. He agreed to see me. The first time I saw him he said “I can fix you” and he did. He ended up reconstructing my pouch and adding more intestines so I could hold more. I haven’t leaked since and the pain is very minimal now. I can go hours without having to go to the bathroom and I sleep thru the night. He is truly my God! The 4th surgery was just last month in June 2016. I had my 5th bowel obstruction due to the adhesions that you get from numerous surgeries. The adhesions continually build up on your pelvic wall, etc. This time the obstruction was so bad I had to have surgery to un loop 5 loops in my intestines and remove massive scar tissue packed against my pelvic wall and other areas. I’d say my situation is not typical of having your bladder removed so I don’t want to scare anyone off. I don’t regret having this surgery. My bladder was end stage.. it was the size of a golf ball, hard as a rock so nothing would even temporarily expand it. It was full of ulcers and could only hold 25cc’s. I tried EVERY treatment to no avail.
      After all that, still, I would do it all again. That’s how much relief I got from the extreme pain and going to the bathroom 60 times a day.

      • Carrie
        July 26, 2016 at 12:40 pm — Reply

        Ellen,

        Wow you’ve been through a lot. I have the urostomy pouch and I’ve only had that one surgery. My bladder was end stage too the size of a Canadian Loonie and very ulcerated. I’m very grateful I’ve only needed surgery around this situation to have my bladder removed and none since. Having said that I having a Urostomy. I have to hook up to night drainage bag to sleep. That allows me to sleep through the night. A year and a half ago I was put on Perocette to help deal with the wicked lupus pain. To my relief I’ve discovered it has also significantly slowed down my frequency and in that way given me a part of my life back. After over 20 years of peeing every couple of mins. Not being able to leave the house. Now I can a bit freer. For that I’m grateful

  7. Priscilla
    July 8, 2016 at 9:02 am — Reply

    I suffered from this for two years. I did the dmso treatments and they helped although the treatment itself was like medieval torture. But then i went to a ealk in clinic and a doctor told me he thought i had a yeast infection. I had been to my gynocologist and told her my symptoms but she never tested me. This doctor put me on medication for ir yeast infections and it worked within a week! I’ve not had tbe problem again and its been 24 years.

  8. lorraine Cressey
    July 8, 2016 at 12:56 pm — Reply

    I have had cistitis since I can remember , although there have been periods in my life that I have had some relief..most of the time i get flares every month ..later on in life to discover I also have endometriosis , here there seems to be a link but as yet we are not sure if I have endo in my bladder as well …. I also suffer from yeast infections ..probably due to the over dosing so many years on antibiotics for infections ..lately there are no e. coli infections because I have been treated with autovaccine but now I have ic cistitis ….persistent isn’t it !!! So now my life is …diflucan once a month and live yogurt plus latest discovery of cocoonut oil , anticonceptive pill or injections to prevent periods for the endo and diet ..no alchohol or spicey foods or vinegar or chocolate or or or !! However if I can keep pain away or at least control it …life is great and I want to live it to the full …best of luck to all those that have chronic illnesses xxx

  9. Gibber
    July 12, 2016 at 1:24 pm — Reply

    Someone else on here mentioned perocette helping with the frequency. I was put on it for lupus pain and to my pleasant surprise, it has completely slowed down the frequency. I have to tell my doc this so he doesn’t take me off the perc. I don’t think I could go back to that extreme frequency. Just a reminder that I don’t have a bladder anymore but the frequency never went away. That makes me wonder if IC goes beyond the bladder. IC did however shrink my bladder to the size of a Canadian loonie and it was severely ulcerated by the time it was removed. Now I know lupus caused this IC. Has anyone been tested for lupus or other autoimmune diseases such as RA? I know one person here said they had endometriosis. That’s also and autoimmune disease. Where there’s one autoimmune illness there’s usually more overlapping.

  10. Giavij
    August 3, 2016 at 2:36 pm — Reply

    I used to have horrible problems with frequency, painful intercourse and pelvic pain. Went to all sorts of doctors. Never got any relief. Found out that internal and external pelvic massage relaxed the muscles and nerves to the point where most of my pain was gone. (I read Ending Female Pain) But I had to continue almost on a daily basis with massage. Then I found out about Vitamin B12 shots and how an absence of B12 will demyelinate your nerves. About a week of 25,000 strength B12 shots and my pain went away! (I do have to keep them up at least once a week now. Hopefully soon I can go to once every two weeks or a month.) It also helped my mental health tremendously! For more info on that you can research “Could it be B12?”. It is amazing how my life has changed! And as others on this site have commented, doctors just don’t seem to know about some of these things.

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