General Information on Interstitial Cystitis Medicine, Procedures, Therapies

How do you get Interstitial Cystitis?

Michael O'Connorby
7 Comments on How do you get Interstitial Cystitis?

Healthcare providers and medical researchers do not completely understand what causes Interstitial Cystitis (IC); however, it’s likely that many factors contribute. For instance, people with Interstitial Cystitis may also have a defect in the protective lining (epithelium) of the bladder. A leak in the epithelium may allow toxic substances in urine to irritate your bladder wall.

Since the symptoms of Interstitial Cystitis mimic other conditions, your physician may want to rule out the following before making a diagnosis:

  • Kidney stone.
  • Recurring urinary tract infection.
  • Bladder cancer.
  • Sexually transmitted diseases.
  • Endometriosis (in women)
  • Prostatitis (in men)

Doctors and reseachers believe that IC is related to certain medical conditions listed below:

Autoimmune diseases

The Global Autoimmune Institute classifies Interstitial Cystitis as autoimmune-related or suspected autoimmune condition. See my post about it here – https://treatinginterstitialcystitis.com/2022/07/02/is-interstitial-cystitis-an-autoimmune-disease/.

Allergies

Defects in your bladder lining

Vascular disease (vasculopathy)

Abnormalities in your mast cell (cells that cause allergic symptoms)

The presence of abnormal substances in your pee, including consistently high protein levels

Proteinuria, also called albuminuria, is elevated protein in the urine. It is not a disease in and of itself but a symptom of certain conditions affecting the kidneys.

Unidentified infections

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7 comments

  1. Thank you for this blog and all the information you provide! My name is Kathy and I have had IC after the birth of my first child. It took many years to be diagnosed correctly and 11 different urologists. Finally when my children were in college I was diagnosed. From 1976 to 1997 I went from one urologist to another. I was subjected to fulgerations, dilation treatments, many in office cystoscopies that left me in more pain and urologists who admitted they didn’t know what to do to help me. They said they didn’t see anything to account for my extreme pain. One dr. gave me Valium to take since he assumed this was all in my head. So frustrating. Finally being diagnosed correctly by hydrodistention in 1997, that urologist put me on Elmiron. I have to say it was a God send. It took almost 9 months to fully kick in but once it did, I felt as though I had no IC. After 3 years or so I went off it at my urologist’s suggestion. No pain for all these years. It was as if my bladder lining was put back. Recently I had a Pap smear and pelvic exam by a nurse practitioner. The Pap smear felt as if she was scraping my membranes horribly. When I sat up on the table I knew I was in trouble. She was told I had IC history. As she told me I could get dressed, she said I might have some bladder irritation. It put me in the first IC flare I’ve had in all these years. I’ve gone back to my urologist who correctly diagnosed me. He was so kind and told me between the awful Pap smear and that I was now 71 years old, hormonal changes with low estrogen were to blame. He gave me Estradiol cream to use sparingly 3 x per week for 2 weeks and then use twice per week. He is hoping the gag layer from Elmiron is still there in the bladder. I am praying it is. I go see him in a month so he will know how I’m doing. So far, not so well. The bladder pain is really bad at night and mornings. The urologist instructed me to consume lots of water per day. Yesterday I felt washed out and awful. It was as if maybe my sodium levels became low due to all the water I was drinking. How much water is ok to drink with IC?
    I know this is long but hoped it might help someone else. Thank you this site is here. There is always hope. Prayers for all of us.
    Kathy

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    1. Kathy, thank you so much for sharing your story. I am so sorry to hear your pain is back. I tried Elmiron twice each time for 8 or 9 months with no relief. I am also dealing with a bad flare up now. I have tried all of my tips to reduce the pain but nothing is working now but have helped in the past. I put ice in a ziplock bag and then place the bag just under my stomach. Also, drinking a pinch of baking soda mixed in water can reduce pain quickly (don’t overuse). Another thing I do is go to the pharmacy and buy bladder anesthetic pills (called Azo). Some people say a heating pad helps. Regarding water, two things I try to do. (1) drink enough water to keep my urine clear (yellow urine that is too concentrated makes me hurt more) (2) don’t drink too much water because it overworks my bladder which causes more pain. I am not a doctor but I just wanted to share some things that help me. Kathy, please keep me updated. Wishing you all the best.

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      2. Thank you, Michael. You are very caring. I forgot to post I’ve had 2 recent utis and the antibiotic given each time had bad side effects for me. My body is still not feeling right. Sometimes when I take my bp my pulse is up…97 while ago. The bp readings are fine, thank God. They were high and pulse was high on the second antibiotic. I feel that ICers can have drug sensitivities and mine hang on at times. Not good. I also think I can’t drink huge amounts of water like some ICers are able to drink. I have to work at figuring out a balance. Thank you for this blog. I find it helpful. Thank you very much for the tips. Prayers.
        Kathy

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    1. It is difficult to diagnose and to treat. I was diagnosed in 1995 and there had been almost no advancement in the treatment of IC. I hope one day soon we will have a cure or at a minimum, have an effective means to treat IC. Thank you so much for visiting my blog. I appreciate your comments. Thanks.

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