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Chronic Cystitis
I was diagnosed with non-muscle invasive bladder cancer in April, 2018. I had the TURBT procedure right after diagnosis, went through weekly BCG treatments and I just completed 12 months of monthly BCG treatments. My last cystoscopy on Sept 11, revealed a “red patch” that my doctor biopsied and the pathology report came back negative. Good news! So right now I’m cancer free. My issue is the chronic cystitis I’ve had ever since I started the BCG treatments. The level of pain when I urinate varies from mild to what it is right now, extremely painful. Every time I went in for a BCG treatment I discussed this with my doctor and would get the same answer every time. She would put me on an antibiotic “just in case it was a UTI”, (which it never was), told me to take pyridium or Azo, (which I always do and hate, because it turns everything orange), and the latest for the past few months has been to go on a low acid diet ( which is tricky). Per the 3 different lists of foods she gave me, that I can have or should avoid, I have eliminated most everything I ate that could possibly be considered acidic (right now I would kill for a glass of wine!)
Nothing helps and I’m tired of feeling like this. I put off urinating as long as I can because I know it’s going to hurt. Does anyone have any suggestions, answers or helpful hints for me? I’m just tired. Thanks. -
11 Replies
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Good news!
Dx Jan, 2019; high grade PUC, noninvasive.
Thank you for the suggestion. I am happy to say everything has cleared up and I am feeling really good right now. Thanks for taking the time to respond.
Kagels seem to help calm the spasms a little for me.
Dx Jan, 2019; high grade PUC, noninvasive.
Knifedealer, I can’t begin to thank you for all of the research you’ve completed on my behalf. I’ve completed the course of the steroid and either that helped or the cystitis cured itself. Right now, everything is good. Hopefully, I won’t need anymore BCG treatments for the rest of my life and I won’t be dealing with this issue ever again!
Glad to read you may be getting some relief from the steroid. I don’t think I’ve ever had a steroid that wasn’t helpful in resolving whatever ailment for which it was prescribed. The long-term effects however, can be devastating as I’m sure you know. Regardless, I hope your issue resolves quickly.
After recommending combining piperine with turmeric, I wondered if the piperine wouldn’t further irritate the bladder. After all, piperine is found in black pepper. Turmeric, or more specifically curcumin, an ingredient derived from turmeric, is known for its anti-inflammatory effects and works by decreasing the chemical moderators that produce inflammation in the body. As I noted below, the piperine in black pepper boosts the absorption of curcumin. While many sources list “spicy foods” as a bladder irritant, I searched the internet but was unable to identify evidence of a link between piperine and bladder irritation. Interesting, I found a current (US) National Cancer Institute pilot phase 1 trial that “studies the side effects and best dose of curcumin when given together with piperine … in reducing inflammation for ureteral stent-induced symptoms in patients with cancer.”
To summarize, I don’t know for certain if the piperine I recommended to be added to the turmeric enhances or negates the anti-inflammatory properties of curcumin in the bladder so please take my recommendation with a grain of salt, or pepper.
T. J. Moynihan, M.D. writes: “Curcumin is thought to have antioxidant properties, which means it may decrease swelling and inflammation. It’s being explored as a cancer treatment in part because inflammation appears to play a role in cancer.
Laboratory and animal research suggests that curcumin may prevent cancer, slow the spread of cancer, make chemotherapy more effective and protect healthy cells from damage by radiation therapy. Curcumin is being studied for use in many types of cancer.
Studies of curcumin in people are still in the early stages. Clinical trials are underway to investigate curcumin as a way to prevent cancer in people with precancerous conditions, as a cancer treatment, and as a remedy for signs and symptoms caused by cancer treatments.
Research is ongoing, and there isn’t enough evidence to recommend curcumin at this time. As always, talk with your doctor before using any herbal supplement. It’s unclear how curcumin may interact with medications.”
https://www.mayoclinic.org/diseases-conditions/cancer/expert-answers/curcumin/faq-20057858
Knifedealer, thank you for taking the time to reply. Yes, I’m a female, so the all fours position won’t work. Thanks for the information on the pepper and turmeric. You have obviously done research on this. The methylprednisolone 4mg prescribed by my doctor seems to be slowly working. Or maybe it’s just a matter of time that the cystitis is finally healing on its own. I don’t know, but whatever it is, I’ll take it. Thanks again for the advice.
Chloecat, be sure to use the turmeric along with black pepper. The curcumin in turmeric is not absorbed very well by the body and the piperine in black pepper boosts the absorption of curcumin. Both have been shown to improve health due to their anti-inflammatory, antioxidant and disease-fighting qualities. Also, turmeric is fat-soluble so taking it with coconut or almond milk is advisable.
Are you female? I reviewed your previous posts, but was unable to determine, but assume so by the Chloe (partial) screen name. I had horrible dysuria after TURBT last October and found it easiest for me to get on all fours when urinating. I’m a guy however. This technique may not be female friendly. The phenazopyridine helped. I didn’t start taking turmeric (in the form of Golden Milk) until some time after, so I cannot provide firsthand knowledge of its effectiveness against painful urination. Best to you and please keep us posted.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3535097/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664031/
Hi Cynthia, you’re absoultely correct about holding it, not a good idea. As for water, that’s all I drink! I did see my doctor again and she’s prescribed a steriod drug that I’ve started taking. Hoping this will calm things down. Thanks for taking the time to respond.
Barbara (aka Chloecat)
Drinking water during the day will help thin the urine so it doesn’t irritate as much. And I understand wanting to hold your urine due to pain but if the urine contains irritants it is counterproductive. Also make sure your doctors know of any supplements you take. Let us know how you are doing.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Thank you very much for the tumeric suggestion. I just purchased some at the store this morning and will start taking it today. I have great hopes it will help. I figured it can’t hurt.
Thanks again.
Dear Chloecat,
I am sorry that you are experiencing this pain.
I believe the cystitis is inflammation of the bladder. I don’t have this issue, but I have used CBD from cannabis tinctures for pain from my TURBT procedures. This has helped me with urination pain and cramping. To heal the inflammation of the bladder, I am using turmeric, since it is a natural anti inflammatory.
Congratulations on not having the cancer cells reappear! And I hope the above info helps. Lee
Bladder Cancer – Non-Invasive 2019
High Grade – T1
2 TURBT – 2019
9 BCG Infusions – 2019
Ureter Tumor Discovered – 2021Sign In to reply.