Just diagnosed with Bladder Pain Syndrome / Interstitial Cystitis

I thought I had this as well until I starting seeing blood in my urine. Blamed it on Hunner lesions. Then had a CT just to check and was diagnosed with bladder cancer after a subsequent cystoscopy. Make sure to rule that out. IC symptoms are so painful. And they can mimic other things.

Thank you for your reply. I just came back from my urogydnocologists office where I learned how to self-cath in an effort to stop UTI's and bladder pain. Not fun! It's agreed that BPS/IC is a logical possibility. I had a cystoscopy done last month as part of a sigmoid colon resection surgery. The urologist said there was nothing unusual with the lining, but I did have a UTI. I also had 3 different pelvic CT done in 8 weeks for the colon perforation, but nothing was found on the bladder. I'm hoping for better answers with my new urogynocologist. I see her again next Friday.

Oh okay. Sounds like you’re on the right track. Bladder pain is tough. Prayers to ya! Hang in there.

Hi Lucy ~
I've experienced what you have over the last 10 years. The bladder infections just kept ramping up. Most of the time, I couldn't get into my primary doctor so had to go to an urgent care. They would prescribed and antibiotic but then not call to tell me whether I was on the correct one to rid me of whatever bacteria I was dealing with. Klebsiella was the worst infection (and the hardest) for me to get past. It took tworounds of antibiotics to clear. I had a cystoscopy several years ago by my urologist. When he told me I was dealing with intestitial cystitis 3.5 years ago now, I asked if he wanted to do another cystoscopy but he didn't. He started me on methenamine (prescription) twice a day, along with D-Mannose (over the counter) twice a day. They are a combination to help keep the bladder pH stable and bacteria won't stick to the lining of the bladder but sloughs off. I took that combination for almost 3 years and haven't had a bladder infection since. However, in 2022 I showed up with early Stage Three chronic kidney disease. After some indepth research, I was able to find that methenamine is hard on the kidneys and likely that has been why my kidneys are progressing downward. I was afraid to totally come off the methenamine for fear my bladder issues would start again, so the urologist's P.A. cut my methenamine in half per day, along with the D-Mannose dosage. I did fine with that & now I am down to only half a pill of methenamine once a day (at night) and one D-Mannose once a day (in the morning). I've been on this regimen for over three months and am doing fine. Another over-the-counter pill I was told I could use is called Prelief but I haven't actually felt the need to use it. It's kind of a prophylactic for irritable bladder, as you take it before you eat something you know might irritate and cause bladder burning. I truly hope you will find something to help alleviate your symptoms. This panacea seems to have ended my constant bladder irritation & infections but if you & your medical team use it, just stay on top of your kidney lab results.

Hi there-
I’m so, so sorry to hear of your UTI’s and now IC/BPS diagnosis. It took me 3.5 years to get diagnosed with IC, as Mayo was good at finding other things wrong with me, but not the root. Likely because after my hysterectomy, they just shoved me over to the Pain Clinic, rather than trying to get an answer. I ended up having to file for disability eventually and walk away from the career I loved due to how debilitating the disease can be. I see one of the top researchers in the country at the University of Iowa, and their only answers for me have been twice monthly bladder installations, amitriptyline, hydroxyzine, and Elmiron. Their pain clinic has me take Percocet as needed, and I get SI joint and Ganglion Impar blocks every 3-6 months. I do use the Prelief religiously, and I also take Desert Harvest aloe Vera capsules. Pelvic physical therapy is a frequent recommendation, but I haven’t had good luck with it. That said, everyone responds differently to different treatments. The DH aloe vera capsules are something almost everyone agrees on though. If a flare is particularly bad and just won’t go away after 4-5 days, I’ll go on a 6 pack of prednisone. I also drink highly alkaline water and a lot of it to try to keep my urine the least acidic as possible. The migraine in your lower pelvic region is a great analogy. I always say it’s like 1000 tiny blades cutting at it.
I hope this helps a little,
Christy

@chutch, thank you for response. It was very helpful. I will use the list of medications you mention when I go to my urogynocologist on Friday for discussion points. I watched a You-Tube educational video of a presentation given by a doctor to a group of doctors on BPS/IC. One of the medications was amitriptyline. I had 10mg tablets in my medicine cabinet prescribed by my diabetes doctor for neuropathy pain, and in an effort to find some comfort, I started taking one each night as prescribed. It has decreased the pain a lot. I can walk without thinking about it. I'm guessing that without a level of pain, I will not be as tuned into actual UTI's. I still have constant burning, but I can deal with that. I also started D-Mannose. I will also buy a couple gallons of the Akaline water.

What is a bladder installation?

@dks Thank you for sharing your story, which sounds very similar to mine. A couple years ago, I had been on methenamine for about one year. Seemed to work and then it didn't, so I went off of it and onto a series of different lower dose antibiotics over the next several years, which didn't stop the frequent UTI's either. I went back on Methenamine a few months ago when I started my new doctor. I stopped a couple of weeks ago, because I had a sequence of UTI in six weeks in spite of taking the methenamine.... so, it wasn't working. I am taking D-Mannose 1,000 mg 2x a day. It's only been a week, so not sure what it does yet. What really concerns me is your mention of Stage Three Chronic Kidney Disease.... I have not had my Kidney lab results reviewed and I will ask that they be done at my upcoming appointment on Friday. What made them look at your labs? Were you running a fever? Had back pain? Thank you.

Hi Lucy-
Bladder installations are the only FDA-approved way to treat IC. Mine are a mixture of a former industrial solvent and two other things that I can’t recall. The solvent just stands out in my mind.

Industrial solvent??? Ouch! I'm going to be reading up on it. Thank you.

Hi Lucy. I'm so sorry you're having such a horrible time getting things calmed down. Last year, I noticed my eGFR had been decreasing over the past 4 years and my Primary kept telling me I probably was drinking enough water and was just dehydrated. So, I did a little research on methamine and found studies had been done showing that the drug should be used "with caution" on patients with kidney problems. I then looked at my lab results before my use of methenamine, as well as during the 3.5 years I was one it. I could definitely have been wrong about my concern but when I spoke with my Primary and my Urology PA, they both did some research on their own and concurred that it might be prudent to lower the dosage (if I wasn't ok with stopping it altogether - which I wasn't). I have had such great results with my IC problem by using the methenamine, together with the D-Mannose, that I think my mind couldn't wrap around the possibility that I might start having the bladder infections so frequently again (I haven't had one since July 2019). So, we came up with a plan to cut down to only one methenamine and one D-Mannose per day. I did fine, so we then cut down to only a half methenamine at night and one D-Mannose in the morning. I'm still doing fine. However, I still have trepidation about stopping the methenamine altogether. I know it's probably just a placebo at this point but it's still a security blanket for me. I sure hope you can find a regimen that will help you. Take care.