Just diagnosed with Bladder Pain Syndrome / Interstitial Cystitis

Posted by lucy155 @lucy155, Jan 25, 2023

With a history of 4-6 UTI's a year for over 8 years, I have been very frustrated with my medical team's inability to uncover the "why". 2022's UTI's have progressively gotten more frequent AND progressively more painful in the lower pelvic region. The pain includes the typical UTI systems of burning, feeling of frequent urination, but not being able to actually pee. In the last three months, I have had two emergency catherizations due to extreme urine retention. The UTI's seem to be recurring regardless of antibiotic treatment. Klebsiella is a new bacteria showing up in my cultures beginning in November, 2022. Since then I have had 6 UTI's. On Christmas Eve 2022, I had symptoms of a UTI during the day, by bedtime I had level 7-8 lower pelvic area bladder pain. I could not sleep. Took Tylenol, AZZO, and finally started Augmentin 875mg 2x/day for 7 days on my own knowing I was treating without a culture or doctors direction. I have had two more cultures done since then due to painful bladder (painful to walk) and other UTI symptoms. First one came back positive for Klesiella and e-coli. I was treated for 8 days with Augmentin. Bladder pain persisted and 10 days later another culture done, but came back negative for any infection! My bladder pain level is a constant 5-6, like walking around with a migraine headache in my pelvic region.

My PCP's physicians assistant, who I saw yesterday, suggested Bladder Pain Syndrome / Intercystal ?? as a possibility. Not much coming up on this Mayo site. A couple presentations showing up on You-Tube. Does anyone have this condition? What has helped getting the inflammation under control and ease the flare ups of bladder pain/UTI's?

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carolinamoon | @carolinamoon | Nov 22, 2025

Yes. I have this problem of interstitial cystitis also. It’s just so debilitating when it hits. Was diagnosed 2 yrs ago by a gynocologist after getting nowhere with my doctor. I just treat it myself when I get an attack, using over the counter painkillers. I get it probably twice a year and it can last for up to 3 months.! Lots of things set it off. Stress the worst . I have been told there is no cure 🫤

marlymac12345 | @marlymac12345 | Nov 23, 2025

Hello. I’ve had interstitial cystitis for years. I was taking Elmiron but gave that up to some scary reports I saw. I have found that drinking a lot of water, taking d-manosse and heat on the lower abdominal/pelvic area helps a lot. Stress definitely can bring on the pain. It’s such a painful thing to have to deal with. I wish you well/quick recoveries.

kcidram1957 | @kcidram1957 | Nov 24, 2025

I’ve had so many UTI’s over the past 3 years I can’t count. But due to my many allergies to antibiotics I have to be hospitalized and on a antibiotic that can only be administered by IV for 5 days. Finally got into a Urologist
and he wants to look at my bladder. He thinks I have cramping due to bladder spasms. Tired of cramping all the time and I hope he can help me

carolinamoon | @carolinamoon | Nov 24, 2025

In reply to @marlymac12345 "Hello. I’ve had interstitial cystitis for years. I was taking Elmiron but gave that up to..." + (show)

@marlymac12345
Thank you. D- mannose is one I drink sometimes but I actually have found that a ginger / lemon infusion is great. I like it , so I drink many mugs of it! Seems to help. Good luck! ☺️

marlymac12345 | @marlymac12345 | Nov 25, 2025

In reply to @kcidram1957 "I’ve had so many UTI’s over the past 3 years I can’t count. But due to..." + (show)

@kcidram1957
I think that urologist is right. The pain with interstitial cystitis sounds like yours. The pain spasms are so nasty. I took the Elmiron until I found out there are class action law suits, due to the possibility that it causes some eye issues. I now use d-manosse, heat and drink a lot of water and a mild herbal tea. Good luck with your urologist.

susano2026 | @susano2026 | Jul 28 7:13pm

Do your UTI tests show you have a UTI? I had quite a few UTI tests that were negative. Had the high numbers bladder pain, spasms, frequency, urgency and it was hardly ever a positive UTI. Dont know if you are still online but if you are, you can go out to PubMed, which is the listing of medical tests and trials for different medical syndromes. You will want to input "Intetstitial Cystitis" as the search, hit enter and it will pull up trials, tests, current trials going on, etc. IC feels identical to a UTI, but it is not. The IC Association is a website that you might want to pull up, LOTS of useful information and support from other IC sufferers. The information that finally pinpointed what I had was "Interstitial Cystitis: An overlooked cause of pelvic pain." Levine, DZ 1990

aliciak | @aliciak | Sep 7 2:26am

Hello I been trying figure out my symptoms for years I’ve had UTI since I been sexually active for many year I’ve be diagnose with UTI. I’ve been to many ER, Urgent care as well as my PC I’ve always been positive for uti with some little blood particles in the urine. They said it might be the shampoo or conditioner or body wash or laundry detergent then they said stop drinking soda coffee then it was tight clothes or underwear I’ve change everything I’ve even went so for of not being intimate with my husband and still get the symptoms it’s to the point where I’m always in pain I wanna cry I don’t wanna do anything it hurts I can’t sleep I feel like I always have to go to the bathroom but nothing just pain and pressure it’s taking over my life. I was reading about this goggle search I did here couple I think I may have I say this cause ever DR or specialist has given me the run around I just want my life back here they are
1. Interstitial Cystitis (IC) / Bladder Pain Syndrome: A long-term condition causing pressure and pain in the bladder even when no infection is present.

2. Pelvic Floor Muscle Issues: Tight or dysfunctional muscles in the pelvis can put extra pressure on the bladder and cause discomfort.

Have you been seen at the Mayo Clinic?

Have you been diagnosed?

I ask cause i want to figure this out I’m tired of being in pain for weeks thanks I hope you’re okay.

giovinna72 | @giovinna72 | Sep 7 7:04am

I had interstitial cystitis years ago and was told by my doctor to drink more water and limit potassium. I stopped adding daily banana to my breakfast and increased water and monitor how much water I drink daily. She also recommended taking the otc allergy medication Zyrtec. That’s a little pricy so I use Walgreens Allergy Relief tablets with cetirizine hydrochloride. Great results. Have been symptom free for years and can fend off an attack if I feel symptoms coming on. The increase in daily water has really helped and I don’t miss bananas and my potassium levels are normal.

lindagold | @lindagold | Sep 15 10:57am

Am reading this with such sadness. I suffered with Ic/Huner's lesions, frequent utis which 3 times became septic. I am colonized with e-coli, Klepsiela and pseudomonas. I had the bladder removed in 2022 due to the bladder scaring with Huner lesions and hardened walls like a baseball,

I suffered with Ic/Huners lesions for 9 years. I ws treated with Botox shots in the walls of the bladder, hydro distentions, umpteen cystoscopies, pelvic floor PT, diet, supplements. The bladder was so hard it only held 4 oz of urine so it was not able to expand I had my bladder removed in 2022, and
I have a urostomy bag now and have no pain at all. A year after the removal, an extremely large benign mass of inflammation, striation and fat, surrounding both kidneys appeared. Too large to be removed as I'd loose both kidneys. I continued to have kidney infections as the mass pushes the kidneys out of shape and the mishapened walls hide urine in them. So Kidney infections started for 3 years (but no bladder pain or stinging or any of that because I have the bag). The ER puts me on high dose IV antibiotic, fluids etc. Usually in hospital 5-8 days, every 3 or so months. Three times it turned to sepsis, because I couldn't feel the burning or fullness etc since I have not bladder By the timeI feel sick, I'm very, very ill. I saw an infectious disease dr who tried low does usual uti antibiotics for 6 months. Didn't help. I was diagnosed with Stage 3 kidney disease in 2023. The damage is from the frequent utis in the past, the benign growth pressing on the kidneys. They had to put stents in the ureters to help drain the kidneys not the bag. Those stents are exchanged every three months. Kidney function has be going up and down till I am now at 14 percent function. 2 months ago it was 21. So now I'm getting ready to have a fistula put in the arm so I have access to dialysis when I need it. They start dialysis when you have below 10 percent function. My dr believes that the frequent utis and the scaring from those, played a part in the bladder walls hardening, excruciating pain and limiting my ability to leave the house for going to urinate 60 plus times a day.
I'm grateful that I have good care. I'm grateful for my supportive family and friends and church. I'm also am grateful and pray that God will give me strength to live with this graciously and have peace.
I certainly remember to pray for all those who suffer with IC every night as I drift off to sleep.
Linda Gold (79yo)
Winter Garden, FL