RELATED CONDITIONS

Since the beginning of the pandemic, some interstitial cystitis patients have reported severe flares after they were infected with COVID-19, some lasting for many months. Some reported that COVID brought them out of a years long remission while others shared that their IC symptoms intensified in the days and months after COVID. 

The Interstitial Cystitis Network has been conducting a small study of IC patients asking them how their symptoms may have changed with COVID infection. As of February 2022, 173 patients have participated. 75% reported that their urinary symptoms got worse. Bladder pain increased severely in 40% of patients and moderately in 23% of patients. 31% reported that their urinary frequency became severe with 22% reporting a moderate increase.

Patient stories showed that COVID can cause very diverse reactions in patients. Here are just a fraction of the over 150 patient comments we've received. 

• It happened after Covid. It came on gradually within a week. I started noticing what was happening. At first it felt like a UTI. I increased the D-Manonose and water intake and it seemed to help and then the urgency and achy bladder started.  
• My stomach distention and bloating and general pelvic area discomfort have got worse. I rarely had a flare over the past 5 years but I’ve had like a consistent mild flare since recovering from moderate Covid.
• Bladder awareness and pain- I was also infected a year ago and that is when I was diagnosed with IC brought on by Covid 
• I have burning urethral pain like I’ve never experienced in my entire life. It spread to my perineum, and, and clitoris. My doctor said this flare had aggravated the pudendal nerve. Intravaginal Valium, Azo, and a significant dose of Naproxen twice a day have helped, but it’s brutal right as they wear off before the next dose. I also lost the ability to hold my urine for more than an hour or so. Not exaggerating at all whatsoever, this has been easily 10x the worst flair I’ve ever had in my life. I’ve never sobbed so much from IC pain and debilitation.
• None of my medications are helping and the flare will not stop. This is 6 weeks after covid onset 
• I had been I remission for over 5 years, IC came back with Covid. It took almost 7 months for symptoms to stop. Now, 2 months later I have Covid fir the second time and my IC flare ups are back.
• I did not have IC symptoms during my COVID Infection, but I had them immediately after I recovered and have had them since (it has been 3 months). They were mild prior to having covid, and have been much worse ever since.
• It was right after I got pretty well from Covid, then bam! my IC got significantly worse. Pain 24/7. Exhausted from lack of sleep. Getting up at 4 to 4:30 most mornings because pain is so bad I sit up in my chair with a heating pad on my pelvic area. Awful, just awful.
• Burning, hematuria, frequency. Urethral pain even when not voiding! Pain after void so severe feel like I could faint. Walking is painful.

For many, pain began weeks after COVID recovery, while for others they began during active COVID infection. Most reported that their tried and true flare management strategies were not helpful. The flare may last for six months or longer in some patients. 

We do not, as yet, have any published treatment suggestions other than the use of basic bladder antispasmodics to reduce frequency and urgency. We have no idea, as yet, if bladder instillations are effective. 

For the IC'er, however, you could consider some of the OTC supplements (Bladder Builder, Bladder Rest, CystoProtek, CystoMend) that might coat the bladder and/or palmitoylethanolamide (PEAORA) which has been found effective at reducing bladder pain.  Learn more about these in the ICN shop.