A few weeks ago, an IC patient struggling with COVID-19 reached out to the IC Network to ask for help. Her IC had severely flared after she became infected with COVID-19 and wanted insight into this had happened to other patients. We had no idea! To help her and others, we have created a new survey to reach out to our membership to ask how COVID-19 may have influenced their IC symptoms.
Have you had COVID? Please Help Us Learn How This Can Affect IC.
CLICK HERE To Take The IC & COVID-19 Survey.
We have very preliminary results from just 8 patients who responded from a single social networking announcement. Three patients had physicians who believed that they had COVID but they were unable to be tested. Two patients became ill with COVID symptoms but their test was negative. Three tested positive for COVID but had no obvious symptoms. They were silent carriers.
Half shared that their symptoms did not change. Three reported that their symptoms got worse and one shared that their symptoms improved. For those who did worsen, two reported that their pain increased severely and three just slightly. Urinary frequency increased slightly in 3 patients, moderately in one and severely in one patient. One patient also reported struggling with colitis, a well documented symptom of COVID. Another noted painful urination.
Two patients required hospitalization for COVID one of whom had to go twice in the past four months and found that hospital staff were not familiar with IC. “As usual, the MD didn’t know what IC was and kind of brushed it aside. .. they gave me tramadol and told me to go see a urologist again.” This patient also appears to be experiencing extreme nerve sensitivity after COVID infection. She wrote “I have never burned like this to such a degree that I have to will myself not to move in order to tolerate it.” She said that neither ice nor heat has helped. As to why the symptoms have continued to worsen, she said “I am pretty sure it’s (COVID) going through it’s fourth or fifth regeneration and my body is struggling to adapt” to the infection.
In a stark contrast, another patient shared that their IC has gotten much, much better. They wrote “for the first time in years I have had almost no flares for these last 3 months since I was sick with presumed COVID (and I still have some covid related symptoms now that may be permanent).” Baffling.
Obviously, we need more patients to participate in our survey before we can make any firm connections or suggestions. Would you help us? If you have had COVID and are diagnosed with IC, please take our survey here!