COVID-19 is a devastating viral infection that not only infects the lungs but also attacks the circulatory system and, for some patients, the urinary tract. Acute kidney injury is found in up to 25% of critically ill COVID patients though they are not sure why that happens.(1) The kidney itself could have been damaged by the virus entering the tissue but it might also relate to other conditions that happen in patients who are critically ill and on ventilators.

Active virus has been found in urine in fourteen studies, estimating that 4.5% of patients could have active virus shed through their urinary tract.(2,3) Virus was commonly detected in adults with moderate to severe disease and four children with mild disease. Time didn’t seem to make a different as it was found from day 1 to day 52 after disease onset. Yet, the researchers were reluctant to make a direct connection between the presence of virus and the onset of urinary symptoms.(4)

74% Of Patients Report That Their IC Symptoms Worsened During COVID infection

Our survey of more than 90 patients with IC and COVID-19 suggests that COVID-19 can exacerbate IC symptoms, even in patients who have been remission for an extended period of time. 74% reported that their IC symptoms worsened during their COVID infection while 23% reported that their symptoms stayed the same. 10% required hospitalization.

Bladder pain increased severely in 34% of patients with 42% reporting a moderate or slight increase. 24% reported no change in their pain. For some patients, their bladder symptoms appeared suddenly while, for others, it intensified after the first week or two of COVID Infection.

We see a very similar breakdown for frequency with 26% reporting that their symptoms became severe and 47% of patients reporting a moderate or slight increase.

Some patients reported that they were brought out of remission and are now struggling with IC symptoms again. Several others shared that their normal treatments and/or flare tips, such as rescue instillations, were not working as they had before COVID-19. Patients required to take 1000 mg vitamin C daily to help strengthen their immune system may certainly flare from the ascorbic acid, a well-known bladder wall irritant.

Abdominal pressure, bloating and burning during urination were reported by many patients but there was also diversity in how their symptoms changed.

Patient Symptom Reporting

Here are several of the patient reports:

  • Abdominal distension increased as did my fatigue. I had been in remission for several decades but post COVID I began experiencing IC episodes on a weekly basis.
  • Overall I’ve not had any major flares in 7 years. All of a sudden, I’ve had multiple moderate flares.
  • I was in remission until I had COVID and now I have been dealing with flares since i was sick (3 months now).
  • Feels like the worst flare of my life.
  • Severe burning and pain. Frequent urinating sometimes up to every 10 minutes. Had trouble sitting. The only thing that helped was sitting on the toilet for hours reading a book. Took codeine as needed 10 mg. Did not take pain away but helped a little with burning. Was able to tolerate it the symptoms only.
  • My IC flared towards the end of being sick with coronavirus. I was sick for 3+ weeks…had a few days where I started feeling better and then started with an IC flare. It’s been two weeks and I’ve had 3 bladder treatments. I was supposed to go on again on Friday but felt too bad to even get myself there. Will go again Monday. But this flare is really severe pain and pressure.
  • I could barely move. High fever. Urine looked like beaten egg yolk. Higher counts of nitrites, blood in urine. My meds were not touching the pain. I was miserable. My urethra is still swollen and having issues relaxing.
  • My bladder contractions worsened to the point that I cried at the amount of times I had to use the toilet and my bladder just weakened. I wear pads but the weakness of my bladder proved to be too severe and I was going to ask my GP for a catheter.
  • Slow flow at times. I am very weak so not sure that has something to do with it. Not always but a few times.
  • Urethra pain, burning constantly and it hurts to walk. Feels like peeing lava. But there’s no infection. Got tested, now getting bladder installations. They help some but the pain just won’t go away like it did before.
  • I had constant burning before and after urinating and a lot of pelvic pain. Tested for Covid today and don’t have results yet, but I am almost positive I do. I have been urinating almost every 15 to 20 minutes for the past 8 1/2 hours.
  • Severe bladder pain and cramps. Naproxen wouldn’t even touch the pain.
  • Flank pain, abdominal pain and burning all the time bladder and when I urinate. Also last week my eyes burned like fire and I kept cold packs on them all day. Then they were extremely dry. Using artificial tears! Covid causes burning! I have experienced so much pain and burning with this awful disease.
  • I was hospitalized prior to learning about COVID and was diagnosed with a severe flare and issues with low lipase levels. A UTI and subsequently pneumonia in both lungs. This has been the longest journey and most pain I’ve ever had.

Symptom Duration May Be Several Months

We were not able to get much information on how long the increased symptoms lasted. For one patient, it’s taken four months before their IC symptoms began to improve. She wrote “Urinary Frequency, urgency, and severe pain were all dra- matically increased. Vaginal pain and discomfort and swelling also worse, and all are only just now starting to get slightly better, 4 months after having COVID.” Another wrote “Severe flare up uncontrolled. My COVID no longer exists but, my flare ups have not left.”

Interestingly, a couple of patients shared that their IC symptoms completely disappeared.

  • My IC symptoms completely went away while sick…. I generally have constant pain of some sort that gets worse during a flare. While sick with COVID pain and frequency were com- pletely gone. It was a nice reprieve I haven’t had for a couple years. After fever, chills, aches subsided, (~2 days), IC came back
  • I was truly surprised and during the worse part of my illness, I recall being grateful that I was not having IC flares along with COVID.
  • No, they got much much better. 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).

Patients Share Words of Wisdom To Others

Our participants had many words of wisdom to share to other patients struggling with IC and COVID.

  • Drink a lot of water and pay atten- tion to your IC symptoms. I was so con- cerned with COVID that I didn’t fully realize until I recovered from the virus that my IC symptoms had worsened considerably. Typically 25mg of amitriptyline nightly keeps my IC in check with few issues or flareups ever. Be mindful of your IC as a separate issue while you go through the stages of COVID. Consult your urologist if you start to have issues with IC as a reult of COVID.
  • Try to reduce your stress as much as possible…. Stress causes flare ups.
  • Fortunately, COVID requires you to stay at home which is the most comfortable place to be during an IC flare. Take AZO if your symptoms are bad.
  • Keep looking for a doctor who understands. Look at other options. Next for me is pelvic floor therapy
  • I’m sorry, I know it’s rough. I usually take AZO or Tylenol to ease the pain.
  • Keep your head up and try not to get discouraged. It is a scary and miser- able feeling.
  • I wonder if histamine response, inflammation, and/or dehydration play a role in IC symptoms. My IC symptoms did not appear until after my COVID symptoms had resolved.
  • Everyone has different levels of Covid. It’s a long process so hang in there. The isolation was probably the worst part.
  • You are stronger than you think! You got this! If I can do it, you can too! It’s not fun…but it will get better!

For the IC patient, as well as others who struggle with various illnesses, COVID-19 is a deadly issue. More than 300,000 lives have been lost to date. The next five or six months are going to test us but we will get through this together. Do not travel unnecessarily or mix family units. Wearing a mask shows that you care about your family, your neighbors and your community. We WILL get through this together! Carry hope in your hearts my friends.

Have you had COVID? Please Help Us Learn How This Can Affect IC.
CLICK HERE To Take The IC & COVID-19 Survey.

References

  1. 1. Jeong HW, Kim SM, Kim HS Viable SARS-CoV-2 in various specimens from COVID-19 patients. Clin Microbiol Infect. 2020 Jul 22:S1198-743X(20)30427-4.
  2. Kashi A, et al. Urinary viral shedding of COVID-19 and its clinical associations: A Systematic Review and Meta-Analysis of Observational Studies. MedRXiv. September 5, 2020. https://www.medrxiv.org/ content/10.1101/2020.05.15.20094920v2
  3. Gabarre P et al. Acute kidney injury in critically ill patients with COVID-19. Intensive Care Med. 2020 July;46(7):1139- 1348
  4. Nomoto Hm et al. Cautious handling of urine from moderate to severe COVID-19 patients. Am J Infect Control, 2020 Aug; 48(8):969-971 https://www.ncbi.nlm.nih. gov/pmc/articles/PMC7266575/