Eileen* has suffered with IC/BPS symptoms for many years. In her late 20’s, her bladder pain and symptoms have prevented her from working regularly and living independently. Now on Medicaid, finding physicians to actually treat her many symptoms has been remarkably difficult. Her case is complex and her symptoms are intense. Over the years, she’s tried many bladder therapies with little success and has been regular attendee of our live ICN support group meetings.

Several weeks ago, she shared that when she pushed on her belly button, she immediately experienced pain in her bladder and pelvis. She was stunned when others said that they could press on their belly button without any pain. Hers has been painful throughout her life. She had also developed a sizable lump by her belly button that was tender to touch. Moving/stretching her abdomen also triggered intense pain at her belly button, in her bladder and even her clitoris.  She gets some relief when the lump is taped over by her physical therapist.

Imaging suggested an umbilical hernia but when they performed a laparoscopy, no hernia was found. That doctor believed it was a lipoma (a benign lump of fat) and sent her to a plastic surgeon who suddenly cancelled surgery to remove the lump because he “saw something” there with imaging.

How can a lump at the belly button trigger bladder pain?

There is a connection between the belly button (aka the umbilicus) and the bladder. It’s called the “urachus.” In a developing fetus, the urachus is a small tube that connects the bladder with the umbilicus, allowing fetal urine to drain through their belly button and into the mother’s body.  At birth, this tube normally stops functioning and shrivels up, sealing both ends. But it remains in about 2% of adults and usually doesn’t cause problems.(1)

One sign of an active urachus (aka a patent urachus) is a moist belly button that is discharging clear fluid (aka urine). This tube remains open and functioning, even in adults. In a recent ICN meeting, one of our members shared that his belly button had been wet most of his life (50 years), only recently drying up. Did he have a urachal abnormality as a young child? Quite possibly.

A urachal cyst can occur when one or both ends of the urachus is blocked, leaving fluid in the tube which increases in volume and size. These cysts can also become infected. In some patients, a urachal sinus (abnormal opening) or a diverticulum can also develop.

Urachal Cyst Case Studies

In January 2024, doctors in Florida shared the case study of an eleven year old boy struggling with urinary frequency, urgency and didn’t feel like he was  emptying his bladder completely.(2)  Constipation was suspected and he was given a bowel cleanse along with some bladder training to address his urinary symptoms. Yet, he continued to strain and push to urinate. An MRI was performed which found a large urachal cyst (7 x 4.5 x 3.6cm) just above his bladder. It was surgically removed and his symptoms greatly improved.

In 2023, doctors in Spain shared the case of a 23 year old  woman who had abdominal pain and a “foul smelling” discharge from her belly button.(3) After treatment with antibiotics for a month, a CT exam found “a tubular structure 11cm long, 9 mm wide” connecting the belly button with the bladder dome. Her urachus was removed surgically and her symptoms resolved.

Urachal cysts can also occur during and after pregnancy. In March of 2024, doctors in Italy shared an alarming case study of a 32 year pregnant woman with persistent pelvic pain, urinary symptoms and fever.(4)  After a C-section, the patient experienced widespread abdominal pain. She was found to have peritonitis driven by a staph infection originating from an abscessed urachal cyst very close to the top of her bladder. The authors called this “exceptionally rare and diagnostically challenging.”

Conclusion

Urachal disorders can present with symptoms similar to IC, including bladder pain, frequency and urgency. Some patients may have umbilical discharge while others do not. Fever may be present as well.  Interestingly, we’ve now found symptoms strongly suggestive of a urachal cyst in three of our members.  Thus, if you have a wet belly button and/or a painful lump by your belly button that refers pain down into your bladder, urethra, tip of the penis and even the clitoris, we encourage you to bring this to the attention of your medical care providers.  The good news is that surgical removal of the urachus appears to be very successful in resolving all symptoms.

Eileen* brought the information about urachal cysts and abnormalities to her general surgeon. The first believed that, yes, there was a 90% chance she had a urachal cyst. An MRI, however, suggested that it was indeed a hernia despite that first surgery not finding one. Her urologist believes, however, that the mass in her belly may be pushing on a urachal remnant, causing her pain and discomfort. We hope that she will have a resolution soon.

References & Suggested Reading:

  1. What are urachal abnormalities. Urology Care Foundation. Accessed May 2, 2024.
  2. Thiesfeldt D, et al. A large urachal cyst presenting with lower urinary tract symptoms and a falsely elevated post-void residual on bladder scan. Urol Case Rep 2024 Jan 8:53:102655
  3. Montes M, et al. Urachal Sinus; An atypical case and review of the literature. Urol Case Rep. 2023 Mar; 47: 102359.
  4. Bertoni M, et al. Diffuse peritonitis secondary to urachal cyst abscess in postpartum patient. 2024 May; 118: 109584.

*name changed to provide anonymity.