My Experience With an Underdiagnosed Condition: Urethral Diverticulum

by on January 16th, 2011
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As a child I suffered many urinary tract infections. We all assumed it was because I loved to swim, and sometimes these things go hand in hand. All through my life, any time I had a urine check in a physician’s office it said I had a urinary infection, whether I was there for those symptoms or not. No one found this odd. Into early adulthood I suffered many unexplained pains and discomfort in my lower abdomen. 3 gynecologists, 2 family physicians, and 1 emergency room physician had no explanation. I gave up trying to find any help.

6 years later, urinary frequency had become very annoying so I complained once more and was referred to a urologist. Before he even visually examined me he knew what the source of 23 years of woe was: Urethral Diverticulum (UD). A ‘hole’ had developed in the urethral wall that left a constantly infected tiny bulge into the vaginal canal. All of my problems, even the ones seemingly unrelated, fit the description of this illness. During the physical exam he emptied the bulge by applying gentle pressure, which was very painful. This reassured him of his diagnosis and we began to discuss the surgery I would need soon.

I have since educated myself about Urethral Diverticula and my impending surgery. I found many sad stories of UD undiagnosed for years, or misdiagnosed all together. UD is most common in women over 40 and in women who have had children, but it can also be congenital. The UD can be so tiny that your gynecologist does not even see it during a pap smear. I was angry that everything I had ever complained of was listed in the symptoms, urinary frequency and urgency, chronic urinary infections, anterior vaginal pain, and unexplained urinary discharge. Causes of UD are not fully understood, but can include problems with childbirth and some cancers. Removed UD must be biopsied.

The surgery will be intravaginal, the repair being made by removing the infected area and either patching or sewing closed the surrounding tissue in the vaginal canal. A urinary catheter will be worn for up to a month while the incision heals. Although surgery is not required in all cases, one as severe as mine with many symptoms persisting over a long period of time needs to be operated on. Untreated UD can result in cancer, kidney malfunction, and overall poor health due to stress on the immune system. Some women chose to live with their symptoms instead of risking a surgery that can sometimes result in vaginal fistula or stress incontinence. The surgery may fix the initial UD but there is no guarantee that another UD will not develop over time.

I will be going for a second opinion (as I recommend anyone do when surgery is suggested) this week. I am sure the doctor will agree with his predecessor that the problem is UD. I have decided to have surgery, as the potential problems related to the surgery are similar to those related to no treatment at all. Although recovery will be hard, I am ready to learn what it is like to live normally.

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