more email about urethral diverticulum

Dear Diane:

I read with interest the information about urethral diverticulum and thought you might be interested in learning of my personal story with the same condition. It has a somewhat different ending than the traditional/standard version. it might help to know that I am educated (University of Pennsylvania) with a Masters Degree and I work in the medical field. This may explain somewhat why I chose to do some of the things I did as explained below.

Approximately 10 years ago, while vacationing in Georgia, I noticed a small amount of bleeding a few hours after horseback riding with a friend. When I returned home to Pennsylvania, where I then was living, I immediately made an appointment with my gynecologist. I told him of the bleeding and told him I did not feel any pain at that time. He did a gynecological examination on me and could not find anything. He thought I might have somehow received a small "tear" while riding. I went home and he told me to call him if I noticed the bleeding again.

A short time afterwards I began to suffer with sudden bursts of pain, but I could not tell where the pain originated, abdomen, stomach, vagina, urinary tract, bladder ???? It was a mystery to me. I also recall having symptoms of feeling as though my bladder was never empty. After some serious thought I considered going to a urologist. I chose a physician with an apparently good reputation and I underwent a series of tests, but he could not find a thing. After quite some time he sent me to a general surgeon thinking possibly I had a hernia (???) It was apparent he was at a loss for what was happening. He actually began to look at me as though I was imagining the pain because it never seemed to occur when I was in his office and I always seemed illusive about where it was. However, by this time the pain had become much more severe. So much so, a friend told me I would "go white with pain" and I would almost double over at times whenever we would be out.

When I arrived at the general surgeon's office for the examination, I was lying on the table when he walked over to exam me. I had been "handled and probed" so much by physicians and nurses and technicians, however, I was unable to allow the general surgeon to examine me. I just burst out in tears and told him to keep away. (I think I frightened him, but he still charged me for the visit.)

I went back to the urologist, who then sent me for a vaginal ultrasound. The physician in charge came into the room at the technicians request, examined me himself and determined that I had a urethral diverticulum.

I then went back to the urologist, who read the ultrasound report to me, carefully drew a diagram for me so that I would better understand what it was, and then pronounced that he wanted to do surgery to correct the problem. THIS IS WHEN THINGS BEGAN TO CHANGE.

I asked him how many of these surgeries he had done in the past. He told me "two per month." My immediate thought was that if he had been doing two per month why hadn't he been able to diagnose the problem much sooner. I told him I wanted to do some research first on my own and that I would get back to him. (I figured I had waited months and months with the pain and I could certainly wait another week or so before going through surgery.)

I read whatever I could find on the subject after calling local medical school libraries and the National Institutes of Health, and then wrote to two physicians, one in Germany and one in Houston, who had written articles on the subject. Both were kind enough to respond to my letter filled with questions. They answered all of my questions completely.

I then contacted the urologist's office and spoke at great length with the physician's nurse, who was very patient with me, as I explained what I had learned and asked many questions, since my biggest concern was that I was in my thirties and there was a possibility of becoming incontinent as a result of the surgery. However, this was the beginning of the end for my relationship with the physician. He actually became intimidated that I (probably) knew more than he did about the condition. He refused to take my telephone calls after the call with his nurse.

Since I was concerned about the incontinence (which apparently is a greater risk for women than it is for men with this condition), I wanted to know if there were any alternatives to surgery. I did not learn of any, however, so with the articles from the German and Houston doctors in hand, I read, read and re-read them until I practically knew them by heart. What I found was a simple statement that changed my life. It stated that it was uncertain why urethral diverticlum developed, however, there was one theory that they are congenital, but most persons don't ever experience the effects of them. They don't even know they exist. A small percentage of persons with this condition may experience symptoms after a trauma/injury of some kind.

It may sound strange, but I thought, "If this is in fact congenital and the effects of it arose with trauma (horseback riding??? --- I'm an experienced rider and had been galloping hard through fields, etc. in Atlanta), then there must be some way to reverse this thing where I can become asymptomatic again. This is what I did ...

I called my gynecologist, whom I had known for many years, and told him I had a urinary tract infection. He asked if I was certain and I told him I was. He had me go to the outpatient lab of the local hospital for a urinalysis and before I could sit on the commode, blood seemed to be "pouring out of me." He prescribed the standard medication for it. However, it didn't work. I was still in pain and was still bleeding. I called him again and told him I was leaving for out of town to Maine, which I was, and that I needed something much stronger to help the symptoms. He became very upset at me and said, "Don't ever let an infection get this bad again." (He had no clue what I had gone through.) He prescribed Cipro. I took the pills for the prescribed time and number of times per day, as well as drinking about two gallons of bottled spring water per day. About 10 days later I was totally symptom free. I have NEVER had the effects of the diverticulum again and I have NEVER had surgery.

I thought you might want to know about my experience and possibly consider sharing it with the physician from the University of Pennsylvania who responded to the question about urethral diverticulum. My situation and outcome may not work for everyone, but I am now truly convinced that surgery is NOT the ONLY option to this medical problem.

It is now at least 11 years since I was diagnosed and I have never experienced a

ny other symptoms since my "cure."

The few things that stand out in my mind the most about the experience include:

1. That it was difficult for me to identify where the pain was coming from.

2. That the physicians had difficulty identifying the problem immediately and seemed to actually think I was making up the problem after their not being able to identify it in a short amount of time.
3. That the idea of possibly becoming incontinent was what prompted me to seek out a method of handling the problem in a way other than surgery. (If I remember correctly, men have more sphincter muscles in the urinary tract than women, which puts women in a more vulnerable position to become incontinent than men when surgery is performed.) Also, the thought of a vaginal sling to take care of the problem of incontinence following the surgery was not appealing to me.

4. That I truly became convinced that if the problem had been congenital, then there was some way for me to "reverse" the problem.

5. That I could not find and have never found to date any research that anything except surgery has been done to correct the problem of urethral diverticulum, which continues to frustrate me knowing what I know and have experienced personally.

Thanks, Diane, for allowing me to write this to you.

Have a blessed day!
A Visitor

Follow up from this visitor:

Several years ago I went to a Urologist at the recommendation of my Primary Care Physician to get "checked out just in case there might be a problem that isn't showing up related to the Urethral Diverticulum" and was told by the urologist I saw... "There's nothing to worry about ... Just keep living your life like normal." I informed her of how I had "self-treated" and she fortunately was curious enough to ask more questions and take notes possibly to try to help future patients. I have NEVER had another incident related to the Urethral Diverticulitis since it was taken care of with CIPRO and drinking a lot of water each day, as noted!

In my comment -- until the symptoms disappeared.... It's now been close to 15 years or more. If at any point in time I even "thought" I had a "budding symptom" I immediately began to drink more water, which took care of the "problem." (Note, that RARELY has happened during the past 15 years where I even thought I migh have a symptom and it is very likely it was related to something else entirely.). I'm pleased to learn that others are reading my comment and learn there might be hope for them outside of a major surgical procedure (which I have since learned just how major it really is), and hope the information has helped some of them.

Posted August 2007