Confidence and Freedom!

By Lise Frenette

I was only 15 years old when I began experiencing problems with recurrent bladder infections and frequent urination. I was referred to a urologist, who followed my condition on a regular basis. As the years went by, the symptoms got progressively worse, to the point of total urinary retention. In February of 1988, I began self-catheterization for control of urinary flow.

It was a difficult period, since I was in the peak of my life. I had finished school and was a legal msecretary and commissioner of oaths. I also had fun going out with my friends and my new boyfriend. We enjoyed travelling, hanging out at the beach and swimming or making a fire, and
cross-country skiing. So many times I found myself in awkward situations where the timing was wrong for catheterization, and I would wet myself due to overflow. I eventually restricted myself from going to areas where washrooms were not available, in fear of not being able to catheterize or hold the urine.

I can well remember a few embarrassing incidents. Once, I had been taking two different medications for treatment of a chronic infection. One of the medications was changing the colour of my urine to a dark orange. I had a hectic day at work, where certain documents had to be
completed and rushed to the courtroom by a certain time. As there was no time for self- catheterization, the overflow in the bladder forced the urine to leak and wet my dress. The dark orange emphasized what had happened and I was very embarrassed.

Another time, I was out at a night club with my friends, and we decided to eat at a restaurant and go to a party afterwards. The restaurant was quite a distance from the club and in a wooded area, so I had no control of the overflow and wet myself once again. The night was cut short and we headed home.

I was told the ducts in my right kidney were starting to dilate from urinary overflow backing up in the ureter, causing recurrent kidney infections. I was hospitalized on several occasions for intravenous antibiotics to clear the infection. They also did X-rays to determine if kidney damage had occurred. Fortunately, this wasn’t the case.

No specific cause for my problem was found, but urodynamic studies showed that the nerve supplying the sphincter muscle was barely functioning, causing the muscle to be in some sort of spasm. Various treatments were attempted, such as biofeedback and daily urecoline injection. But all these measures failed.

At a conference which my urologist from New Brunswick attended in Ontario, he discussed my case with another urologist. They both agreed to send me to Ontario for further evaluation, since my urologist could no longer help me.

Since I was quite young, the idea of having my bladder removed and wearing a pouch for the rest of my life didn’t inspire me. It would have been another problem apart from self-catheterization and it would have, once again, interfered with my active life. However, the recurrent infections, urethral irritation and urinary overflow were more distressing than the idea of going ahead with the surgical procedure. But the urologist advised me this was only a last resort. The idea of continuing with the usual treatment any longer was very upsetting.

It was then that the urologist suggested the Sacral Nerve Stimulation Implant. He had just received documentation about it and thought it would be an appropriate procedure for me to look into.

Seven years had elapsed since my symptoms began. I was now 22 years old. I’m known to have a strong mental state, but after such a long period of waiting and hoping for a better alternative to self-catheterization, I became depressed and frustrated. I was in desperate need of an improvement in my life. While I eagerly awaited my appointment to discuss the possibility of an implant, I was also fearful of another disappointment, that the procedure somehow could not be done.

Within a few months, I had my initial visit with Dr. Hassouna, a urologist who specializes in the Sacral Nerve Stimulation Implants. Various tests were done, including a PNE (Peripheral Nerve Evaluation), a routine measure to determine candidacy for this surgical intervention. During the trial period, a temporary lead is placed near the appropriate sacral nerve, and stimulation with an external device is provided for several days.

The PNE trial gave me a general idea of what to expect with the implant. The detailed voiding ,diary that I kept during this time indicated to me and Dr. Hassouna the effectiveness of the PNE trial period. I was quite amazed with the results and was, for the first time, reassured this would be the solution to my problem.

The PNE procedure was done in April of 1990 and the surgical implant followed in June. During the operation, performed under general anesthesia, a permanent lead is placed near the sacral nerve that controls the voiding function. The lead is passed under the skin to a stimulator device, placed in a small pocket incision, usually in the lower abdomen, just beneath the skin. The urologist can make adjustments to the stimulator using an external programmer. My stimulator is on at all times, except for urination, when I turn the stimulator off using a magnet.

Since this operation, my life has changed. I no longer require self-catheterization, which was a nuisance in my life. I’m now taking every opportunity to go places where washroom facilities are not available. I’m travelling again and spend as much time at the beach as I can. I have returned to studies without fear of embarrassing situations. Most of all, I can go places with my friends without hesitation.

Although I still have some infections, they are much less frequent. I only experience them two or three times a year, compared to six or seven. I was hospitalized a few times after the procedure due to kidney infection, but this resolved itself with time. I’m much less irritable now. The
bladder fullness sensation was very uncomfortable, and the pain from recurrent infections had become unbearable. The embarrassing situations also affected my self-esteem.

I’m now virtually free of all these discomforts and feel great about myself. I can comfortably make choices and changes in my life. I’m ever so grateful to Dr. Hassouna and all the people who cared and helped me in realizing this change in my life. Hopefully, through my detailed,
personal experience with the Sacral Nerve Stimulation Implant, people with similar problems will turn to this procedure and benefit from it as I have.

(For more information on the Sacral Nerve Stimulation Implant, contact Medtronic of Canada, 6733 Kitimat Road, Mississauga, Ontario, L5N 1W3, tel.: (905) 826-6020 or 1-800-268-5346.)