Pelvic Health Institute

Patient Testimonials

Susan W.

Urge incontinence

This story recounts the experience of a patient who is receiving neurostimulation for the treatment of bladder control problems. Please bear in mind that the experience is specific to this particular person. Not everyone who receives InterStim Therapy will receive the same results as the patient in this story.

My entire life I’ve had a problem with leaking, and difficulty realizing when my bladder was full. As a child I would urinate in the morning and then forget to go for the rest of the day. When nature finally caught up with me, I would rush to the nearest restroom—that is, during the times I was lucky. More often than not, I would have an accident.

My name is Susan, and my problem didn’t go away as I got older. Instead, it became worse. When I reached my late 20s, the frequency of my leaks increased, as did the amount of urine I leaked per episode. I would leak while I was in public or caring for my horses. Sometimes the leaks came without any warning.

My days revolved around locating and being aware of nearby restrooms, since I’d never know when I’d need them. I would try to go before I left the house so I wouldn’t get caught unprepared while out in public. As I entered my 30s and pursued a career as a sales representative, I kept an arsenal of pads to deal with accidents, especially while visiting clients.

My most horrific accident happened on a crowded elevator shortly after a successful business meeting. Without warning my bladder let loose. Mortified, I wrapped my blazer around my wet skirt, and drove to a store to buy new clothes so I could return to work.

After that incident, I stepped up my efforts to better manage what was, to me, a practical problem. Black and navy blue became my wardrobe colors to camouflage any leaks, and I kept a change of clothes with me at all times. What I didn’t do was see a doctor. Instead, I thought to myself: “This is a natural part of getting older.” My mother and both my grandmothers had bladder control problems that came with age and childbirth. Leaking, I was led to believe, was normal.

I didn’t confide in very many people about my problem, including my husband. But it sure did affect our intimacy. It got so bad at times that I had to lay down towels on our bed. While it was frustrating and embarrassing to me, he always remained supportive and understanding.

Despite these difficulties, I never let my bladder issue hold me back or keep me down. Instead, I approached it with a sense of humor. On my hobby farm, I would dump a bucket of water on my overalls to cover up my accidents, and then laugh about it. While my bladder was always on my mind, I always found a way to adapt. I loved life too much to not do the things I loved to do.

I was quite prepared to go on living with bladder problem until a doctor’s visit for a different health condition led me on the path to InterStim Therapy. The topic of my bladder came up during a conversation with a specialist to whom I had been referred. I admitted then that I had struggled with leaking for years but had never tried medical treatment. Imagine my surprise upon learning my symptoms weren’t normal.

After trying more conservative treatments, I still didn’t have the control that my doctor and I were looking for. Then she suggested I try InterStim Therapy. Having seen positive results among other patients, my doctor was hopeful that it would work for me. I was excited by the idea, and my husband told me I had nothing to lose.


Beckie H.

Urinary retention

This story recounts the experience of a patient who is receiving neurostimulation for the treatment of bladder control problems. Please bear in mind that the experience is specific to this particular person. Not everyone who receives InterStim Therapy will receive the same results as the patient in this story.

My urinary retention and the resulting overflow leaking were so embarrassing that I didn't want anyone to know. My coworker and I had a code phrase so she could cover for me when I suddenly needed to go to the bathroom. I'd tell her I needed to "see R.C.," which was short for "Relief Coming"...from a catheter.

My name is Beckie. When I was out for a jog on my 38th birthday, I suffered a stroke, despite running 24 miles per week and being in good shape. Later we discovered the stroke was caused by a hole in my heart. While I was still in the hospital, I felt like I had to urinate all the time, but I couldn't go. That seemed odd, since I'd never had problems with urinary urgency or retention before. However, I was preoccupied with needing heart surgery, overcoming the stroke, and getting back home to my husband and two sons, so I didn't address my difficulty with urination right away.

Months later I still felt like I had to go constantly, my back ached, and I also began having frequent urinary tract infections. My internal medicine doctor kept reassuring me that we would get to the bottom of this, but he attributed it to stress or depression due to the stroke. I was starting to think I was crazy, since as a nurse, I knew a stroke shouldn't cause bladder problems. It got very frustrating, constantly asking "How could this be? What's wrong with me?" My doctor prescribed two different bladder medications, but they didn't do anything to relieve my symptoms. I adapted by not eating or drinking much at work and just tried to manage as best I could.

I was catheterizing myself every 3 to 4 hours around the clock, which was incredibly inconvenient and put a real strain on my active lifestyle. Do you know how hard it is to cath yourself in a public restroom while on in-line skates? Plus, I was always worried about overflow leaking. I knew where every bathroom was between my home in western Wisconsin and my job in the St. Paul metro area.

After several months of my insisting that something wasn't right, my doctor ordered a postvoid residual test and determined that I had a very large-volume bladder. My bladder would get so full that the urine would back up into my kidneys, and I would have overflow leaking.

He referred me to a urologist, but it took me a few months to actually make the appointment. After all the doctors I had seen with my stroke and heart surgery, I felt like the last thing I needed was another doctor to add to the list. When I finally went, the urologist ordered urodynamic tests that showed my bladder muscles never relaxed enough for me to go normally.

That doctor referred me to another urologist, who finally figured it out. He explained that due to the stroke, my brain and the nerves that control bladder function weren't communicating correctly. He thought InterStim® Therapy might target this communication problem and relieve my symptoms. I had never heard of it, and I thought it sounded strange. Over the next year or so, I researched InterStim Therapy and did a lot of thinking.

As an operating room nurse, I wasn't afraid of the surgery. After all, it's a minimally invasive procedure, and I see far more invasive surgeries every day at work. My hesitation was for emotional reasons. My doctor said there was a 40% chance that InterStim Therapy wouldn't work for me. I had been through such an emotional journey that if it didn't work, I didn't know if I could handle that huge of a letdown. That was the root of my concern.

The turning point came when my urologist's nurse reminded me that all the antibiotics I was taking for my frequent bladder and kidney infections could cause other, more serious medical problems. That got me thinking, "Well, if there's something out there for me to try, and yet I'm putting my kidneys through all this, I'd better just go for it." I figured I had to try something, because there was nothing else I could do. I scheduled an appointment for the trial assessment and crossed my fingers.


Ellen G.

Urgency-frequency

This story recounts the experience of a patient who is receiving neurostimulation for the treatment of bladder control problems. Please bear in mind that the experience is specific to this particular person. Not everyone who receives InterStim Therapy will receive the same results as the patient in this story.

I used to tell people that I went to the bathroom more often than a 5 year old. I should know: I work full time as a kindergarten teaching assistant. My name is Ellen, and my job requires me to be in constant motion. When I'm teaching, I don't have the freedom to just leave the classroom to go to the bathroom.

Bladder issues are not life-threatening, but they are life-altering. I have four kids, all involved in various activities. Activities at school were manageable because there were always bathrooms available, but sporting events were more challenging. If I had to go to the bathroom, I'd have to jump in the car and go to the nearest store or restaurant. Worse than the inconvenience was the anxiety and fear I felt about "What if there's no bathroom?"

Traveling was difficult. The anxiety would start days before we planned a trip, when I'd have to map out all the rest areas. I always had to throw a bucket into the car in case of an emergency. As you can imagine with teenagers, I put up with a lot of moans and groans and eye rolling when I had to make a bathroom stop.

I was going to the bathroom more than every hour, round the clock. At night, I'd have to get up 8 or 10 times, so I was always exhausted.

My bladder control problems started 10 years ago, when I was pregnant with my youngest son. At first I thought the pain, urgency and frequency was due to the pregnancy. But after I had my son, the problems continued. I would think that I had a bladder infection, but every time I went to my primary-care doctor, the test would come out negative.

I'm sure they thought I was a complete hypochondriac, because they could never find a reason for my symptoms. I just chalked it up to having four children. I don't think they knew what to do with me, so it was easy to sweep me under the rug. I just needed them to know that I wasn't making this up. In the beginning, I might not have pushed things as hard as I should have to get some answers. But once things started to progress and my symptoms got really bad, then I knew that something was definitely wrong.

I was fortunate that my gynecologist had a clinical interest in bladder dysfunction and was willing to work with me to find a solution to my problems. He prescribed one medication, and when it didn't work, I'd try another. Then another. I felt like I was popping pills all day and nothing was helping. I felt like I was just trading one set of problems for another. For 5 years, I took 4 of those pills a day and dealt with those side effects.

Then, my doctor told me that he was offering InterStim Therapy, and he thought I would be an excellent candidate. I was hesitant at first. It was new to me; I had never heard of it. It was intimidating to think about having a device inside my body. The 2-step procedure seemed overwhelming.

So I did some research on my own and thought, "This could be the answer I'm looking for so I don't need to swallow pills anymore."


Elaine H.

Urgency-frequency

This story recounts the experience of a patient who is receiving neurostimulation for the treatment of bladder control problems. Please bear in mind that the experience is specific to this particular person. Not everyone who receives InterStim Therapy will receive the same results as the patient in this story.

My life revolved around what I called "JIC-ing" – going to the bathroom "just in case" before I left home, work, the store, or the restaurant. When I realized I had to go, I knew I must go immediately, and 75% of the time I didn't make it. I always had to make sure there was a bathroom where I was going and carry pads and a change of clothes in case of leaks. It was such a burden.

My name is Elaine. About 15 years ago, I started noticing that I had to go to the bathroom more often. I'd had 4 children, so I just assumed I'd have bladder problems eventually. However, it gradually got worse, to the point where I was going 18 times per day and 3 or 4 times per night. Eventually, I had to use adult diapers at night and went I went out, and I thought, "I'm way too young for this!" It was really cramping my style.

At the time I was working as a child support officer. The bathroom was halfway down the hall from my office. When I felt the urge to go, I remember ducking into an empty office, crossing my legs, and trying to hold it back. I'd leak a little, and often as soon as I started walking, I'd leak a lot. Thank goodness for the bathroom blow dryers – I'd use them to dry my clothes. I tried not to get too close to other people at work, because I was afraid I'd smell. I always had a change of clothes with me. In court, I wore pads because it was so long between breaks.

My family doctor prescribed exercises, which didn't work. He then referred me to a urologist, who prescribed a medication that made my mouth very dry. Next, he put in a sling, which didn't really work, either, so he prescribed another medication. With each new treatment I had hope, and when nothing worked, it was a big disappointment.

My urologist referred me to another urologist who offered InterStim Therapy – he thought I might be a good candidate. I approached it with an open mind, because I was so desperate for something to help me – I didn't really care what it was. I had so many questions: How is it going to work? Does it somehow tell you when to go to the bathroom? What does it feel like?

I took some time to read up on InterStim Therapy before I made that appointment. It took me the better part of a couple of years to realize that InterStim Therapy was like a pacemaker, and people use those all the time. That was very comforting to me. My sister worked at Medtronic and had good things to say about InterStim Therapy, so that probably had more to do with it than anything.

I finally said, "This is something that might help me, so I should give it a try. If it doesn't work, my doctor told me I could always have it removed." In the fall of 2004 I did a trial assessment to see if InterStim Therapy would work for me.


Jane H.

Urgency-frequency

This story recounts the experience of a patient who is receiving neurostimulation for the treatment of bladder control problems. Please bear in mind that the experience is specific to this particular person. Not everyone who receives InterStim Therapy will receive the same results as the patient in this story.

About 3 and a half years ago, when I was 57, I noticed that I was going more frequently, feeling greater urgency, and getting up more at night. I mentioned the symptoms to my doctor. He basically said that after having three children, urinary difficulties were to be expected. That really shut me down and made me feel hopeless. I had the misconception that only women in their 70s or 80s had bladder problems. I thought I was too young. If I was having these symptoms so early, I'd just have to live with it.

I went into denial and tried to minimize the impact. If I leaked, I told myself it was only bad because of the cold weather or I made some other justification. But the symptoms gradually worsened. I was always tired from getting up several times at night. Since my doctor had implied nothing could be done, I tried not to think about it. Then I received a postcard inviting me to an educational seminar about women with overactive bladder. The light bulb went on. I realized it was me they were talking about.

I got that postcard, so I was lucky. Unfortunately, the therapy isn't well-known, so I was skeptical at first. Some of my professional colleagues had heard of the therapy, but they didn't know if was FDA approved for certain bladder problems and had been around for years.

At the seminar, several urologists who specialize in women's urology described women with symptoms similar to mine. It was so reassuring to hear professionals describing what I was feeling.

I made an appointment with a doctor I met at the seminar. She did a number of tests and concluded that I had a neurological insufficiency. In other words, the nerves that govern urination weren't functioning properly. I wasn't aware of the role nerves play in bladder function. You mostly hear about low bladder capacity or weak pelvic floor muscles. Once I understood it was a neurological problem, a neurological solution like electrical nerve stimulation made sense to me.

Initially, I didn't understand which nerves were being stimulated. My doctors explained that the sacral nerves that govern urination are stimulated, not my spinal cord. They also explained how they isolate the proper nerve, and that explanation was reassuring.