Olivier: Participating in Clinical Research to Help Others with Benign Prostatic Hyperplasia Down the Road
Symptoms began gradually for 57-year old Olivier, so it is difficult to pinpoint exactly when he began dealing with urinary urgency, but he estimates he first noticed the problem 10 years ago. Urinary urgency is the sudden, strong need to urinate immediately. Although he has been dealing with urgency for the better part of a decade, he only learned the source of his symptoms—a condition called benign prostatic hyperplasia (BPH)—relatively recently. He admits that he is not good at going to the doctor right away when anything happens. “You kind of ignore what you have, and then you don’t want to think of the worst. There’s always the question of prostate cancer.... Initially, you try to cope with it.” Although Olivier put off going to the doctor to find out what the problem was, he explains that he could not control or influence his symptoms very much. As he says, a natural way “was to drink less water, which is really not what you want to do … because you’re thirsty all the time. Definitely not good for your metabolism to restrict your water intake. You realize that’s not the solution.” To better understand the nature of the symptoms that characterize his urinary problems, Olivier recently began participating in an NIDDK-supported research study—turning his own experiences with this difficult condition into a way to help others.
After Olivier’s urinary urgency started, it got progressively worse over time, and began to seriously interfere with his life. It was hard to predict when the urinary urge symptom would start, complicating the family’s social life and his everyday activities. “It’s not that you can choose when you go—you have to go right now.” Describing these challenges further, he says that with urinary urgency, “basically you cannot be in a room for more than an hour. Sometimes less. You have a diminished ability to interact with people and [need to] leave at specific moments.” Olivier, a husband and father of two boys, comments that it became very apparent to the people he interacted with that he had this pretty serious issue. “Everyone knew in my family that when I have to run out—it was mostly a joke. But,” he adds with a laugh, “I guess a good way to take it.”
Urinary urgency affected his life in other ways, too. He notes that air travel is especially difficult, “because once your seatbelt is fastened and you’re told you cannot move, that becomes a serious issue. You know … sometimes … it takes a long time before the plane taxis out from the gate and you actually take off [and finally] you are in the air and able to go use a restroom.” An owner of a business that imports specialty foods from Europe, he noticed that when he’s in a food warehouse, which is kept at about 40 degrees Fahrenheit, that really triggers the need to urinate. “I couldn’t stay in the cold environment more than 40 minutes. I would need to run to use the restroom.” Olivier also has struggled to get a good night’s sleep because of his night-time urinary symptoms.
“Start waking up at night once. And then it becomes two. And then it becomes three.... You don’t get any rest.” As the nightly urinary symptoms became worse, exhaustion became an additional challenge during the day.
To complicate things further, he also developed another urinary problem. “Going to the bathroom to urinate became a real struggle, too. It’s not just going more often—suddenly you’re having a harder and harder time to try to urinate. It’s increasingly hard to handle. Hard on your body too, just to go through that process.”
Benign Prostatic Hyperplasia Diagnosis and Treatment Plan
The combination of these and other symptoms significantly contributed to Olivier’s diminished quality of life and work experiences, and finally brought him to a tipping point. He says, “That’s what started to tell me that I need to do something about it, because it was getting out of control.” After about 5 years of urinary urge and urinary stream problems, he made an appointment with his general practitioner, who referred him to a urologist, who diagnosed Olivier with BPH. BPH is a condition in which a man’s prostate gland is enlarged but not cancerous. The prostate surrounds the urethra, which is the tube that carries urine from the bladder to the outside of the body. In BPH, the enlarged prostate presses against and pinches the urethra, causing urinary urgency, trouble starting a urine stream, and/or other symptoms. BPH is a fairly common condition in men around Olivier’s age and older, and men with a family history of BPH are more likely to develop the condition. Olivier eventually realized that his father probably developed this condition, although with his father it didn’t occur until much later in life.
“That’s what started to tell me that I need to do something about it, because it was getting out of control” says Olivier of his decision to ﬁnally seek medical help for his severe urinary symptoms.
“I was put on tamsulosin (a medicine that relaxes the muscles in the prostate and those that connect the bladder to the urethra in the bladder neck) for several years” to treat the BPH, Olivier says. Initially, there was a slight improvement with tamsulosin, but, he adds, “there were a lot of side effects [from the medicine], which were not really emphasized. These side effects were marked enough to lead to some deterioration of quality of life” which led him to completely stop taking the medicine.
The approach to Olivier’s treatment changed in the summer of 2016, when he received a transurethral resection of the prostate (TURP), a surgical procedure that removes some of the prostate gland; the procedure is performed by a urologist. Olivier says “the surgery was a tremendous improvement. I am thankful to Dr. John L. Gore and his team [at the University of Washington Medical Center] for the excellent care and surgery procedure that I received.”
Participating in the LURN Clinical Study
Olivier learned of the Symptoms of the Lower Urinary Tract Dysfunction Research Network (LURN) observational study from his urologist at the time of his surgery, and agreed at that time to participate in the study. To hasten advances in assessing and treating lower urinary tract dysfunction, whether caused by prostate-related or other conditions, the NIDDK started LURN in 2012. Expanded in 2013, LURN includes six clinical research sites and one data coordinating center. LURN was designed for people like Olivier, to better understand lower urinary tract conditions. Knowledge gained from LURN could then be used in other research efforts to develop and test new treatments to improve the health and quality of life of people with lower urinary tract symptoms (LUTS).
LUTS are highly prevalent in both males and females, but many people who seek help from healthcare providers for LUTS experience neither total nor permanent resolution of their symptoms with current management approaches. One of the barriers to improving diagnosis and management of LUTS is incomplete knowledge and imprecise classification of subtypes of LUTS and their associated causes. There are a wide variety of lower urinary tract symptoms that people can experience, which may be caused by problems in the urinary tract or may originate elsewhere in the body. Even people with similar symptoms may have different underlying urinary tract conditions. The researchers aim to identify and understand the different subgroups of people with LUTS based on their urinary symptoms, other health conditions they may have, and other characteristics; improve measurements of people’s experiences with urologic symptoms; share novel findings with other researchers, clinicians, and patients; and generate data, samples, and research tools for future studies. Ultimately, the researchers hope that knowledge gained from this study will help researchers and healthcare providers improve prevention, management, and treatment strategies.
“I wouldn’t say there was a hard part at all,” Olivier says of his participation in the LURN study.
During his participation in LURN, Olivier underwent a standardized clinical examination and medical history, and completed questionnaires designed to gather information about urinary and other symptoms and health-related quality of life. He also provided blood, urine, and other samples for storage in the NIDDK Sample Repository for future study by the LURN investigators and the broader research community.
Olivier speaks well of his participation in the LURN study. “I wouldn’t say there was a hard part at all. I just have to go to the hospital a few times, and they were very flexible. The appointments were no more than a half hour at a time.” And he describes the LURN study staff as “very good. Very fine. They are understanding. Good interactions.” Olivier also mentions that his wife, a medicinal chemist by training, also thinks his participation in LURN is a good thing because the more people participate, the more data is collected and analyzed to improve understanding of these conditions. Asked whether other men who are experiencing urinary tract symptoms similar to his should consider enrolling in a study like LURN, Olivier says “I would encourage them to do so. That way, there would be more information [collected to help improve] counseling in how to manage this.”
Additional Efforts To Help People with LUTS
As part of the overall LURN research efforts, there are several sub-studies designed to examine certain aspects of urinary tract problems in smaller groups of participants. For example, one of these is a neuroimaging and sensory testing study to provide additional data to help identify subtypes of LUTS. In this effort, researchers are using functional magnetic resonance imaging (fMRI) to examine brain structure and function as it relates to an empty versus full bladder. This approach may identify differences in brain areas involved in bladder control in participants with LUTS compared with those who do not have this condition. With other procedures, the researchers plan to explore whether people with LUTS have different central nervous system responses to auditory (hearing) and pain stimuli.
Asked whether other men who are experiencing urinary tract symptoms similar to his should consider enrolling in a study like LURN, Olivier says “I would encourage them to do so. That way, there would be more information [collected to help improve] counseling in how to manage this.”
LURN also plans to compare how participants report LUTS experiences over different time periods (e.g., 3-day, 7-day, and 30-day recall). These “recall” data will help LURN investigators determine the most appropriate reporting period for specific symptoms.
A LURN pilot study effort will test the feasibility of using urodynamics—procedures that look at how well the bladder, sphincters, and urethra are storing and releasing urine—in healthy, asymptomatic women to inform the design of a larger study to identify subgroups of people with LUTS. In the long term, LURN seeks to develop diagnostic organ testing protocols for both women and men with LUTS to identify different mechanistic causes that may give rise to similar LUTS profiles.
A second LURN pilot study seeks to discover potential biomarkers in women and men that could ultimately be used in clinical practice as a tool to measure the presence, severity and/or subtype of LUTS. In addition to providing potential insights into the biological mechanisms underlying LUTS, these biomarkers could one day be used as tools by clinicians to initiate more effective treatments and monitor the response.
For People with LUTS
The NIDDK is committed to acquiring new knowledge that will help lead to future strategies to better manage and, when possible, prevent the development of LUTS. Olivier’s struggle to attain an effective treatment plan is a reminder that more research needs to be conducted to help people with this burdensome condition. And Olivier’s participation in research, along with the many other study volunteers, is key to progress toward improving people’s lives.
This content is provided as a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health. The NIDDK translates and disseminates research findings through its clearinghouses and education programs to increase knowledge and understanding about health and disease among patients, health professionals, and the public. Content produced by the NIDDK is carefully reviewed by NIDDK scientists and other experts.