“You don’t understand” is a statement I heard a lot in the last weeks in our office. It came from a range of individuals who were finally feeling free to explain what it was like to live with bladder or bowel incontinence.

The demands can be difficult to cope with – requiring a hair trigger to run to the nearest bathroom, always carrying extra underwear, canceling important events with friends, family, and social groups. By asking a series of questions about it, I had unleashed pent up emotions and explanations that rarely had opportunity for expression.

Suffering in Silence

Many individuals living with bladder or bowel leakage have been embarrassed and forced to adapt to the problem alone, even in secret. One 62-year-old mother of three and grandmother of six told me that she had not shared it with her own children, even though bladder incontinence was responsible for several cancellations on her part to family events. 

If the sale of liners, pads, and adult diapers is any indication, the problem of incontinence is widespread and accelerating.

But there is no need to suffer in silence.

A Problem on the Side

Like a lot of niche problems in medicine, incontinence is not something that is widely taught in medical schools or even in the relevant specialty residency programs.

One would think that every residency program training doctors in gynecology, urology, obstetrics, surgery, and gastroenterology would spend significant time teaching the human impact of incontinence and familiarizing these new doctors with both the empathy needed and the range of treatments available. But alas, that is not the case.

Few specialists take an interest in the problem or really do the study necessary to become experts at treating bowel and bladder leakage. The peer-reviewed medical research on the topics is complicated, and it is not easy to untangle.

Most physicians, even those in the relevant specialties, are simply too busy with other aspects of the profession to take the time to learn about incontinence and treat it successfully.

Empathy Is the Key

But for those caregivers who do invest their time and understand the impact upon their patients, it is very rewarding. Individuals who have been suffering with overactive bladder, bladder leakage, and bowel leakage are among the most grateful people in the world when you can solve the problem for them.

The struggles with pads, diapers, accidents, embarrassing exits from events, and the increasing social isolation, give way to a restored and fulfilling life once the bowel and bladder problem is solved.

And there has never been a better time to treat this problem. Our scientific understanding is far more advanced than it was 20 years ago. And the treatments are far more successful, far simpler, far safer, and far less invasive than they ever were.

Look for the Right Doctor

If you or your loved one suffers with overactive bladder, bladder accidents, or bowel leakage, take a little time to find a doctor who has invested time in understanding the problem, and seek a consultation.

The process starts with explaining the symptoms, their frequency, and what measures have been done to try to treat the problem to date. Then, a range of solutions may be discussed, and sometimes the best solution involves multiple treatments.

Plenty of Solutions

At our center we emphasize a special pelvic floor therapy exercise regimen which anyone can do at home with a little guidance, combined in many cases with sacral neuromodulation, a tiny, implanted chip device that acts like a pacemaker to restore the natural pelvic floor muscles.

There might also be a role for injectable bulking therapies, dietary and medication adjustments, and even surgery. The surgical options are of course more invasive, so they are often avoided until less invasive therapies have been tried.

The sad fact today is that tens of millions of Americans suffer with incontinence, and most of them have not received good advice or adequate therapy even when they have brought it up to their medical providers.

It leaves many individuals with the mistaken impression that there simply is no solution, and it is something they must live with.

It’s Not All Frustration

When I ask people to start telling me more about the problem, I tend to hear an awful lot about the frustrations of dealing with the accidents, the past treatments that have not worked, the medications that only offer side effects but no benefits, and the lack of proper concern among some medical providers.

So, I tend to hear “you don’t understand” with some frequency because people suffering with the problem rightly deserve to be heard and explain the profound impact on their lives.

The good news is that today, the solutions I have outlined above are around 90% successful at resolving the problem. One day I hope they’ll be at 100%!

Have you cancelled an event – reunion, family gathering or something else – because of incontinence issues? How has that made you feel? How has it affected your relationships? What do you feel when you think about incontinence?