Longtime diabetes advocate and media personality Benno Schmidt remembers thinking that his days of having a normal sex life were over.
He was in his early 40s and had been living with type 1 diabetes for about two decades at that point, and though Benno had heard about many complications and was experiencing retinopathy in his eyes, the complication that haunted him turned out to be erectile dysfunction (ED). It is of course one of the less-often discussed topics in the diabetes patient community, and even in doctor's offices. Too often, it's ignored altogether or mentioned only in hushed tones.
June is Men's Health Month, so a particularly fitting time to share Benno's story. His message of hope may resonate with far more men in the D-Community than we realize.
Common But Hidden
Per the National Institutes of Health (NIH), ED is defined as "a consistent inability to have an erection firm enough for sexual intercourse. The condition includes the total inability to have an erection and the inability to sustain one. It affects as many as 30 million men in America, according to Joslin Diabetes Center. Of course, men with diabetes are at a higher risk with scientific research showing roughly 50% of male PWDs experience ED to some extent.
What causes the higher risk, you may wonder? Well, there are a number of factors at work, but for men with diabetes it often boils down to damage to nerves, blood vessels, and muscle function -- often impacted in men the longer they live with diabetes and especially for those with higher blood sugars over time. There are often psychological aspects that come into play when diagnosing ED too, which is why it's so crucial to talk with our doctors about this.
Despite the prevalence of ED, too few of us are willing to share sexual performance issues when they materialize, so they often go undiscussed. That leaves many guys who face fears and concerns about "getting it up" without much peer support to rely on. Heck, even talking to spouses and significant others can be a seemingly insurmountable roadblock, especially for married couples who are hoping to have children together.
That's where Benno's story comes in, s it's the journey with ED that he faced for many years.
Benno's Story: Diabetes, Erectile Dysfunction and Depression
You may recognize Benno's name and face as a media personality and Emmy-nominated journalist, whose resume includes prominent work on CNN, NBC, ABC, CBS, 60 Minutes, as well as his years of hosting the CNBC show D-Life (which is no longer on air) along with fellow D-peeps Nicole Johnson, Jim Turner, and Mother Love.
Diagnosed with T1D at age 20 during his sophomore year of college, Benno says the ED set in slowly over the years and gradually worsened. While ED can become permanent for some men, it's often able to be treated -- and so that is what Benno tried once he decided to address this complication.
He turned to prescription medications that are commonly referred to as first-line treatments for ED: Viagra, Cialis, Adcirca, and other related meds. They worked, for a while. Then he turned to other options to help increase blood flow to get and maintain an erection, including suppository treatments, and later injections. As before, they worked initially but eventually petered out.
"It was a slow evolution, to the point where I just had no function," he says.
Eventually, Benno says he began to accept a reality of not having conventional sex and not being able to naturally father any children.
He vividly remembers the feeling of not wanting to have the conversation, in his own marriage or with his medical care team. He just wasn't comfortable having the conversation with anyone. And the topic made him depressed, something that also runs in his family.
It's just sex, he recalls telling himself.
Of course, Benno now realizes his mindset at the time was a faulty one, because one's sex life impacts so many other parts of life -- particularly when it comes to diabetes where everything is interconnected. In hindsight, Benno recognizes that experiencing ED affected all aspects of his physical health and led to depression, that in turn made D-management even more challenging than normal.
That all went on for several years, Benno says, until he found help through his professional work as host of the TV show D-Life. He was able to meet a New York diabetes specialist who told him straight-up: "You don't have to live that way. There is hope."
In November 2013, Benno underwent a penile implant surgery and received a permanent replacement, with the implant using a pump to restore functionality. This is pretty much a last treatment resort, he acknowledges, and there's no going back once you have that implant. While the surgery and implant aren’t cheap, Benno recognizes he's lucky to have had insurance that covered most of the cost of the procedure. As with most things in healthcare and diabetes affordability, Your Insurance Coverage May Vary and there are also financial assistance programs in place for procedures like this.
But it was worth every penny, Benno says. Within a couple of years of the surgery, the miracle surprise for Benno and his wife was welcoming their son, who is now almost 4 years old!
“That was a real life-changer for me, a blessing that I just thought I’d never have, as a man with diabetes experiencing this,” Benno says.
Finding Support for Living with Erectile Dysfunction
Benno now knows that his ED journey isn't unique -- especially with the odds so high for men with diabetes to experience this complication. But so many just don't talk about it or even get treatment.
That's why he's chosen to share his story publicly, to encourage other men to discuss this. He emphasizes the importance of talking frankly not only with your significant other, but also with healthcare professionals and even other men with diabetes who are willing to share. Specifically, Benno suggests the following:
- Don’t ignore it. You may not want to talk to a healthcare professional about this, but it’s an important topic to address as early as possible. Doctors don't always ask about ED, so you may have to bring it up first.
- Even with “good” A1Cs and in-range blood sugars, ED can still happen and it most likely won’t cure itself (provided it’s physical and not a mental-related problem).
- After talking to your own doctor and care team, consider consulting a urologist for a deeper dive into your specific symptoms and what treatment options might be best.
- Don’t isolate yourself and bury feelings about this particular diabetes complication. Talking regularly with your loved one/ spouse/ significant other about ED is crucial!
- Find support, whether it’s in the form of a loved one/significant other or peer support online or IRL. “There’s all kinds of help out there,” Benno says.
Benno shares his message on places like EDCure.org in the hopes of connecting with other men who may be hesitant to talk about this issue or connect with others who can offer support or advice. That is one site that shares "real stories" from men experiencing ED, whether they live with diabetes or not. Other resources that can be found through Google search include men's health forums, posts dealing with ED-related marriage woes, this wife's firsthand POV, plus tips on how to best support a partner experiencing ED.
That kind of resource is what Benno was missing at the beginning of his ED journey, and it's something he regrets not seeking out earlier.
“This is not a luxury,” he said. “This is a quality of life issue. Talk about this just like you would any other diabetes complication. Work sexual function into those conversations -- just like you would with eyesight or nerve damage, or if you needed a heart fix or knee repair -- in order to be healthy and happy in life.”