Battle of the bulge

Gay men suffering from impotence fight homophobia
-- and their own fears -- in the quest for treatment

by Jody Ericson

If Leonard Reynolds had it to do over again, if he could turn back 15 years of agony and humiliation, he never would have told his doctors at Harvard Pilgrim Health Care in Providence that he is gay. Suffering from sexual impotence, Reynolds* says that once he outed himself to his doctors, they assumed his problems were psychological and dismissed such physiological causes as a leaky vein or blocked artery.

As a result, Reynolds says, he has never known the pleasure of a satisfying, intimate relationship. Instead, his sex life has been a series of apologies and excuses, a pile of tossed-aside products -- vacuum pumps, tension rings, injections -- in the never-ending quest for an erection. Even crueler, when a health-care company began testing a promising new drug for impotence, Reynolds was barred from participating because he is gay (see "Clinical trials and tribulations" page 9).

"In this particular case, I do not know for sure what comes first -- his homosexuality or his psychological background," wrote Dr. Jacques Susset, a clinical professor of urology at Brown University, in a letter to Harvard Pilgrim in August 1996. To Reynolds, who'd been referred to Susset by a doctor at his HMO, the urologist seemed to be suggesting that his impotence was somehow related to his sexual orientation, "but I never brought homosexuality up as a negative in my sexual functioning," he says.

What's more, Reynolds says, Susset apparently had come to his conclusions before he had all the facts. Although Susset failed to respond to repeated requests for an interview, Reynolds says that "five minutes after I told him I was gay, he pointed at me and said, `I bet you'll turn out psychogenic.' " And sure enough, this was Susset's diagnosis.

During the time in which Reynolds was treated by Harvard Pilgrim (from the early '80s to '90s) there was an increased awareness within the medical community about the needs of gay and lesbian patients -- partially as a result of AIDS and the activism that sprung from it. On the other hand, doctors then also felt increasingly pressured by managed care and spiraling health-care costs to ration expensive tests and treatments. In Reynolds's case, these two trends may have worked at cross-purposes.

Indeed, because Harvard Pilgrim could not discuss Reynolds's case due to doctor-patient confidentiality, it's hard to say whether insensitivity to or inexperience with gay and lesbian needs, cost concerns, or a combination of these played into Reynolds's problems with the HMO.

Gay male impotence, after all, is a highly specialized condition. As Reynolds himself says, most doctors who treat sexual dysfunction deal mostly with straight, married couples. They are not used to the concept of sex with anonymous people, or even first-time sexual encounters, so they tend to prescribe treatments for "people in long-term relationships, those who have a vested interest in making their sex life work," he says.

In his case, the 40-something Reynolds is unattached and has a difficult enough time meeting men. Forcing your penis into a tiny rubber ring or sticking yourself with a needle right before sex isn't exactly an icebreaker. But when Reynolds mentioned this to his doctors at Harvard Pilgrim, he says, they refused to recommend other alternatives, such as penile implants or corrective surgery.

According to most statistics, 10 to 15 percent of all men have some degree of sexual dysfunction. How many of these men are gay, no one knows for sure. Nevertheless, the number is thought to be significant enough that several major publications have run stories on the subject in recent months. In the September 30 issue of the Advocate, a national gay and lesbian magazine, John Gallagher talks about how many impotent gay men suffer in silence, particularly in front of straight doctors, while POZ magazine published a piece last month about impotence among the HIV-positive, who are prone to low testosterone levels.

In both stories and like Reynolds himself, men complained about how certain attitudes within the medical community had kept them from getting the treatment they needed, either because a doctor was squeamish about discussing gay sex or because of what POZ describes as the "phobic fallout of HIV."

Dr. Judith Rabkin, a leading researcher at Columbia University who works with people with AIDS, says some urologists believe that treating HIV-positive men for impotence is not only a waste of time but unethical. One colleague actually likened the scenario to "giving Typhoid Mary a job as a cook," she says.

Dr. Mark Litwin, an openly gay urologist and an assistant professor of urology and public health at the University of California, Los Angeles, also has seen his share of homophobia within the medical community. Because of this, "I've spent a lot of time teaching the art of patient/doctor communication," says Litwin -- "sensitizing" his colleagues to the needs of the gay community.

According to Litwin, the causes of gay men's erection problems are no different than those of heterosexuals' -- depression, an anxiety disorder, increased stress, a physical condition, etc. "But where it can be socially more touchy," he says, "is when a gay patient starts talking to his doctor about sex with his lover, his boyfriend, or even his trick, for that matter."

And it's not just touchy for doctors. Gay men, Litwin says, probably feel more comfortable talking with gay doctors about such personal issues. To ease their discomfort, "doctors need to let them know that they won't be judged," says Litwin. Then they must get to know a patient well enough to recommend appropriate treatments. "A vacuum pump is really only for those people with partners who don't need to be impressed or courted," he says.

On the West Coast, Litwin says, doctors are gradually coming around to this more enlightened way of thinking. But according to Eric Mathewson*, Rhode Island's medical community is still in the dark ages when it comes to treating gay and lesbian patients. In his search for a cure for his sexual dysfunction, Mathewson has endured a steady stream of homophobia over the years, he says. One doctor went so far as to say that Mathewson's impotence was "a sign from God that I should go the other way," he says; another said it was a blessing in disguise, because it "kept me from getting AIDS."

But in reality, Mathewson's sexual dysfunction almost cost him his life. Desperate to find the person who could arouse him, "I used to have one one-night stand after another," he says, "and I'd get really drunk beforehand so that if things didn't work out, I could blame it on the alcohol."

Even worse, because he couldn't get an erection, Mathewson was usually the recipient during anal intercourse, which (contrary to what his doctor said) put him at grave risk for contracting HIV. Mathewson says he also has tried autoerotism, an extremely dangerous form of self-strangulation used for sexual stimulation. Today, he wonders how many other men have gone to such life-threatening extremes to achieve satisfaction.

Sitting in Reynolds's cozy living room on the East Side of Providence, Mathewson and Reynolds nod sympathetically at the other's every comment. It is not often they get to talk so openly about their sexual problems. Indeed, the pair share a secret that most of their other friends don't know about. Because the stigma of impotence is so powerful within the gay community, Mathewson and Reynolds keep quiet for the most part.

At first glance, this stigma might seem unusual for a community known for being open about discussing sex, but Litwin says this is precisely the point. "I hate to define the gay community by sexuality, but we obviously place a high value on sexual expression," he says. Impotence, then, "can make a person feel really depressed."

Mathewson goes even further in explaining the dilemma. "The gay community is very sex-oriented. It's almost a caricature of itself," he says. In gay porn, for instance, potency is emphasized above everything else.

As an example, Mathewson mentions Video Expo in Providence. Along with the usual array of X-rated videos and magazines, the store sells all kinds of phallic and penis-enhancing devices, including cheaper, more commercial versions of the vacuum pump.

The way it works, a man places his penis inside a plastic cylinder, pumps blood into it, and then puts a tension ring around the base to maintain an erection. At Video Expo, customers can choose among the "Blue Veiner," the "Plunger Pump," and the "Stallion Pumper," whose suction produces "BIGGER, HARDER, STRONGER results!"

Hanging from the wall in the store are so-called "cock rings," similar to the medically prescribed tension rings. At the counter are bottles of "Video Head Cleaner," an inhalant that supposedly increases your blood pressure -- and thus your chances of getting a hard-on.

Litwin says that mentioning impotence in such a sexually charged environment would be like mentioning it in a locker room full of football players -- it strikes at the core of male insecurity. But despite the silence, Mathewson and Reynolds say, they suspect that several of their friends suffer from sexual dysfunction.

"They're what you'd call `cock-teasers,' people who lead someone on but not to the point of intimacy," says Reynolds. Then there was the friend who became a priest -- Mathewson and Reynolds are fairly certain he did it to avoid his sexual problems.

Compounding the issue even more is the fact that some men discover their impotence around the same time they discover that they're gay. Occasionally, the two are related, but either way, it can double the shame and confusion. "Sexuality issues may revolve around being out or not," says Litwin. "Particularly for young men, deep-seated guilt may lead to erection problems."

Reynolds says that at first, "I thought everybody was like this [impotent]. Then, as I became more sexually active, I thought I was just nervous."

Confused over their reaction, even as to whether it was normal, Reynolds and Mathewson bluffed their way through one sexual encounter after another. For Mathewson, it didn't work. "I have never been able to keep a guy interested in me for more than a week," he says.

But Reynolds says that because he could at least get an erection sometimes, he managed to make it through one long-term relationship. Still, he spent most of his time trying to avoid intimate moments. And when he did find himself cornered by his lover, Reynolds would panic and latch on to whatever he could to explain his inability to maintain an erection. "I'd blame it . . . on the fact that my lover was getting old," he says.

Like Mathewson, Reynolds also abused alcohol, which can be a significant contributor to impotence. Reynolds told his partner this as well -- even though Reynolds's tests showed that his liver functions were normal.

Frantic to find something that would help, Reynolds turned to pornography -- and soon was addicted. "I kept needing a stronger and stronger image to get aroused," he says. Finally, after five years of this, Reynolds and his boyfriend split up. This was just the beginning, though, of Reynolds's problems.

Leonard Reynolds still remembers the first time he mentioned his impotence to a doctor at Harvard Pilgrim in 1981. "I actually referred to it as `sexual anxiety,' " he says. Unable to label his problem -- or to even explain it to friends -- Reynolds says he was particularly sensitive to what he describes as the "medical homophobia" that followed.

When asked about this, Jane Bruno, manager of public affairs for Harvard Pilgrim, repeats that doctors are not allowed to comment on specific cases. Still, she does say that she was surprised by Reynolds's discrimination complaint against the HMO with the Rhode Island Board of Medical Licensure and Discipline.

Harvard Pilgrim is "committed to meeting the needs of diverse populations," says Bruno. "We strive to provide high-quality, culturally sensitive care to all our [patients]." The HMO, for instance, was one of the first companies in Rhode Island to provide health coverage for same-sex couples, she says, and every year it participates in the state's Gay Pride parade.

Given the surge of malpractice suits in recent years, Bruno's reluctance to get into the specifics of Reynolds's case is understandable. What's puzzling, though, is the institution's reticence to discuss the issues surrounding the case, such as the HMO's alleged lack of experience in dealing with gay men's sexual dysfunction or the possibility of homophobia among its staff.

Dr. Thomas Platt, Harvard Pilgrim's director, was asked to be interviewed for this story, but like the doctors who treated Reynolds, he let Bruno do the talking for him. Clearly, cases like this touch a nerve. As Reynolds says, it's one thing to acknowledge gay patients -- it's another to become actively involved in their sex lives as their urologist. Many more boundaries must be crossed by both patient and doctor; stereotypes must be shattered, or the prognosis won't be good.

Reynolds says that initially, doctors suggested counseling for his sexual problems, and over the following ten years or so, he took their advice. Then, in the early '90s, Reynolds embarked on a massive research project on the origins of impotence. Stacks of medical textbooks later, he began to think his problems were physiological, he says.

Several times he requested to see a urologist at the HMO, but it wasn't until January 1995 that Reynolds was referred to Harvard Pilgrim's Dr. Alan Rote.

According to Reynolds's medical records, Rote recommended Yocon, an FDA-approved aphrodisiac. But after trying it for a year, Reynolds decided it wasn't for him. "All it did was increase my interest in sex," he says. "It made it easier to obtain an erection, but it was still difficult sustaining it." Suspecting he suffered from a leaky vein in his penis, Reynolds says that it "was like putting air in a leaky tire."

Eventually, Reynolds became more adamant about exploring the possibility of surgery, but he says that Rote remained just as adamant that this was not a viable option. Deeming the corrective surgery "experimental," the urologist told Reynolds that the vacuum pump and self-injection therapy were "the options that were available for treatment," according to Reynolds's medical records.

Frustrated with the recommendation -- and what it meant for his sex life -- Reynolds complained to Platt, Harvard Pilgrim's director. Reynolds says he asked Platt to allow him to see a doctor in Boston named Irwin Goldstein. A professor of urology at Boston University Medical Center, Goldstein is world-renowned for treating sexual dysfunction.

But instead of sending Reynolds to Boston, Platt referred him to a colleague of Rote's at the HMO, Dr. Alan Podis. Podis then referred Reynolds out of the network, to Susset in Providence.

According to Reynolds's medical records, Susset did perform some of the tests necessary to rule out physiological causes, including a so-called "rigi scan." Working almost like an electrocardiogram, the test required Reynolds to wear a cuff around his penis, so Susset could record the number of erections he had while sleeping. Over the course of three nights, the test showed that Reynolds had one erection that lasted 20 minutes.

To Susset, these results diminished the possibility of a physical problem by ruling out a "venous leakage." His conclusion, however, clashed with Reynolds's extensive reading on the subject -- one erection in three nights is hardly normal, he thought.

Reynolds was even more troubled by the fact that Susset based much of his diagnosis on another test -- a psychological exam that Susset himself, in his letter to Podis, described as geared toward heterosexuals. "They asked me questions like whether I was afraid to have sex with a pregnant woman," says Reynolds, "and how many times I'd had sex with a woman." To the latter, of course, Reynolds answered "never."

And based on such answers, Susset wrote that Reynolds "has `0' as far as [sexual] experience" and that "his gender definition is terrible." Thanking Podis for his "kind referral," Susset concluded by saying, "as . . . suspected, his problem is purely psychological. Psychotherapy may not get very far with this type of individual, but it certainly could be tried."

Only when Reynolds switched HMOs in January 1997 did he finally get referred to Goldstein, he says. And much to Reynolds's relief, Goldstein concluded that Reynolds's problems were indeed physiological. It wasn't a vein, however, but an artery causing the problem.

How did Goldstein figure this out? According to Reynolds, he ran a series of invasive diagnostic tests that Harvard Pilgrim had for years been reluctant to recommend. "He put probes right in the penis. What they determined was that . . . there were blockages in the arteries," says Reynolds. Almost immediately afterward, Goldstein recommended penile revascularization surgery.

In a final irony, Harvard Pilgrim did finally approve of Reynolds's visiting Goldstein -- but only after he'd committed to switching HMOs, he says. Even for Reynolds, it's hard to say whether the two events are related, but today, as he waits to be scheduled for surgery, he can't help but wonder.

Would things have been different had he told his doctors that he was a straight man with a steady girlfriend? Or were the doctors, in recommending the vacuum pump and injections over surgery, more concerned with cost than his sexual orientation? Gay men, after all, are not the only ones who have problems with HMOs. In an age where containing health-care costs is a national priority, there is an ongoing debate over how the medical community doles out care -- and over how it reaches its decisions.

Still, if this was a case of managed care at work, the irony is that Reynolds's doctors probably would've saved more money if they'd sprung for the expensive tests in the first place rather than spreading Reynolds's treatment out over 15 years. Now one step closer to a possible cure, Reynolds can only hope that his frustration and humiliation will soon be over.

Jody Ericson can be reached at jericson[a]phx.com.