How Stigma Obscures Rare Conditions Like Scrotal Lymphoedema

There’s a stigma surrounding below the belt issues for men. This Aussie doctor wants to change that

Health issues like scrotal lymphoedema can be debilitating and impact daily life, but men across the country aren’t seeking help out of shame, or because they simply don’t know their problems can be fixed.

IT’S MANY MEN’S worst nightmare to wake up one morning and find they have an issue in their undies or a blowout in their boxers. Damn, you might think, as cold panic grips you. Should I see a doctor? No way, you might say to your flushed, panicked face in the bathroom mirror. So, what do you do? You jump on google and hope to hell you find something, anything telling you this rather large lump on your scrotum is completely normal, nothing to worry about.

Stigma is rife in men’s health issues that affect areas below the belt. Studies have shown that prostate and testicular cancer are extremely likely to be stigmatised, largely because they’re concealable and won’t necessarily attract outward attention. And, of course, sex-related issues are often considered a significant affront to masculinity, particularly among young men.

Generally speaking, health issues relating to sex and the genital region are hushed up and dealt with privately—or not dealt with at all. Many men are hesitant to seek help and will only do so once the condition becomes unbearable, or a serious health risk. Cancer is life threatening, so in most cases people will choose life over any amount of perceived shame. But with non-life threatening conditions like testicular swellings, penile lumps and benign growths, treatment is frequently eschewed in favour of simply putting up with the pain and hoping it will go away by itself—usually, it won’t.

In turn, this approach leads to a two-fold problem. In addition to patients not seeking help, a low presenting rate for rarer issues means they aren’t studied and information on treatments are difficult to find. This can mean that even those who do want help don’t know where to turn.

This is a problem that Dr Quan Ngo, head of plastic surgery at Sydney’s Liverpool hospital and member of the Australian Lymphoedema Education, research and Treatment (ALERT) program, knows all too well. “When men have something wrong in that area, they don’t want to talk about it,” says Ngo. “Sometimes they’ll just let it get worse until it becomes unbearable.”

In particular, Ngo has come across a number of cases of scrotal lymphoedema, a condition which causes the scrotum to become swollen to such an extent that it can impede movement. Scrotal lymphoedema starts small, but as the condition worsens, it can become nearly impossible to ignore. “Many of the patients I see come to me because it’s gotten so bad that they can’t stand it anymore,” says Ngo.

By that stage, the issue is much larger than what it had to be, but due to the stigma surrounding what is ultimately perceived as an embarrassing condition, patients aren’t seeking help until it’s absolutely necessary. “When they finally do come to me, it’s because the area is too swollen, too tense, people have started saying things about it, or they simply can’t function normally anymore,” says Ngo. In addition to physical detriments, scrotal lymphoedema can also have serious social implications. “Some of my patients have had this issue lingering around for five to ten years and just don’t know what to do, so they’ve become socially reclusive rather than seeking help,” Ngo adds.

Ultimately, scrotal lymphoedema is fairly rare—although it is more common overseas. That rarity contributes to the stigmatised nature of the condition, and other below the belt ailments like it. According to Ngo, not all GPs—who are typically the first port of call when it comes to such issues—will have knowledge on the best way to treat rarer conditions. “Even when I went to medical school, scrotal lymphoedema wasn’t something we learnt about,” Ngo says. “I understand that we can’t learn about absolutely everything, but it means that when people are actually suffering from these rare conditions, they’re left behind by the system.”

The lack of professional knowledge on the subject only worsens the stigma surrounding it. With a dearth of information available online, Ngo says patients will often attempt to self-diagnose and not be able to find the right resources to get help. “When people have a problem, they turn to Dr. Google, and half the time it’s wrong,” he says. “So they continue on not knowing how they can help themselves.”

It’s factors like these which lead Ngo to believe that the real prevalence of scrotal lymphoedema and other below the belt conditions are likely much higher than what the statistics show. “I believe the real numbers would be much higher, and people just aren’t seeking help,” says Ngo. “I just want people like them to know that there is a way to fix it, but only if you do something about it.”


What is scrotal lymphoedema?


Lymphoedema is a condition which causes body tissue to swell due to fluid accumulation and occurs when the lymphatic system becomes blocked. The lymphatic system is a circulatory system that plays an important role in immune function. During an injury, the body sends inflammatory cells and fluid to help repair the ailment, which is why injuries get swollen. Once the injury has been repaired, the lymphatic system is responsible for taking away the extra fluid. When a blockage occurs in the lymphatic system, extra fluid is not able to be taken away from the afflicted region. Instead, more fluid is attracted and ongoing tissue swelling occurs.

Lymphoedema can occur anywhere in the body, as the lymphatic system stretches from head to toe, but scrotal lymphoedema specifically describes the enlargement of the testicular sack. Usually, the scrotum will only be slightly larger than normal and the changes won’t be visible to anyone but the patient themselves, but as the condition worsens, the swelling can reach extreme sizes. As Ngo explains, “It can get to the size of a grapefruit or a soccer ball. In the most severe case I dealt with it was bigger than a basketball. In some cases it can become so large that the penis will retract within the swelling.”

While milder cases of scrotal lymphoedema are less noticeable and can be ignored without causing a detriment to bodily function, that doesn’t mean they should be. “Physically even when it’s small it can cause discomfort and can have a negative impact in the bedroom,” says Ngo.


What causes scrotal lymphoedema?


Around the tropics, scrotal lymphoedema is more common and can spread through parasites. In Australia, it can be idiopathic, meaning it can arise spontaneously without a specific cause. “Sometimes people just wake up one day and notice it,” says Ngo.

The most common causes of scrotal lymphoedema in Australia relate to previous surgeries in which lymph nodes may have been removed. It can also be caused due to radiation exposure to lymph nodes from a previous treatment. Both of these instances are known as secondary lymphoedema, as they occur secondary to a prior treatment. Secondary lymphoedema can also be caused by physical trauma, which can create a blockage in the lymphatic system and result in scrotal lymphoedema. As Ngo says, “I had one patient who was accidentally shot in the pelvic region and it led to lymphoedema.” Primary lymphoedema refers to an idiopathic lymphoedema with no know cause, sometimes it can exist since birth.


How is scrotal lymphoedema treated?


Scrotal lymphoedema is more difficult to treat than other cases of lymphoedema. In other areas of the body, lymphoedema is treated through compression, with bandages used to squeeze out excess fluid and control the size of the swelling. The scrotal region is more difficult to manipulate, however, often requiring more extensive treatment. Ngo says that in most cases, when the swelling becomes too uncomfortable, the standard treatment is “to operate on the area, remove the excess fluid, resect the affected skin and then cover it with the softer skin next to it.”

Ngo warns that, due to the rarity of some below the belt conditions, not all medical professionals will know what the best treatment is. “When men have a health issue around the genital region they go to a specialist urologist. Urologists deal with things like prostate and testicular cancer, but most of them are not familiar with what can be done for this issue,” says Ngo. “For a urologist or a GP, their first thought is to recommend compression, but that is often not effective for treating scrotal lymphoedema.”

In speaking to Men’s Health, Dr. Ngo hopes that more people will be able to find the information they need to get help, and that the stigma surrounding scrotal lymphoedema and other below the belt health issues can be broken. He also highlights the work being done in Macquarie University’s ALERT program, a comprehensive lymphoedema treatment program involving a range of dedicated doctors, researchers and lymphoedema therapists. Ngo was the co-founder of the program’s surgical treatment options, but the majority of what happens at ALERT doesn’t involve surgery. Instead, the bulk of the work is being done is therapy, which is carried out by a team of therapists who treat people across Australia and New Zealand, train other therapists and promote awareness of lymphoedema.


Distressed Patient, Scrotal Lymphoedema

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