Epididymitis:

What it is, how you got it, and how to get rid of it.

Like a cat burglar who slips in while you sleep and is gone in the morning, epididymitis shows up uninvited, unexpected, and leaves you wondering how it got in. Worst of all, it sticks around for weeks, maybe even months. Or, if you’re really “lucky” like me, it shows up again and again and again — decades later.

My first episode began in rehab in the caveman era, 1965. Lying on my back in the hospital, I began feeling weird and antsy, and then came pain somewhere in my urinary tract. I got sick, feverish, and the pain intensified. That’s when I realized the pain was coming from the area we euphemistically call “the groin” — reminding me of the day I was playing shortstop in high school and caught a bad hop in my balls.

For the next week, lying there in my hospital bed, morphine became my best friend, but no medication could stop the swelling. My entire scrotum got way oversized, with shiny skin stretched so tight I had to create a kind of tent to avoid contact with the sheets. I actually began to worry that it might explode.

Exaggeration? No doubt, but such is the mind of a 20-year-old. Fortunately, when the swelling finally subsided and snuck away into the dark a couple of weeks later, it didn’t return for a very, very long time. Now, as I write this, in December 2020, I’m still battling to get rid of recurring epididymitis infections.

A UTI in Disguise

The epididymis consists of tiny coiled tubes in both testicles where sperm is created and stored. Sperm exits into the urethra by way of the vas deferens, but when foreign pathogens, most likely E. coli (but any number of different bacteria are possible), make their way up the vas deferens and into the epididymis, inflammation and infection can take over the family jewels.

Young males typically contract it through sexual disease pathogens, while older males, especially those with a neurogenic bladder, tend to run into problems with urine-borne bacteria. But how do bacteria enter the epididymis in the first place?

I spoke with two experts, Dr. David A. Ginsberg, professor of clinical urology at University of Southern California and chief of urology at Rancho Los Amigos National Rehabilitation Center; and Dr. Michael J. Kennelly, professor of urology and obstetrics and gynecology at Carolinas Medical Center and the University of North Carolina, Charlotte. Both are members of the Neurogenic Bladder Research Group, which focuses on bladder issues in the spinal cord injury population. Both lamented the lack of published research on epididymitis and SCI, and both agreed on the risk factors.

“Suboptimal bladder management can lead to higher bladder storage pressures, which is the most likely cause of infection,” says Ginsberg. “From my personal experience of over 25 years in clinical SCI urologic medicine, I have found that bladder management method and bladder storage pressure are key risk factors for development of epididymitis/orchitis,” adds Kennelly. Orchitis refers to an inflammation of one or both testicles. “Male patients who are reflex voiders and who have detrusor and external sphincter dyssynergia [see explanation in next paragraph] or elevated detrusor leak point pressures are at the highest risk of infections. The high pressure against a closed external sphincter can cause reflux of pressure, urine and bacteria into the vas deferens and then back up to the epididymis and testes.”

In layman’s language, the detrusor (bladder wall muscle) and bladder sphincter (which opens to allow urine flow into the urethra) normally work together in a well-regulated system. Spinal cord injury interrupts that system, often causing reflex voiding and elevated pressures, which can cause backward flow of urine and bacteria into the epididymis and testes. While existing studies in males without SCI indicate that, compared to urinary tract infections, epididymitis is not common, I did find one South Korean study (Ku, Jung, Lee, 2006) that claims it may happen in more than 25% of males with SCI (see “Studies on Epididymitis”, below).

In order to better understand your bladder pressure, both Ginsberg and Kennelly suggest having a complete urodynamic study done in consultation with your urologist. As the author of NEW MOBILITY’s Bladder Matters and Para/Medic columns, Bob Vogel repeatedly advocated for the importance of regular urodynamic studies. Over 35 years as a super-active T10 para, he developed a bladder management routine that helped him almost totally eliminate UTIs, but he still fell victim to epididymitis.

Shortly after turning 60, Vogel felt the symptoms he associated with the onset of a UTI. He had some Levaquin on hand and took it for three or four days, but it was ineffective. When he noticed a slight swelling in one of his balls, his nurse-practitioner prescribed Bactrim, but the swelling and pain continued for another four days, and his fever spiked at 102 degrees. She switched him back to Levaquin and told him to go the ER, where they did bloodwork and an ultrasound and diagnosed epididymitis.

“Overall, I took about 10 more days of Levaquin and the swelling was still there,” he says. “I had to be extra-careful transferring and moving. The fever and body aches went away but the swelling was insanely slow to go down.” It can take as much as six weeks or more.

So what is his advice for others who think they might have it? “You’ll probably think it’s a UTI, but just as soon as you see the slightest swelling or pain, go see your doc right away and make sure they know it’s not acting like a routine UTI. They can be fooled,” he says. “The key is recognizing the swelling, and pain if you can feel it, and uncharacteristic fever and aches. Going to an ER will result in your getting a urine culture, bloodwork and ultrasound, which will indicate swelling. Then they’ll know what to do. Be very patient and careful. It could take several weeks to clear up.”

Scary Symptoms

Eric Stampfli, 62, another NM contributor and a T11 para for 44 years, had his first run-in with epididymitis about five years ago. He didn’t notice the swelling at first, but felt sick and had a fever of 103. Knowing he’d need a PICC line because he is resistant to many antibiotics, he went to the ER. “I noticed the swelling in one ball when cathing, so they did an ultrasound,” he says. “I got pretty sick.” The infection proved resistant to the first antibiotic, and only cleared up after doctors switched him to an even stronger drug. “I was maybe only three or four days in the hospital, then went home on the PICC line for another seven days.”

How did it compare with a UTI? “It was a different kind of pain, a deeper pain. I wanted to throw up,” says the photographer/graphic artist. “For the first 10 days or so, it messes you up. You have to be very careful about travels. I didn’t do my normal stuff. I didn’t feel up to it.”

A couple of years later, he had a second bout. This time he knew what to look for. “I caught it much faster, and it never got to being bad. They put in a PICC line, it just started to swell, fever not as bad. I noticed my scrotum was warm, even hot. I stayed home. The swelling was much less, but tender. It was a good 10 days or more before I was back to normal.”

To avoid full-on infections, Stampfli urges others to listen to their bodies and heed early warning signs like autonomic dysreflexia and increased spasticity. He has problems with restless leg syndrome and says that infection makes it worse, and sometimes it precedes infection.

Kevin Hansen of Eugene, Oregon, a 68-year-old C4-5 quad, first got epididymitis when he was a young man in rehab in 1975. He remembers his scrotum got very large and stretched tight. “It was horrible, it was scary. I had pain, dysreflexia and high blood pressure. And a high temp.” It took a couple of rounds of Cipro, an antibiotic in the same family as Levaquin, to get rid of all the symptoms. “Some of being scared was psychological, my fear as a young man of something going wrong down there (see “Epididymitis and Infertility”, below).”

In 2019, 44 years after his first epididymitis, Hansen got sick again. “At first I thought it was a UTI. That’s what a doc said. But it was different because of the swelling and pain. This time one of my testicles got hard on the top, like it was calcified.” Most likely an abscess had formed or partially formed — another potential complication from epididymitis. He started taking Levaquin but the symptoms lingered for a long time. He thinks he also may have experienced a Levaquin side effect — tendon soreness or damage — which Bob Vogel also suspected of his use of Levaquin (see “Popular UTI Antibiotics and Tendon Rupture” NM, June 2019). “I think it took six weeks for the swelling to get softer and go down,” says Hansen. “Epididymitis is not fun.”

An Unwelcome Return

In 2016, more than a half-century after my first epididymitis episode, swelling, abdominal pain and sickness struck again. It was late on a Thursday. In denial, I thought I could fight it off but had to go to the ER on Saturday when the pain and swelling became severe. There was also a substantial discharge of pus from my urethra over days — this is known as pyuria, which most often occurs in older men.

An ultrasound confirmed epididymitis. I stayed in the hospital with IV antibiotics for three days, then was discharged and took Cipro at home orally for six weeks. It struck again in late 2018 and has been a chronic problem since. Each infection responded to antibiotics, usually Cipro, but another infection would follow four to six weeks after completing treatment.

After six successive episodes, I went on a quest. Why did this swelling keep returning? Three different urologists I consulted agreed that surgery might be needed, but each one had a different plan. By this time, I had undergone multiple MRIs and retrograde urethrograms, and four more infections brought me to December 2020.

The latest MRI finally showed the real problem: a fistula — a channel, like a sinus tract — had formed adjoining my urethra and now reached into my scrotum. Urinary bacteria apparently travels from my bladder to my urethra, takes a detour into the fistula and ends up in my scrotum. In my experience, apparent symptom-free colonizations in the bladder can morph into full-blown infections in the scrotum. A fistula is not common, but it does happen and may be associated with decades of intermittent cathing.

Because of the COVID-19 pandemic, I have resigned myself to postpone surgery until I can get a vaccine. At 75, with coronary artery disease, diabetes and an immune system most likely compromised by 55 years of paralysis, that seems like the smart move.

I have spent a great deal of time studying this weird but nasty disease. In short, it can strike at any age, but is somewhat more likely in older males. The main takeaway is to get professional help as soon as possible. Battling epididymitis is more difficult than controlling UTIs and fraught with potential complications, such as infertility, autonomic dysreflexia and abscess formation. It is nothing to mess with, not just another annoying complication.

Relevant Studies

• Influence of bladder management on epididymo-orchitis in patients with spinal cord injury: clean intermittent catheterization is a risk factor for epididymo-orchitis, pubmed.ncbi.nlm.nih.gov/16151451
• Contemporary role of suprapubic cystostomy in treatment of neuropathic bladder dysfunction in spinal cord injured patients, pubmed.ncbi.nlm.nih.gov/18551568
• Urethral versus suprapubic catheter: choosing the best bladder management for male spinal cord injury patients with indwelling catheters, pubmed.ncbi.nlm.nih.gov/19823191
• What are the differences between older and younger patients with epididymitis?, ncbi.nlm.nih.gov/pmc/articles/PMC5419104
• Urogenital Infection as a Risk Factor for Male Infertility, ncbi.nlm.nih.gov/pmc/articles/PMC5470348

Other Resources

• Guidance and Options for Indwelling Catheter Users, newmobility.com/2018/03/guidelines-options-indwelling-catheter-users
• Popular UTI Antibiotics and Tendon Rupture, newmobility.com/2019/06/popular-uti-antibiotics-and-tendon-rupture/

Epididymitis and Infertility

When Kevin Hansen got over epididymitis for the first time in 1975, his urologist told him he’d never be able to have children. “I had a low sperm count following the infection, so the priority of having children was low,” he says. He and his wife, Connie, did not have children, but he found other ways to interact with youth. He started a coaching career in 1984 and has been involved with coaching wheelchair athletes ever since, including Craig Blanchette, the double-amputee wheelchair athlete who won a medal at the 1988 Seoul Olympics and was in a Nike commercial. “I think the loss of ability to have kids increased my incentive to have more to do with kids,” he says.

Hansen later became familiar with SCI issues, including how to enhance fertility, as founder of the Portland chapter of the National Spinal Cord Injury Association. Now he thinks his urologist’s earlier opinion was influenced by the medical bias of the time.

According to a 2017 study, approximately 10% of men from the general population who have had acute epididymitis develop persistent azoospermia (no sperm production from the infected testis), and 30% develop oligozoospermia (malformation and poor motility of sperm).

Scarring from infection can result in partial obstruction of ducts in the epididymis, resulting in decreased sperm count, or complete obstruction that prevents sperm from passing into the vas deferens. However, a surgical operation called a vasoepididymostomy can bypass the obstruction and join the epididymitis with the vas deferens to allow passage of sperm into the urethra. In oligozoospermia, where sperm is malformed and has reduced motility, the percentage of viable sperm is reduced, sometimes significantly, which can result in poor chances of fertilizing an egg.

Even though, according to the study, epididymitis results in poor fertility in less than 30% of men, the bottom line is not all about numbers. With epididymitis, usually only one testicle is involved, meaning not all is lost. Since this study was not focused on SCI, however, chances are that males with SCI are more likely to experience epididymitis, resulting in lowered fertility, mainly because the resulting neurogenic bladder raises the risk factor of infection.

Today, improved options for achieving pregnancy are more numerous than ever, and men with SCI are successfully becoming biological fathers in greater numbers. New techniques that gave rise to home-use vibrators with special design and optimal frequencies have made sperm-collecting techniques performed in hospital operating rooms more of a rarity.

In 1985, 20 years following my first epididymitis infection, my wife and I traveled to Cleveland for a try at electroejaculation, in which my sperm, estimated at about 30% of normal numbers, was collected in a simple operating room procedure. Then, through intrauterine insemination, it was introduced into my wife.  Three tries over three days resulted in only one viable collection, after centrifuging and washing semen to remove urine, and the procedure did not result in pregnancy. Since the trip and operation were paid for out-of-pocket, we could not afford another try. But the story has a happy ending. In 1986 we adopted a baby daughter, just one day old, who has given us four healthy grandsons.

Studies on Epididymitis

In my research I found some studies that are informative, if not conclusive. A 2005 study of 140 males with SCI found that clean intermittent cathing — as opposed to sterile technique — is a risk factor for epididymitis/orchitis. It has long been known that indwelling urethral catheter use is also a risk factor. However, a 2008 analysis of 56 earlier studies concluded that CIC has resulted in improvement in bladder infections and complications; suprapubic cathing has since been proven to be similarly effective. A 2010 study conducted by Long Beach Veterans Hospital of 179 male patients found similar rates of complications from UTIs in both urethral catheter use and suprapubic tube use; however, UC use is associated more often with urethral and scrotal complications. This may suggest that where epididymitis is concerned, UC is not the best option. Overall, though, this same study suggests that an individual cathing method is best selected “on the basis of long-term comfort for the patient and a physician mind-set that allows flexibility in managing these challenges.”

I also found two 2017 studies (both from a general population), one comparing epididymitis in younger and older males, and the second covering infertility as a complication of epididymitis, which is treated in a separate sidebar.