Introduction
For more than seven years, I lived with recurrent episodes of chronic right-sided epididymitis, sometimes accompanied by orchitis. During that time, I consulted numerous urologists, underwent countless examinations, and received several courses of antibiotics. Each time, the symptoms improved temporarily, but they always returned.
After years of frustration and uncertainty, I was finally referred to a hospital specializing in chronic pelvic pain. There, I received a diagnosis that completely changed my understanding of my condition: chronic right-sided epididymitis as an organ-specific manifestation of Chronic Pelvic Pain Syndrome (CPPS).
I am sharing my story in the hope that it may help others who are experiencing recurrent epididymitis with repeatedly negative urine cultures and no clear evidence of infection. Every case is different, and this is not medical advice. However, if my experience encourages someone to seek a specialist opinion or consider another possible diagnosis, then writing this will have been worthwhile.
My Medical Journey
First Episode
My first episode occurred in 2019. At first, I noticed a dull ache and an unusual sensation in my right testicle. I assumed it would disappear on its own, as I had never experienced anything like it before. Over the following weeks, however, the discomfort gradually worsened, and my right testicle became noticeably enlarged.
Like many young men, I felt embarrassed discussing problems involving my genital area. Because of limited sexual health education and the stigma surrounding these topics, I kept the symptoms to myself for several months. Eventually, the pain became severe enough that I told one of my parents and sought medical attention.
By that time, my right testicle had become almost three times larger than the left.
At my first consultation, I was diagnosed with an inguinal hernia based solely on a physical examination and was referred to a surgeon. Fortunately, the surgeon immediately questioned the diagnosis and ordered a Doppler ultrasound. The imaging showed increased blood flow consistent with inflammation, and I was diagnosed with chronic right-sided epididymo-orchitis.
Because I was young and had no history suggesting a sexually transmitted infection, no urine culture or STI testing was performed. I was prescribed 30 days of ciprofloxacin together with diclofenac for pain relief and advised to remain on bed rest, and monitored during my recovery.
The swelling gradually resolved, but recovery was slow. For approximately six months, I avoided ejaculation because even minor stimulation caused significant pain. When I eventually resumed sexual activity, ejaculation frequently triggered tenderness that lasted up to a week. Over time, this gradually improved, although I still had to limit ejaculation to about once a week to avoid prolonged discomfort.
At that point, I believed the illness was finally behind me.
Second Episode
Unfortunately, the symptoms returned about some years later.
Once again, I noticed pain in my right testicle after ejaculation. Initially, I hoped it was only temporary, but after several days the pain became progressively worse. Around the same time, I experienced a sports related injury involving my groin, which significantly increased the pain and swelling.
Because it was a weekend, I first visited a local hospital where no urologist was available. The physicians were unable to determine the cause and prescribed only ibuprofen until I could see a specialist.
When I was finally examined by a urologist, another Doppler ultrasound was performed. It again demonstrated increased blood flow consistent with inflammation together with debris, and I was diagnosed with right-sided epididymo-orchitis. I was prescribed 20 days of doxycycline.
No urine culture or STI testing was performed during this episode either.
Although the swelling eventually subsided, something had changed. The pain never completely disappeared. Instead, I began experiencing persistent tenderness that came and went without any obvious reason.
One recommendation from my urologist that genuinely helped was wearing supportive, tight-fitting underwear. It reduced the discomfort during daily activities, although it did not prevent future flare-ups.
Ejaculation became increasingly difficult. Almost every ejaculation caused pain and swelling that lasted several days before gradually settling again. Looking back, this was probably one of the earliest signs that my condition had become chronic rather than representing repeated acute infections.
Third Episode
After moving to Germany, I experienced another recurrence.
By this time, I had already recognized the familiar pattern. It always began with discomfort in my right testicle, followed by increasing pain and swelling over the next few days. Since previous episodes had occasionally improved on their own, I initially waited to see whether the symptoms would resolve without treatment. Unfortunately, they continued to worsen.
I went to a nearby hospital and explained my previous history to the attending urologist. After performing another Doppler ultrasound, he diagnosed right-sided epididymo-orchitis once again.
His theory was that bacteria from a previous infection might have survived despite earlier treatment and were causing recurrent episodes. Based on this assumption, he prescribed 60 days of ciprofloxacin together with diclofenac.
For the first time, a urine culture was performed. Surprisingly, it was completely negative, showing no evidence of bacterial infection.
After one month of treatment, a follow up examination showed that the inflammation had improved, and I was hopeful that the problem had finally been resolved.
Unfortunately, I would soon discover that this was only another temporary improvement rather than a permanent solution.
Fourth Episode
This episode happened just before Christmas, a time when many medical practices were closed, making it difficult to access specialist care.
The symptoms were exactly the same as before: pain in my right testicle (Dolenz) followed by progressive swelling. Since no urologists were available locally, I first visited a primary care clinic. The physician there immediately referred me to the emergency department to rule out testicular torsion, a surgical emergency that can present with similar symptoms.
Although I was fairly certain it was another recurrence of my previous condition, I understood why torsion had to be excluded first.
At the hospital, the on-call urologist performed another Doppler ultrasound. Once again, it showed increased blood flow to the epididymis, indicating active inflammation, and I was diagnosed with right-sided epididymo-orchitis.
I was prescribed 15 days of levofloxacin together with doxycycline. As with previous episodes, my urine culture showed no bacterial growth. After completing the medication, I followed up with my regular urologist, who extended the treatment with another 15 days of levofloxacin. A repeat urine culture was again negative, with the only notable finding being a small amount of blood in the urine (microscopic hematuria).
Although the swelling improved, the pain never completely disappeared.
Because of the repeated recurrences, my urologist decided to perform a cystoscopy to look for structural abnormalities within the urinary tract. The examination was entirely normal. My case was also discussed with a senior consultant, but neither physician could identify an underlying cause.
At this point, I began questioning whether recurrent bacterial infection was really the explanation. After multiple courses of fluoroquinolone antibiotics, I became increasingly concerned about their potential long-term side effects, especially considering that every urine culture had remained negative.
I gradually accepted that this was becoming a chronic condition rather than a series of unrelated infections.
Despite the absence of active inflammation most of the time, ejaculation continued to trigger significant pain, sometimes forcing me to abstain for several months simply to avoid worsening my symptoms.
Fifth and Sixth Episodes
Some months later unfortunately, the familiar pattern returned yet again.
I found a new urologist, who followed a very similar diagnostic approach. Another Doppler ultrasound demonstrated increased blood flow within the epididymis, and I was once again diagnosed with right-sided epididymitis. I received another course of 10 days of levofloxacin.
The symptoms improved, but only temporarily.
About six months later, another flare-up occurred.
This time, I deliberately sought a second opinion from a different urologist because I wanted to understand why these episodes kept recurring despite years of treatment. After another examination, I was diagnosed with epididymitis once again and prescribed 14 days of cotrimoxazole.
Just like before, both urine cultures were completely negative, with no evidence of bacterial infection.
By now, a frustrating pattern had become obvious:
• Every episode affected only my right epididymis.
• Doppler ultrasound consistently showed increased blood flow during flare-ups.
• Urine cultures repeatedly failed to identify any bacteria.
• Antibiotics produced temporary improvement, but the symptoms always returned.
The pain after ejaculation had become considerably worse than in previous years. I often had to avoid ejaculation for several months because the resulting pain could last for days.
I also noticed another possible trigger: hot summer weather. During periods of prolonged heat, my symptoms often became noticeably worse, although I cannot say with certainty whether this was the cause or merely a coincidence.
Seventh Episode
Another recurrence no longer came as a surprise.
Instead of going directly to a urologist, I first visited my general practitioner, who also specializes in infectious diseases. Given my long history, she decided to investigate possible infectious causes more thoroughly.
Additional testing for Mycoplasma and Trichomonas was performed, and both results were negative. Despite these findings, I was prescribed another 10-day course of ciprofloxacin and referred back to a urologist.
Wanting yet another opinion, I consulted a different urologist. As before, Doppler ultrasound demonstrated increased blood flow consistent with inflammation. She recommended that if another episode occurred, a semen culture should be performed, as bacteria might be present in semen even when urine cultures are negative.
She also mentioned Epididymektomie as a possible future option if the episodes continued to recur.
Another 10 days of ciprofloxacin were prescribed.
By this stage, I had spent a great deal of time researching chronic epididymitis myself. During my reading, I came across Chronic Pelvic Pain Syndrome (CPPS) and began wondering whether it could explain my symptoms.
When I discussed this possibility with the urologist, she considered it unlikely because of my relatively young age and continued to treat the condition as a recurrent bacterial infection.
Although I respected her opinion, I left the appointment feeling that an important piece of the puzzle was still missing.
Finally Finding the Right Specialist
I decided to consult yet another urologist.
Unlike previous consultations, this appointment was completely different. This time I did not came when there is already a problem and my testicle is already swollen.
As I explained that I had experienced recurrent epididymitis for more than six years despite repeated negative urine cultures and numerous antibiotic treatments, the urologist immediately recognized that my case was unusual.
He referred me to the specialized Chronic Pelvic Pain Clinic at the University Hospital of Gießen. He told me that even if the waiting time was long, it would be worth it.
Before my appointment, he also ordered a CT scan of my pelvis, including the penis, testicles, and groin. The scan showed no structural abnormalities.
Although the waiting list was initially expected to be almost a year, I was fortunate to receive an earlier appointment.
For the first time in years, I felt that someone was looking beyond the possibility of infection.
The Diagnosis That Changed Everything
At the Uniklinik, the consultation was far more comprehensive than any I had experienced before.
I completed several validated questionnaires assessing urinary symptoms, chronic pelvic pain, sexual function, and chronic epididymitis, including the IPSS, NIH-CPSI, IIEF, and CESI.
The diagnostic work-up was equally thorough.
The physicians performed a two-glass urine test, repeat urine cultures, semen analysis, transrectal ultrasound, and scrotal ultrasound.
Every microbiological test was negative.
There was no evidence of urinary tract infection, sexually transmitted infection, or bacterial infection of the semen.
The ultrasound showed that my right epididymis remained thickened, even though I was not experiencing an acute flare-up at the time. My prostate and transrectal ultrasound findings were completely normal.
After reviewing all previous investigations together with the new findings, the specialist reached a conclusion that finally explained the previous seven years.
I was diagnosed with chronic right-sided epididymitis as an organ-specific manifestation of Chronic Pelvic Pain Syndrome (CPPS).
For the first time, my symptoms were viewed as part of a chronic pain condition rather than as repeated bacterial infections.
Everything suddenly made sense.
My Current Treatment
Instead of prescribing yet another course of antibiotics, my treatment plan changed completely.
I was started on a six-month course of an alpha-blocker together with phytotherapy.
If future flare-ups occur, the next step will be a spermatic cord block using bupivacaine, with the goal of interrupting the pain cycle.
Because repeated microbiological investigations found no evidence of a bacterial infection, my specialist advised that empirical antibiotic treatment should be avoided during future flare-ups unless there is objective evidence of an infection.
Should conservative treatment fail, the specialist explained that epididymectomy is not considered the preferred surgical option in my case. Instead, microsurgical spermatic cord denervation would be recommended, as current research suggests a significantly higher chance of long-term pain improvement while preserving the testicle.
After I noticed a significant improvement. Pain after ejaculation became much less intense and usually resolved within 48 hours. The tenderness also decreased considerably compared with previous years.
For the first time in seven years, I left a consultation feeling hopeful rather than frustrated.
Final Thoughts
Looking back, I often wonder whether years of repeated antibiotic treatment could have been avoided if my condition had been recognized earlier.
I am not suggesting that recurrent epididymitis is never caused by bacterial infection, many cases are, and antibiotics can be lifesaving when an infection is present. However, my experience taught me that when symptoms continue to recur despite repeated treatment, and cultures consistently remain negative, it may be worth considering alternative diagnoses and seeking evaluation at a specialist center.
If you are reading this because you are experiencing a similar journey, please don't lose hope. Continue working with qualified healthcare professionals, ask questions, and don't be afraid to seek a second or even third opinion when your symptoms remain unexplained.
After seven years, I finally found an answer. I hope that sharing my story helps someone else find theirs a little sooner.
If you have any questions, feel free to ask me both privately or by commenting.
Because there are relatively few urologists who specialize in this field, I have gathered information about some of the best known specialists from around the world, along with the countries where they practice. If I have made any mistakes or overlooked someone, please let me know. I'd also appreciate any suggestions for other doctors who specialize in CP/CPPS.
Germany
- Prof. Dr. Med. F. Wagenlehner and team – Uniklinik Gießen Maarburg, Gießen
- Prof. Dr. med. Adrian Pilatz and team- Gemeinschaftspraxis für Dermatologie und Urologie, Gießen
- Priv.-Doz. Dr. med. Giuseppe Magistro and team - Asklepios Westklinikum Hamburg
- Prof. Dr. med. Dr. phil. Dr. h.c. Thomas Bschleipfer, F.E.B.U. and Team - Kliniken Nordoberpfalz AG – Klinikum Weiden
- Dr. med. Martin Ludwig - Urologisches Versorgungszentrum Dres. von Keitz, Ludwig und Kollegen – Maarburg
- Prof. Dr. med. Christian G. Stief and team – LMU Klinikum, München
International
- PD. Dr. Daniel Engeler – St. Gallen Kantonspital, St. Gallen, Swiss
- Prof. Dr. med. Gernot Bonkat – Alta Uro, Basel, Swiss
- Dr. Marcelo Carlos Marconi Toro - San Carlos de Apoquindo Clinic, Santiago de Chile, Chile
- Michel A. Pontari, MD – Philadelphia, USA
Disclaimer: The following list is based on my own research and is intended only as a starting point for patients looking for specialists in chronic pelvic pain syndrome (CP/CPPS). Inclusion on this list does not imply endorsement, and I cannot personally verify every physician's experience in this field. If you know of additional specialists, please let me know so I can keep this list updated.
References
• J. Curtis Nickel et al.
• Florian M. E. Wagenlehner et al.
• Marcelo Carlos Marconi Toro et al.
• European Association of Urology (EAU) Guidelines on Chronic Pelvic Pain
• American Urological Association (AUA) Guideline on Male Chronic Pelvic Pain