Another Man's Story

How to start? I'm a physician, aged 62, and a non-urologist. I'm writing this in hopes of helping other guys with EDO, from which I suffered for 12 years.

It all began back in 1992, with right sided groin and testicular pain that I assumed was prostatitis. Being a doctor, I prescribed myself doxycycline, and this eliminated all my symptoms in a few days. Aware that prostatitis could be resistant to therapy, I continued this therapy for 3 weeks, then stopped. Within a week or so, my symptoms began to return with a vengeance, and restarting the doxycycline did exactly nothing. The aching was mainly right-sided, and worse than before, though tolerable. I got referred to a very reputable urologist who pronounced my exam normal, and ordered an intervenous pyelogram and cystoscopy, both likewise normal. He then put me on a series of antibiotics, none of which worked, and stopped returning my calls when it became apparent he couldn't help...his office was impregnable; they even had their nurses trained to answer the phone "RN", so you couldn't establish a personal connection with anyone. How this guy got his reputation I'll never know.

The problem then smoldered for the next two years, at times getting bad enough so that I walked with a slight limp. I consulted an infectious disease specialist and received a multi-thousand dollar workup, which was negative. My internist then ordered an MRI of the pelvis, which showed a shadow in the right side of the prostate...the radiologist, who was a friend, suggested I see Fred Lee, MD, an interventional radiologist who might be able to help. I made the appointment, and was seen by Dr Lee and Duke Bahn, his associate. Dr Bahn performed a transrectal ultrasound (TRUS) of the prostate which he felt was normal. He told me I likely had prostatitis, and discussed the relatively radical therapy of direct antibiotic injections into the prostate and seminal vesicles. He requested that I first get a culture of my ejaculate. I did this, and the culture did grow a pathogenic bacterium known as Entercoccus. I requested the injections, and Dr Bahn agreed. He did a three session series of antibiotic injections consisting of Tobramycin injected into both seminal vesicles and both sides of the prostate, done through the rectum under ultrasound guidance. The sessions were two weeks apart. I didn't find the injections all that painful, and though I was a little sore for a day or two after each session, my symptoms were significantly improved after several days. At the end of the series, I was much improved, though there were occasional bad days when the pain in my right groin moved up into my back a bit.

I was able to function at this point, and able to ignore the problem most of the time. I got PSA's every year, and followed up annually with my internist. There were long intervals when I forgot about the problem altogether. This went on until about two years ago, when my symptoms came back out of the blue, worse than ever. I found I had to sleep in a recliner, since I couldn't get up from a normal bed without severe stabbing pain while moving my right leg.

I repeated the culture, which grew the same organism as was seen ten years ago. Remembering that a physician who treats himself has a fool for a patient, I went to a local urologist and was put on Cipro, which to my surprise helped a lot. I stayed on this antibiotic for 6 weeks and was asymptomatic, so on his advice I stopped the drug. A little over a week later my symptoms came back. I realized my mistake and restarted the Cipro immediately, but it took several days to kick in, and I was back in the Lazy Boy for over a week. I'm pretty stoic, but this was pain that would literally take my breath away if I moved wrong while getting up, or even when walking at times...I limped a bit, couldn't help it. I got back to

symptom-free on the Cipro, and stayed on it for several months. During this time, I went to the Prostatitis Foundation website and other sources, and began to suspect I had a blocked ejaculatory duct with associated seminal vesiculitis, an infection of the seminal vesicle. I based this on the fact that most times my ejaculation was painful, and the ejaculate was getting pretty scanty...at times there really wasn't any. I shared this suspicion with my urologist, and he performed a TRUS, but didn't see any stones he considered significant, not any abnormalities of the ducts. He doubted that I had a blocked duct, since the x-ray findings associated with this in the literature include enlargement of the duct and vesicle, which I didn't have, according to his study. Finally, he assured me that blocked ejaculatory ducts were a very rare problem.

I slogged along on the Cipro for a few more months, but eventually became concerned about such a prolonged course of therapy (about 6 months) that I stopped the Cipro again. About ten days later my pain started to come back, so back on the Cipro I went. Too late again, back came the pain, and I was again in the Lazy Boy nights, feeling like an idiot for stopping the drug. After almost two weeks, the pain improved, but didn't go away entirely. It seemed to me that I indeed had an infection that was becoming resistant to therapy, and I was more or less on my own to manage it. I did some research into other antibiotics, and settled on Tequin, a more advanced member of the same drug family as Cipro. I switched to this, and within a few days became free of symptoms again. I was on this drug for many more months, too busy with my practice to spend much time on the problem, and afraid to stop the antibiotic again. In retrospect, I was out of ideas and in denial. Slowly I began becoming more symptomatic, even though still taking the Tequin. My wife, bless her, suggested I try and recontact Duke Bahn, who'd moved out of state. I found him in Ventura, California and gave him a call. He remembered me, and when he heard about my situation, offered to see me again. I gratefully booked a flight for the next week.

Dr Bahn did a color doppler transrectal ultrasound, and did find stones, one of which he thought were in the right ejaculatory duct. He also thought that the duct on the right was a little dilated when seen from certain angles, though the seminal vesicle was the same size as the left. Over the course of the next six weeks while I underwent the three session injection series, he became reasonably convinced I had a blocked ejaculatory duct on the right.

Looking for a solution, I again turned to the Prostatitis Foundation website, where I learned about a procedure known as TURED - transurethral resection of the ejaculatory duct. This operation was developed years ago by urologists specializing in male infertility, and was originally meant to open the duct to allow the passage of semen and restore fertility. Brad

Hennefent, MD had put this on the website as one possible therapy for EDO. Looking for more advice, I went to Northwestern University's department of Urology to see Dr Anthony Schaeffer, a prostatitis expert. He listened to my story, and ordered more studies, including sperm analysis and another culture, and an MRI of the pelvis, all of which were negative. In particular, the MRI showed no dilation of either ejaculatory ducts or seminal vesicles. In the face of all these negative studies, he was skeptical of my concerns about a blocked duct, but to his credit referred me to Robert Brannigan, their male infertility specialist.

Dr Brannigan listened carefully and sympathetically to my long story, and performed a TRUS, which again didn't appear to show any abnormalities, though there was some question of dilation of the right EJD. A colleague was called in for a look during this, and offered his opinion that the study was normal. Brannigan then performed an aspiration of the seminal vesicles, which involves injecting saline into the SV's to thin the secretions before aspirating. This study showed the first inkling of an abnormality-- the right SV remained distended after injection of a large amount of saline, when it would normally have been expected to deflate through the duct. What little fluid was obtained was sent off for culture, which later turned out to be negative.

Brannigan was skeptical that TURED would be of any help to me, but was interested when I told him that every urologist who'd examined me had noted an enlargement of the epidydimus (a sac connected to the top of the testicle which stores testicular fluid) that they'd dismissed as a spermatocele, a nondescript cyst of no significance. He carefully examined the area, and found that the entire epidydimus was cystically enlarged, and that no spermatocele was present. He explained to me that this structure is flimsy and subject to dilation and "blowout" in some cases of blocked EJD, which might prevent the duct and SV from dilating.

A TURED was scheduled and performed the following week. Dr Brannigan showed me photos taken during surgery which showed that the verumontanum (the site where the ejaculatory ducts open into the urethra) was grossly scarred and inflamed-looking, and described how the dye they'd injected into the SV's failed to come out as the barest of trickles on the left, with only a trace of dye being seen on the right. Only after confirming the blockage in this way did they incise the area to open the ducts. When the right duct was opened, there was a blast of darkish fluid into the urethra.

Since the procedure, I'm very, very much improved, with only very occasional discomfort localized to the right groin. I was in some pain for a few weeks afterward, but that has slowly faded, and I'm feeling better and better as time goes on--I'm about six months out now. I stopped the Tequin a few months ago, and nothing happened. I'm about 90% convinced I'm cured. I've had some conversations with Dr Brannigan by email since, and shared with him my feeling that since the diagnostic measures for EDO are obviously flawed, maybe this condition isn't rare at all. He agreed, and has taken a special interest in the problem of EDO. He shared the outcome of my case with Dr Schaeffer, who was supportive of this effort. I'm grateful in ways that I was a clear-cut case of EDO without any "textbook" diagnostic findings..hopefully my case will open up people's thinking about this disease, and stimulate urologists to find better diagnostic criteria.

My thanks to Brad Hennenfent, MD for including my story on the EDO website. Hopefully on this new site we can shed some badly needed light on the problem of EDO and get help to men suffering from EDO without answers or support. As I related to Brad in an email, I was nearing complete despair after years of suffering with no end in sight, and felt at times that I had no one to turn to. Though I didn't seriously think of suicide, I personally believe that men trapped with the pain and isolation of EDO/seminal vesiculitis have killed themselves. We must spread the word and get more academic urologists interested in studying this devastating problem.