Epididymitis - views/thoughts?

Hi all, glad I found this site. Will write my experience with this condition. Appreciate if you could read and maybe share any pointers?

Been suffering with Epididymitis for about 16 months now. My pain (or ache I should say) was a very gradual onset. At first I could not tell if it was radiating in my pelvis or in my testicles. Obviously, as days went on, I could tell my testicles were aching bad. A week on I awoke at a partners house and was in a great deal of pain. It felt like a mega tootache in both testicles. With this I went to the hospital. After being examined I was told I had Epidiymitis and was given a round of anti-biotics for a week. To no avail. Also checked for Chlamydia and Gonorrhea - negative. Another doctors visit and I was told to take another week on the anti-biotics to make sure.. Nothing. Another doctor, prescribed a different anti-biotic with anti-inflammatories (Naproxen) over a 4 week period.. Nothing! Although the Naproxen does ease the pain it only lasts a few hours.

So im back at the doctors again and I've been told I have a choice to take MORE anti-biotics (which clearly aren't working) or see a urologist. I chose the Urologist and upon seeing him gave me an examination, had a little chat and told me that Epididymitis can take up to 9 months to go away, he said It will go away and that he will no longer need to see me again. He gave me an alpha blocker called Tamsulosin and advised me to take whenever the pain arose, this baffled the pharmacist at the time. Anyway, I took this all on board and went on my way. Over 9 months had passed and nothing. Took the Tamsulosin a few times and it felt like it was relaxing the whole area and in my opinion they do work to ease pain but unfortunaly do not cure it. I've had a blood test which shows that my kidneys aren't functioning as they should be (most likely due to the amount of Naproxen I was taking) but nothing else to report from my bloods.

I had my few weeks, maybe a month where the pain had subsided a lot (it does this) but it WILL always come back in full force. Back to the doctors again and this time I'm given another alpha blocker (forgot the name) these just felt like a relaxant and didn't solve the problem. Back AGAIN and this time given 'Amitriptyline' which used to be used in higher doses as a anti-depressant but is now used in smaller doses to deal with chronic pain. This blocks 95% of the pain and will begin to wear off early evening.

Obviously, like you all, this pain is horrible. It has made me borderline depressed and I just can't think positively into my future. I'm booked in to see my doctor next Friday. I've noted down a few things online which have caught my attention and will chat with him about it. What I have noticed is that when the pain begins to come back bad I always get shooting pain in my pelvis/backside area.. Possible prostasitis linked? Also, does anybody also experience intense burning sensation down there?

Regards, CAN

What made the doctors think it you have epididymitis? Ask them for their reasoning. Otherwise, it's just a guess. Now I realise that antibiotics are the wrong way to go if you don't come up positive for a bacterial infection. I think "epididymitis" was/is a bullsh!t diagnosis if they cannot come up with the cause or verifiable proof. Otherwise, you could have an epididymectomy or orchiectomy and be done with it. That is, IF that's the correct diagnosis.

You should have your prostate checked. Maybe you're starting to get BPH or something. At worst, it could be prostatitis or an inflammation of the prostate, which can also be phrased as "chronic pelvic pain syndrome." Make sure you're prepared to ask your doc for your treatment options.

Thanks for the reply, will definitely enquire about my prostate. From the first visit (which was the hospital) after a quick description of the pain I was told I had epididymitis and it's just gone from there. Forgot to mention I did have an ultrasound last year which did show slight swelling in epididymis. The examination from the Urologist described my epididymis as being 'a bit gritty'.

Ah, that makes more sense. I think another word for that is "indurated." Rather than a soft structure, your epididymis feels a bit hardened.

I have that on my left testicle and its what made me believe I have epididymitis. There was pain coming from that area, as well, which confirmed it for everyone. However, the pain has largely subsided into a minor discomfort and ache near the upper portion of the scrotum at the superficial inguinal ring. I no longer have that intense pain. As a matter of fact, I don't have any pain at all right now... except for... It's weird to ask, but do your testicles hang normally or have they changed positioning within the scrotum (i.e., do they hang lower or higher, bulge up or down?).

I ask this because my left testicle hangs really low and it's forced me to wear a jock strap rather than normal underwear. It's also forced me to sleep on my back, as moving to either side causes the testicle/scrotum to "drag" and start aching. My right testicle retracts and rides up in my scrotum all day even when I sleep. My scrotum looks like one ball hanging really low and the other is barely visible because it's stuck so high up (it's not quite inside the inguinal canal) and hangs horizontally/sideways. The cremaster reflex is really strong that I can't adjust the right testicle down anymore. I have to use the heat from a blow dryer, a heating pad at the maximum level, or scalding hot water to bring the testicle down.

I still have that indurated epididymis on my left testicle, too, which makes me wonder if the pain will come back. I've had this since January 20th of this year, so it's been almost 4 months. If it turns out the pain will come back, then it seems I will have to resort to an orchiectomy of the left testicle.

Have you tried a never block or a steroid injection as a means of controlling your pain?

My testicles have never changed shape or length. They have stayed the same. But I have always had low hanging testicles and the left has always hung lower than the right (it's very common to have one hang lower than the other) in feeling a lot of ache in my upper pelvis area recently which makes me wonder. I have not tried a cord block or any other injection of that nature. But it will be on my "to-do" list if this problem continues to become unresolved.

Yeah, you have to get your pelvic and prostate pain or ache/discomfort questions outta the way before the epididymal pain is addressed. If it turns out this is epididymitis, then, as you've read in prior posts, you could try a few more things before you take the big leap into surgery:

- steroid injection

- nerve block

- accupuncture

- physical therapy and deep tissue massage

- electrical stimulation therapy

Things to consider about your pain: It could be neuromuscular, spinal, prostate, or epididymes. Your doctors can make good guesses, but this doesn't mean you should take everything they say as uncontestable truths. If something doesn't work, it doesn't work. If you're getting negative results, there's no point in going on with the treatment. You should also be very involved in your own health by bringing up suggestions. If the doctor appears to blow it off or ignore you, then you have to tell him or her on the spot. After all, nothing they've done up to this point has worked.

Your last resort is what we've been writing about these past few months: surgery. With this, it all depends on how much you want to get rid of the pain and continue living. That's pretty much the bottom line. It's very unfortunate, but I do hope you get better.

epididymectomu? anyone? someone?

Anyone? Is it possible that no one has worked epididymectomy? I suffer for 5 years, I've tried everything, next is operation! My urologist in have never heard of this operation! Please if anyone has experience or knows a doctor who works well in this informs us, will make good work. Leave a sperm in a sperm bank. does not remove the testicle only epidimitis, not need testosterone therapy! pleaseeeee

I would find another urologist if he has never heard of an epididymectomy. I had both the epididymis and left testicle removed and the pain only moved to the right side and now in the pelvic region. They did the retention test and I drank 1500 ml of water and then when I could not hold it any longer I had to piss in the machine and then they measured the retained urine and it is 217 ml. The next step was the scope up the penis into the bladder and they had a tough time getting it into the bladder because of an enlarged prostate. The pain was horrible and I think I bent the bed rail during the insertion process. I was passing blood for three days and now take oxycodone ever 5 hours. They have not found any bacteria in the urine and before the scope I had given them some sperm for them to analyze for bacteria and have not heard back yet and it has been 7 days. I am scheduled for a TURP on the 10th of June and will go from there. One thing I noticed is my ejaculate is just a few drops now and perhaps it is the enlarged prostate causing this. I will let you know what happens after the surgery. I have heard it is quite miserable for a couple of weeks afterwords.
DJAA

When did it all start? I am lifting heavy things. My epidimis are swollen and painful, so I was hoping that would help remove. How did you choose the doctor who did this to you?

how old are you

Holy sh!t! They did a cystoscopy on you, DJAA?! I'd have them put me under general anesthesia, if that's the case, although it's kinda late for you now. Once you get to the prostate, those problems just don't cease - cancer, urine retention, sexual dysfunction, pelvic pain syndrome, and a whole other number of problems.

- Did the procedure of the camera insertion into the urethra (the cystoscopy) caused you to have more pain?
- Did the urologist say why they were doing that procedure?

I am asking because that procedure freaks the hell outta me. I really hope all goes well for you.

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Agreed that a urologist who has never heard of an epididymectomy is not a specialist you should be seeing for anything. When you choose a specialist, make sure you read up on them and don't be afraid to ask about their experience in doing these types of procedures. Ask, "How many procedures have you done? What are the post op complications? What are the risks? If something goes wrong, how can I get immediate assistance?" These aren't common surgeries, so you have to make sure you know the risks and be well-informed. If your specialist cannot explain to your satisfaction and you're able to understand, then you should get a second and third opinion.

In my case, the first specialists suggested a bilateral epididymectomy and they assured me of their proficiency. However, they could not explain or answer certain questions to my satisfaction. I went to see two other specialists who disagreed. So, even though the problem was not resolved, at least I didn't go in for some unnecessary, high-risk surgery.

Good luck to everyone,


JCA

There is one other radical treatment alternative called "sacral nerve stimulation." It's a device implanted into the spine which sends electrical stimulation whenever you experience testicular pain. It's a rare treatment, but has been written about before:

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Hi JCA, this is DJAA. I ended up with a TURP procedure 10 days ago and I am in the painful recovery mode now.
They told me I would not like life for a couple of weeks and that is true. The reason that I did the TURP was because urine retention was 217 ml out of 1000 consumed so I was on the bottom of the scale and they said that with that much retained urine infection and addition pain in that area were almost a given. I will have to wait a couple more weeks and see if the pain in the remaining right testicle goes down a lot. It has subsided some but I do know if that is because everything is sore in the area. The surgeon that did the procedure is on the urology robotics team for Sharps hospital in San Diego. I am 65 and prostate issues are very common at this age, I just hope and pray the pain in the testicle goes away. I was told that the pain could be caused by an infection in the prostate and I needed to do something to drain the bladder is I wanted any hope of relieving the testicle pain. What a vicious circle this has all become. Let me know how you are doing and if you have any luck with a resolution to your problem.
Good Luck
DJAA

I selected a surgeon that was on the urology robotics team at Sharps hospital in San Diego and had good reviews.
I did not care about his bedside manner just how his outcomes had been.