Epididymitis - views/thoughts?

Is your pain constant or does it come and go? Mine is constant. I cannot sit, stand, walk, or do anything without it coming up and getting worse if I don't move. It does get a little better when I lie down, although I cannot sleep on my stomach. I can only rest on my back, which is a nightmare. Does your scrotum look all bent outta shape and warped with your balls facing different directions? Mine does/do.

I'm not optimistic about this getting better. I'm thinking I have to get used to the pain, but one thing I can't get used to is to forego sex or masturbation. Hell, you might as well ask me to give up tasting food, watching teevee, listening to music, etc.

I do think some of the problem is with my lower back - like some kind of neuromuscular problem. At least, when it comes to the right testicle. Both epididymes are inflameds, so there is epididymitis. Now, whether this was bacterial at the onset or not is a mystery to me. I think the antibiotics may have killed off the bacteria that caused it, but the inflammation is still there and it's more painful than ever.

Be thankful you can still sleep. I used to sleep an average of 8-10 hours a day. Now I'm lucky if I can get 3 hours of sleep. This will eventually drive me crazy and I might just opt to have the surgery, although I'm not optimistic about it as the f*****g doctors are. Actually, the urologist told me that it will take away most of the pain, but not all of the pain. That's the best outlook for a surgery purported to have 50, 60, 70% success rate.

In summary, here are the options I see now:

- Steroid injections to the epididymes.

- Electric therapy.

- Physical therapy.

- Further tests to rule out autoimmune diseases and other medical issues that may be tied to this.

- Homeopathy and accupuncture.

- Surgery.

- Get hooked on pain meds.

Hi JCA, My pain is constant some days worse than others but it's there constant.
I've not noticed the balls being out of shape but I can see either side they are slightly swollen,the more standing or walking I do they are worse and I cannot sit down for too long.
I am able to sleep as I take 50 mg of Amitriptyline which I have been taken for years for the prevention of migraines,I take these a hour before bedtime.
I will be asking my Dr tomorrow what are my options now as I just cannot cope ,I will mention the injections .
Are you able to still work? I am self employed but because it has become worse lately I cannot do much work at all.
Ain't it crazy there are loads of people suffering like us and they cannot cure us.
On a really bad day I feel quite sick with it as well.
I am NOT going to be fobbed off tomorrow 11th March when I see my Dr this time I want action ,let's see what his other options are that he said to me we can try.
I will update you ok.Catch you soon take care buddy.

I wish you lots of luck in finding relief from this nighmarish disease. Definitely try every possible option out there before choosing surgery. You've probably read this yourself, but surgery for epididymectomy is not successful for cases where the cause for the inflammation cannot be found. You yourself read the post above yours where some poor guy had his testicle REMOVED - WITH NO RELIEF TO HIS SYMPTOMS!

Currently, I am on limited/restricted work - not a lot of walking, not a lot of sitting, not a lot of driving - which pretty much leaves me doing nothing. This work restriction is temporary, though. It'll be over in one month and then I don't know what will happen. I can get by on doing desk work for a bit, but half of my work involves driving to other locations. I can see this becoming a point of contention with my colleagues and boss, although I have offered to drop my pants in front of them so they can see for themselves I'm pretty much maimed/destroyed by this f*****g disease.

One fear I have is that I'll develop some horrible abscess or this sh*t starts affecting my testicles (i.e., epididymorchitis). This fear sometimes paralyses me and it leaves me physically and mentally drained. The only recourse then is to seek consolation from family and friends. I can see this taking a toll on my relationships since everything revolves around me in pain.

Again, I wish you lots of luck.

Hahaha. Coincidentally, I am also going to see a general practitioner on the 12th (Wednesday). I want to rule out getting an abscess or having partial torsion. I know... it's crazy, but these thoughts plague my mind all the time. The other thing I want to request is a MRI of my testicles, pelvis, and lower back (all nerves and muscles that affect the testicles). Lastly, I'll discuss pain management with her.

One other thing you might also want to try is a chiropractor. Some guys get limited results from it. The next best thing would be physical therapy for the pelvic floor muscles and lower back. Sometimes, it turns out to be like sciatica (which I also had/have).

Hi JCA, I have seen my Doctor today told him I cannot stress how much this pain is getting me down.
He has now given me Gabapentin I have gotta try this for one month and go back and tell him how I've been feeling.
He did mention me having a operation and I told him I understand that is now always effective he agreed on that.
He said I might have to send you back to the urologist which I replied the last time I saw him he told me to take Paracetamol which does not work.
I have gotta go back in the morning for a blood test.
I wish you good luck...Please let me know how you get on Wednesday ..Cheers

Thanks, man. Be very careful with that gabapentin. Read about the adverse/side effects of that drug. I'd say if that stuff doesn't work in a week or two, I would contact the doc to see if you should continue taking it.

My doc messaged me with regards to the CT scan results I took recently and she wrote the right testicle is in an unusual high position (i.e., "riding high") in the scrotum. She said it's not acute, but I'm thinking I also have a retractile testicle on top of all this sh*t. This is something I kept telling all the f*****g doctors and they've all ignored me. I have a lot more pain and discomfort from that than from my swollen epididymes - and it is most definitely NOT the effect of epididymitis. So these bastards misdiagnosed me and were ready to chop me up not knowing what is really wrong.

Now, the problem with a high-riding testicle is that the only way to fix that is through surgery. I'm not sure how successful that surgery is either, esp. since I am not an extreme case where this is usually done. However, if this is a retractile testicle, it fits a lot of the symptoms I've been having - sharp pelvic, lower abdominal, and back pain with a sensation of "tightness" or burning soreness in those regions. It's as if the spermatic chord is tangled up and causes the right testicle to hang high in the scrotum. Any kind of sudden movement innervates the f*****g testicle, as well as any kind of abdominal and lower back muscle movements.

This is the pain that's killing me right now.

I feel your pain bros. Was diagnosed with epididimytis in Oct 2013. Was initially given antibiotics but those didn't work. Later urologist gave DEC's which, might have worked. I haven't had a problem since then. All fine now and they, the balls, are feeling normal too.

As far as my understanding goes, this can be cause by two things, bad bacteria or a parasite. There could be other reasons. In my case, since DEC worked, it could be cause by a parasite.

I hope it doesn't come back again, for it is such a terrible pain to feel. 

I'm 26 btw. Feel free to ask me anything. 

JCA, Let me know how you get on please mate.I will keep you updated.take care buddy.

Temp name,did you get the stomach discomfort aswell? Were your nuts slightly Swollen both sides?
Please can you tell me the name of the tablets your urologist gave you? Cheers Mate.

I'm back from seeing another GP and she referred me to UCLA urology for a second opinion:

http://urology.ucla.edu/body.cfm?id=37

My right testicle hangs/rides high in the scrotum and whatever is causing that is also causing the most pain along the right side of the inner thigh, pelvis, groin, abdomen, and lower back. The previous doctors cannot tell what it is and the two urologists I've seen didn't care to know about it. This time around, there could be the possibility of exploratory surgery if the urologists from UCLA cannot tell what it is.

Now, if they suggest surgery, including bilateral epididymectomy, then it leaves me with very little options. These guys should be at the top of their field and have seen more unusual cases than the average urologist.

Currently, the pain can calm down for some hours, but then comes back stronger every day. Sometimes, I think it's gone only to get it worse a few hours later. I'm getting by on 3 or 4 hours of sleep and no pain medication I've tried can take the pain away.

JCA , Let me know how you get on when you see the Urlogist.
I've started the Gabapentin today.keep in touch mate and good luck.

TempName here.

I don't think there was any discomfort in the stomach. I would say it was exclusively nuts. This was the first time I had any such pain. It happened in 3 days, first day was very mild but I knew something wrong was happening there, 2nd day was somewhat serious and third day it just was unbearable. No relief position at all. Couldn't stand, sit or sleep.

I don't know how you guys are writing here with such pain.

Swelling/redness was there but very light. Pain was in both but ultrascan said epididymitis only in the left nut.

Names of tablets might be of little help to you since I am not from the US. Here are my prescriptions in detail:

Doxycycline: 2 a day for 5 days
Hetrazan: 2 a day for 20 days
Ketorol: 2 a day for 5 days
Rantax: 2 aday for 5 days

None of these are antibiotics. Before this I was given a 5 day antibiotic (dont remember its name) along with a pain killer but it only worked for 4-5 days or so after which pain returned.

Temp name ,I am in the UK and I have been given doxycycline in the past it is a antibiotic,I was also given about 8 other various antibiotics but the pain always came back.
I have just been give Gabapentin to try for a month I will let you guys know how it goes.
I understand if you are given antibiotics straight away they will work but I was not so my condition is now chronic hopefully I will have some relief from the new tablets I'm taking (Gabapentin )
Please keep me updated guys.Good luck I know how you feel no one can guess the pain we are in.
Cheers Lads.

Yeah, doxycycline is the antibiotic. DEC is a medication given for worms and parasites that aren't viruses and bacteria. The rest are pain meds you listed.

I've taken doxycycline (2 a day for 10 days), cipro for 2 weeks, then doxycycline and amoxicillin for 2 more weeks. If there was a bacterial infection, it sure as hell should be gone by now. However, I am still experiencing worse pain than when I first noticed I had something. It's come to a point where I don't even think I have epididymitis, but some kind of tissue damage.

I first noticed pain on my left testicle when someone accidentally sat on my lap and pushed down on the left side of my scrotum. The left side of my scrotum looks as if it was pulled down! The testicle no longer sits vertical inside the scrotum, but hangs lower and almost horizontal! The right testicle was pushed up by a strong cremaster reflex and me trying to suppress laughing, which made it get stuck in the upper part of the scrotum. The right testicle now sits upwards and bulges out. When I get a cremaster reflex, it sometimes moves right beneath the penis shaft and in front and above the left testicle!

This sh*t does not look like epididymitis! Not only does it look deformed, but it's a source of a lot of pain that shoots up to the inguinal canal region and sometimes to the lower abdomen and back, as well as the inner thighs. This is why I want a second opinion from the doctors at UCLA Medical. I want them to tell me with surety this is ONLY the effect of epididymitis and nothing else because, as far as I can tell, even though the back of my testicles feel tender and painful, there is something else going on, which causes even more pain than an inflammation of the epididymes.

So far, I've been trying to get an appointment with UCLA Urology for the past two days without success. They tell me they will call me back, but then they just forget about me. It's absolutely depressing to see some f*****g receptionist treat me like a dog when I try to explain to her just how much pain I am experiencing and for how long. This kind of pain has sent me to the ER three times already in the span of a month. I've already missed about three weeks of work because of this and even when I show up all I can do is sit and stand there - and do nothing.

Today will be another uphill struggle just to get an appoinment with a doctor.

I'm sorry yeah Doxy is a antibiotic. But I think what did the trick for me was Hetrazan which is a DEC and treats parasites.

Its been 4 months now since I'm out of this fcking thing. I can touch/play with them without any inconvenience. 

I Hope you guys will find a solution soon...