Epididymitis - views/thoughts?

Hi JCA, I totally agree with you the cysts do cause pain.
Good luck mate please keep me informed.Welshguy

Hi Welshguy.
It was not JCA that made the last post but a guy that is going to go by the name of "DJAA"
I have already had the left side removed and I am just on the verge of going to the emergency room because of the pain on the right side. Last time I went to the emergency room they injected morphine and did an ultrasound that confirmed epididymitis an a cyst.
I opted to have a nerve block administered a couple of weeks later and the pain is worse now. I see my urologist on Thursday and I need to go under the knife, I can not continue to endure this any longer.
DJAA

I definitely agree with the statement, "Never tell your urosurgeron they're wrong" or disagree with them in a strong manner. So far, all of them have not welcomed any kind of input I have on this matter and stubbornly continue on their own paths.

1st urologist: left epididymitis; ignore the right side. Take lots of antibiotics and come back in 6 months.

2nd urologist: bilateral epididymitis... chronic and in need of epididymectomy; no known cause or explanation for my physical symptoms.

3rd urologist (UC Irvine Medical Urology): chronic pelvic pain syndrome/CPPS/prostatitis... nerve blocks on both sides. There might be intermittent torsion on the right side and no clue what happened to the left.

4th urologist (UCLA Clark Urology): groin pain on the left side from possibly a small hernia or some kind mass or injury; the right side has a strong cremasteric reflex, but is otherwise normal ("normal" to him, of course). Order another ultrasound, but this time include the groin area for the left side and maybe the right side.

I'm liable to go with the 4th urologist since he seems the most cautious and thorough.

I am going to try acupuncture next. She said if you do not have some type of relief in three trips it will not work and the treatments need to be every second or third day. I have also gone back to my urologist and he wanted me to get a second opinion before requesting surgery. I had the second opinion and the 5th urologist said to have the surgery if all the other treatments have failed.
My first and so far the best urologist I have been to has said he will try to just remove the epididymis and leave the cord and the testicle so the problem with testosterone will not occur but if he goes in and it is not possible he said he would have to take all of it and he said that some of his patients that had lost both testicles opt to have an injection of a slow release pellet that releases testosterone and you need it done about three times a year. He is leaving on vacation for a week and we have scheduled the surgery for the 3rd of May in case the acupuncture does not work. I told him this is no life being in pain all the time and I want it done right or wrong and it is my choice. I will let you know how the acupuncture works out. According to some of the literature I have read it seems that with chronic pain it has resolved it to a low level in 8% of the cases. Maybe I will be lucky.
Just got off of a 50 day course of Cipro with no help. I am not taking a probiotic with 14 strains to try and get my intestines back in balance. I had a specimen taken and checked for any fungal or viral infection and that was negative also. Enough is enough it took about three weeks for the left side to be pain free after the first surgery.
Good luck JCA with followups and I will let you know if acupuncture has any effect.
What I like about my urologist is he will bring in the ultrasound machine and do it right then and show you the results on the screen and explain things. He takes the extra time so I know that an appointment time is only an approximation but that is ok because he does not hurry you right out the door and I understand other patients might need some extra time also.
Good luck to all of us. Maybe one of us will find the right path to take.
DJAA

Oh no, if there is one thing to advice any new people is to not take antibiotics if there are no signs of a bacterial infection. This will destroy your intestinal flora and you'll have to take probiotics for a while.

One thing I was wondering: When the urosurgeon removes the testicle(s), does he or she replace it/them with a prosthetic(s)? I just couldn't imagine it. Again, it'd be psychologically disturbing to me to have to see and feel nothing there. I was talking with a surgeon friend who said getting epididymectomy is f***ing useless, you might as well remove the whole thing and go on testosterone therapy, which is essentially what you're doing, DJAA.

I don't think my friend fully understands the kind of life-changing impact this kind of thing is for any guy to have to experience. As some of you have read (if you've been keeping up all this time), I'm still seeking out answers to the problems I am facing. In the meantime, the existence I am leading is that of a dead person. I just turned 34 and I am essentially not living anymore - I can't run, bend, squat, jump, walk, stand, sit, or even lie down without this annoying discomfort constantly shadowing my every move. The discomfort stemming from one testicle retracting to the superficial groin ring and the other from the left testicle hanging lower.

It's crazy to see some doctors react nonchalantly about it all. It doesn't dawn on them that 4 months ago, I was wearing normal underwear and going about my business without having to walk slowly and carefully, so as not to cause my testicles to violently yank up and down. I have never seen a testicle hang sideways, but, apparently, some doctors don't see that as a big deal hahah.

I'm also looking into accupuncture as a less extreme form of treatment. I don't think I could go through with the nerve block, even if it worked, because of what that might entail. I'd just be trading one kind of discomfort for another; all the while the actual problem was never addressed. With accupuncture and maybe some physical therapy, I hope to perhaps loosen up a tense muscle or nerve in the groin or lower abdomen area above the right testicle. The left testicle has to be looked at surgically. I just can't see how that would heal on its own and go back to its normal position... unless there is a urosurgeon who can assure me what exactly happened and how it would heal.

All in all, I hope we all find some kind of resolution to our problems.

You have the choice to have a prosthetic put in or not it is completely up to the individual. When I have the surgery he will take a good look and decide if the whole thing needs to come out. On the left side he did the complete removal because he said the testicle itself had what he said were "findings" and the right side so far he said the testicle feels normal and the pain is pretty much concentrated at the head of the epididymis, they have found a cyst measuring about 3/8 of an inch almost circular, but of course all things can change when it is opened up. If the testicle stays then I will not need testosterone therapy which is one reason he wants to get a good look before cutting it all out. Of course I can not communicate with him at that time and all decisions must be made before the surgery. I am scheduling it for the week after next. If there is even a chance it is going to cause a problem then I want it all removed and with a small pellet inserted in the rump 3 times a year it is better than what is going on now.
The nerve block is just a shot and it really was not too bad but for me it did not help. You might consider it especially if they can not find any real cause and see what happens. It really was not very painful to get it. One reason I went with the nerve block shot was when I took a Xanax I would get some relief for several hours so I figured it was nerves but the fact that there is a cyst means it will probably never resolve without surgical intervention
In the last year I have lost 5 close friends all of us were within a year of each other in age and 2 were agent orange victims. I was in Vietnam in 1969 and I figure 5 or 6 more years is probably what I have left and do not want it to be like this.
I know what you mean about not being able to do things and you are right that for all practical purposes life is over. My friend that I was three days older than died a few months ago and he had cancer. It was found shortly before he sold his business but he had bought a yacht, a Rolls Royce and some other toys and then he is diagnosed with cancer and dies a year later. It was the hardest thing I ever did was to tell his wife to let them put him on Hospice and let him go. I just talked to her two days ago and she thanked me for convincing her is was for the best.
I hope you are able to resolve your issues before long but for me I am going under the knife as I do not want to keep getting bounced around by the doctors without any resolution.
Good Luck to you.

Welsh guy here,Hi Guys, I am still suffering with this , I am also getting some slight pain /discomfort in the anus area I was wondering if anyone else has had this.

last week I saw my DR and he said all we can do now is try and manage the pain, he gave me Pregabalin which is helping a little but I can still feel the pain.

its over 2 years I have been suffering with this nightmare.

WelshGuy,

Your next option with regards to pain management is to try the steroid injection and the nerve block. The steroid injection is done right on the epididymis or the spermatic cord, I'm not sure. Ask your GP. Both are supposed to ease the pain and have limited results. If the nerve block works, then you could opt to have denervation surgery, which is a very rare type of surgery and there aren't any studies done on it. Denervation basically means you will have a numb sensation in the area at best. At worst, you will be numb AND still have pain. Again, ask your GP or urologist about it.

Your last resort would be epididymectomy or orchiectomy. That's some pretty extreme sh!t, but if the pain is too much, then you might have to byte the bullet and do it, unfortunately. As I said before, my surgeon friend said you might as well go full-monty and take the whole thing out, and go on testosterone replacement.

As far as your recent pain in the anus region, it could be something else related to epididymitis or not. Things the doctor might ask is for how long have you noticed it, do you have a history of haemorrhoids/piles, your diet, are there particular things which trigger the pain, how you would describe the pain, and the specific area which hurts the most. It could be your prostate, it could be haemorrhoids, it could be constipation. One guess, if these two pains are related is prostatitis. People who have prostatitis have a pain the anus region and might also experience epididymal pain. However, they have all kinds of other symptoms - frequent and painful urination, difficulty urinating, pain with ejaculation, pelvic and abdominal pain, lower back pain, penile pain, etc., etc., etc. You should definitely see a GP if it doesn't go away on its own after a few days or if the pain worsens.

Personally, I'm not experiencing a high level of pain anymore or I've built some tolerance to it (I do have a high threshold for pain). Mine is more akin to discomfort and slight ache here and there on both sides of the scrotum, but I can deal with it 99% of the time. However, my right testicle still retracts and hangs tightly near the superficial ring while the left hangs lower and behind the right testicle. If there was an epididymal infection, it sure as hell is gone by now, but I have something very, very different to deal with now...

Lotsa luck to everyone.

Epididymitis and prostititas go hand in hand from what I have been informed so if you have one there is a good chance you will get the other. I am going to try UCSD as a last resort and have contacted them and they have assigned a "navigator" to help me get to the right people. My medical records are being sent and I am hand carrying the ultrasounds over tomorrow. I will keep you informed as to progress there. Good luck to all
DJAA

Thanks for reply, my psa test was ok would it haved showed up if I've gor prostatis ? Thanks Welsh guy.

WelshGuy, prostatitis might show up on your PSA results and is a confounder when looking for prostate cancer. As I said, if you had prostatitis, you'd have other pain symptoms. Now, if this is something that you've had concurrently for the past two years, then there could be a higher chance that it's prostatitis. Of course, you'd have to get it checked by your GP to confirm this. The treatment regiment is similar, but prostatitis is probably the worst of the two to have. I mean, the lesser of these evils would be to have a testicle removed, as opposed to removing your prostate, which will f**k things up really bad.

DJAA, lemme know how the specialists at UC San Diego pan out. I can tell you I don't have much confidence with the guys from UC Irvine here in Orange County. I don't know if it's because of my age, my medical insurance, or they just can't do anything for me. UCLA in Santa Monica seems a little better, but not by much (the front office and nursing staff are very, very incompetent, as if they barely have a fourth grade education). Again, I don't know if it's my age, my insurance, or my symptoms, which places me at the back of the line with a specialist who isn't my first, second, third, fourth, or even last choice. I guess I have no choice...

I'm going to have to enroll in a PPO insurance and pay more money to have more access to doctors I want see and be offered more options. This also means I may have to get rid of my things (i.e., watch collection, books, and other stuff I collected over the years), raid my retirement and savings funds, forget my old lifestyle and plans for the future (since I have none), and move back home with my parents once I start running out of money. Funny how none of those things matter anymore.

I thought I'd make for a kind of "case study" of something odd and bizarre, but they're not interested in anything other than cancer, stones, incontinence, impotence, and infertility. I WISH I had one of those hahah. I do plan to keep this going until my insurance drops me, so I already have plans to check with UCSD and Cedars-Sinai (Premal Desai and the group of urologists he works with).

I will let you know what happens with UCSD. I have Blue Shield of Cal PPO as insurance which oddly enough was the first question they asked. "what insurance do you have". My records should have been sent there by now as I had to sign a release form for them to go over and I will follow up with my navigator near the end of the week if I do not hear from them before then.
Have you ever had a semen sample analyzed? I have not had that done with any of the doctors that I have seen so I requested it just on a hunch that there could be something that does not show up in the urine or blood. One of the doctors at Sharp said he would put the order in if I wanted to do it and I told him to put the order in and I want it checked for any abnormalities. Will try anything and unless you bring it up they do not seem to have any suggestions. I have put the second surgery off for now and just upped the pain meds until I get the analyses and get into UCSD (if possible) and see what they have to say.
DJAA

I bet you're a vegetarian and/or that you don't eat fish. Try taking a daily supply of B Vitamins for the nerves ;-)

Well 12 weeks in for me now and still struggling. Finally got to see a urologist today. Bit dissapointing. Was only in there five minutes and basically was told they are sticking with the original diagnosis of epididymitis and they dont need to do any tests (had one ultrasound so far) and that I just have to give it time! I got no medication and no clue how long this will last. Just gotta sit it out on my own I guess

DJAA, yeah, that's the first thing they ask whenever I try to make an appointment: The type of insurance I have. From there, I once I tell them I have Cigna HMO, it dictates the type of medical treatment or lack of I will receive.

For the other Guest, I wouldn't sit there and wait for anything. Twelve freakin' weeks with that s**t and they have no definitive answer for ya?! See another doctor and request to see another urologist. Make sure they all start from scratch without having to resort on the notes from the prior quacks you saw.