Epididymitis - views/thoughts?

Hi Pilipinas We all know how you feel, my ultrasound didn't show any signs of a hernia, I've been sitting at home for three weeks now, I'm not sure if what I feel is from surgery or if it's the same as before. I find that the more I look at forums the more anxious I get. I I did 4 courses of antibiotics so I'm pretty sure it's not Epididimytis I have but its really starting to tick me off now!! I haven't yet seen a urologist but I can't wait untill I do! Untill then this is the only page I'm going to look at to give and take advice! Make sure you write notes in the pain and what triggers it ect.. Dr's just rush you through and don't listen make sure you sit there and tell them everything. Mine are; I've noticed that when I'm led down the pain is pretty much non existent as soon as I'm up and about for half hour or so it's starts off and gets worse throughout the day. I've noticed that it starts from the top of the vas near groin and goes down towards scrotum where it's at its worse. I'm guessing it's a varicocele but the GPs I see disagree. Even though I'm always waiting 40-60 mins in a warm waiting room before I actually get to see them which then gives it enough time to calm down a bit.

Hey guys Just reporting as I've been reading this thread, I'm also in the same boat as been diagnosed with epiydimitus For me the treticle ache started back September last year when I started taking wellman conception vitimin tablets, after about a week or taking them I started getting a ache and sharp pains in my testicle, so I stopped taking them Discomfort appeared every now and then and I went back on the vitamin tablets again, same result again aching testicle again Yet this time I came down with the flu at Christmas and this is the point where pain started daily up till today! At Christmas after my week of flu I had a urine infection, I was given 3 days antibiotic which seemed to clear the urine infection However I still continued pain which was also shooting up in my lower abdomin, the doctor sent me off to the GUM clinic where they gave me 2 weeks of dioxocyline, which seemed to work for the first week then the pain came back and my GUM results were all clear The doctor then sent me for urinary tract ultrasound all came back clear, then sent to the urologist who gave me 2 weeks cipro, after the 2 weeks I seemed to get getting better, then a week later the pain has come back again!!! Now my follow up urologist appointment is on a 3 month waiting list (nice one NHS) so today my GP issued me with another 2 weeks cipro! Really wish the ache in my right testicle and upper right leg would disapear! So depressing! I'm sure caffeine and masterbation doesn't help either, masterbation seems to prolong my ache apart from the slight instant releaf

I doubt it was the vitamin tablets. Something else caused this to happen. Epididymitis, if it's bacterial, will show a positive result in the urinalysis, which is why you're prescribed antibiotics. If you have negative results, then the doctors are just guessing at this point. On the ultrasound imaging study, sometimes, it may show a swelling of the epididymis or testicle (if it has affected the testicle).

I'm sorry to hear you're going through this. Any doctor will tell you, though, if the pain gets worse, then seek medical treatment immediately. I wouldn't put something like this off for three months if the pain level is high. In the meantime, do all the home remedy for it - warm baths, anti-inflammatory over-the-counter pills, scrotal support (e.g., jock straps), and bed rest.

Well my happiness with the surgical results is gone. I have never recovered from the "big squeeze" that the Dr. did after my surgery and it is miserable once again. I have been to three Urologist and am getting nowhere with any pain relief. The best meds are the higher powered ones like oxcy but he will not prescribe them anymore. I know if you are above dirt it is better than the alternative but sometimes I wonder when you can not do anything and the only time there is relief is when I am sleeping. No infection and ultrasound does not show any problem according to the Dr.
It has been close to a year and a half and was wondering if anyone out there has had it just "go away" after so much time. I have heard this can last for a very long time. Any input would be helpful as I am now just wanting to take the motorcycle out for one last ride.

Sorry JCA this came from DJAA

DJAA,

As you know, the problem with prescribed, high-strength pain medication is that you'll eventually build a tolerance and an addiction to them; you'll probably experience pain just from withdrawals alone. These are not meant to be taken indefinitely or even for prolonged periods of time. At best, oxycontin is the kind of pain medication given to terminally-ill people who only have a few months to live. Have you been referred for pain management by your primary care physician or the specialist/surgeon(s)?

Up to a point, the body has a way of adjusting or "lowering the volume" from messages received with regards to pain over time. About a year ago, I read this in a few urology articles about "chronic epididymitis." My surgeon friend also said the same thing - the severe pain will wear out over time. In my case, that's what happened. It took about a year for the pain to subside into an ache and discomfort.

In the meantime, I tried to keep some semblance of activity. I never bounced back 100%, but I'd say I'm about 70% of the way in terms of physical mobility and ability. I experience very little pain in terms of epididymal or testicular pain nowadays, only some discomfort from time to time; most of the pain is from my right pelvic joint - I think it's bursitis from sleeping on that side too much. The funny thing is, I attribute most of this recuperation to waiting things out rather than seeking an immediate solution. I've just had to take it easy this whole time; it's been very difficult since it pretty much halted my life at 34 years of age as I knew it. However, had I gone with the first guess from the first couple of urologists, I'd be castrated by now.

Personally, I'd recommend to keep searching. The worst thing one can do is become depressed because it lowers the body's own way of coping with pain and disease - the more depressed you are, the more likely you'll feel sicker and in more pain. You're also more liable to do something regrettable or stupid. It's time to reassess everything that has happened since the initial symptoms. Write it all down into a kind of journal, while keeping record of the tests, studies, exams, and procedures you've had done.

I take it this is what doctors refer to as "idiopathic" or of an "unknown cause," as you don't know what triggers the aches and pains along the epididymis. The technicians, doctors, and surgeons have already done a significant part of the investigation: scans, lab tests, cystoscopy, prostate surgery (i.e., "the big squeeze"), exploratory surgery of the scrotum, physical exams, etc. Questions you have to ask yourself are: Is your pain unilateral or bilateral? Does the pain refer up to the inguinal/groin/pelvic area or does it remain localised to the back of the testicle and/or spermatic cord? Are there activities you can do without experiencing a lot of pain and discomfort? Has the pain subsided from the worst to now? Besides surgical scarring, do you note any changes in appearance - edema, hydrocele, etc.?

Once you have organised your thoughts, see your primary care physician for a complete physical check-up to see what is good and see your surgeon to explain in detail your symptoms and what is happening. Your goal is to be in as tip-top shape as possible and medication-free. I think if you're looking to get prescription meds, they won't believe you and they won't offer suggestions and alternatives to help you. I used to work at a clinic and recall seeing patients who were in chronic pain who'd end up wasted and/or wholly ignored. Instead of asking for a refill, I'd ask about the possibility of this being an autoimmune thing. Could this be caused by antisperm antibodies? Read up on it and see if it's worth a shot.

If you go back to the pain clinic, inquire about physical therapy, chiropractor, massage therapy, and maybe acupuncture. On the outside, you may also want to start trying holistic medicine. I'd steer clear of the motorbike, but can you ride a bicycle - like a recumbent or one of those standing/elliptical style bicycles? I think they're novel enough to garner interest in keeping a bit active.

Lastly, don't isolate yourself. Try to go places - concerts, shows, restaurants, fairs, and other events; try to see if you can take your mind a little bit from the annoyance of the pain. I think this has helped me a lot in coping with my problem. It hasn't solved it, but, as I said, it's like my brain turned down the volume on the pain alarms.

Don't give up and keep lookin'. I hope you will eventually feel better.

Has any of you tried saw palmetto (with lycopene and selenium optionally)? Someone posted (in this topic, some time ago) an info that it cured him (with vitamin C 1-2g), but as far as I read the topic, no one commented on it. I read it is sometimes used for "chronic pelvic pain syndrome", which may be related to what we have (non-bacterial unknown-origin testicular pain). Btw, my pain was caused by Zoloft (and I took this poisonous drug 10 days only), now, 1,5 year later, my body still haven't recovered from it.

I've seen people take saw palmetto for prostate problems - urine retention due to enlarged prostate. Hell, I've taken saw palmetto and I take vitamin C regularly, and they did nothing for me. Those saw palmetto supplements are expensive, too ('bout 30-40 bucks for a month's worth), but I figured it was worth a shot.

It's strange that Zoloft caused this kind of pain for you. You often read or hear it causes sexual dysfunction, but not the extreme of chronic pelvic pain syndrome. Then again, doctors don't believe what happened to me until they see for themselves how twisted and outta place my testicles look during a physical exam.

Here's more info about saw palmetto: nlm.nih.gov/medlineplus/druginfo/natural/971.html . They say you should take it with lycopene, but I guess it doesn't make a difference. So you didn't have any side effects from it either? How long were you taking it? What dosage?

Yeah, I hate doctors. Most of them cannot listen and think outside the box, not to mention that they don't really care about you. At least that's my experience. You have to search for the answer on your own. And never fully believe them. My doctor told me Zoloft is a safe drug.

As far as I read, my pain is not as bad as yours. My testicles are a little smaller and softer than usual. (my case in details if anyone is interested: https://www.steadyhealth.com/Testicular_pain_caused_by_Zoloft_t371314.html)

I should be more specific. I've been taking saw palmetto, along with vitamins C, D, and E since around April, 2014. I ran out of vitamin E after about 7 months, but kept taking saw palmetto and vitamin D up until now, March, 2015. I buy the Prosta-Strong brand from Amazon for about $33.00, including shipping. I started feeling less and less pain from around the end of May, 2014. It's also around the time my work restriction expired and I also stopped taking Vicodin and any other pain medications. I was still feeling weird aches and pains, but less and less frequently up until around October, 2014, when I decided to stop taking Lyrica and Zymbalta medications, and opted for 8 rounds of physical therapy just to see what I can and cannot do.

I think the physical therapy was able to show me I could still do some things without feeling a lot of pain and discomfort. Ever since October, 2014, I've experienced bad pains mostly on my right, torsed/twisted testicle only a handful of times and only briefly (about 8 hours at the most). What I did was bed rest immediately and sat on warm baths for 20 minutes every 4 hours. I also sleep with a heating pad on the right side of my pelvis and right testicle area (not directly, but over my clothes). I took 600 mg of ibuprofen before going to bed and the next morning, I felt fine.

So, in short, I don't have much pain, if at all (could it be the saw palmetto and vitamin C or that my body slowly recuperate on its own?). Nowadays, it's mostly some aches and discomfort from near both testicles. I'm very specific about this. My discomfort, aches, and pains are not testicular, but feel as if they're coming from the spermatic cords (above the testes) and/or the epididymes (behind and below the testes).

I also have noticeable scrotal swelling in front of the left testicle and a larger swelling behind the right testicle. As I've been saying all along, my scrotum looks deformed with my left testicle hanging really low and back and my right testicle hangs really high and bulges forward. I cannot jump, run, sleep on my right side, or wear unormal nderwear without my right testicle sliding forward and up, and my left testicle hanging down to my knee. This is something the doctors and specialists were never able to explain to me and blew it off.

This sh*t happended to me aswell.

It all started with a positive chlamydia infection (I did tests for a lot of other STD:s but they were all negative).

I started with the doxy and 3 days into treatment my hell began with a burning sharp pain in left testicle. I went to emergency and they told me epididymitis.

I was given a longer dose of doxyclin, approx 36 x 100 mg in a period of 4 weeks. Since I wasn't fully recovered I got azitromax (6 x 250 mg) in case of any mycoplasma G.

Pain eventually went away after aprox 6-7 weeks.

The tests showed is did not have any infection left.

I now had a very sore testicle with discomfort and sometimes achy.

Now 3,5 months later, the testicle does not hurt to palpate at all, but I do get an ache when sitting for long periods of time and also it is still a little sore to the touch.

I have been doing everything to fasten healing, with frequent baths, ab and pelvic training, vitamins, diet, resting etc etc.

Is it supposed to take this long time? I have not been sexual active since I got this sh*t...

@JCA thanks for the info. At some point I think the most important think is to get rid of the fear. I know it's easier said than done, but at some point, when not much is changing, and we did our tests, it seems like a logical thing to do. I mean to acknowledge the pain/discomfort and say "okay, I know you're there, but you don't mean much, so since that moment my brain will ignore the signals you're sending", and treat it the same way you would treat a shoulder pain for example (without a fear). At the same time we can search for the remedy. I hope this didn't sound too smart.

Also, I would be careful with drugs like Lyrica, glad you stopped taking it.

Take care.

Pretty much what you said, John9001. My mind retrained to ignore pain or think of it as any other kind of pain and discomfort. My worst fear is torsion, so I got it into my mind that if torsion is the worst that can happen, then I'll either get a surgery to pex it or have it removed if the surgeon cannot salvage it. Once I got over that hurdle, the pain subsided significantly.

Thanks for all the insight. I have just resigned myself to always having pain in the right testicle and try to block it by doing things.
Heavy lifting and running are out for sure. As far as the physical appearance there is a mass shifted forward of the right testicle but the pain actually comes from the back side. One thing that has worked in diminishing the pain level is to rub Aspercreme into the scrotum. You can not do this everyday as the tender skin will begin to shed and it will look like a snake shedding its skin.
I have asked the Dr. and Surgeon for pain management clinic referrals but when I call them and ask if they work with scrotal pain they say no. This is just something no one has really looked into very much and that is what I have come to believe.
I have ridden the motorcycle some and really it is not too bad probably because it forces your legs out and it is a Gold Wing and probably rides better than a lot of cars

Pain management of suspected chronic epidydimitis might involve a nerve block. Ask the urologist and the anesthesiologist if this is something they'd suggest in your case. If they do, also ask how nerve blocks works and the risks and side effects involved - just so you know about the procedure and you don't go in blindly into something you have no clue about.