First of all...hang in there guys. I know first hand how difficult it can be to deal with epididymis; it causes extreme pain, messes with your personal life, makes your work life hard to deal with, and so on...
Before you all read this, please read my latest question/posting located at...
…it is a long passage, however, you will all definitely benefit from reading what I have to say!!
...there you will find the short version of my medical history dating back 3 years. Around 2003 I developed my first case of epididymitis. It came during a time where I was almost completely sexually inactive. I probably engaged in sex once in a 6 month period...maybe some of you guys were in the same boat!! Now, I was working very long hours at a new job; lots of job-related stress and adjusting to life in a new town.
I have to tell you; a few months prior to the epididymis, I had a very bad experience…
I was on my drive to work when I suddenly got hit with a real extreme shot of pain in my genitals (mostly my right testicle)…the pain made me crash my car!! I went to the local ER to find out what was going on. After a very painful prostate exam, the doctor determined I had Prostatitis or; an infection of the prostate gland. A normal prostate is supposed to be the size of a golf ball; mine was about the size of a fist. The doctor said the most likely cause was possibly a result of gonorrhea. NOW, most of you have mentioned your doctors said your pain could have been STD related as well, right? WELL, I get tested every year as part of my regular check-up/blood work…EVEN if I know I have only been with one person. I was tested immediately following the prostatitis and the results were NEG like all of you!!
So, on to the epididymitis…I developed this infection a few months after the prostatitis. The doctors said they could have been related, however, there were no conclusive results.
I have developed epididymis three times all told since 2003…all without warning, without a direct correlation to anything in particular and all easily cleared up with antibiotics.
THIS IS WHAT I KNOW ABOUT CAUSES OF THE INFECTION…
Epididymitis is the infection of the gland sitting atop the testicle. It is the gland in charge of sperm production which then moves the sperm into the testicle for storage. When the sperm are OVER-produced, they build up in storage and literally “back up” into the epididymis causing major irritation and inflammation. This can be one cause of the infection.
So, maybe you are not being sexually active…maybe you are. Either way, your epi-gland might be overworking as a flaw.
Another possibility…I learned that sometimes the sperm produced in the epididymis can calcify; they literally harden. What causes this, I do not know!! What I do know is that this calcification causes a “block” of sorts that prevents newly manufactured sperm from moving along their natural path into storage. This causes pain…horrible pain…and horrible inflammation!! Moreover, it causes infection. This type of epididymis can lead to the gland itself calcifying…if you experience this infection and your epididymis starts to harden, PLEASE; go to the doctor ASAP!!
You have all mentioned some seemingly unrelated pain throughout your lower abdomens, groin, genitals, lower back, and upper legs. THIS COULD BE A SERIOUS PROBLEM!!
In my case, I had two inguinal hernias that were repaired, resulted in chronic pain similar to that which you have all described. Following a procedure in which some of my nerves were removed from my groin (to reduce the pain symptoms), I developed new and more serious pain. All told, I have undergone 8 major surgeries, numerous nerve block injections, every painkiller in the book (literally!!), all types of treatment, and now…I have a nerve stimulator implanted in my abdomen with lead wires placed above my testicles in my pubic region. The stimulation replaces some of the pain signals with electric sensation…very uncomfortable at times, however, MUCH better than pain!!
I do not want to assume you are all in the same boat as me, but, you are all experiencing symptoms related to something called neuralgia.
More specifically, you are experiencing inguinal (pubic region) neuralgia and lower extremity (thighs, lower back/abdomen) neuropathy. These words sound troubling, but don’t be too scared!! Neuralgia/neuropathy basically describes pain from a source other than that caused from direct trauma…it is nerve-related pain.
Ask yourself a couple of questions; does the pain come on randomly? Can the pain be described as burning, stabbing, shooting, radiating, crawling, tingling, or pinching? Does the pain get worse with certain foods/alcohol/drinks or medications? Do you sometimes experience numbness or a lack of sensation in the complaint regions? Is your skin very sensitive (almost painful) to the touch in the complaint regions? When you experience the bad pain in your genitals/groin, do you feel simultaneous pain in your thighs, hips, or lower back?
If you answer yes to any or most of these questions, you might be experiencing something more than a simple case of epididymitis. With me, I had multiple cases of the infection because of the calcification problem…there was neither rhyme nor reason for it.
I have to stress my situation had something none of you have described…that is INGUINAL HERNIAS.
Although I genuinely hope none of you have an inguinal hernia, it sounds to me like you all need to have a very accurate hernia exam performed!! An inguinal hernia can surprisingly cause MANY different pain-related problems, many of which are characterized by what you all have experienced.
My doctors said chronic neuralgia as a result of a hernia/operation is a 1/50,000 occurrence. I experienced that in both left and right sides. The likelihood of chronic neuralgia as a result of a neurectomy (nerve-removal that I had) is 1/300,000…once again, I hit the number. I am either extremely unlucky, OR, the problem is more common than the medical world would like to admit, right?!!!?
It seems like to me that we are all in the same boat one way or another, and because of that, it is obvious that the odds of neuralgia pain is not as rare as “they” say.
So…I am not a doc, but, I can say with confidence that you are all dealing with one of the following;
Repeat Epididymitis due to overactive or malfunctioning epididymis gland/undiagnosed prostatitis/possibly retracted testicle that has not fallen/allodynia (pain to the touch caused by light contact)/NEURALGIA & NEUROPATHY of the lower extremities.
If none of those apply, get a HERNIA EXAM PLEASE!!! You might be surprised to find out you actually have one…they are painful and can cause MAJOR PAIN and serious problems if left unchecked!!
If all of those possibilities are wiped out…you might have a serious nerve-related problem either stemming from your lower spine (L2,L3,L4,L5), inguinal nerves (ilio-inguinal nerve, ilio-hypogastric nerve, and genital-femoral nerve…those are the three nerves in your groin on EACH side), or something else…
Well…thanks guys for reading this very long message!! I hope you all find the answers and treatment you desperately need. Please, EMAIL me on this site or post back with ANY questions you may have about what I have discussed. I have been treated by close to 80 doctors for my problem, so I can safely say I know a fair amount about these problems!! PLEASE ask anything related to the problem!!