Epididymitis/ Orchitis

[Tyson]

The last 10 years I have had several levels of testicular pain but it's always there. It has ranged fom the point of me spending 3-4 days a week going to the ER. to the point where I can hold a job for a few months. I have seen more docs. than I can count and hear the same thing over and over, I have been treated for the same conditions mostly Epididymitis by all the docs.
I have had several ultrasounds and massive scare tissue is seen from years of infamation. I have begged for removal of my testicals or to find the real problem but I can not be taken seriously, I am treated as a wacko or a drug addict. I have spent all my money and all my energy and dont have much left, I can not get a loan to see more docs. because I have 100's of thousands of dollars in debt from ER vists.
So I guess I hope some one out there has an idea for me of what could be my next step, (Fed.,state,city govt. dont feel I meet standards for help) I am willing to try anything!
If any med.schools could use a good case study I am the person that many Urologists and docs. can not figure out and I am willing to go any where in the world to get help!
If anyone cares to give an idea or would like more Info please contact me x E-mail [moderator note: contact information has been removed]
Thank you very much Tyson Payne

[Micah2]

Tyson-
I had the scar tissue removed once on mine and it relieved the pain. It doesn't sound right that no one would remove the scar tissue or even the testicle after that much time. I know my Dr. in Hutchinson,Ks. would be wanting to remove it at this point. Which part of country do you live in?

Steve in Ks.

[Tyson]

I live in Fla, my problem is that I cant pay to see any more docs.

[binky]

Can't really help much...we get this in UK too.
I have had this about 15 yrs ago. Had partial epeidectomy on rt testicle. some relief and after about Three (yes Three !) yrs it went away for about 10 yrs and is now back again.
Drs just fob you off hoping it will go away. If you are lucky it is an infection and can be dealt with by antibiotic. otherwise it becomes chronic and in my case at least pain progresses to lower abdomen and back. Going to see pain relief dr in 2 wks but expect that he will just tell me to continus with painkillers either paracetemol or co proxamol (i think thats tylenol in USA).
I'm sorry to say you might just have to accept it. i know that the pain drives you mad and when I had the stress of it beforwe and was working at the same time, I'm sure that it induced a heart attack.
it would be better to have something clearly visible...at least people would understand how bad it is.
i'm just hoping it will fade away again like it did before, but this episode has lasted 8 months and the constant painkillers are doing my head in.
Finally, I have been told that testicle remopval may not alleviate tyhe pain !

[Tyson]

Hey thanks for dropping a line,sorry to hear you suffer as well But thank you for your story. You start to wonder after so long and you never hear of anything like this and the docs. think your crazy and so does every one else. Thank you I hope all will work out for you good luck, stay strong I know how hard it can be!

[James186282]

I was pretty embarrassed about talking about it. In my old high school the joke was to yell "Your WHAT hurts?" and I thought they were talking about me.

If you can get your head above water finance wise I would suggest the following.

Get together with a Pain Doctor. Talk to them about all the options. Give them all a try and while your doing this try to find out for sure where the pain is located. If for example using nerve blocks on your Testicles / cords does not give you any relief you have to find out WHAT is the source. If you do find that your testicles/cords are the source work through all the steps.

Antibiotics, Nsaids, Nerve Drugs (Like Lyrica, Gabapatent Spellxed??? etc), Tens therapy, Nerve block injections, even opiates. "IF" all that fails or you can't function (Or it just doesn't work) you can try finding a really really good Urologist who knows about Orchialgia. He/she is trained to avoid doing Orchiectomies for this but... For some of us this is the only thing that works. If the doctor says they will never consider that move along to the next doctor. *Calling the Triage Nurse ahead of time might help you avoid meeting with doctors who won't consider doing an Orchiectomy.

If you get to that point ask that the cords (and Testes) be injected with Nerve blocks before they are removed. Pain Doctors think that doing this prior to an Amputation (And remember thats what this is) will make your chances of avoiding Phantom Pain. Insist on an Inguinal (aka Radical) Orchiectomy. This will allow them to remove most of the cords. Cords carry all the nerve bundles and the more of that removed the better. Also you don't want the cords dangling around in the scrotum causing you a new pain later.

Have the surgery done one side at a time (If you have bilateral pain) If you can avoid loosing both you can maintain your fertility and might avoid needing to go on Hormone Replacement. If not be sure to get your HRT program ready to roll with your MD because trust me... Life without Testosterone is pure hell...

BTW If for the poster who said that removal does not cure the pain? It worked for me and even tho I'm on HRT I'm very pleased I had it done. No pain! A huge plus. From the medical reports I've read a Radical Orchiectomy works in 90%+ of the cases.

[Tyson]

Thank you james for your time and advice it means alot. I am glad your pain has gone thank you

[paininthenuts]

This is my story, I hope you may learn something from it.

It started in March 2008 with a burning and sore penile gland. Just in case, I got tested at the local GUM clinic. As suspected I was clear, however the pain continued. I got re-tested just in case but all was OK. After a few weeks the pain subsided but spread to my right testicle. My doctor was a complete waist of time and it wasn't until I begged the GUM clinic to help was I sent to see a urologist The first one I saw didn't have a clue and told me I would have to up with it and just keep taking pain killers. It all became to unbearable, so I went to see another doctor who put me in contact with a private top urologist He confirmed what I thought and that was non bacterial epididmitis caused through heavy lifting. I had been treated for bacterial epidimitis along the way, however the drugs did not help. He suggested I have a bi lateral epididmectomy (removal of the entire epididymis). This was done 8 weeks ago and the whole experience was quite daunting. Nobody had prepared me for the change of colour and bruising I went through, not to mention the fact my wound got infected. Well here I am nearly two months later in the same pain I was in before. I have been told that the next step is to remove my testicles, but needless to say there are hormonal complications with this operation. Has anyone had a similar experience or any ideas they can share ?

[sidney9436]

have the testicles removed

my doctor did for me 15 years ago...best thing he did for me..i never went for all this bull..i just found a doctor to remove the testicles..hormone therapy is a breeze..like rubbing dirt off my shoulder in the morning

[paininthenuts]

[quote="sidney9436"]have the testicles removed

my doctor did for me 15 years ago...best thing he did for me..i never went for all this bull..i just found a doctor to remove the testicles..hormone therapy is a breeze..like rubbing dirt off my shoulder in the morning[/quote]

I have been told that having them removed is the next step. What is the op like and what sort of recovery time am I looking at. Is the hormone replacement just a case of taking a few pills a day and what sort of difference does it may to your life not having any testicles. Did you have prosthetic ones put in ?