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My life with orchialgia or chronic testicular pain

Sep 02, 2009 - 28 comments
Tags:

orchialgia

,

testicular

,

orchiopexy

,

orchiectomy

,

Pain



From age 18, I had chronic testicular pain on the right side, intermittent and varying from a dull throb to something that was the worse pain of my life. I went to my GP multiple times and was always given antibiotics and Advil, then I was upgraded to a urologist who would do nothing before giving me antibiotics and sending me for an ultrasound. (The system in Ontario was very slow at the time and all imaging tests had to be done at hospitals) Had the ultrasound and then when back to the urologist (this took months) then was scheduled for a right scrotal exploratory, since nothing showed on the ultrasound, at which point they did an orchiopexy on the right. At my followup after surgery I was told I had a congenital structural abnormality and I should have a orchiopexy on the left just for safety. So I did that. Then about a year later the pain returned on the right side. Went back to the same urologist and this time other options where discussed like a nerve block, I wanted to know the reason for the pain (the structural abnormality I was diagnosed with causes intermittent torsion so that was why the orchiopexies where performed) This time the surgery was more extensive that the last time on the right, the incision was inguinal and large (from the base of the penis all the way to the belt line) painful recovery. A cyst was found and removed and again an orchiopexy on the right was done.

So that was a total of 3 surgeries over about 4 years. By the end I had nerve damage on the skin from the extensive incision (inguinal) which I still have to this day (nearly 15 years later) pain and a lack of sensation on the right side of my pelvis.

I traveled to Japan after university. I continued to have pain and treated them with the pain meds from Canada I had brought with me. All Japanese people have national health coverage or coverage through the company, I as a non-Japanese had neither thus was reluctant to go to a clinic or hospital for treatment. I had a bad attack my second year in Japan and because I had a previous back injury I got pain meds again without having to give many details.

My pain would almost cycle up and down during the years. I was able to use anti inflammatory pills most of the time to manage the pain. I had a major attack again after I was married and my wife was pregnant, we went to the hospital she worked at to see the urologist. At that time I was not forceful enough in my presentation of my case. I had ultrasound by the doctor at the same time as the exam but it again was inconclusive. I should have made my case more clearly but the doctors do not have time to listen much and if the tests are negative then it is the next patient.  

The end of the pain came because the pain reached beyond my ability to function and control it. I saw a urologist at the clinic my wife was working at, again I was given antibiotics for 2 weeks, then another 2 weeks after which point I was unable to function for the pain. I was unable to sit or stand and walking was next to impossible. I went back to the clinic and had an extensive physical exam by two doctors as well as ultrasound, I had to get an injection which just took the edge off the pain. I was then told I would need surgery the next day and I would probably be looking at an orchiectomy. I was sent home with more meds to inject, my wife could give them to me. The next day, at the hospital the urologist was initially wanting to send me home again with antibiotics (I was in too much pain to give a proper history of my pain.) I had to wait until my wife could come at lunch time to consult the urologist as well as having the letter from the clinic as well. I was given blood tests, an ultrasound that seemed to take forever as well as pelvic x-rays. I was in surgery later that day for what ended up being a simple right sided orchiectomy (scrotal with the cords still in the scrotum, I have since learnt that this is not the preferred method of orchiectomy for men with orchialiga as the cords may cause issue in the future). Pathology did not show a reason for my pain, the structural abnormality that I was diagnosed with in Canada had mysteriously disappeared or I never had it to begin with? There was a difference in the densities of the testes. So the surgeon (head of the department) wrote up my case as nerve damage caused by previous surgeries.

The moral of my story is that young men should seek second opinions and avoid surgery if possible. If surgery is inevitable seek a highly qualified surgeon and not one without extensive experience. Also one who is willing to explain and consider your thoughts on your condition.

As I write this I have intermittent pain now on the left side as well as pain on the right side from the remains of the cords which have been known to attach to other structures and cause pain. I have not brought that up with my wife yet. I am not interested in another orchiectomy so I am seeking other options.



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by emitomo, Oct 01, 2009
I just read your posting and am sorry that you continue to have pain. Have you ever been evaluated by a physical therapist/physiotherapist for hip flexor tightness? Has genitofemoral neuralgia been considered as a possible cause of your chronic orchialgia? The genitofemoral nerve, which provides somatosensory innervation, pierces the psoas major muscle and can become impinged or irritated.

Avatar_m_tn
by Shirokuma, Oct 01, 2009
No never,

Pick your specialist and you pick your disease/ treatment. I have ever only been to urologists.
I am now looking for a pain specialist without luck. Even an English speaking urologist is tough to come by. I know that the pain on the right side is residual from the one surgery I had. It is crazy that there is still pain there but that is because I had a simple instead of a total orchiectomy on the right. If the inguinal approach had been taken then I maybe would have no problems now.

You might be right about the muscles/ nerves. I noticed (a bit late of course) that stress makes the pain worse. Thanks for the comments.

Avatar_n_tn
by emitomo, Oct 02, 2009
I realize now that I was somewhat incomplete in my writing about the genitofemoral nerve. I didn't clearly state that It can cause testicular pain when impinged because it innervates that area. I (and others I know, too) have seen/treated individuals with orchialgia caused by a shortened/tight psoas major (this is a large muscle that flexes the hip) causing genitofemoral nerve impingement. You don't say if there are things (e.g, activities, positions) that bring on your pain or make it worse. After all you've been through, though, it couldn't hurt to be evaluated for muscular/neural involvement as possibly contributing to your symptoms. Are you still living in Japan? I didn't even think about that until you said it's hard to find an English speaking urologist.

Avatar_m_tn
by Shirokuma, Oct 03, 2009
Thank you for the information,

Yes, I am still in Japan. I am in a rural area in the south of Kyushu. Most English speaking doctors are in Tokyo only. I am looking around now. I was looking to try a pain specialist this time.

To think that my pain is and was caused by muscles, that would be hard for me I think considering the surgeries I have had.

I agree that a different approach may not hurt. haha

Positions that cause pain, hmmm sitting always made it worse but laying down would not really solve the problem. Standing or activities did not really seem to matter much.

In all my research I never came across this idea. I think this is a perfect place to start for other men. Surgery should never have to be the first choice.

Thank you

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by Parekattil, Apr 27, 2010
Dear Shirokuma,
We do have some options to help relieve your pain at the dedicated groin/testicular pain program at University of Florida. Feel free to take a look at our website at: http://urology.ufl.edu/testicularpain/ or email me at: sijo.***@****
Sijo Parekattil, M.D.

Avatar_m_tn
by jdsayshello, Sep 03, 2010
    Hey there Shirokuma,
I'm new here to medhelp and well I saw your journal and just had to comment. I couldn't believe how similar our stories are (constant pain).

    I've had only one orchiopexy and (varicocele, hydrocele, chronic epididymitis-orchitis, and apperently now orchialgia) and also surgeries to removal the first two and a testicular biopsy. I was just wondering, how do you feel your condition has affected your life (being a long term condition)?

I've had my pain only for say a year, and have unfortunately turned quite bitter in character, and have been left sterile. I'm only 22 and would like to know what keeps you going? Because I have yet to find motivation or joy in anything anymore.

Avatar_m_tn
by RudiMatze, May 29, 2011
Hello, is there anybody out there with testicular pain caused by a varicocele. I have this problem since 1976. Three surgeries, limited success, still in pain. Please answer if you have similar problems!

Avatar_n_tn
by Jeantyrell, Aug 13, 2011
My 21 yr old son had orchiopexy on 7/22/11 for a diagnosis of intermittent testicular torsion.  Two weeks later the pain returned as if the surgery was never done.....now his urologist has prescribed antibiotics for infection.  I would think if he had an infection the pain would not be intermittent but constant and any infection would cleared up and pain would go away.  This has not been the case.  I am very concerned after reading these postings of what his future holds for him.  

Any advice will be appreciated.

Avatar_m_tn
by Shirokuma, Aug 13, 2011
Intermittent torsion seems to be a poor diagnosis, basically grasping at what it might be based on what it could be,

2 weeks of pain relief is too short and that means it is something else. Antibiotics means they are thinking other infections, so they will usually do 2 x 2 week courses (consider too he had antibiotics after surgery as well?)

What level is the pain and how is it triggered. Like I said I somewhere that the pain on my right side was attributed to nerve damage from the second orchiopexy.

I recommend all who are able to bank sperm.
I was never able, I am totally sterile now and so is my wife but if anything happened....

I guess I have not updated this is a while,

I had the left testicle removed as well in October 2010, radical inguinal orchiectomy. (32 years old at the time)
I have been 100% pain free since 3 days post op.
I take 125mgs of testosterone ethanate by injection (by a nurse) every week. (took months to get that organized properly, I had terrible issues with getting the hormone levels fixed)
I did have some depression issues for a couple months after (related a lot to the hormone levels I think)
My preop T was 271 which means my remaining testicle was failing, as well as being a pain.
Current T levels are comfortably around 500, still fully functional.
My last meds pre surgery where lyrica 75mgs 3 times per day as well as a sleeping pill at night and I still woke up if I moved in my sleep.

Wife had radical abdominal hysterectomy in April 2010 for her pain issues. uterine walls were 20cm thick, cervix and ovary removed as well, she was 40 at that time.



Avatar_n_tn
by Notsuper, Dec 24, 2011
wow, you are strong person. Shirokuma
Sorry for you to be through all of this.
I'm in constant testicural pain on my right, since 10 days ago. I'm 22.
The pain is very bad, i don't know how you lived with it for years, worked, and found your love, Glad you have your relieve after all.
I had discomfort for years, and now it is resulting in pain, i don't think there is any infection to begin with. Hopefully, conservative treatment will help, but preparing myself for worst, I decided to endure it for 1-2 years to resolve.
Have you considered Robotic microsurgical denervation of the spermatic cord?

Avatar_n_tn
by Notsuper, Dec 24, 2011
in my case, they say it is chronic epididymitis.
Going to check my kidneys/prostate/intestine for more answers,

Avatar_m_tn
by Shirokuma, Dec 25, 2011
Hi Notsuper,

robotic microsurgical denervation is good. It has about 83% chance of success, however a majority of men for whom it does not work still end up having radical orchiectomy surgeries. Of those men around 5% never get relief.

I talked to Dr. Parekattil about it, the cost alone was a huge factor. I live in Japan, flight, surgery etc was over 20,000 USD to have an 83% chance of saving a single testicle which was failing I later found out. The cost performance did not compute for me. I have been on HRT stably for a year now. I am currently searching for an endocrinologist though, in Japan that is not really the speciality that it is in the US.

Fertility is a huge concern I would expect given your age. You never really know how your life will work out. Get testosterone levels checked as well they really differ by person.

10 days is not that long, it needs to be longer than 3 months for most doctors to consider it chronic

Avatar_n_tn
by Notsuper, Dec 25, 2011
I think life in pain is much worse than no fertility...My lefty still seem to be ok, and i hope it won't be affected. and i'am considering banking as pre-caution,
My testosterone level is low(300), i was going to try to fix it, but it wasn't a problem.
What is matter: i can't work with pain, without work i can't pay bills and resolve pain. Cycle. I don't understand how you
managed to do things with pain.

My priorities are
1.resolve pain
2.having personal life
3.having kids

Sorry for asking this, but is there personal life, with hormone replacement in ur case? I know it is intimate, if u can, answer in personal message.

Avatar_m_tn
by Shirokuma, Dec 25, 2011
I was on lyrica at 75mgs 3 times a day and sleeping pills to sleep (left testicle). Manage is one way of looking at it.

The pain meds made me high all the time.

T of 300 at 22 is extremely low. I am 33 and try to keep it between 400 and 600. 300 give me sleep and energy issues.

Banking is a good idea I think. Bank loads, never know if the wife will need IVF etc.

I know the desire for pain resolution and I know the extremes that drives one too. When my pain was extreme I felt out of the world, I had no connection to anything. It was terrible. I was lucky though that I got IM pain meds at that time and I had the testicle out within a week (right testicle).

Personal life I am assuming you mean sex?

Ok, I am not the best person to ask as my wife is totally asexual following her hysterectomy.
The equipment still works, (better than before I would say as I had low T with the one testicle).

Avatar_n_tn
by Notsuper, Dec 25, 2011
I don't know how to find a girl when u'r in constant pain
It' like: Hello, I'm in pain and taking a lot of painkillers, want to come to my place and do nothing?

Avatar_n_tn
by Notsuper, Dec 25, 2011
how are you measuring T level? are there some quick tests like insuline ?

Avatar_m_tn
by Shirokuma, Dec 25, 2011
Nope it takes a week to get back here. I get it done in our clinic. My wife has her own clinic now and I am the HR/ accounting manager.

Avatar_n_tn
by Notsuper, Dec 26, 2011
hmmm is it possible to avoid oppressive effects on your organism after loosing both, with replacement, such as osteoporosis, loss of muscule mass, and live long and healthy life?
When i start to look for that info i found myself on some strange transsexual forums.

Avatar_m_tn
by Shirokuma, Dec 26, 2011
Hmmm there is a good yahoo group. Balance is key though and getting good support

Avatar_n_tn
by mandomtz, May 10, 2012
Hello I'M 26 and have been suffering from  Orchialgia since age 14. I've seen doctors,urologist, pain management specialist. Ultrasounds, MRI"S the whole 9. I've had inguinal nerve blocks and acupuncture. nothing seems to work. sometimes it goes away but sometimes it returns with a vengeance for a good periods of time. I am currently having a really bad flare up. I have no insurance and little money. Does anyone on here have any possible solutions or remedies? I'm at my wit's end and in severe pain.

Avatar_m_tn
by Shirokuma, May 13, 2012
Hi,

Inguinal nerve blocks are literally hit and miss. There are 3 nerves to hit otherwise it will not work.

The suggestion to me was to have a block from the spine near the tail bone. I was extremely nervous about that idea as I read some men ended up with numbness in thighs, penis and other places.

If it is not an infection
then it is usually ruled as nerve pain
Lyrica can help but I found the help it gave was as bad as the pain in terms of not being able to function.



Avatar_n_tn
by neart12, May 21, 2013
Hi all.

I'm in a similar boat.  Had left testicle removed due to testicular torsion aged 13.  Teenage years went fine.  Started to have orchialgia from early 20's which hasn't resolved yet.  Had a prosthesis inserted aged 30, which I think helped somewhat psychologically.  Re. testicular pain however, I haven't been as fortunate.  Well, at least not yet anyway.

I've had two orchidopexys, as I felt that my testicle was hanging too low for comfort.  This wasn't successful, so I had another a few years later.  This time a stitch was placed into the testicle.  

While it seems to have solved one problem (raised up the testicle) it created another - the pain/discomfort hasn't resolved.  If anything, its spread to my lower abdomen.

Any ideas?  I've seen a chronic pain specialist, but that's ongoing.

Avatar_m_tn
by Shirokuma, Sep 19, 2013
That is a major issue.

Continuing pain is annoying at best and debilitating at worst.

I ended up with both removed. It is not the best idea but it worked for me.

Avatar_n_tn
by iknev, Oct 27, 2013
Hi Shirokuma, I am 23 yr old. mine is also same story, actually i have operated for varicocele bcoz of huge pain. I got huge pain while doing pushups, i'm unable to touch my testicles. And before operation i had semen analysis my sperm count & motility was 18million/cc & 50% with grade-l bilateral varicocele , My doctor told that its very low count. Operation is very urgent. I dont know what to do at that time, i have my operation, its a open conventional surgery with 2 incisions on my groin, Now its 5th month going on from operation, i dont know why my 2 testicles are slightly hang up now(i mean near to groin), Now swelling has completely gone, and Now i have noticed that my right testicle has huge improvement in size while my left one has size decrement(i dont know actually i think they have performed testicle biopsy test on left one).

    And coming to point: I'm a student, since i am living with my friends now, some times you know some other videos like you know **** it happens, But at the time pre-ejaculate happened its okay but after 15 minutes i am getting pain in my groin place and place just above groin(bellow stomach). I dont know whats happening to me(i didn't ever jerk off), before i was a very energetic and exercising person But now i am unable to lift even a bucket of water(i can but i had a fear that may be i can get pain again).....
    Any help sir???

Avatar_n_tn
by iknev, Oct 27, 2013
mistaken: pre-ejaculte means when men arouse some colour less fluid will ejaculate.
Sorry about your story sir, but you are a very brave man really.. Lot of appreciation..

Avatar_f_tn
by afshinz, Apr 03, 2014
Hello,
how much do NSAIDs, like aspirin or advil, can prevent the pain?
I have orchialgia, but not chronic. It happens just when i am about to intercourse and stimulate enough so that my left, sometimes right, ilioinguinal nerve starts to inflame and pain.
After 10 to 15 minutes this pain becomes so severe that i can't do anything except lying down and just endure.
i know well that surgery is not a good solution for this kind of problem. searching internet to find more, i found out the primary solution is using NSAIDs, but don't know how much and which one is the most effective.

Avatar_f_tn
by afshinz, Apr 03, 2014
Or is there any other drug to help preventing the pain??
Thank you

Avatar_n_tn
by neart12, Jul 05, 2014
Thanks for sharing Shirokuma

I'm reluctant to have my other testicle removed (for obvious reasons).  Perhaps I have nothing to fear, but this would obviously be a last resort

Thinking about sperm banking.  I'm 41


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