I suffered with severe epididymitis and testicular pain for the better part of a year before my pain was eliminated by a surgery called microsurgical denervation of the spermatic cord.

In the hope that the research I did over the course of my illness can help someone, I've put together a description of treatments for epididymitis and testicular pain.

Free feel to call me anytime if you have any questions, my phone number is 203-687-9269. I am on west coast US time, please call after 11 am and before 11 pm

-- Section 1: Non-surgical treatments for epididymitis and testicular pain

-- Section 2: The treatment approach my doctors and I used for me

-- Section 3: Some treatments for prostatitis (which can co-occur with epididymitis)

-- Section 4: Microsurgical denervation of the spermatic cord.

-- Section 5: Laparoscopic testicular denervation

-- Section 6: Low effectiveness of surgically removing the epididium and/or testicle

-- Section 7: Pudendal neuralgia

Before getting into the specific treatments, I'd like to reassure you that most cases of epididymitis resolve on their own, even when the pain is horrible and it feels like it will never end. There are guys on this board who have been suffering for years, but you should remember that on a board like this long term chronic patients will be dramatically over-represented. Most cases of epididymitis last less than a month, a fraction of those (cases that can be considered chronic epididymitis) take three to six months to resolve, and an even smaller fraction of chronic cases last for a year or more. But people with epididymitis that only lasts for the short term will post once or twice on this board and chronic patients will post many times, making it look like this affliction typically becomes chronic. Statistically speaking, you should get better with time, even if you've been in pain for months.

NON-SURGICAL TREATMENTS FOR EPIDIDIYMITIS AND TESTICULAR PAIN

Antibiotics: Most cases of epididymitis are caused by bacteria and get cleared up if you take standard anti-biotics like cipro or doxycycline. Levaquin and Ampicillin are other anti-biotics that have been mentioned on the board. Epididymitis typically last a few weeks but you may have to take the antibios for a few months to wipe out the infection.

-- A number of posters here have advocated for getting a semen culture done in addition to a urinanalysis in order to check for infections as thoroughly as possible. A urinalysis is common but you need to get it before you start taking antibiotics.

-- One compelling theory regarding epididymitis is that it is linked to problems with the prostate. That is to say, epididymitis could be the result of an infection in the prostate and/or inflammation that has spread from the prostate. Unfortunately, it is difficult to accurately diagnose prostatitis. In order to make sure that the antibiotics enter the prostate, antibiotics can be combined with prostatic massage. The evidence is mixed as to whether prostatic massage+ antibiotics is an effective treatment for prostatitis and little to no direct evidence (either for or against) the idea that prostatic massage + antibiotics is a good treatment for epididymitis. Many doctors believe that chronic prostatitis and chronic epididymitis are not the result of an infection. In my opinion, prostatic massage can't hurt and is worth trying in combination with antibiotics. Please see Section 3 for more information on treatments for prostatitis.

NSAIDs (non-steroidal anti-inflammatory drugs): The follow three help with inflammation and pain, but you can only take one of them at a time. With these drugs you should get blood tests once in a while because if taken over a long period of time they can have side effects like causing ulcers and damaging other internal organs.

-- Ibuprofin: At first I was taking three 200 mg pills three times a day.

-- Naproxen: Next I was taking 500 mg twice a day. This is the
same drug as Alleve, which you don't need a prescription for.

-- Mobic: After trying the above pills, my doctor switched me to mobic, 7.5 mg once daily and then 15 mg a day (7.5 mg twice daily). Mobic is better for long term use because its less likely to cause ulcers. Similar options are Celebrex and Piroxicam.

-- Indomethacin is another NSAID

Steroidal anti-inflammatories: Talk to your doctor about these only if the NSAIDs fail or if the inflammation is really bad. Options include cortisone and a nedrol dose pack

Herbal remedies: There haven't been many scientific studies re what sorts of herbs help with epididymitis and testicular pain, but many posters on this board swear by certain herbs.

-- A poster named John discovered that Fenugreek and Fennel were very effective for combating his epididymitis (see his post "Epididymitis And The Herb Fenugreek. My Story"). Here is John's recipe: "Two teaspoons of powdered Fenugreek and one teaspoon of powdered Fennel. Put in a mug and fill with boiling water. Stir well and cover. Drink the liquid (not the mulch at the bottom) when it has cooled sufficiently. Take twice to three times daily maximum. I have found that Fenugreek works perfectly well on its own. The tea tastes a little bitter and it may take a while to get used to. I think you can add a little honey to sweeten."

-- A number of posters have found that a bromelain/tumeric combo helped them

-- Prosta-Q: This pill is a health supplement that contains quercetin, bromelain, cranberry, and some other stuff thought to help with prostatitis. A scientific study by Dr. Daniel Shoskes found that Prosta-Q has a pretty substantial effect. No one has looked at whether it helps epididymitis but many posters on this board have anecdotally found positive effects from bromelain, one of the ingredients. You can buy this stuff online at http://www.farrlabs.com/products/?keyword=prosta-q.

(One thing I should note is that quercetin may cancel the effects of some antibiotics. So you might be best off taking it only if you have discontinued the antibiotics.)

Here is a reference and abstract for Dr. Shoskes' paper.

Shoskes, D.A., Zeitlin, S.I., Shahed A., & Rajfer, J. (1999). Quercetin in men with category III chronic prostatitis: a preliminary prospective, double-blind, placebo-controlled trial. Urology, 54, 960-3.

OBJECTIVES: The National Institutes of Health (NIH) category III chronic prostatitis syndromes (nonbacterial chronic prostatitis and prostatodynia) are common disorders with few effective therapies. Bioflavonoids have recently been shown in an open-label study to improve the symptoms of these disorders in a significant proportion of men. The aim of this study was to confirm these findings in a prospective randomized, double-blind, placebo-controlled trial. METHODS: Thirty men with category IIIa and IIIb chronic pelvic pain syndrome were randomized in a double-blind fashion to receive either placebo or the bioflavonoid quercetin 500 mg twice daily for 1 month. The NIH chronic prostatitis symptom score was used to grade symptoms and the quality-of-life impact at the start and conclusion of the study. In a follow-up unblind, open-label study, 17 additional men received 1 month of a supplement containing quercetin, as well as bromelain and papain (Prosta-O), which enhance bioflavonoid absorption. RESULTS: Two patients in the placebo group refused to complete the study because of worsening symptoms, leaving 13 placebo and 15 bioflavonoid patients for evaluation in the blind study. Both the quercetin and placebo groups were similar in age, symptom duration, and initial symptom score. Patients taking placebo had a mean improvement in NIH symptom score from 20.2 to 18.8 (not significant), while those taking the bioflavonoid had a mean improvement from 21.0 to 13.1 (P = 0.003). Twenty percent of patients taking placebo and 67% of patients taking the bioflavonoid had an improvement of symptoms of at least 25%. In the 17 patients who received Prosta-Q in the open-label study, 82% had at least a 25% improvement in symptom score.
CONCLUSIONS: Therapy with the bioflavonoid quercetin is well tolerated and provides significant symptomatic improvement in most men with chronic pelvic pain syndrome.

Some anti-depressant drugs have been found to have the secondary effect of helping with chronic pain. An article reviewing them can be seen here: http://www.aafp.org/afp/20050201/483.html. A couple of the medications are:

-- Ellavil: This is an anti-depressant that has been shown to have the additional effect of reducing chronic pain. You start at 25 mg before bedtime and go up to 100 mg. If you are depressed in addition to (or often because of) chronic pain you can go up to the doses used to treat depression, for example 400 mg a day. If you have high blood pressure this might be right for you because it has the additional secondary effect of lowering your blood pressure. This drug has the effect of lowering your sex drive and helping you sleep, which could be helpful if ejaculation exacerbates your pain and/or your pain makes it difficult to sleep at night.

-- Another anti-depressant often used for chronic pain is Cymbalta. This one doesn't lower blood pressure.

-- Try not to get upset if your doctor suggests low doses of an anti-depressant, this doesn't necessarily mean they think you're a head case. Low doses of anti-depressants are commonly prescribed for chronic pain.

Anti-seizure drugs have been found to have the secondary effect of reducing chronic pain in many patients (including me). The article mentioned above also reviews these mediations, see http://www.aafp.org/afp/20050201/483.html. Some of these medications are:

-- Neurontin/Gabapentin: This is a drug originally developed for people with seizures but which has also been found to help for chronic pain. It works great for some people (in one post I read about someone who's pain went from a 9 to a 1) but on others has no effect at all. You start with low doses and can go up as high as 3600 mg a day (three 400 mg pills three times a day).

-- Lyrica: This drug is a replacement for neurontin that works better for chronic pain. ChronicPain indicates in one of his posts that studies show this works better than Neurontin.

-- Topomax: A drug similar to Neurontin but that can be taken in addition to Neurontin and has been shown to help with chronic pain.

Many scholars believe chronic pelvic pain, including ep and testicular pain, are caused by pelvic floor dysfunction or pelvic myoneuropathy. This basically means your pelvic muscles are tense or even spasming due to high levels of tension, causing pain and in the latter case irritating your nerves. This is supported by many sufferers getting pain relief from anything relaxing (meditation, soaking in the tub, even taking a vacation). What may often happens in pelvic pain cases is that it's started by one thing (e.g., bacteria, injury) after which muscle tension can make the pain last for months or even years.

-- An influential book taking this perspective is "A Headache in the Pelvis" by David Wise.

-- You can also make an appointment with a physical therapist who can design a program of relaxation/activity thats best for you. They can also try trigger point therapy to try and get rid of the muscle tension.

-- Muscle relaxants like Klonopin can help relieve muscle tension, potentially reducing your pain.

-- If you have cremaster muscle contractions (e.g., your testicle being pulled way up, or moving up and down) muscle tension may be playing a role in your problem. Also, see if your pelvic muscles are clenching and unclenching.

Narcotic painkillers like percocet are great for reducing pain but can be addictive

Ultram/Tramadol: This is a strong painkiller that isn't nearly as addictive as percoset. You can't take it at the same time as ellavil because they interact badly.

Changes in diet: Many doctors say you should avoid caffeine. Some posters have found that their epididymitis is aggravated by beer and and/or other sorts of foods (e.g., suger, yeast). Try varying what you eat to see if abstaining from anything helps.

Acupuncture: Some posters have gotten good pain relief from acupuncture and others didn't.

Hernias: There seems to be a pattern that many of the posters on this board report having hernias or past hernia surgeries. It could be that some cases of epididymitis are caused by small hernias. To get diagnosed, you should go to a doctor who specializes in hernias so nothing gets missed. If this is the problem there are surgeries that can help, but I'm not familiar enough with them to describe them here. Northernspy and others have some very informative posts on this topic

Everyday activites: Many posters find a lot of pain relief from warm baths. It also seems to help to avoiding activities liking biking, sitting, and driving.

Heat pads: A number of posters have found these help, just put them on the affected area.

Ice: A number of posters have also found that putting ice on the affected area numbs their pain. Don't put the ice directly against your skin, put it over your clothes or wrap a towel around it. Take breaks in between icing.

Seating cushions: These "donut" cushions take pressure off your groin and can provide great pain relief, especially if your job involves a lot of driving or sitting at a desk. They are available for purchase online.

Scrotal supporter: Most doctors recommend this

Nerve blocks: A pain doctor can try injecting your spermatic cord with a combination of anesthetic and steroids. The injections can have the effect of eliminating your pain for as much as a month at a time and can be done 3-4 times. The blocks can also have a permanent positive effect if the steroid reduces inflammation or the anesthetic effect changes nerve signals.

Getting an ultrasound to check for other problems: This is worth it in general to see if you have active inflammation.

Kidney stones: Testicular pain can be caused by kidney stones. To see if this is the root of the problem, ask your doctor to give you a referral for a CAT scan.

Ejaculatory duct obstruction: If you don't have as much ejaculate before and/or you experience pain on ejaculation, you could have ejaculatory duct obstruction that is causing inflammation or infection that spread to the epididium/testicle. There are some treatments that can help for ejaculatory duct obstruction. Dr. Bradley Hennenfent's website (with discussion board) for this problem is here: http://epididymitisfoundation.org/

Neurological pain: Some cases of chronic ep pain are likely neurological because ultrasounds and other methods don't reveal any clear physical problem. In some cases the pain was always neurological, in others there was an infection and/or inflammation that resolves but left the nerves damaged or irritated. In still other cases spasming pelvic muscles can irritate the nerves.

-- Symptoms that suggest nerve pain include tingling or pinprick sensations in the affected area

-- Neurological pain may result from problems in your spinal cord, for example from a lesion. See a neurologist about this possibility, the test to do is an fMRI scan of your spinal cord.

-- an fMRI scan of your scrotum and/or pelvis provides much more information than an ultrasound regarding inflamation and can further pick up damage to the nerves there.

-- Nerve damage can heal, but it often takes longer than for other injuries.

There are some doctors (more so in Europe than here) who treat extreme chronic pain with morphine (for example, with a morphine patch). According to the article at the address below, this is a very effective treatment and doesn't lead to addiction among people taking morphine for pain. The article is called "The tragedy of needless pain" and was published in Scientific American (Melzack, 1990).
http://www.doctordeluca.com/Library/Pain/TragedyOfNeedlessPain90.htm

Your pain could be caused by Illiosoas muscle, there are stretches and exercises you can use to relaxes this muscle. Pelvic Joint dysfunction could also be the cause, a poster named superior91 recently posted some information about these topics.

THE TREATMENT APPROACH MY DOCTORS AND I USED FOR ME:

Here I describe the treatment approach for the first few months of ep that my doctors and I worked out for me. They considered the first four treatment approaches essential and the rest optional.

-- Start taking an antibiotic (e.g., cipro) and keep taking it even if your symptoms go away (many posters find their pain keeps coming back after going off antibiotics). If you've had no improvement for a month, consider stopping but continue if you have seen improvement. [

-- Use a relatively high daily dose of a NSAID (e.g., ibuprofin, alleve). Get your blood checked every few months if you end up taking these long term.

-- Use a scrotal supporter.

-- Do everything you can to relax. Muscle tension may be the root of your problems but even if not, relaxing and staying positive will help you fight the inflammation, heal, and perhaps prevent your condition from becoming chronic.

If those first four don't do the trick or you want to try as many of the other treatments listed above as possible, here are a few suggestions:

-- Consider combining anti-biotics with prostatic massage]

-- Avoid caffeine

-- Warm baths for 15 min twice a day

-- Icing the area for 5 minutes at a time with breaks in between. Don't put the ice directly against your skin.

-- Use a heating pad on the affected area(s)

-- Take ellavil at night (start at 25mg and go up to 100mg).

-- Take Neurontin-- if your pain is really bad, go up from 400 mg a day to 3,600 mg a day. (I don't know the doses for Lyrica, a similar drug).

-- Herbal remedies like bromelain, tumeric

-- Take narcotic painkillers if the pain is really bad

-- Getting an ultrasound to check for physical abnormalities

If none of this helps, try as many of the other treatments listed earlier as you can. If everything fails to provide adequate pain relief and the pain is too severe to live with, consider microsurgical denervation of the spermatic cord.

SOME TREATMENTS FOR PROSTATITIS

Prostatitis often co-occurs with ep (inflammations and infections can pass from one organ to the other). Some treatments work for both afflictions (e.g., antibiotics, anti-inflammatories, relaxation techniques, Prosta-Q). But at the same time, there are some treatments that are mainly for prostatitis

The Manilla protocol (sometimes called the Philippines protocol): This is a treatment approach that combines anti-biotics with prostatic massage.

-- Dr. Shoskes has attempted this therapy at his clinic in cleveland, for more information go to: http://www.dshoskes.com/

-- You can also get this treatment at the prostate center in Arizona: http://prostate-usa.com/

-- Or you can go to the original doctors who created this treatment in the Phillipines: http://www.prostate.com.ph/

-- Getting this treatment in the Philippines costs about $10,000 total expenses (including rent, food, etc). You might have to stay a few months

-- The following article reports on the effects of the Manila protocol on three men with prostatitis (not epididymitis)

Hennenfent, B.R., & Feliciano, A.S. Jr. (2004). Clinical Remission of Chronic Refractory Pelvic Symptoms in Three Men. TheScientificWorldJOURNAL, 4, 152-165,
Abstract
We report on three American men with chronic refractory pelvic pain, urinary symptoms, and sexual dysfunction who traveled to the Philippines for treatment. In the Manila Genitourinary Clinic, the patients were treated with microbial diagnosis, antimicrobial therapy, and 19, 27, and 21 prostatic massages respectively. All three patients underwent resolution of symptoms.

-- This is a highly controversial therapy -- initial findings reported by the inventors of this treatment have not been consistently replicated by doctors in the U.S.

-- Siena recently posted a link to some posts critical of this approach (including some by widely respected prostatitis researchers):, I would read this before going down this route: http://groups.google.com/group/sci.med.prostate.prostatitis/msg/660610ac2da499c3

Hard-to-kill nanobacteria can cause prostatitis. A 2005 article by Dr. Shoskes describes treatments for this. You can read the full version of Dr. Shoskes nanobacteria article here:

-- Another location for the full Shoskes nanobacteria article is here: http://www.prostatitis.org/urology.html

Another notable medication is Allopurinol, which is used to treat uric acid problems and was shown to help prostatitis pain in a 1996 study by Persson and colleagues in the Journal of Urology. Here are the abstract and reference for that paper.

Persson, B.E., Ronquist, G., & Ekblom, M. (1996). Ameliorative effect of allopurinol on nonbacterial prostatitis: a parallel double-blind controlled study. Journal of Urology, 155, 961-964

ABSTRACT: PURPOSE: Nonbacterial prostatitis is a common problem in young men. It is a disease that is often recurrent and each episode lasts for several months. Different causative mechanisms of the disease have been discussed, including identified and unidentified microorganisms, stone formation and psychological factors. We have demonstrated in a previous study that urinary reflux (as shown by a high creatinine concentration in prostatic fluid) occurs to a varying extent into the prostatic ducts, and this reflux has been related to prostatic pain and urate concentration in expressed prostatic secretion. MATERIALS AND METHODS: We performed a paralled double-blind controlled study of the objective and subjective effects of allopurinol on patients with nonbacterial prostatitis. Twenty patients received placebo, 18 received 300 mg. allopurinol daily and 16 received 600 mg allopurinol daily for 240 days. All patients began medication at the same time regardless of whether the disease was in an active state. No side effects were noted in the treatment groups. RESULTS: Significant effects were noted on the concentrations of serum urate, urine urate, expressed prostatic secretion urate, expressed prostatic secretion xanthine and subjective discomfort. CONCLUSIONS: Allopurinol has a significant, positive effect on nonbacterial prostatitis. It is safe and worthy of trial for all at least a 3- month period at each episode to relieve the symptoms of nonbacterial prostatitis.

Here are some more prostatitis medications:

-- Alpha blockers like Flomax relax muscles in the area.

-- Uroxatrol can be used to try to relax the gland.

-- Tizanidine aims to treat muscle spasms.

-- Drugs with a more general anti-anxiety effect (e.g., Klonopin) may also help relax muscle tension but are addictive.

-- A drug called Finasteride helped prostatis symptoms in a study by Leskinen et al. (1999). This drug is an enzyme inhibitor and aims to treat the urinary symptoms (e.g., pissing constantly, constantly feeling as though you have to piss) associated with prostatitis.

-- There is an immune response drug called Elmiron that is going to come out that might help in cases in which prostatis is due to problems with the immune system.

Dr. Guercini in Rome, Italy, uses experimental techniques including water-induced themotherapy and introprostatic injections of antibiotics and steroids to treat prostatitis. He reports a 65% cure rate with 6 and 12 month follow-ups for introprostatic injections. Water-induced themotherapy, which is a non-invasive approach, significantly reduces pain and prostatitis symptoms. (I should note here that several posters on this board have reported increased pain due to prostatic injections, although their doctor was not Dr. Guercini.

There is apparently an experimental device called a "Prostratron" which aims to cook the prostate with microwaves. This doesn't yet have an established track record of helping and there have been complaints of increases in symptoms.

A process called transurethral needle ablation (TUNA) is sometimes used to treat nonbacterial prostatitis, and there is some initial evidence it can help. A study by Chiang et al (1997) found that in a sample of seven patients, four had a remission in symptoms and 3 had a partial remission. Here is a reference and abstract for the TUNA treatment:

Chiang, P.H., Tsai, E.M., & Chiang C.P. (1997). Pilot study of transurethral needle ablation (TUNA) in treatment of nonbacterial prostatitis. Journal of Endourology, 11, 367-370.

"Transurethral needle ablation (TUNA) was performed on seven patients with chronic nonbacterial prostatitis who failed to respond to conventional treatments administered for more than half a year. The TUNA procedure heated the prostate to a temperature ranging from 90 degrees to 100 degrees C while the urethral temperature was maintained below 43 degrees C by a protective sheath and irrigation.
After treatment, four patients showed complete resolution of symptoms and three a partial improvement. All patients had a decrease in the leukocyte count in expressed prostatic secretions (EPS) 1 month after treatment.
Recurrence of abnormal inflammatory cells in the EPS was noted in two patients at 3 months after treatment. The subjective improvement has been maintained during the subsequent follow-up.
From these results, TUNA is considered to be an effective, safe, and easy treatment for most patients with nonbacterial prostatitis."

Botox injections can be used to reduce the pain.

For much more info on prostatitis treatments, go to http://www.prostatitis.org/methods.html

Also, check out Dr. Hennenfent's book "The Prostatitis Syndromes".

MICROSURGICAL DENERVATION OF THE SPERMATIC CORD

The surgery consists of cutting the nerves in your spermatic cord, which mediate pain from the epididium and testicle. At this point, microsurgical denervation is the most effective surgical treatment for chronic epididymal and testicular pain.

About Dr. Levine:

- Dr. Laurence Levine in Chicago is the best person in the United States to see for microsurgical denervation.

- On his website (http://www.urologyspecialists.net/meetus.html), it notes he's been selected as one of the Best Doctors in America (1994-2005). As you can see on the website, Dr. Levine has earned many honors in his field and published many scientific articles. (you can view his vitae at: http://www.urologyspecialists.net/print/levinecv.html). His article on microsurgical denervation (Levine & Matkov, 1996) was published in the Journal of Urology, the #1 urological journal in the world.

-- To begin this process, you call Dr. Levine's office at 312-563-5000 and make an appointment for a consultation over the phone. The cost of the consultation is $150 but you can talk for a long time.

-- In my consultation Dr. Levine indicated that he likes to wait a good while (six months to a year) in the hopes that the inflammation/pain will burn itself out without having to resort to surgery.

-- Dr. Levine prefers to denervate one epididium+testicle at a time to be on the safe side.

About Dr. Heidenreich

-- Dr. Heidenreich in Germany is the best person in Europe to see for microsurgical denervation.

-- Dr. Heidenreich is willing to denervate both sides at the same time.

The surgery involves removing the nerves from the spermatic cord that mediate pain froming from the epididium and testicle. The typical effect is that the patient can no longer feel the pain, but can still feel the testicle/tissue. So when it works, what it does is restore you to where you were before the ep pain started.

-- One thing that might be important for the squeamish is that the surgery is done where your pubic hair are, not on your scrotum or penis. They go in and cut the nerves that go down to your epididium and testicle. It doesn't affect ability to feel your penis or your sexual function.

-- In younger patients, Dr. Levine prefers not to remove the vas deferens and instead removes the nerves while still leaving the vas. This is done so that you can still have kids. In older patients, he sometimes just removes the vas if the patient doesn't want to have any more kids. He said that removing the vas or not makes no difference in the effectiveness of the surgery.

-- Dr. Heidenreich’s approach is to remove the vast deferens regardless of the patient's age. This is perhaps the biggest difference between how different doctors do the surgery and is something that is worth asking about. If you get the surgery on both sides with the vas being removed you would no longer be able to have kids.

- You go under general anesthesia, operation takes a few hours. It's done on an outpatient basis, so you can leave the hospital right after the surgery. Dr. Levine recommends you stay at the Marriott hotel next door a few days before traveling.

- Swelling at the incison site and in the testicle on that side happens to most patients to some degree, but usually goes away with time. In my case the pain at the incison site was minimal and I was back to normal in less than a week. Make sure to ice the area for the days following the surgery, this helps keep the swelling down.

Success rate:

- There are two published articles on this treatment that I know of. The first has about 30 patients, of this group 75% of the surgeries led to complete pain relief and another 10% resulted in partial pain relief. The second article also has about 30 patients and about 95% got complete pain relief.

- In my phone consultation with Dr. Levine, he told me that he and his team have been able to increase their success rate to 85% complete pain relief, 10% partial relief and 5% no relief. That's based on about 100 operations.

-- In my consultation with Dr. Heidenreich, he indicated that his team's success rate is 75% total pain relief, another 10% partial pain relief, and 15% no pain relief. Notably, this is a somewhat lower success rate than in his published article (95% success rate). This is likely because patients in the published article were carefully selected to be individuals who had no other symptoms other than pain (suggesting a neurological problem, in which case cutting the nerves would be most effective).

-- If you decide to go through with the surgery, make sure to ask the doctor what his personal success rate is. None of the doctors I talked to besides Dr. Levine and Dr. Heidenreich had a success rate higher than 75%.

-- I spoke with a neurologist who said that given that the operation is a success (i.e., you no longer have ep or testicular pain for the months right after the surgery) the nerves will never regrow. So given that the denervation works initially, you have a permanent solution to your pain. This is backed up by the published articles on microsurgical denervation, which did follow-ups as many as three years later and found patients for whom the surgery worked still didn't have any pain.

-- pgapro1112, a poster on this board also consulted with two neurologists before getting the surgery. Both said that it was possible but extremely unlikely that the nerves would regrow and the pain would return.

-- Another thing: if you have bilateral pain (pain on both sides), make sure to get the side where the pain started denervated first. In some cases of bilateral pain, the pain on the second side is sometimes referred pain. This means there isn't anything actually wrong on that side, its that the nerves are picking up the pain from the first side. If this is the case, getting the first side denervated will eliminate the pain on BOTH sides.

Spermatic cord block:

- To qualify for the surgery, most doctors want you to get a spermatic cord block first. You get these done at a pain clinic, or go to Chicago and get them done by Dr. Levine. The doctor injects your spermatic cord with anesthetic to see if that reduces the pain. This is to make sure your pain is really in your scrotum/testicle and not referred pain thats coming from another part of your body.

-- To qualify for the surgery, Dr. Heidenreich once you get two spermatic cord locks, one with anesthetic and one with saline. You can get these done at a pain clinic, ask for the records of the injections and whether they helped your pain, and e-mail or mail him a copy.

- If the spermatic cord block doesn't work, it could just be that the doctor didn't do the injection quite right. However, this could also be because the testicular pain is mediated by the pudendal nerve (see section 6 for more info)

- Seriously consider going to Chicago and getting the injections done with Dr. Levine to make sure they are done right. From my communications with other sufferers it seems other doctors try these injections in various different ways, some of which aren't the right way. If the block works with a doctor other than Dr. Levine, that means the surgery should work, but if the block fails you won't know whether its because the pain is referred pain or because the doctor didn't do the right injection.

-- I believe Dr. Levine charges a little under $1,000 for the nerve block. Insurance should cover this because nerve blocks are a widely used treatment.

Risks of the surgery:

- There are some significant risks. Two patients in the first major article on microsurgical denervation (Levine & Matkov, 1996) got testicular atrophy (death of the testicle). They were happy with the results of the operation because they at least got relief from the chronic pain and still had the other testicle. Dr. Levine told me that since the first 30 or so operations reported in the 1996 article his team hasn't had atrophy of the testicle happen again, even though they've done many denervation surgeries.

-- In the second article (Heidenreich, Olbert, & Engelmann, 2002, two patients got a scrotal hematoma (blood collecting in the scrotum- unusually goes away with time).

- It is possible for the surgery to result in scarring that makes the nerve pain worse. This didn't happen for any of the 60 or so patients in the two articles, so the probability is probably fairly small. But it is possible and someting to consider seriously. Dave1969 on this site had a bad experience with microsurgical denervation. While the surgery eliminated his epididymitis pain, the nerves at the incision site appear to have been damaged during the operation. He now has pain at the incision site rather than epididymitis pain.

Scientific articles on microsurgical denervation:

-- There are two major articles looking at microsurgical
denervation of the spermatic cord. Here are brief summaries of each paper written by the authors. The complete first article is attached to this post as a pdf file. I've further pasted a web address where you can find the complete text of the second article online.

Article #1
Levine, L.A., & Matkov, T.A. (1996). Microsurgical Denervation of the Spermatic Cord: A Surgical Alternative in the Treatment of Chronic Orchalgia. Journal of Urology, 155, 1927-1929.
Purpose: We evaluate the effectiveness of microsurgical denervation of the spermatic cord for treatment of chronic orchialgia. MATERIALS AND METHODS: Patients referred to our clinic diagnosed with chronic orchialgia are evaluated with a thorough medical and psychiatric history, physical examination and scrotal ultrasound when indicated. A total of 27 patients with chronic orchialgia refractory to nonsurgical management who had temporary pain relief after undergoing outpatient cord block were candidates for denervation. There were 6 patients who had bilateral pain, therefore, 33 testicular units were denervated. Followup ranged from 1 to 74 months (mean 20). RESULTS: Complete pain relief was noted in 25 (76%) testicular units, partial relief in 3 (9.1%) and no relief in the remaining 5 (15%), with a mean followup of 19, 24 and 10 months, respectively. There was no significant difference in outcome when evaluated by the etiology of orchialgia. CONCLUSIONS: When conservative treatment fails, microsurgical denervation of the spermatic cord should be considered first rate surgical therapy for patients with chronic orchialgia.

Article #2
Heidenreich, A., Olbert, P., & Engelmann ,U.H. (2002). Management of Chronic Testalgia by Microsurgical Testicular Denervation. European Urology, 41, 392-397.
Objectives:
Chronic testicular pain (CTP) is defined as uni- or bilateral, intermittent or continuous testicular discomfort of at least 3 months duration that interferes with the patient's daily activities and prompts him to seek medical advice is a rather common urological manifestation of chronic pain syndrome, Diagnosis and treatment of CTP has 0been a difficult and often unrewarding clinical situation. Success rates of conservative and surgical measures including epididymectomy and orchiectomy rarely exceed 55-73% and 10-40%, respectively. We report our experience on microsurgical testicular denervation as therapeutic option in CTP.
Patients and Methods:
Following an extensive preoperative work-up (urine/semen cultures, transrectal ultrasound, testicular sonography, pain and orthopedic consultation) not revealing any pathologic abnormalities and a positive response to spermatic cord block, 35 patients underwent microsurgical testicular denervation, In brief, the spermatic cord was dissected, vas deferens, cremasteric muscle and testicular vessels were separated. After identification of the testicular artery by application of vasodilatating agents using magnifying loupes or the operating microscope, all structures besides the testicular artery, vas deferens and 1-2 Iymphatic vessels were coagulated and transected using bipolar diathermy.
Results :
After a mean follow-up of 31.5 months 34/35 (96%) patients are completely pain-free; no intra- or postoperative complications were encountered. No cases of testicular atrophy or hydrocele formation were observed during postoperative follow-up.
Conclusions :
Microsurgical testicular denervation results in reliable and reproducible excellent therapeutic success rates of 96% and should be integrated in the management of CTP at an early stage. High success rates require adequate and meticulous diagnostic work-up of the patients by spermatic cord block using saline as placebo and different local anaesthetics as an initial therapeutic armentarium predicting postoperative outcome.
This article is available online at: http://www.vasectomy-information.com/journal/display4.asp?search=116&topictype=PVP+incidence+and+treatment leash

Cost of the surgery:

-- The total costs are about $5,000 with Dr. Levine, per side

-- Some insurance companies will pay for the surgery but other's won't.

-- Here are some helpful tips on dealing with insurance companies posted by hopeless2:
"After reading several post about the problems some of you are having dealing with your insurance companies especially regarding getting to see Dr. Levine, I thought I might I be able to give you all some assistance. I deal with health insurance companies for a living. So here are some tips I have.
First, when ever you call your insurance company to inquire if a physician or procedure is cover, get the name of the person you are talking to, and the date and time of the call. Second if possible push the insurance company to give you an authorization number for the visit or procedure too.
Second, although most insurances have dropped the need to get a referral for a specialist from your primary care physician, many specialist still require it because there are a few that still require such a referral for payment. Most of the specialist just want to make sure they get paid and to see you stuck with a huge bill. This may be the case even if the customer service specialist at your insurance company says you don't a referral. So to be safe, it is best talk over your desires with your primary care physicain.
I read that one person put the cost of his initial visit with Dr. Levine on his credit card. In his post he said, that he was told that Dr. Levine was a provider by his insurance company. I would strongly suggest that he keeps that recipt, copy and send it in to his insurance company. He may well get a refund of those expenses minus copays and such. If worse comes to worse, he can submit those costs a deductions on his 2006 income taxes."

Getting there and where to stay if you get the operation done in Chicago

- You are REQUIRED to bring someone with you so that there will be someone there to help you in the period immediately after the operation.

-- They'll ask you not to drink water the day of the surgery or take blood thinning medications.

- To get there, you fly into O'Hare airport and take a taxi to the Marriott hotel in the medical district, which is right next door to where Dr. Levine works. The cab ride is about $40

-- Here is the address and contact info for the hotel. The cost of a room with two beds was $150 a night in my case.
Chicago Marriott at Medical District /UIC
625 South Ashland Avenue at Harrison Street
Chicago, Illinois 60607 USA
Phone: 1-312-491-1234
Fax: 1-312-529-6095
Toll-free: 1-800-356-3641
The hotel's website is: http://marriott.com/property/propertypage/CHIDM
Some tips for the hotel stay:

-- There are ice machines on every floor, if you bring some ziplock bags you can make ice packs to numb the area and prevent swelling during the couple days after the surgery.

-- You can also request internet and a refrigerator in your room. The little fridge is free (and useful for keeping ice packs cold) but the internet costs ten dollars a day.

-- The hotel has a shuttle that you can request which can take you to where the surgery is

My advice for severe ep sufferers considering surgery:

-- I am NOT advising everyone to get surgery. Personally I think that the pain should be pretty extreme to make going under the knife make any sense. Surgery should be a last ditch alternative when every other treatment has failed and the pain is severe and has gone on for a really long time.

-- Given that you have decided to turn to surgical approaches, I STRONGLY advise you to get microsurgical denervation instead of an epidydimectomy and/or getting the testicle removed. Getting organs removed eliminates the pain less often, you lose parts of your body, and has a track record of increasing pain in a significant number of patients.

-- Given that you have decided to go with microsurgical denervation, I STRONGLY advise you to get the operation done with Dr. Levine. Dr. Levine's patients have a 10% greater likelihood of total pain relief than the Heidenreich group, and a 20% greater likelihood of major pain relief than any of the remaining doctors I've looked into. The other doctors tended to have a 75% success rate.

Some people who gotten micro d

- Several other posters on this board have gotten this procedure and it worked for them, their internet names are pgapro112, Mike D, and bfoot5. Another poster named suicidalballsting had 90% pain relief but the pain was not completely eliminated. However, he is finding that the remaining pain is gradually going away in the months subsequent to the surgery. I have not spoken personally with Bob3586 but have heard he got partial relief (somedays with no pain, some days with pain). As noted earlier, Dave 1969's testicular pain was eliminated but he still has a lot of pain at the incision site.

- Here are a couple of testimonials from internet boards from two additional people who got the surgery (this is in addition to pgapro112 and the others from this site).

I had ten years of post vasectomy pain and went through every
treatment going,with little or no success,I had constant pain in my left testicle,which ended up with me not even able to work, even on the strongest pain relief,only spermatic cord blocks worked and then only for a short time.
I travelled to Germany on the other side of the world and had
Microsurgical testicular denervation carried out(5 months ago),I have been pain free ever since waking up from the op,though it has taken a wee while for the op site to settle.I think it was the best option as anything else would have involved removing bits as well as operating on the testicle Again!!! with little chance of success. Every case is
different but I seemed to fit the right criteria for that particular op.
Daniel Shadbolt ( >), February 05, 2004.

I left a message back in November 2004. I had the nerves removed from my left testicle due to the pain and my intolerance to many medications. The denervation worked well for me. It's been five weeks and the pain is almost 100% gone - but after the hell I've been through over the past 2 yrs - greatly reduced pain is as good as 100%.
I have been able to walk, drive, climb stairs, sit and everything else that I took for granted before. The surgery would have been a snap as well, but I was also sensitve to the meds used in the operating room. The denervation can be done in Toronto at Mount Sinai hospital by Dr. Jarvis. It was worth it!!!!!!!! By doing the de-nervation, I was able to keep the testicle and if the denervation didn't work, I still had
the next step to take ( removal of the testicle) though I am not fussy about getting rid of one of the boys. Good luck and may you all find comfort
-- Greg (), January 05, 2005.

LAPAROSCOPIC DENERVATION

This is a second type of nerve cutting surgery that can be used eliminate epididymitis/testicular pain. Here is the abstract of an article that examined its success rate.

Laparoscopic testicular denervation for chronic orchalgia.
· Cadeddu JA,
· Bishoff JT,
· Chan DY,
· Moore RG,
· Kavoussi LR,
· Jarrett TW.
James Buchanan Brady Urological Institute, Johns Hopkins Bayview Medical Center, Baltimore, Maryland, USA.
PURPOSE: No specific cause is identified in most cases of chronic orchialgia. Nonsurgical therapies, including management at a chronic pain clinic, are generally recommended. Only when multiple conservative measures fail are patients offered surgical intervention, such as orchiectomy. We evaluate laparoscopic testicular denervation as an organ preserving and minimally invasive surgical alternative. MATERIALS AND METHODS: Since 1993, 9 patients with chronic orchialgia have undergone transperitoneal laparoscopic testicular denervation after nonsurgical modalities failed. Using 1, 10 mm. and 1 or 2, 5 mm. ports, the gonadal vessels were isolated circumferentially and divided cephalad to the vas deferens and its vasculature. Preoperative treatment modalities, morbidity and outcome were documented. A cord block provided temporary relief in all 9 patients. Analog scales were used to assess long-term pain relief (0 no pain to 100 worst pain) and activity levels (0 bedrest to 100 no restrictions). RESULTS: Average symptom duration before laparoscopic testicular denervation was 4.1 years. Of 9 patients 8 had undergone prior scrotal surgery. Failed nonsurgical modalities included anti-inflammatory drugs in 7 patients, antibiotics in 6, pain clinic consultations in 4 and antidepressant medications in 2. Mean pain score decreased from 69.4 (range 35 to 90) preoperatively to 30.6 at a mean followup of 25.1 months. Excluding the 2 cases that had no pain relief (less than 10-point reduction), average pain score decreased from 69 to 19 postoperatively (mean reduction 71%). Activity levels improved in all cases. There were no significant complications, including testis atrophy. One patient who had no pain relief underwent subsequent hydrocelectomy for pain, which also failed. CONCLUSIONS: Laparoscopic testicular denervation can provide significant long-term pain relief and appears to be a reasonable alternative in select cases with chronic orchialgia refractory to medical therapy. Larger series and prospective evaluations are necessary.

SUCCESS RATE OF SURGICALLY REMOVING THE EPIDIDIUM OR TESTICLE

Doctors I talk to said that the success rate of an epididymectomy for patients who have physical symptoms such as inflammation is about 70%. However, for patients who only have pain the success rate is about 30%-50%. Also, a significant minority of patients end up with increased pain because of the epididymectomy. The success rates for oriechtomies are even lower according to these doctors, averaging about 40%-50%.

These two peer-reviewed scientific articles find that oriechtomies FAIL about 50% of the time.

-- Davis, B.A., Noble, M. J., Weigel et al. (1990) Analysis and management of chronic testicular pain. Journal of Urology, 143, 936.

-- Costabile, B.E., Hahn, M., and McLeod, D.G. (1991). Chronic orchalgia in the pain prone patient: The clinical perspective. Journal of Urology, 146, 1571.

These two peer-reviewed scientific articles report that epididymectomies FAIL 50%-90% of the time.

-- Davis, B.A., Noble, M. J., Weigel et al. (1990) Analysis and management of chronic testicular pain. Journal of Urology, 143, 936.

-- Chen, T.F., & Ball, R. Y. (1991). Epididymectomy for post vasectomy pain: Historical review. British Journal of Urology, 68, 407.

PUDENDAL NEURALGIA

If spermatic cord blocks fail, it could be that they were done incorrectly by the doctor. However, another possibility is that the pain is mediated by the pudendal nerve (this nerve runs back from your scrotum to your tailbone). I should note that most doctors view pudendal neuralgia as an uncommon cause of epididymitis and orchalgia. Also, diagnosing and treating pudendal nerve problems is in its infancy.

A nerve conduction test called the PNMLT is used to diagnose this condition. The primary places for the diagnosis and treatment of this condition are Nantes France and Houston, Texas

Kenneth M. Renney, MD
2500 Fondren Road Suite 300
Houston, Texas 77063, USA
Contact
Phone: (713) 789 5444
and (281) 565-8800
Email: Dr. Ken Renney
Visit Dr. Renney's website here: Houston Orthopedics Sports Medicine Associates, P.A.

Prof. Roger Robert (Neurosurgeon)
c/o Dr. Maurice Bensignor
Centre Catherine de Sienne
2 rue Eric Tabarly
44202 NANTES CEDEX, France

You can find other doctors on this site:

http://www.pudendalnerve.info/forums/pnformpages/physicians.htm

Injections:

-- Doctors can do injections of steroids or heparin near this nerve to try and fix the problem. They state that the injections can cure the problem 50% of the time. You can have up to four injections.

-- Botox injections can be used to reduce the pain, but these are temporary and are not a treatment

Surgical options:

In some cases the nerve might be actually entrapped. This is very rare, but can be treated using a surgery that tries to un-entrap the nerve. This de-entrapment surgery has a relatively low success rate, unfortunately, and is considered experimental. It is done mainly in Nantes France and Houston, Texas.

The article by Dr. Roberts on the surgery is posted here:

http://72.14.203.104/search?q=cache:eK3c2py0DeQJ:www.pudendal.info/info/documents/PNE_By_Prof_Robert.pdf+Pudendal+nerve+entrapment+France&hl=en&gl=us&ct=clnk&cd=3

Another important doctor who specializes in pudendal neuralgia is Dr. Stanley Antolak. In addition to a de-entrapment surgery, he has been experimenting with a surgery that divides the nerve (the nerve cannot be actually cut because you lose control of your bowels).

Stanley Antolak, M.D.
8650 Hudson Boulevard, Suite 325
Lake Elmo, MN 55042
[1] 651-714-8255
http://www.centerforurologicandpelvicpain.com

Again, these two surgical options do not have a proven track record when it comes to completely eliminating the pain, are considerd controversial, and I would be very reluctant to recommend either.

Websites:

http://en.wikipedia.org/wiki/Pudendal_Nerve_Entrapment

http://www.answers.com/topic/pudendal-nerve-entrapment

http://www.perineology.com/files/pudendal_nerve.htm

http://www.findarticles.com/p/articles/mi_m0CYD/is_18_39/ai_n6225845