Mysterious Pain Problems

SOME IMPORTANT BACKGROUND: I am an otherwise healthy 26 year old male diagnosed with chronic pain due to bi-lateral inguinal neuralgia/neuropathy of the lower extremities. 3 years ago, I had 2 inguinal hernia operations (L and R) fail to heal properly leaving me with bad pain. The pain was random (no apparent triggers) and could best be described as burning, shooting, stabbing, radiating, crawling, tingling, etc. The treating surgeon recommended a third surgery (R inguinal neurectomy) one year to date after the herniorrhaphies...after I consulted more surgeons and had a consult with Dr. Parviz Amid with the Lichenstein Hernia Institute. They recommended the neurectomy. The procedure was performed (Feb 2006) and the treating surgeon explained the results as mixed...

Only two nerves were excised; the genital femoral and ilio-inguinal. The surgical report stated they were unable to locate the ilio-hypogastric nerve. The procedure ran on longer than expected for many reasons; 1) massive amounts of dense fibrous collagenous tissue had to be separated from the nerve branches and cord structures 3) the genital femoral nerve was not completely excised due to it being wrapped within a granuloma that was in too close of proximity to the spermatic duct and adjoining blood supply and 4) a foreign body-type granuloma and neuroma were discovered that directly corresponded with some of my severe complaint pain.

Since that surgery, my pain has increased easily 500%...and what is worse, I have an extremely high pain threshold, always have...and this pain breaks me.

All told, I have undergone 8 major surgical procedures since the original hernia...the three aforementioned, two stim trials, one periph stim implant (infected/removed), and the most recent; the second stim implant. The stim has brought my everyday pain (constant/unrelenting) down almost 40%. What the stimulator and prescriptions have NOT successfully reduced are the PAIN FLARES. Understandably, the pain flares cannot be controlled by meds (no meds can control it...including 75mcg/hr fentanyl with 3600mg/daily neurontin). Also, the stim is not meant to control flares.

I am now in a very good pain management regiment that includes prescription treatment (lyrica, methadone, wellbutrin, and Ritalin) with Dr. Snook in Sacramento. He has tried several approaches to this problem including injections and medication management.

MY DILEMMA: Over the past 6 months, Dr. Snook has seen a troubling pattern with my case. Whereas the neural pain used to affect specific areas (bi-lateral inguinal, upper/inner right thigh, and right hip); it has now rapidly grown in size.

Now the pain has spread bi-laterally in my inner/front thighs, lower abdomen, and inguinal region…also into my right hip, bi-laterally to my lower back (near the hips), and the WORST pain is back in.my genitals.

The genital pain is VERY specific...located in 4 regions; bi-laterally in the upper region of my testicles, the bottom 2 inches of my penis (opposite the head), above the bottom/base of the penis and each testicle (front of the pubic bone), and the extreme pain is underneath my penis along the structure between my thighs extending to my anus. I am also experiencing pain in my buttocks near the penis base.

There are no specific triggers to all of this pain, however, there are definitely ways in which the pain flares come on quick, strong, and last. If I engage in sex, instant pain flare. I am doing my best to keep my relationship healthy by maintaining a regular sex life; however, this increasing pain is challenging all that in the worst way. I can go without sex...that is not my main concern. My main concern is what my body is going through.

After sexual activity, I experience up to 1 hr of throbbing pain in the base of my penis followed by very strong/dull throbbing pain throughout the other complaint regions. The pain will radiate through my genitals, last up to 24 hours; stinging, shooting, and burning. Although he did not feel such causes were likely, Dr. Snook eliminated the possibility of any infection/STD through extensive testing and various anti-biotics.

I must stress this pain comes on RANDOMLY...sometimes in my sleep.

I am also experiencing a mysterious problem in association with that pain...sometimes randomly, however, almost always during and after intercourse. Up to arousal, I will feel extreme pain in the base of my penis, however, once I reach an erection, 9 times out of 10 I experience something more; an absolute COMPLETE loss of sensation in my genitals. It will run from the tip of my penis to the base and all throughout my testicles.

The numb sensation runs deep, almost as if I cannot feel major tissue/nerve sensations.

Other than that sensation, I can only feel one thing during sexual activity (or during an unrelated pain flare); superficial sensitivity. I can only describe this pain as extreme pain on the very surface of my skin...EXTREMELY painful to contact, the worst of which I feel on my scrotum. It literally feels as if my scrotum is being squeezed, twisted, pulled hard, and burned. I know this must sound far fetched, however, I cannot stress how much this sensation hurts!! That is exactly how it feels to me though. The pain is almost an allodynia-type sensation. When I am experiencing one of these new pain flares, all I have to do to set off this superficial pain is lightly touch the surface of my skin...that is it. You can imagine how hard it must be to avoid one of these pain flares during sex without touching that region...it is impossible. It might help to tell you that this numbness makes it impossible for me to ejaculate 90% of the time...I literally cannot feel the sensation enough to climax. Problem is, when I DO ejaculate that 10% of the time, I experience what I can only describe as the worst pain of my life!! Every time this pain gets worse. There have been a couple of times in the past month that I feel pain so severe in my testicles (almost as if there is swelling within), once we initiate intercourse, my body automatically makes me ejaculate...that is not normal for me at all.

I have to mention again that my doctors know this problem is not associated with infection or a prostate problem...and the clear expansion of my pain regions over the past 6 months has made Dr. Snook feel that I might be experiencing a neurological pain problem on a broader scale.

So, after sex, and after my erection subsides, the numbness would otherwise feel like a blessing (helping me to avoid any more pain), however, the numbness starts to slowly meld into that extreme dull pain I spoke about earlier...and lasts up to 24 hours.

I can write much more about the pain, although, the aforementioned explains the most severe problems I am dealing with.

I am asking desperately; please help me!! I need some explanations!! My doctors are great, they are well educated and experienced...however, they are only human and my case is challenging their knowledge in the worst way.

If you folks have any ideas what might be going on with me, PLEASE, help me out!! I know I am experiencing neuralgia/neuropathy and I know what that can entail, however, I obviously do not know everything ;)

Any little bit of info about my case is important to me...any amount of explanation will bring a little more comfort to me!! I am 26 years old...I want to lead a long and fulfilling life, however, this whole situation is stopping me in my tracks!!!

Thank you all for reading, understanding, supporting, and for your time and consideration!!

-Dave M

[djbds]

In addition to all that I have mentioned above, I am also experiencing extreme twitching and convulsions in my legs and abdomen. It is so severe that my girlfriend cannot sleep. The convulsions seem to originate from my lower abdomen and shutter outwards into my legs and upper body. They are extremely painful and VERY bothersome. I have had EEGs and EKGs performed with no conclusive results.

Is this related to the other issues...and if so, is it very problematic?

[vortexnyc]

Hi Dave,

I hope you feel a little better. I wanted to let you know that you are not alone. I have experienced some of the pain you described as well.
I would like to ask you few questions that were also in my mind regarding my pain.
1) have you experienced any pain on the right or left side of you abdomen between the genital area and the umbilicus? ( I have experienced some sharp pain spots and stabbing sensation in that area along with the pain you described )
2) have you ever checked your spine bone compression to see if there are any compression between the vertebrae
3) have you experienced pain around your torso starting from the back and following the ribs towards the front of your abdomen/
4) if you had experienced pain in your lower abdomen do this pain shoots upwards towards your sternum?
5) do you had any pain going from your genitals towards the sides of you anus sphincter  ?

I would like to keep in touch and  exchange info about solutions we may find.

All the best
AR