New New Person with pudendal nerve disorder

[AmER]

My wife formulated my case, cause she's a physician. And she walks me patiently through this physio and psycho suffering that has been bothering me a year now. Which seems not to be long, from the perspective of so many other sufferers I' ve just discovered here and on Internet as well. Here goes:

"I'm a neonatologist, a Head of 3rd level Nicu in Zagreb, Croatia. I'm writting on behalf of my husband, the sufferer. He is a speech language therapist on the pediatric ward of the one of Croatian rehabilitation hospital, and he has a pudendal neuralgy, according to our specialist team.
It started a year ago, with nubness in the feet and feeling of a lump or foreign body deep in the rectum, with simultaneous pain in the perineum especcialy during sitting. The pain was spreading to left scrotum and testis, particularly the left one. At first, the pain was intermitent, delayed, mostly in the evening, growing into generilased myalgia and he lied down in fetal position with the cushon betwen his legs. He lost 13 kilograms, also, during just a couple of months.

In the first 2 months he could sit on occasion.
Well, we performed all checkings :
• gastroscopy- because he lost so much weight- normal findings
• colonoscopy-some benign polyps, PHD were normal
• urologists - several times- prostatitis chronica- they all stuck so firmly to that diagnosis. No trace of "thinking out of the box".
• cystoscopy- the blader was normal, in the uretra, they found some wrinkles of the mucosa, but that disapeard after instalation of fisiologic solution (0.9% solution of sodium)
• His imunoglobulins ( electrophoresis of IgG, IgA,IgM) were normal – we were afraid of the plasmocytoma
• NMR of lumbosacral spine with contrast -> extrusio of central regia IV disc L5-S1 with narowing of epidural space but without any sign of compression on the dura and neuronal roots. Bulging of L3-L4 discs with sign of anulus lesion.The posterior intercorporal line was normal, as morfology and position of medulla conus. Cauda equina didn't show any compression or patological postcontrast imbibition , like LS plexus. The pelvis with proximal parts of both femur were normal, without any expansive process. The structure of all checked bones of pelvis showed inhomogenicity as the consequences of distribution of the fat and hematopoetic activity, without osteolysis. Expressed angulations from first to second part of the coccigys with inhomogen structure and mild oedema in the first segment of the coccigys points to trauma, wich possibly could be the cause of the problems.?
• Xray of spine, pelvis and femurs – some osteolitic changes
• Scintigraphy noted degenerative symetrical changes intu shoulder, elbow, pelvis, femur- without any neoplastic process
• PET CT (from basis of skull)- showed the prostatolities (chronic prostatitis as trigger?) , other was ok.
• CT of thorax and abdomen-normal findings.
• EMNG of legs- the findings indicated the moderate chronic compensate lesion left L5 and mild lesion left S1, S2 with the lesions right L5- S1.

The colegues were thinking it's the chronic prostatitis at first, and he recivied manny antibiotics ( gentamycin twice through 2-3 weeks, than ertapanem through 6 days- , as he is allergic on kinolon antibiotics and sulfametoxazol and trimetoprim). The pain have been worsering, and my husband couldn't sit and walk. He can sit only on the antidecubital cushion just for 10-20 minutes (from August 2014., and lately only for couple of minutes!).
He fell on his buttocs when he was a child - 40 years ago. He takes the bus while going to work (80 minutes for both directions). The ride is especially traumatic on his way back home, although he sits on his antidecubital cushion. Not possible to stand in the bus.
His neurologist administrated Lyrica (pregabalin) – 3x 150 mg ; baclofen 3x 10 mg; amyzol (amitriptyline hydrochloride) 40 mg at evening. And on daily bases he uses ibuprofen 2 g. He felt better and reduced the use of ibuprofen and tramadolor ( he used tramadolor a 50 mg 1-2 tablets ). But then the worm weather period started, and buses taking him to work started the use the airconditioning, lowering the temperature which caused the return of the stabbing or burning pain in the perineum and scrotum (after couple of hours). The pain is always delayed after a provocation. Dexamethason helps significantly and now he is on the therapy with dexa through 5-6 days.
And I am afraid because he sweatting a lot at night, without pain.
Please help us, because his neurologist contacted other collegues, but in Croatia nobody ever had a similar case. She also contacted collegues at Denmark and US, but they didn't help much.
The next step which his neurologist has in plan is 3 Tesla NMR, but I am very suspicous that we have appropriate software for diagnosis of pudendal damages.
Well, my all hope is aimed at reducing his pain and bringing him his life back.
Sincerely
Snjezana Gveric- Ahmetasevic, PhD, MD
Pediatrician- neonatologist"

My wife vigoroulsy and eagerly went through and through the Internet (and not just there) to help me, although she was discharged from the hospital after the pace maker implantation just a couple of days ago, cause of her own heart problems.

That covers it all, I guess. Loosing almost 90% of my life quality is...well, needless to explain here. How to bring my life back? At the begining of it all I thought that if I'm going to have to stand and not be able to sit for the rest of my life...well, so let it be! Knew it'll not be easy. So far so...not good but tolerable.
Living in the country like this, where there are literaly hundreds of good doctors, but all went abroad from this ...system that value soccer and it's "problems and needs" more than elementary human needs like medicine....

My eager wife and my (still, but don't know for how much long) neurologist are all I have now. We'll se. At least, after reading some excellent articles on Health Organization For Pudendal Education blog, I could feel lucky at least being diagnosed properly "so quickly". Early diagnosis but none to help. Great!

It's not nice, maybe, to say it...but...I'm glad I'm not alone.
But I do, really, and from the bottom of my heart, wish that every and each one of you PN sufferers here find your way out of this pain, and bring your life back!

Very, very best wishes

amer Ahmetasevic
Zagreb
Croatia
Europe

[nyt]

Welcome to the forum. I am so sorry to hear all that you have been through. You have certainly worked extremely hard to get an accurate diagnosis.

Are you able to travel to any of the doctors in Europe that specialize in PN? Below is a link to the doctors that the forum is aware of that treat patients with PN. There might be others but these are the physicians we are currently aware of:

http://www.pudendalhope.info/node/54

If you really think pudendal nerve entrapment is what is going on the best way is to have this confirmed is to see a physician that specializes in pudendal neuralgia. Diagnosis is based on the Nantes Criteria and then confirmed after a positive response to nerve blocks. At least that is what many of the pudendal specialist do.

http://www.pudendalhope.info/node/69

I do not want you to be offended when I bring this is up as you have done your homework. However, there is a strong possibility from the EMG of your legs and the MRI of your back that your problem might be originating from your back and not from a peripheral entrapment of the pudendal nerve. I have a very close friend with a bulge at l5-S1 that when he has a flare he can't sit but does not have entrapment of the pudendal nerve. Have you tried a chiropractor to see if that helps? Or maybe a physical therapist to work with the back issues to see if that helps any of the symptoms. I know from personal experience that when we are in pain we alter are gait to try and walk more comfortable and muscle spasms pull things out of alignment. Getting them back in alignment does help decrease some of the pain.

Do you think the dexamethasone is causing the sweating since it is potential side effect?

In regards to the MRI, you might want to contact Hospital for Special Surgery in New York City, Dr. Potter (http://www.hss.edu/physicians_potter-hollis.asp) or St. Joseph's Hospital in Phoenix, Arizona Dr. Kalinkin (https://www.dignityhealth.org/stjosephs ... t-the-team) as both physicians have developed MRI protocols that are tailored to looking at the pudendal nerve. I know both physicians have shared their protocols with other facilities. I do not know whether they would help with interpretation but they might if the radiologist doing the MRI contacted them for help.

Again, I am so sorry you are going through such a difficult time. However, there is hope that you will get your life back to normal.

[AmER]

Thanks a lot on so many valuable infos nyt.
Right this moment, this day, I'm not able to reply to this properly.
Seems that bad thing are just piling up for our family here. Really don't know why is so but...

My wife, who recently got heart pace maker implant, got worse just yesterday. Today, she's in the kardio intensive care unit,
with serious acute heart problems. I'm scared like hell.
Everything was going just fine after pace maker implant last week, but...
I'm trying to organize myself here, and I'm putting this PN problem aside. Don't have much choice though.

Thanks again on this valuable reply.

very best

[ezer]

Non-bacterial prostatitis maybe?? (=stress, trauma, psycho-physiological disorder, somatic dissociation)

http://emedicine.medscape.com/article/456165-clinical

Medscape - Nonbacterial Prostatitis
Jun 26, 2013
Medscape is a web resource for physicians and health professionals

Author
Sunil K Ahuja, MD Department of Urology, Kaiser Permanente San Jose Medical Center

Patients with abacterial prostatitis/chronic pelvic pain syndrome (CPPS; category III in the 1995 National Institutes of Health prostatitis classification system) have the same symptom complex as those with chronic bacterial prostatitis. The chief symptom reported by patients with abacterial prostatitis/CPPS is pain. Genitourinary symptoms include perineal, penile tip, testicular, rectal, lower abdominal, or back pain.

Patients can also have irritative or obstructive urologic symptoms such as frequency, urgency, dysuria, decreased force of the urinary stream, nocturia, and incontinence. Other symptoms are a clear urethral discharge, ejaculatory pain, hematospermia, and sexual dysfunction.

Many patients with abacterial prostatitis have emotional strife and some psychological difficulties (ie, socially, sexually, or both). Patients should be questioned with regard to their overall social adjustment. Stress level is important because stress is responsible for increased tension of the pelvic floor and the internal urinary sphincter, resulting in the symptoms of prostatitis.