New member

[BedBug]

Before I introduce myself, I want to say that I am so thankful that this site exists, and I also want to applaud the courage of the many contributors who persist in the face of such a disruptive condition and generously share their experiences with others.

I'm a 60+ male who was in general good health. I worked out regularly, walked three miles daily in our hilly neighborhood, and rarely missed a day of work. I was looking forward to retiring at the end of June, traveling with my wife, working on our house and garden, and enjoying my hobbies.

In contrast to my expectations of using some of my leave to prepare for retirement, I was given additional tasks (which I should have declined), worked many additional hours (sitting), and neglected my physical maintenance routine. The second week of June, I stood up after working at my computer for several hours. My right scrotum and testicle were numb. I walked around for a while, and most of the sensation returned. It still felt funny the next morning, so I saw my primary care physician.

He diagnosed me with epidymitis, from which I had experienced similar symptoms several years previously (minus the numbness), two weeks of antibiotics and painkillers, and I continued working.

After two weeks, it was still uncomfortable to wear trousers. I was given a three week course of another antibiotic, Ciprofloxacin, and had testicular and abdominal sonograms (both negative). The discomfort continued, along with pain in the right perineum. I mostly stayed at home, frequently laying down. I researched potential causes for my condition, including PN/PNE.

I went back to my PCP. A blood test revealed abnormally high lever enzymes, probably from the medications, so I was put on oral steroids (prednisone). Surprisingly, my pain symptoms diminished considerably after this treatment, but my doctor did not wish to prolong my prescription. I received a referral to a urologist, who gave me a rather aggressive digital exam, dismissed my suggestion of PN, and gave me a prescription for Uroxatral to relax the pelvic floor muscles. After the exam, I experienced extreme burning pain in the rectum, which I hadn't felt previously. The pain increased greatly after ejaculation, my first since June because of the epididymitis diagnosis.

The Uroxatral may have helped ease the discomfort a little, but constipation became a problem so I stopped it. I went to a physical,therapist, who did an internal pelvic massage and gave me some home exercises. Initially, my scrotal/perineal discomfort disappeared, but then the right front side of the pelvis, medial from the iliac crest, became numb. Very scary! Two days later sensation returned to this area. I thought (hoped) this might be an indication of potential healing. Following my last session with the PT, pain increased in the anal/rectal area, and I got a mild superficial tingling on the lower right buttock, which increased to a deep intense burning at the ischial tuberosity. Pain persists at this site, along with anal pain and scrotal sensitivity.

I revisited my urologist, who agreed it was probably a damaged nerve, and suggested Neurontin and a visit to a neurologist.
That will be my next step.

Questions:

1. I could find no reference for the use of oral steroids to help treat neuralgia/neuropathy. Although they have all kinds of issues, injected steroids don't seem to have had much success, and the potential for nerve damage during their administration is a risk. Has anyone heard anything?

2. Do areas of pain/discomfort commonly shift to the degree that I've described? Does this sound like PN or PNE?

3. If it is PN with no entrapment, can the nerves heal over time, or is this unlikely due to mutual interactions with pelvic floor muscles, constipation, general stress levels, etc.?

4. If it is entrapment, can the areas affected help identify the locality of the site? Or is a Potter MRI essential?

5. If it is PNE, are there any exercises, other than walking, that can safely maintain muscle tone without incurring additional nerve damage? I can't wear trunks, so swimming is out . . .

6. What is the least disturbing solution to constipation? It is slowly getting worse, despite a high fiber diet and stool softeners.

Thank you.

[Violet M]

Questions:

1. I could find no reference for the use of oral steroids to help treat neuralgia/neuropathy. Although they have all kinds of issues, injected steroids don't seem to have had much success, and the potential for nerve damage during their administration is a risk. Has anyone heard anything?

I didn't use an oral steroid but when I first started having pain my doc misdiagnosed me with hemorrhoids and put me on a rectal steroid suppository which helped temporarily. I guess it makes sense because steroids decrease inflammation.

2. Do areas of pain/discomfort commonly shift to the degree that I've described? Does this sound like PN or PNE?

I've read a lot of posts where people say the areas of pain shifted. Areas of pain shifted for me.

3. If it is PN with no entrapment, can the nerves heal over time, or is this unlikely due to mutual interactions with pelvic floor muscles, constipation, general stress levels, etc.?

It's hard to predict. Some people heal but some don't and it may depend on whether you find treatments that help.

4. If it is entrapment, can the areas affected help identify the locality of the site? Or is a Potter MRI essential?

I don't know of any diagnostic test that can tell you with 100% accuracy where an entrapment is. MRI's are not proven to be completely accurate for a diagnosis of entrapment or location of entrapment.

5. If it is PNE, are there any exercises, other than walking, that can safely maintain muscle tone without incurring additional nerve damage? I can't wear trunks, so swimming is out . . .

I don't know of any but maybe someone else can help you here.

6. What is the least disturbing solution to constipation? It is slowly getting worse, despite a high fiber diet and stool softeners.

Stool softeners never worked for me. I use magnesium citrate tablets on a regular basis.

Here are some things that other people have posted on the forum over the years:

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Mirilax (Rx)

2-3 colace

1-2 tablespoons flax oil mixed with a small amt. of 100% grape juice. You can swallow anything if you mix it with grape juice! I think the flax oil is most effective.

Prune juice (100% prune juice...not the watered down stuff!)

Organic Whole Grain High Fiber Hot Cereal with Flaxseed (it has 10 grams of fiber per serving). This works great. I just add honey and its tasty.

eating black eyed peas. Drinking lots of water with it helps.

Psyllium husk. You just add it to a drink. I got the powder kind. Its pretty nasty so I don't do this one often. I'd recommend getting it in pill form.

Super Cleanse for your colon (its a natural laxative..it doesnt give you cramps). I got it from Whole Foods. This worked wonders for weeks but now it just helps. I take it a few times a week.

Magnesium citrate tablets taken on a regular basis. I have to eat a high fiber diet and take 400 mg of mag-citrate twice a day or I run into problems.

Lactulose

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Here's a thread on constipation that might be helpful. http://www.pudendalhope.info/forum/view ... nstipation

Violet

[BedBug]

Thank you Violet for your very helpful answers!

David