New here, not sure where to begin (my case)

[Wis]

Hello,

Reading through these threads its a) great to find out I'm not alone b) overwhelming and discouraging to see so many factors involved and so many possible solutions. I'm really not sure where to start and would greatly appreciate any guidance.

Here's my situation:

Symptoms (in order of discomfort)

Penis/Scrotum Surface Irritation (12 months)
The skin on entire penis and scrotum are extremely sensitive and agitated all the time. I can feel irritation in just about every hair follicule in the region. The irritation is the worst right under the glans, and visible red lines protrude downward from it. The head is discolored, an overall slight blue tinge with white patches. Any physical contact with the penis makes it flare up for long periods of time. Having sex or masturbating means it's at max irritation for 2-3 days. Ejaculation might make it somewhat worse, but it's more physical contact that causes irritation. If I abstain from any sex or masturbation the persistent irritation goes down to a base level, and then there's no more improvement. This takes about a week. This irritation makes wearing pants and walking uncomfortable just about all the time. The irritation is mostly painful, but is often itchy as well.

Groin Pain (10 months)
Pain in random places all throughout my front groin area, starting as high up as my hips and going down as far as my inner thighs. Some days I don't notice it, other days it's very painful. I haven't found any concrete triggers other than possibly stress and ejaculation (but not always).

Irritation, itchiness, and tingling in nostrils, corners of nose, and lip brow (10 months)
Who knows if this is related, but it appeared around the same time as my primary symptoms. It feels quite similar to the surface irritation on my penis/scrotum. There's even some red lines visible in my inner nostrils. It's been persistent ever since it appeared.

Tingling in feet and hands (9 months)
This has improved quite a bit and I only get it some days. When it started, it was persistent at all times for a full 2 months. It always proceeds a panic attack when I get those.

Raw / Tender Sacrum (9 months)
This is more an annoyance than a major discomfort, but thought it was prudent to mention.

The Story:

June 2011:
Broke up with girlfriend of 8 years, moved home. Started eating much healthier and began an agressive weight training regimen mostly centered around kettlebells. This is after doing very little resistance training prior in my life and being pretty out of shape (about 40 pounds overweight). This was probably not a good idea and may be a significant factor in my CPPS.

August 2011:
Had my first ever "panic attack". Came out of nowhere. Wasn't thinking about anything in particular, just driving along in my car and all the sudden my whole body started tingling and it felt like I was going to pass out. Went to E.R., they said it was probably a panic attack. Gave me some lorazepem to take if I ever felt it coming on it again. It's happened about 5 times since then, most recent one 2 weeks ago.

Also began new sexual relationship and was having a lot of sex. Sessions in excess of 30 minutes, often 2-4 times a day, 3-4 times a week. Never had that much sex in my life.

September 2011:
First signs of skin irritation on penis. Figured it was just raw from too much sex. It kept getting worse. I went to my doctor, they ran STD tests, all negative.

November 2011:
First signs of groin pain. Just felt like some tightness at first, steadily got worse and was there more often than not.

Saw a dermatologist about my penis / scrotum problem. He couldn't think of what it might be, performed a biopsy right under the glans. Terrible idea, bled like crazy and took 2 months to heal. Still a scar there now. Biopsy came back with nothing.

December 2011:
Saw a urologist about everything. He said he didn't see anything wrong with my penis/scrotum and that testicular and groin pain was very common and there wasn't much to be done except examining me with a scope internally. Said F that.

February 2012:
Saw an acupuncturist. Drank herbs, got acupuncture treatment a few times. No improvement.

June 2012:
Started seeing a soft tissue therapist once a week. She rubbed and massaged anything she felt was "tight" on my body. There's definitely a lot of sore spots all around my low back, hips, groin, butt, thighs, etc. This did seem to show some temporary relief with the groin pain. No help with the penis/scrotum irritation or anything else. I moved and am no longer seeing this therapist.

And that brings me to now. I've been reading A Headache in the Pelvis, but it seems to heavily encourage people to go to the clinic in California and I don't feel like I know what I'm doing when I try to self administer physical therapy like it recommends. My insurance won't cover the clinic and I can't afford $3,600 + travel expenses.

Some things I have been doing:

Stretching my back on a swiss ball
Just ordered a "convoluted doughnut" cushion to sit on
Walking 1-3 miles a day
Drinking fresh veggie juice once a day

I want to do some calisthenics but fear that might make things worse. Is that generally considered negative or positive for CPPS?

I work at home on a computer. I've logged many hours in front of a computer in my life.

I'm 28 years old.

Any advice would be greatly appreciated. I'm pretty depressed, which I've never been before. I'd really like to come up with an action plan to tackle this.

Thanks

[webslave]

Many of your symptoms are typical of allodynia, neuronal windup and hyperalgesia. The panic attacks of very typical of men with our condition.

Suggest paradoxical relaxation, benzo weekends, Quercetin, & sex no more than 2x a week. Give that a few months and see...

[mach5]

Beyond that, it really sounds like you know what is causing issues for you.

Ie "I work at home on a computer. I've logged many hours in front of a computer in my life."

Time to change some lifestyle habits. This is not blame, but just a matter of, your body is not built for this. If you cannot avoid some of these things, change it up. Put your computer on the floor and lay down while using it. Put it up higher and stand up while using it for a bit (stand on soft yoga mat), then back on the desk sitting for a bit. Many of us cannot quit our jobs, but we can modify them.

My suggestion is to keep walking and keep getting fresh air and sunshine. Leave the heavy exercise at the door for now.

[Wis]

Thanks very much for your replies.

Regarding the benzo weekends and Quercetin, are those intended to primarily relieve the symptoms or to fix the root of the problems? Or both? I of course want to lessen the symptoms but my primary goal is to try to address the underlying problems as much (and as soon) as possible.

Are there any stretches or feasible self administered physical therapy I could be doing?

Thanks

[webslave]

Relieving symptoms, by interrupting the noxious feedback cycle in the nervous system, does fix the root of the problem.

Yes, there are stretches you could be doing, and self therapy. Both are discussed in Wise's book and throughout these forums.

[davyboy]

Your situation sounds like its identical to mine.

Anxious disposition, compensating with heavy exercise, logging in many hours a day at the computer.

Take up light exercise, stretch, work on some external and above all RELAX!

[Wis]

The common thread does seem to be that I need to A) relax more and B) spend less time at the computer. I'm considering taking a few months off work for a long holiday, which is feasible for me.

I figure during this time I could:

Do yoga / other stretching
Stay away from the computer
Get lots of massages
Take baths
Benzo weekends
Quercetin
Paradoxical relaxation
Go on walks
Read
Meditate

Anything else I could do during my time off to maximize the healing benefits?

[webslave]

Get a book on Trigger Points and read it. Get a Theracane. Use both to hunt down any TrPts you have.

[Wis]

Those look fantastic, thanks!

[davyboy]

I know that some people on this forum say to stay away from yoga but I have found it to be hugely beneficial for me. IT TAKES TIME THOUGH!

Months and months of doing it (stretching very lightly) and deep breathing during yoga has really helped me calm down and kill some of the nerve pain. They say doing yoga and balance postures is like a massage of the nervous system. The hyper sensitivity I suffered from is slowly disappearing.

[Wis]

Good to hear davyboy. I imagine something like Iyengar yoga would be best, no? It seems to focus on slow stretching rather than more active movement and routines. I took one class once and it was like 2 hours of just breathing, meditating, and holding stretches for longer periods of time. I think that has to be beneficial.

[davyboy]

I guess it depends where you're at in terms of healing and if you're an athlete or not.

I did nearly 60 days of daily stretching (3x a day) before I started doing the yoga, so I didn't jump right in. Right now I do some flow yoga but I don't go too crazy. I like all the Warrior poses because they really open up my hips and stretch the abdomen (which seem to be my main offenders). As well I like stretching my upper half too. My PT says that I have knots and taut muscles in my shoulders that could be affecting other muscles which in turn contributes to the CPPS.

[Wis]

Update:

No real progress to report. I haven't found anything that really makes a substantial difference in symptoms other than abstaining from any kind of sex and strenuous physical activity, which keeps me at a "baseline" that I never get past.

A few questions

Trigger point therapy

Most of the pelvic TPs indicated in The Trigger Point Therapy Workbook aren't present for me. I do, however, find sore spots all over my butt and hips. None of these points ever refer pain to my problem areas or reproduce my pelvic symptoms, they only hurt locally. After doing TP therapy, the sore spots just seem to get more sore, almost to where they feel like bruises (but not visible). They don't get less sore until I stop doing TP therapy for a few days. I use a Theracane for most spots. Could I be doing this wrong?

Creeping doubt about whether I have the same root condition as most guys here

I haven't read any accounts here or elsewhere that match my genital symptoms: hypersensitivity of penis and scrotum (but especially penis), visible surface irritation on penis shaft, esp under glans, discoloration (white) of penis head, burning surface level irritation and pain in response to any friction or touching of penis regardless of whether I ejaculate or not. Has anyone ever heard of this? Could be it some other nerve problem? This problem has not changed at all (better or worse) or responded to any therapies.

The other main symptom does sound more like what other people experience: radiating pain in hips, groin, and thighs. This symptom does seem to respond to some of my therapies and I can go a whole day without experiencing this at times. Also, anything that irritates my genitals is likely to cause a flare up of these symptoms.

L5-S1 annular tear found in recent MRI

I had an MRI done of my low back last week recommended by my GP in response to having my pelvic problems for 1.5 years. The report reads:

"Degenerative disc disease L5-S1 with a broad bulge of the disc at the potential to affect S1 nerve roots. There is an annular tear which can cause pain."

"FINDINGS: The vertebra demonstrate no fracture, spondylolysis or spondylolisthesis. There is no suspicious marrow replacement. L5-S1 disc shows loss of signal and height. There is a broad annular tear in the posterior aspect of the disc bulge. There is slight flattening of the thecal sac but without significant central stenosis. The facets show no significant hypertrophic degenerative change. The foramen are not significantly compromised. Cephalad discs above L5 are normal in height and signal. There is no central or foraminal stenosis. The conus terminates with normal signal at L1-2. Paraspinous soft tissues are normal."

I'm not even sure what this means yet but all my GP said was that my options are injections and physical therapy. I don't really have back pain, maybe a somewhat tender low back. Could this S5-L1 annular tear be related to my pelvic problems, or is it a completely separate issue?

[webslave]

Could I be doing this wrong?

Yes, or the sore spots you are finding are perhaps not trigger points, but something else, such as Fibromyalgia.

Has anyone ever heard of this?

It's been reported a few times. Could be some form of balanitis, plus allodynia.

Could this S5-L1 annular tear be related to my pelvic problems, or is it a completely separate issue?

It could certainly be linked to the pain in your hips and thighs.

nerve-pain-lower-spine.jpg

[Danosu92]

Hey WIS, just wanted to let you know that I have similar symptoms, my penis is really sensitive and does have red lines, which a Dermatologist first though was Seborrhea but nothing prescribed helped. I also get pain and itching around my genitals and base that comes and goes. Like you after ejaculation I am in pretty good pain for a few days before it settles to a base. I have found that meditation really helped, I am trying any accredited quercetin product now, and internal/external trigger point release along with stretching also helps. I still have a very long way to go, and on any given day I would probably tell you that I am not better at all, but overall I feel like the pain is down to a certain level. So in short keep with it, and def. let us know what you find success with, I am trying to keep up to date with what works for me and others so I can get to a better place.