Weird symptoms. Opinions please!

Male pelvic pain, prostatitis, IC
bold
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Weird symptoms. Opinions please!

Post by bold »

Hi all, I'm brand new to the forum - reading a lot of other peoples stories it sound very familiar to my own. CP/CPPS is an awful condition but it's encouraging to see and hear so many success stories of people getting past it.

I'll try and keep my story brief:
- I had the mostly stressful period of my life last year which started in February when my wife and I separated.
- About 6 weeks later I had unprotected sex with a girl I didn't know and a few days after I started to get initial symptoms, urethral burning during urination and balanitis (inflamed glans).
- Had docs suggest it was a fungal infection.
- Got an STD screening done.
- Got (aerobic and anaerobic) bacterial swabs and cultures done.
- Tested for parasitic infection.
- Tested for mycoplasma genitalium.

Meds I've taken:
- Valacyclovir (they thought it was HSV1 because it was the only positive thing on my test)
- Bactrim for 10 days
- Over-the-counter anti fungal creams, clotrimazole and miconazole
- Nystatin cream
- Flucanazole 150mg x7 doses
- More anti fungal cream, luliconazole
- Antibiotic cream
- Corticosteroid creams; hydrocortisone and pimecrolimus
- Corticosteroid pills, methylpred dosepak
- 4 weeks on Cipro.
- 4 more weeks on bactrim.
- Flomax

None of the above made a difference.

I've seen two urologists and they've both said roughly the same thing, that a 'diagnosis of exclusion' points to CP/CPPS. Now there's a few things that don't seem to add up:
- I haven't really seen anyone talk on here about balanitis/external inflammation. I've seen some folks have had issues around the meatus but my inflammation runs all over the glands and about 1cm down the shaft of my penis below that.
- The areas of inflammation are often blotchy and the quality of the skin has changed. It's generally dryer and has a more papery/wrinly texture to it.
- The smell of the glans isn't great (way worse than before this issue) and I've had phases of fairly relentless smegma production.
- The timing, I had unprotected sex and a few days later the symptoms start. I appreciate that worrying about this event could some emotional stress that could trigger CPPS but the timing seems like more than a coincidence.

Some other weird symptoms started around the same time or shortly after, about 2-3 months later I noticed hair loss which seems to be MPB, I also noticed a load of fordyce spots sprouted up on my upper lip, and my lymph nodes were swollen in my groin. I know that DHT is a primary culprit in MPB and is also implicit in sebaceous gland production (hence the fordyce spots and smegma?) and I'm wondering if that has something to do with it? I see a lot of people with CP/CPPS taking quercetin which has DHT blocking effects - maybe I'm clutching at straws but I'm trying to connect dots where possible.

My current action plan is:
- rule out infection with a QPCR test (apparently cultures can miss a lot of infections).
- get a biopsy to see what's going on with the skin
- get a cysto to check for other internal causes.

If anyone has opinions on any of this they'd be much welcomed!

Thanks all
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webslave
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Re: Weird symptoms. Opinions please!

Post by webslave »

I've seen a few cases here and elsewhere over the years with chronic balanitis resistant to all treatments. It's probably nerve related (nerves can inflame skin, just read about complex regional pain syndrome (CRPS) for instance). The suddenly overactive sebaceous glands point in the same direction (smegma, fordyce spots). DHT? Possible ... were you taking any MPB meds? Your age?
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bold
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Re: Weird symptoms. Opinions please!

Post by bold »

Thanks for coming back to me. Are you saying the overactive sebaceous glands could be nerve related? I'm 30 and haven't taken any MPB meds.
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Re: Weird symptoms. Opinions please!

Post by webslave »

CPRS (aka RSD) is not known to change sebaceous glands, but it can inflame skin, making them more prominent. So to show the power of the nervous system, see what it can do to the skin in CRPS:
  • cause swelling under the skin
  • make skin red or blue
  • make skin dry or scaly
  • cause hair to be thinner or coarser
  • make nails grow faster or slower, be brittle or ridged
  • skin may be hotter or colder than the other limb
  • increase local sweating (see how nerves are affecting a gland?)
I'm not saying you have CRPS (RSD), but I'm showing you what nerves can do.

So balanitis can be nerve related
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bonvivant
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Re: Weird symptoms. Opinions please!

Post by bonvivant »

Hi Bold, it's been a couple of years since you posted, and I don't see any other posts from you, but have you made any progress? I have very similar symptoms to yours and the path I've gone down (all of the various meds) has been shockingly the same. I've been suffering with inflammation all over the pelvis that is commonly referred to as "CPPS", but I don't have the horrible pain that people discuss. It's just a skin burning/heat sensation down there, but I do get occasional burning on the sensitive underside of my penis, along with "sticky" sweating and discomfort.

Like you said, most people don't talk about the external skin inflammation of the penis glans, shaft, pelvic area, testicles, and even down the perineum to the anus. Shiny skin on the penis, the skin almost "sweats" and burns. It points to balanitis, but I've also been circumcised since birth.

This is my first post--I need to share more details on another post, but I mainly wanted to see if you're still on the forum and if you've made any progress over the last couple of years since we've seemed to go down similar paths, but mine started at the beginning of 2019 out of nowhere. Thanks!

Admin comment: Bold was last active in 2019 and is unlikely to respond to you.
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Re: Weird symptoms. Opinions please!

Post by European »

I had somewhat similar problems on/off during last 2-3 years. My underlying condition is candida (confirmed by dermatologist), manifested mostly in groin area but couple of times also in edge of the glans. I treated it with antifugal cream and sometimes fluconazol pills. Of course, some diet modifications but the problem always comes back. I think that candida plays certain role also in my flare ups, this itchy obnoxious feeling in groin, scrotum, penis is surely fueled also by it (candida releases neurotoxins which further irritate pelvic basin).
Age: 41 | Onset Age: 36 | Symptoms: Chronic pain in the penis, groin, pubic area and pelvic muscles, mainly ischiocavernosus area | Helped By: Elavil, PT | Worsened By: Stress, ejaculation, depression | Other comments: