CPPS? If so, what next steps?

[Duracell]

Hi, an almost 2 year sufferer here following on from a high risk exposure in August 2019.

I have experienced a multitude of symptoms, but the main ones that I still have today comprise the following:

1. ED (since early 2020)
2. Yellowing of semen, and clumpy/lumpy semen. Not usual appearance or smell. Reduced volume and little ejaculatory power (although better than it was)
3. Muscle spasms in penis. Occasional during course of most days. Not the worst symptom but a bit annoying. Since October 2019.
4. Lots of fordyce spots/bumps.
5. Urine urgency. Usually at night - nowhere near as bad as it was 1 year ago, and certainly not as it was between Sep-Dec 2019 (I slept 2-3 hours per night, was suicidal and entered deep depression - convinced I had hsv at the time [no evidence to support this], diagnosed CPPS in October 2019) Sometimes discomfort during the day.
6. Burning deep within anus, usually following the passing of stools which can often lead to urgency and deep pain in what I imagine is the prostate area. Again, not as bad or as long lasting as it was previously - but still deeply uncomfortable and either only partially overcome with a walk or sitting for a long time.
7. Sometimes wake during night with pain/ache in prostate/bladder. Need to urinate.
8. Aching of urethra, usually after ejaculation which can be painful. Sometimes at other times but not often.
9. Very occasional testicular aches, usually on LH side. Had this badly in October 2019, been managable since then.
10. Occasionally wake with muscular tension in my anus, needing to pass stools - and sometimes there seems to be a sticky dampness in there (there is no reason to believe I have or ever had an infection in my anus). Symptom not as bad as it was. I do get tension in my backside on occasion during the course of the day.
11. Lichen/psoriasis type marks on one side of glans corona. Faint red and slightly circular, no more than 2-4mm across. Present since December 2019. Sex health doctor (very experienced) says circumcision scars (it definitely isn't!). Two dermatologists says probably psoriarsis and prescribed various creams, but that does not seem to help a great deal. I've since read about this being a potential inflammatory response to infection, maybe Reiters disease? I also suffer from dry eyes in the morning or occasionally sharp pains in the soles/heels of my feet (like I'm walking on pins), which I wouldn't have connected to this previously until I saw some other comments online that make similar observations.

I do take hot sitz baths, which helps a lot. I do lots of walking and occasional running, which also helps (it was not possible for the first year). I do the typical CPPS stretches as well as yoga, which helps too - but interestingly I deliberately stopped this for 5 months to test its impact and guess what... there was very little difference. Improvements continued to be gradual, perhaps my body learning to fight off an embedded infection, or just getting used to the after effects of a previous infection? I never tested positive for any infection but only because first sample was given in an out of date medium and they could not test after all- though they did say hundreds of white blood cells were present - since then I have shown some white blood cells, detritus, but no absolute sign of infection).

Have taken a lot of antibiotics in 2019 (some good [clarithromycin], whilst some did nothing for me [ofloxacine) and then again in early 2021 (augmentin - caused severe constipation and anal fissure), amitriptyline (stopped using now, but GREAT at the time for reducing urgency), tamsulosin (for 14 months, not sure I actually did anything). Lots of herbal supplements - most rubbish other than bee pollen (limited benefit) and quercetin 500mg (seems to help a bit, jury is out on that and how long I have to use it for). I have gained weight during all of this, but am careful with trigger foods.

I've tried PT with several well regarded UK providers. Mixed results. I have a Therawand which I sometimes use, it has limited benefits.

I have never had the golfball syndrome. Does that mean it isn't CPPS after all? Could it be a viral issue causing this?

What do I do now? There is scope for me to undergo another prostate massage (it was recommended - poor first sample which did show bacteria but probably commensal), MRI (could I have blocked seminal vessels and if so how to manage??), and ultrasound of prostate. No prostate readings (PSA) yet taken to best of my knowledge, so guess I should do that too.

What else can I do? If it is CPPS then I know that full recovery is possible as enough people talk about it. Or is it possible I have something else?

Perhaps I am on the right path, but if so then how much longer does it take? Can I speed up the recovery?

Working hard, trying to recover, looking for any advice. Thanks and sorry for the long post.

[webslave]

Very clear case of muscle-based UCPPS (numerous points of evidence).

I would advise you not to take antibiotics again for this condition, even if some of them give you a temporary anti-inflammatory/immunomodulatory boost.

What else can you do? Look to lifestyle changes. Something about your lifestyle is perpetuating this condition. Stressful job, computer games, OCD disorder, too much sitting, diet (gluten, spices, caffeine), excessive masturbation. For some men, there is a physical issue (dissimilar leg length, previous trauma to pelvis leaving scar tissue, lifting injury) that sets up dysfunction in the pelvic muscles, but that's rare.

And follow all the Prostatitis Tips in the FAQ subforum.

[Duracell]

Thanks for the prompt reply. I have a board level high stress job, long hours, demanding clients etc- but I've been managing that for years. I'm sure it doesn't help, but it won't be the cause of my condition.

This all started following a high risk exposure following which I was convinced I'd contracted hsv. Still no evidence of that, and I have completed as many tests as I can to try and address that. I also believe I had an infection of some kind - all of the timelines match up (8-10 days post exposure) as well as the associated pain (I caught an infection similar 20 years earlier and treated with doxcycline - and I remember the sensation that caused). Could CPPS symptoms be the remnant of infection? If so, does it ever go away? Are the techniques recommended simply nothing more than management tools designed to ease pain, rather than remove the cause?

Remnants of infection theory aside, the problem is also that if this is caused by my (unfounded) fear of hsv, then surely it should be easy to get back to normal if I just go of the stress and worry? I'm almost there with that, but nothing seems to change.

I have read that a lot of men have an infection of some kind and yet after it clears, the prostatitis or CPPS symptoms linger forever afterwards. Is this true, or can it be eradicated?

I don't play computer games, I am slightly OCD but not excessively so (although this whole episode has resulted in fear and paranoia and I had been obsessively checking myself for 18 months for signs of infection), sitting seems to calm the discomfort (I've yet to meet anyone else who states this), do not excessively masturbate (usually 2x per week maximum as per the guidelines), have not had sex with partner in years because of fear of passing an infection, fungus or virus on, I have a generally gluten free diet and eat close to vegan lifestyle (only weakness is sugar but there does not seem to be a correlation with symptoms), and I avoid spicy food and alcohol. No drinking of alcohol or carbonated/sugar drinks at all since this began!

Why is it that stopping stretching and meditation for 5 months seem to have little effect on the ongoing reduction of symptoms? It doesn't seem to make sense and suggests that something else has been causing all of this other than just tight muscles.

Passing stools creates the worst symptoms - urgency but not being able to pee properly. I completely get why that correlates with CPPS. But I do wonder if an enlarged prostate causes the same issues/pain? And I worry hugely about the marks on my glans corona - they are quite prominent and definitely were not present prior to all of this.

Sorry if this is considered off topic in any way. I'll read the tips (thanks), but I've done so much of this already with mixed results and I am at a loss as to how to end this ongoing pain and discomfort, and in particular the two ongoing symptoms referenced above.

Hoping that someone else can also relate to this and share some insight on exactly what's going on and how to resolve these symptoms for good.

[Sleeper Service]

The best thing you can do is stop worrying about residual infection. You may have had an original infection but that's long gone now. Unfortunately, any resulting inflammation and irritation can last for a long time (although very rarely permanently) afterwards for a number of reasons, which is why you should work with medics who understand the UPOINT system.

You've gotten better over the last year or so and will continue to do so as the months go by. Chill out and relax as best you can but keep yourself occupied too as the less time you have to dwell on it the better.

[webslave]

I have a board level high stress job, long hours, demanding clients etc- but I've been managing that for years.

"Past performance is no guarantee of future results" as they say in the financial world. The body ages. Immuno-senescence happens.

Could CPPS symptoms be the remnant of infection?

Not a remnant, but an aftermath. If there ever was an infection, and we can't say that there was. Certainly you thought there was one, and that's perhaps the most important factor.

If so, does it ever go away?

If your symptoms are a pain syndrome brought on by a guarding response in your pelvic floor, then yes, it can go away.

Are the techniques recommended simply nothing more than management tools designed to ease pain, rather than remove the cause?

They definitely work to remove the cause and ease pain until pain disappears. It's not a lifelong guarantee, because have a chink in your armour and it can always come back, once gone, if you replicate the situation that brought it on.

Remnants of infection theory aside, the problem is also that if this is caused by my (unfounded) fear of hsv, then surely it should be easy to get back to normal if I just go of the stress and worry? I'm almost there with that, but nothing seems to change.

Once you have started up nociplastic pain and central sensitization, it takes on a life of its own. See article on nociplastic pain in our Research forum.

Why is it that stopping stretching and meditation for 5 months seem to have little effect on the ongoing reduction of symptoms?

Again, read that article on pain. Nerves are involved, brain, spine, CNS. You have to do more to move the boat, you must lift more anchors, change more elements of your life.

And I worry hugely about the marks on my glans corona - they are quite prominent and definitely were not present prior to all of this.

Nerves again. Nerves can discolor skin, as can agglomerations of cytokines in the glans skin. I had those marks too, but they disappeared as the syndrome waned.

[Duracell]

You said that you had those marks too, but they disappeared as the syndrome waned. How long did take for these to fade? Mine I suppose are not marks, but more raised red circular patches. A bit scaly and excema like in presentation, and cover one side of the glans. I'm just surprised that this would stem from CPPS.

The other symptom I have is excess sweating in the area of the perineum. I am literally soaking through my underwear each day, even if I'm doing little movement. The pain in my anus can be immense too, and all too often I wake in the morning with what feels like a sticky substance having been released (I would say that this is sweating, but it does in fact feel more like a sticky discharge). I've not had anything enter my behind, other than a therawand, and I've not read about CPPS symptoms including this. Any thoughts on this? It is just odd.

The pain in my anus is fast becoming the most significant symptom, alongside urinary urgency. I'll recommence stretching this weekend and will read further on this website. Thanks for the input.

[webslave]

Your balanitis: Have a look at what nerves can do to skin. Google images for "complex regional pain syndrome" as an example. Once you've tried antimicrobial and antifungal creams, and the rash remains, it's something else. Try cortisone and if it improves it to any extent, you know it's not an infection.

Excess sweating points to a uptick in sympathetic nervous activity, a common cause of UCPPS.

Pain in anus is neuromuscular.

[Duracell]

...you should work with medics who understand the UPOINT system.

Thanks. What is the UPOINT system?

[Sleeper Service]

UPOINT System:

https://www.medscape.com/answers/437745 ... drome-CPPS

[Duracell]

Thanks. I worked through much of this very early on when first diagnosed - didn't realise it was called UPOINT. It didn't really help me a great deal if I'm honest, but I'll refresh and see if I've missed anything. Article isn't easy to follow, but I'll work my way through it.

I used those CPPS scoring systems too - they fluctuated and I quickly realised it was subject to what day I was being assessed. The good days were well timed by the doctors - a year later an assessment saw me back at 30+ points.

Hopefully this leads to some improvement.

[webslave]

Note, Dr Shoskes' original page on UPOINT now located here
https://ucpps.men/1/upoint.html