My story 6 months in - input appreciated

[JuanMilo]

Thoughts appreciated, particularly on whether inflammation of testes when viewed under ultrasound is normal for CPPS.

Haven't heard that much, but keep in mind that CPPS-IC can result in nerve-mediated inflammation of any area of the lower genitourinary tract, in my experience running this forum. Bladder, urethra, prostate, penis, glans penis, meatus, epididymis, testes ... the lot.

There is another study showing increased blood flow in CPPS prostates
http://pubmed.ncbi.nlm.nih.gov/10737481

Bad - in fact at times, terrible - testicle pain was perhaps my worst symptom of CPPS in the first two years of me having this condition. I had an ultrasound of my testicles in that first couple of years and they found nothing of note. Every test I've had has turned up as 'normal' aside from one uro saying my prostate felt big for a man my age (mid twenties). Not sure why these results came up abnormal and it'd be interesting to hear from others who've had tests including ultrasounds and whether their results were normal. Extra blood flow definitely sounds like a plausible hypothesis when put like that.

[da0092]

I'm pleased to say that for now at least, my testicular pain has gone. I have a repeat ultrasound in just over a week and if my symptoms remain the same it will be interesting to know whether the visible inflammation from my last US is completely gone. I did a lot of (extra) work with stretching, internal massage with a wand, mindfulness, and generally trying to stay busy.

In my eagerness with the wand, I'm worried I may have irritated a nerve down there as I now have an almost constant urge to urinate felt mostly in the tip. I've never had any urinary issues before and so this is new territory for me. I've started taking saw palmetto as I've heard that can help. Any other suggestions for this symptom? Hopefully it has been caused by innocuously nicking a nerve and it'll settle, it's difficult to do anything too adventurous at the minute as I constantly have this tingling "I need to pee" feeling in my tip and urethra!

[webslave]

Your symptoms are morphing from pain to irritation and urge. This is not unusual. Changes in symptoms are positive, denoting progress. Just take it in your stride and it'll pass as well. Be patient.

[da0092]

For the last 3 weeks I've had a persistent and almost constant headache - with maybe one or two days where they've eased. I never normally have headaches, and so this is worrying to me. I don't think it's anything sinister, more likely some kind of persistent or chronic tension headache and I'm seeing my doctor about it. I'm not expecting advice about my headaches (unless anybody has any experience!) as I know that isn't what this forum is for.

However, what seems strange is that before this headache started, my current CPPS symptoms of testicular pain and a small bit of urgency/irritation at the tip were present. When the headaches started, these symptoms all but vanished. On the odd day that my headache eased, I started feeling mild testicular pain again. While I know that my headaches are not linked to CPPS, could there be something interesting about how the nervous system is seemingly switching where I feel my pain?

[webslave]

Headaches: feel the muscles on the side of your neck, the muscles insertions at the back of your neck, and deep inside the upper trapezius muscle area. Get someone else, someone strong, to manipulate these muscles. Any pain? This is a classic area for trigger points.

[da0092]

Thanks webslave, I'll get to work on those areas.
Having never had headaches before and then a constant one for 2-3 weeks, I'm becoming worried that it's the start of something chronic. But I suppose thinking like that isn't going to help.

[da0092]

Is it possible that this persistent headache is a side effect of the central sensitisation that CPPS has caused? Still no change in the headache after almost 4 weeks, with no previous history of headaches at all...

[webslave]

Headache is a very vague symptom with many possible causes, from food sensitivity to infections, eye strain to sinusitis, muscle tension to brain tumors, and many other causes. It's not a typical CPPS symptom, so I would take this to your local doctor again, especially because it is persistent and not responding to rest and aspirin etc.

[da0092]

It’s back

I had been doing so well. All my symptoms settled down in Summer 2017. Since then I had very occasional flare ups lasting maybe half a day, that I’d be able to resolve using the wand and stretching.

Then 2 months ago it came back in full force. Maybe I got lazy with my stretches, maybe I got stressed. Who knows. Now I’m having daily pain in my testicles, groin, and inner thigh. I’m seeing a PT and doing exercises/stretches daily but no improvement yet. Feeling despondent as thought I was past this.

[Moelicious]

Sorry to hear it

[da0092]

Does anybody else have daily testicular pain as their main symptom?

Every day I wake up with testicular pain and then it comes and goes as the day progresses. Some days it's manageable, other days it's horrible. It's been going on for 4 months now. I've been through all the usual Uro tests and everything is fine, pending semen culture results which I'm waiting on but expect to be clear. I feel like I'm doing all the right things including:

- Seeing PT
- Stretching twice daily
- Internal stretching/release with wand
- Supplements (including quercetin)
- Mindfulness/relaxation

I would have really hoped to have seen more improvement by now and am starting to get really worn down by it

Any tips?

[MrDavid]

That's me. I do deep psoas massage + stretching. It seemed to help but now I'm in a big flare and doubting everything I have been doing..

Testicle pain is in my opinion the worst pain as testicles move 24/7 in your body, you feel every movement, and it makes you sick.

Currently I'm also using CBD oil (25mg twice a day). Second day in now, so I will report if it works.

Perhaps we could compare our stretching routines and our coping strategies to see whether we can learn from eachother?

[da0092]

That sounds like a good idea. Would be interested to see how you do deep PSOAS stretch/massage.

[da0092]

Results from semen culture:

No Wbcs. Scanty Gram Positive cocci
No pathogens isolated
No N.gonorrhoeae or Candida species isolated.
No beta-haemolytic streptococci isolated.
Mycoplasma/Ureaplasma - Negative

Anything interesting in any of this, webslave?

[webslave]

No. It's what I would expect in a typical CPPS patient