New Here (aazzone in UK)

[aazzone]

Hi,
I am new here and this is my story. I live in the UK.

In 2000 when I had my first job, I suffered from I believe depression and at the end of a long period of training I started having excruciating pain on the testicles and glans redness. It lasted for 12 months. Seen several doctor but without any clue.

In 2015 I noticed a ring on my glans followed by testicle pains. GUM clinic though it was thrush and gave me steroid cream. It lasted 8 months. I dint see any doctor this time beside the GUM clinic.

At this point I still didn't know what CPPS or prostatitis was.

This year in July during a trip to the South East I was on a very stressful project. After a couple of weeks upon my return I started experiencing redness in the glans and pain in the testicles. The glans looked pretty gross with some "wrinkles" at the opening. GUM clinic didn't find anything. I did an extended STD test that detected ureaplasma but both my physician and urologist don't think much of it. Urine culture, urine stick, cystoscopy, flow studies, ultrasound all negative. Still MRI to do and I am looking for a 4 glass Meares-Stamey test. Urologist wants me to go through a 4-6 weeks antibiotics but I also suffer of ulcerative colitis and I am really hesitant to do it without any evidence of bacterial infection and could really screw me over.

Been pretty hard to sleep and to concentrate at work. The weird thing is that any burning pain in glans and back of testicles has largely gone, while the redness only appear when I ejaculate but has been largely replaced by a cold sensation in the back of my testicles and penis. This appear mostly when I sit or lay down, goes straight to my brain and make me feel unwell like if I have a flu or something. Sometimes I feel really down.

What do you guys think of it? CPPS ?

At the moment I am taking Quercetin, doing meditation, reading "An headache in the pelvis" and looking for a pelvic pain PT. I know it will go away eventually but I wish it wasn't so bloody hard.

[webslave]

Are you taking any medications for the UC?

The fact that your symptoms come on in times of stress and mental tension associated with new jobs and difficult projects means that yes, this is CPPS. MRIs and Meares-Stamey are pretty pointless. Avoid antibiotics.

[aazzone]

I do, I take Pentasa (mesalazine).

I know they are pointless but I think mentally I dont want to leave any stone unturned I guess. And no, I definitely dont want to awake my UC with a massive dose of antibiotics.

[aazzone]

I have another question, since this thing started my meatus has got all wrinkly and it gets quite inflamed during sex or masturbation. Is it still a potential symptom of CPPS or shall I see a dermatologist?

I went to a pelvic pain specialist PT and she said my pelvic floor is very tense and would benefit to use a wand after having had a through internal examination. Also she recommended some triple lift of the pelvic floor (pull 3 times and then release) to facilitate relaxation, I have to say I find it quite counter intuitive but it appears to be some science behind it.

[webslave]

Tensing and then relaxing is not a good idea. That's derived from kegels for women, and not useful for men with CPPS.

Red and swollen meatus is simply a sign of irritation and inflammation, common in men with CPPS, and not important in itself.

[aazzone]

It is called progressive muscle relaxation I think. I seems to be different from kegels. Anyway, as long as it is not detrimental... Has anyone got it recommended by their PT as well?

https://www.pelvicpain.org.au/for-men/p ... n-for-men/

[aazzone]

Here is my update.

Done MRI, and still unremarkable. Still in the pipeline to do a Stamey test and see a dermatologist to have a look at my glans and meatus. I am pretty convinced, I have CPPS but want to rule out all the other possibilities.

I have started doing internal PT and meditation is helping a lot in keeping my mind in check. Also got a wand and as soon as the kids are back at school will have a go. Also planning to start some CBT as my energy level is pretty low and I think this is due to anxiety rather than physical.

Ah and light therapy as the weather is horrendous here at the moment.

[aazzone]

Hey,
my discomfort has gone better overall on both penis and groin. I can now concentrate on work and ejaculation does not make my glans look like a tomato as much as before.

My main problem is that I feel very tired most of the times, have problem with sleep every other night and have more often than not some lightheadedness (e.g. need to be careful with eye movement or can get dizzy). I am going to travel to the US this Saturday (east coast luckily) for work and I am quite worried jet lag is going to kill me

Has anyone had some experience like this or can advise? What is it? Depression, fatigue or some weird physical nerve problem?

[cam3roni]

For me it was depression / anxiety that led to fatigue. As I stopped caring so much about my affliction, my energy returned.

[webslave]

Constant tiredness could be CFS, which is often comorbid with CPPS. Dizziness can be a CFS symptom.

[aazzone]

For me it was depression / anxiety that led to fatigue. As I stopped caring so much about my affliction, my energy returned.

Yeah, I am following the same principle and had been able to go out a couple of evenings without the overwhelming need to hide under a table and diseapper

[aazzone]

Hey want to share an update. Overall I think pain has gone down over time but even if dull it still brings my mental health to its knees. Also I often have tingling in the legs and feet that is quite disturbing.

My main problem is sleep. When I go to bed my breath gets really fatigued (anxiety kicks in), often I cannot fall asleep and even if I fall asleep, often I wake up a few hours later with hot groin and legs. Could it be severe anxiety?

I have started CBT and I am now considering antidepressant. Sometimes I feel like I am losing my mind honestly.

[webslave]

Poor sleep / insomnia can be a symptom of depression. Anxiety and depression are linked. Taking an antidepressant is a worthwhile experiment.

[aazzone]

Here is an update from me. I started on Zoloft as I think lots of the symptoms I have may be related to severe anxiety (dizziness, sleep disruption, tingling, numbness in hands at night, etc.)

My main problem, beside sleep that seems to be slightly better, is that after a while sitting I start to feel unwell, get sweaty, hot, and dizzy. This precedes any real discomfort I may have.

Has anyone have this? Still anxiety or some weird neurological reasons?

[webslave]

Always give antidepressants a few weeks for the side effects to wear off. Often they fade away.