CPPS symptoms after unprotected sex

[Redub]

So, I just read all 8 pages of this thread after seeing the post about frequency/urgency (I have been misusing urgency as well). Any reason why physical therapy (even self-physical therapy like in A Headache in the Pelvis) hasn't been looked into?

As far as something stronger that is also 'natural' might be valerian root tea (or capsules). I think it's actually used in the production of valium. Fair warning: the stuff smells RANK. After that you are looking at prescription meds (assuming your exotic country requires prescription for those types of meds).

It might be worth talking to a mental health professional of some sort even if it's just for an assessment. Ain't no shame in having an anxiety disorder. For most people it's treatable either through medicine or, IMO ideally, through some sort of therapy like CBT (Cognitive behavior therapy).

[amnesia]

@ Redub: Thanks for the response. I wouldn’t mind seeing a mental health professional. The problem is that where I live, these doctors and therapies are rare; language barrier is another problem. The same applies for physical therapy. Doctors here are great at mainstream stuff, including all sorts of surgeries. The only thing I’ve started is yoga.

[amnesia]

A quick update:

I am on vacation at the moment and generally feel better. At the beginning of my trip, I had three consecutive days where I didn’t have any frequency during daytime but felt completely normal. Only symptoms left were penile discharge and nocturia (and some nights were worse with having to get up 2-3 times).

It is baffling how there can be days where I drink fluids throughout the whole day but only have to go pee once in the evening (which is pretty much how things used to be before all this), and then there are those days with frequency where I even have to pee without drinking much (such as once during the night, then again in the morning and then again some hours after, while not drinking in between). How is it even possible that there is urine without water intake?

After those awesome three days I had bad day with all the itching and pressure back in the penis, and am now back to having slight frequency during the day, having to get up once during the night and then again after waking up, and slightly worse discharge (there are more mornings now when there’s a big drop of clear sticky discharge in the tip of the penis).

Overall I feel better than before, but I’m not sure whether that’s just because of the vacation feeling, of walking more during the day, or maybe even because of the cold weather here (maybe it’s helping with the inflammation same as a pack of ice helps with a swollen ankle). Could the three good days in the beginning be a result of the Xanax that I took to sleep on the flight? Can that last for three days?

I’ve also reached out to doctors here and have some appointments scheduled while I’m here.

[webslave]

If you had an infection, you would not have good days and bad days as you describe. That's much more typical of a somatization disorder.

Feeling better during a vacation is typical of CPPS patients.

[amnesia]

If you had an infection, you would not have good days and bad days as you describe. That's much more typical of a somatization disorder.

I tend to think / hope so too. I thought having good days could mean that my body is slowly getting back into his normal state. But then I don’t know whether it was just due to the Xanax.

What’s really freaking me out is the discharge. This morning again I had a big drop of clear, sticky fluid coming out of the penis. Even though it’s not uncomfortable or painful, it’s the one symptom that keeps making me worry about an infection. I never had any sort of discharge, only when I had an STI, and it seems every online resource thinks penile discharge is a clear cut sign of an infection. I hope some of the urologists I’ll see during my vacation do have an answer what this can be.

In that regard, can a somatization disorder cause actual visible symptoms such as discharge? I thought it’s more related to feelings and dramatizing or experiencing certain feelings such as pain differently or more strongly.

[webslave]

Don't forget that your mind can cause inflammation in your body, even indirectly, and inflammation can cause swelling, retained secretions, which later emerge as "discharge" (more like "leakage").

Somatization disorder → abnormal pelvic tension → inflammation at nerve endings → neuronal windup → pain symptoms, other physical symptoms (discharge/leakage)

[amnesia]

Thanks, webslave. It doesn’t really help having an ID doc suggesting to try Moxi because he suspects a Mycoplasma Genitalium infection but cannot explain how 7 PCR tests could potentially all be false negatives. Maybe I should stop seeing doctors altogether.

Anyway, Happy New Year to everyone!

[amnesia]

Another day, another doc, another opinion.

ID #3: see post before

ID #4: In contradiction with ID doc #3, he thought it could only be Gonnorhea given that I developed discharge 1.5-2 days after the unprotected sex. He said only Gonnorhea can have a short incubation time and that the color of the discharge doesn’t necessarily have to be white and creamy but can in fact be colorless or offwhite. So he thought I should get the IV shot in combination with 1g Azithromyzin; apparently it’s important that both are taken together and since I wasn’t treated with this he thought it might be worth a try. Maybe the single dose Azithromyzin lowered the bacterial count so far that it doesn’t show up on tests he thought; however, he also had to admit that this theory was highly unlikely to near impossible given all the tests I went through. In the end, we decided against it.

He then mentioned other causes of urethritis and suggested I could (also empirically) try antivirals for herpes infection or otherwise do an MRI using some contrast dye to check for any non-infectious reasons.

Other than that he suggested to drink enough water but also had to admit that 4+ months are too long for residual symptoms.

Uro #3: Also saw another uro here in Europe. She didn’t wanna do all the tests again; thought it’d be wasted money. She also thought I shouldn’t just take random antibiotics. Scheduled another appointment together with a dermatologist which I will do tomorrow.

Independently from ID #4, she also suggested I should do an MRI. She said it’d be preferred over a cystoscopy because it’d give the same outcome but be less intrusive. I asked whether my issues could be prostate related and she said it’s something that should show up on the MRI.

She didn’t think herpes could be a likely cause. She thought I’d have to have visible herpes sores and probably couldn’t pee without terrible pain.

While she agreed urethritis can take time to heal, she thought it cannot be this long. Other than that, she also didn’t have any explanations and was as baffled as the other docs. She didn’t mention anything about prostatitis, IC, or CPPS.

###

Question: Does anyone have experience with MRI using contrast dye? Uro #3 said it doesn’t hurt; the contrast dye will simply be given through a vein.

[WS1234]

I've had an MRI with contrast dye. It was no big deal and a cake walk compared to a cysto. Assuming its covered by insurance or public health coverage, no harm in getting the MRI done.

[amnesia]

In a completely new twist to my story, I was tested positive for Gonorrhoea now. I'm quite shocked.

I was on the way home from Uro #4 and Derma #1 (see below for completeness) when I received an email from ID #4's office saying they have received lab results and I should call or visit because they'd like to start antibiotic treatment. I couldn't reach anyone so called the doc directly. He was as surprised as I was; we had just talked in the morning when he told me that their swab culture test for Neisseria gonorrhoeae (NG) was negative and he could only suggest to do an MRI now (or accept that sometimes a cause isn't found).

He promised to check what that email was all about and called me back shortly after. It seems the PCR test I did through ID#3 came back positive for NG (I had issued ID#4 written permission to request my results from the lab).

He sent me to a hospital where he had arranged for an IV infusion of 2g Ceftriaxone and 1. 5g Azithromyzin orally. Apparently the doctor there is the country's ID specialist for NG.

On the way there, I had to double-check with him whether the test really came back positive for NG and not maybe Mgen. I did the test through ID#3 who ruled out NG, CT, and Trich (and it all sounded logical to me) and thought it could only possibly be Mycoplasma (or Ureaplasma maybe). I didn't even think that we ordered a test for NG; I could only recall that we ordered another test for Mycoplasma and Ureaplasma. In fact, the reason why I visited more ID docs in Europe was because I wanted to test for Mycoplasma genitalium (Mgen) using different assays. Until now, I was focused on Mgen being the most likely culprit that could cause my symptoms and slip through the tests (given how difficult it is to test for). Apparently the PCR test included everything (but I haven't received the documents yet).

I asked the doctor on duty in the hospital how it could possibly be that all my tests were false negatives and the only idea she had was that the bacterial load was so low that it slipped through the threshold of the tests. She said the standard treatment for NG is Ceftriaxone as an injection and Azithromyzin orally given at the same time, so maybe the fact that I only took Azithromyzin orally eradicated some but not all bacteria.

I'm carefully hopeful now but I also have some doubts and worries:

1. That the test was a false positive; given all my negative tests it would be statistically more likely that this one is a false positive rather than all the other false negatives;
2. That the test was actually positive for Mgen rather than NG and someone really confused things (I don't hope they really messed up big times like this);
3. That the test was actually positive for NG but I have picked up a resistant strain (or caused resistance myself through incorrect antibiotics);
4. That my situation/symptoms will not change after the antibiotics and I don't know what's going on but will be even more confused, I. e. not knowing whether it was a false positive or a resistant strain.

I'm now two days after the antibiotics and am not feeling much improvement. If anything, I had a bad flare on the flight back from Europe.

---

Uro #4 is head of urology and specializing in prostate issues. So I thought it might be worth getting his opinion as well. In contradiction with ID#4, thinks it cannot be Gonnorhea because of the incubation time and color of discharge.

Takes PSA value from blood; does DRE; ultrasound of bladder and prostate before and after urination; ultrasound of testicles. Says everything looks fine. Thinks it could be Prostatitis and says he would (“pragmatically”) shoot with a broadband antibiotic at it, 2 weeks of Levo, just as a last resort. Doesn't have any other suggestions. Says I should watch my urine stream whether it gets weaker. Mentions psychosomatic causes but doubts it could be that given visible symptoms (discharge).

Derma #1 (with uro #3 attending as well) checks my penis but doesn't find anything. Says I should test for herpes; though rare, she has seen cases of herpes sores inside the urethra without any visible sores on the outside. Both agree I shouldn't blindly take antibiotics. They doubt the tests could be false negatives given the sheer amount and how strictly I followed the correct protocol (both were amazed of the knowledge I had and asked whether I'm a doctor myself). Only the semen culture she suggests I should take again after hearing that I had masturbated the night before.

[webslave]

Mentions psychosomatic causes but doubts it could be that given visible symptoms (discharge).

I did tell you how the brain can cause physical symptoms via the nervous system and mast cells.

You seem determined to follow the infection rabbit down hole after hole. This never works in CPPS and suggests a negative prognostic outlook for you.

[paolotrepiccione]

Please listen to webslave on this one. Infection rabbit holes are deep, dark and dangerous. Stop following it and focus on improving your mental wellbeing. Infections don't have off days, the fact that it comes and goes depending on what you are doing should be the most telling sign. My CPPS flares up after any sexual encounter because of my anxiety and is consistently worse while I am at work because I hate my fucking job. The mind and related nervous systems are your biggest enemy.

[Avyar]

I had also suddenly after months a positive PCR for NG even though I received IV and Azithromycin already, then I received it a second time but it didn’t do anything. I think PCR can be sometimes over-sensitive.

You need to stop chasing infection at one point or it makes you insane..

[amnesia]

So the antibiotics don't seem to work. Means it was either a false positive or I have caught a resistant strain. Very frustrating and worrying.

I chatted with ID#4 today (I'm not in Europe anymore but he's very helpful through WhatsApp). The PCR-test I did through his office was negative again (just two days after the positive one). This could in fact mean it was a false positive (7 negative tests first over several weeks, then 1 positive test, followed by another negative test just two days after). He mentioned there are other Neisseria-bacteria that are not pathogens but that can influence such test. He's still waiting for the culture results.

@ paolotrepiccione:

Infections don't have off days, the fact that it comes and goes depending on what you are doing should be the most telling sign.

I wish there were off days. I had three days without frequency during the day; all the other symptoms were still there (discharge and nocturia). And those three days without frequency were after taking Xanax, which can cause decreased frequency.

@ Avyar:

I had also suddenly after months a positive PCR for NG even though I received IV and Azithromycin already, then I received it a second time but it didn't do anything. I think PCR can be sometimes over-sensitive.

Did you test negative after? That would give me some hope that false positives can happen.

[webslave]

This could in fact mean it was a false positive (7 negative tests first over several weeks, then 1 positive test, followed by another negative test just two days after).

Definitely false positive, it happens.