From STD/infection to CPPS/CP/IC?

[ddd]

Newbie here. I notice most on this forum have been struggling for far longer than I have (only 3 months), but at this point I just feel totally hopeless…

All my symptoms started around 10 days after receiving unprotected oral sex from a prostitute. Did a full STD screen and urine culture – came back positive for ureaplasma urealyticum. Been put on three different antibiotics: doxycycline (10 days), azithromycin (10 days), moxifloxacin (21 days). Since then, culture results came back negative (both urine and semen) for ureaplasma. Waiting to do a PCR test to be absolute sure, but I think at this point it's safe to rule out infection. Despite this, what's been the most frustrating is that my symptoms remain:

Common symptoms:

- Testicle discomfort, right one only. Pain level can range from 1 to 4 out of 10. Constantly annoying/distracting. The pain sometimes shoots down all the way into my legs. Had physical checks by four doctors, all told me testes look normal, no swelling, redness, etc. But it’s painful upon touching.

- urinary dribbling: I find myself having to wipe the tip of penis multiple times after urinating. Otherwise small amounts of urine keep building at the tip (I am circumcised). I was never this "leaky" before.

Less common symptoms:

- abnormal swelling of lower abdomen, which comes and goes. This happens around the bladder region (between belly button and base of penis), although it’s hard to pinpoint whether this is the bladder or prostate (or something else). Usually accompanied by constant uncomfortable burning feeling. I don’t see this swelling issue mentioned frequently on this forum. You might say this is just my belly fat but trust me it's not - I'm really skinny (6'2 and 155 pounds) and I look like I’m like 3 months pregnant when this happens! And this is not caused by eating a lot, having lots of gas, i.e. not a GI issue. Had a DRE and urologist told me prostate feels fine, so this is leading me to think the swelling is caused by inflammation of bladder or nearby muscle.

- Balanitis: Around the same time as I developed all other symptoms, I started getting balanitis around the tip of the penis. Very strange because I am circumcised. Also, skin texture of glans started to change – on some areas the skin became more wrinkly/scaly, while in other areas became dry and skin was peeling. Inflammation overall made the entire glans look more redder than usual. Penis used to look perfectly normal before, now looks hideous to say the least. Tested for herpes 1/2, HPV genotyping, penile swab for fungus/bacteria but all came negative. Puzzling how there is no direct skin infection yet I’m getting so much skin-related issues.

I think these are the main issues for now. Really appreciate if anyone can help make sense of what might be going on, particular with regards to these less common symptoms…and for those that can relate to this, please feel free to share your story as well.

[amnesia]

Our cases seem to be quite similar. I’m pretty sure I had an infection because I had typical urethritis symptoms starting two days after unprotected sex (penile discharge and urge to pee). Doxycycline and Azithromycin didn’t help with the symptoms (I was only symptom free for c. 7-10 days after the Azithromyzin) but all tests (including several rounds of the highly sensitive PCR tests) are coming back negative. Some people (including one uro) suggest it’s residual symptoms that need time to go away. I also started to develop testicular pain.

Did you also test for Mycoplasma Genitalium using PCR test and first void urine in the morning, not earlier than 3-4 weeks after taking antibiotics? It’s an infection that cannot be cultured, and that’s known to cause persistent urethritis. The antibiotics you took are extensive and pretty much contain the first line treatment (Azithromyzin) and last line of defense (Moxi) for MG, as well as for Chlamydia and NGU in general (Doxycycline and Azithromyzin). It’s good you didn’t get the “standard prostatitis cocktail” of weeks of Levo or Cipro because those can cause an MG infection become resistant against Moxi. Unfortunately some strains of MG already became resistant against all the antibiotics you took so it’s important you test.
Trichomoniasis might be another STI that should be ruled out. It’s treated with a different antibiotic.

There’s a Reddit for Mycoplasma Genitalium where some knowledgeable people write. One mentioned that MG can cause damage and cell mutation and that it can take months to heal. He’s trying autoimmune paleo diet and other things to help the healing process. There are other users there who have shared similar stories, I.e. persistent urethritis symptoms despite negative tests.

Regarding the swollen belly, you may want to research about IC. I read it’s a quite common symptom of people who have IC (“IC belly”).

I wish I could help you but I’m facing the same situation as you trying to figure out what’s going on and how to help it. I don’t know whether I had Mgen or something else; I only started testing after the antibiotics treatment failed to help with the symptoms. The only thing I’m pretty sure is that it was an initial infection that led to this.

Once you have ruled out an infection, I think it’s really trial-and-error of trying different things to see what helps. Forum likes this provide lots of information, but it’ll come down to finding your own regime that works for you.

I have currently removed caffeine, alcohol, sodas, and spicy food from my diet because it’s know to irritate the bladder. I’m trying to drink plenty of fluids throughout the day and found camomile tea to help a lot. Football/Cardio also seems to be helping, and I hope I can work on my diet.

[webslave]

Infections are well known to be triggers for CPPS. The swelling can be IC, as Amnesia states, or IBS (if you are also having constipation or diarrhea issues.) Painful testes, discoloured glans are neurological symptoms. Search the forum; you'll find it discussed.

[sopalegumens]

How did you test for hpv? I thought for guys was only possible to test if we have warts. Was it via biopsy?

My penis skin also changed but I had a yeast infection when this all started. However skin is still very dry.

[NeoKortex88]

Mine also started with oral from prostitute even though I had bad pain and ED on top of it. I also had skin changes in penis. It was scary. I think it’s from less blood supply getting to your genitals

[ddd]

Thanks all for the responses.

Webslave - newbie here but I find it interesting that you think the painful testes could be a neurological symptom. Was wondering the rationale behind this? I would imagine if it's a neurological problem then the pain would be a generalized one where it's hard to pinpoint the specific origin (i. e. around the scrotal area). But in my case it's clear the pain is in my right testes and it's confirmed by when I apply pressure my left testis feels normal while the right one is much more sensitive and produce pain even with the smallest pressure.

Amnesia - 10 days after exposure I did PCR testing for UU, UP, and MG along with CT, NG, Trich and was tested UU positive. Put on 10 days of doxy (200mg daily) and azithromycin (500mg daily) which I took at the same time for 10 days. 11 days after finishing azithromycin and doxy I did mycoplasma culture test (which includes UU, UP, and MH but not MG) for both urine and semen and was negative. Then was put on moxifloxacin for 21 days after complaining to my doctor about persistent symptoms. 12 days after finishing moxifloxacin I did another urine PCR and culture test for UU only, and currently waiting for results. Will update once I get the results. I think I will be ready to drop the infection angle once I obtain negative PCR for this one (but given my worrying nature I might repeat another one in 2 weeks just to be completely safe...).

[webslave]

CPPS pain is frequently one sided, and this can apply to testes too. Nerve pain is unpredictable that way.

[ddd]

sopalegumens - around 2 months after my unprotected exposure I actually had wart/pimple like growths (3 of them) develop on the underside of my glans, the area between the glans and the shaft. It didn't look like a traditional HPV wart but went to get checked anyhow. Doctor did some swabbing around the area and did a HPV DNA test that checks for 29 types of strains including all the high/higher risk ones. Tested negative for all. Later concluded that the growths were located right above the circumcision suture marks where skin was probably damaged and irritated to begin with, and as a result of inflammation underneath the skin has resulted in some abnormal response.

NeoKortex - Skin changes in my penis scared the crap out of me to be honest. I had no clue what was causing it and everyday something seemed to be going on down there. None of the swab tests detected anything (bacteria, fungus, HPV) and believe it or not I had days where I was paranoid that the prostitute gave me some kind of penile mutating virus that's yet unknown to humanity or something crazy like that. Right now it seems the worst has already gone, skin peeling and inflammation has gone down however red spots (balanitis) is persistent and I don't know if it will ever go away. What
kind of skin changes did you experience? And did it go away over time?

***

Another general question...we've seen in plenty of cases of CPPS/CP/IC triggered by initial infection such as STD, symptoms can linger for a long time even after the initial infection has been cleared by antibiotics. Why is it the case that healing process in the genitourinary area (urethra, bladder, testes, etc.) is so slow? We see people continue to experience issues even 1, 2, 3, or many years after their initial episode. Seems strange given injury or inflammatory response in many other areas of the body seem to clear up in a much shorter period of time - we're talking about days or weeks. Hard to understand why the healing process is so slow for those of us with residual inflammation down there, especially in the absence of bacteria/infections...Any insights would be appreciated!

[NeoKortex88]

I thought I had super AIDS at one point because of a online forum with a lot irrational people who had probably CPPS but all were convinced they had a new Chinese made super AIDS which couldn’t be discovered with tests yet. Luckily only took me 2 days to dismiss this but when you have 8/10 pain and doctors don’t know shit you take anything to understand what’s happening. We are in good company ;)

[webslave]

Why is it the case that the genitourinary healing process/response rate is so slow? We see people continue to experience issues even 1, 2, 3, or many years after their initial episode.

Or 20 years.

Number of factors in play here. Muscle spasm the obvious one, but some men don't have it. The other is upregulation of nervous system, which is self-sustaining. Allodynia, hyperalgesia, which can be reversed by relaxation, quercetin, some medications, various mental strategies (the opposite of catastrophising), massage, heat etc.

Reversal is not always 100%, but usually enough to allow normal life to proceed.

[ddd]

NeoKortex - you said you developed penis skin problems as well. What were they? And did they go away with time?

[ddd]

Webslave - thanks again for the insight.

Given the many doctor visits, my cabinet now looks like a small pharmacy...In particular, I was wondering if you or anybody else have thoughts regarding (1) anti-inflammatory medication (NSAIDS/COX inhibitors), and (2) nerve related medication such as Lyrica.

They are just sitting in the cabinet and I haven't taken any of these because I get a sense that they are just short term pain relief. Am I wrong about this? Is there any chance these medications, when taken for a period of time (say 2-4 weeks) can actually help permanently reverse inflammatory or nerve related issues and result in long-term symptom relief? Or are they only helpful while you are taking them. It seems to me that trading my liver/kidney/heart health for short term pain relief is not the way to go about managing this condition, but I should instead focus more on holistic, long-term ways to combat this through nutrition, exercise, etc.

[amnesia]

@ddd:

So the first PCR test was before you took antibiotics? And you used first void urine of the day? If so, then I think you could forget about MG (as well as Trich and all the rest) which is good because what I read about MG is not nice.

Not sure how early you can have a test of cure for UU again (ie. how soon after antibiotics treatment you can test). I know for MG it’s critical to test not earlier than 3-4 weeks after the antibiotics treatment. Anyway, I heard MG can be difficult to eradicate, never read that about UU. Do another test for peace of mind and then move on from the infection. I know it’s difficult; I’m in the same situation. But the antibiotics you took really are extensive, and with the PCR tests and cultures all negative I think it’s fair to assume that there’s no infection anymore. That doesn’t help with the symptoms, but it’s good. Think of all the guys who caught resistant strains of MG or Gon.

[amnesia]

@ddd:

I’m not a doctor or expert on this, but what I understand based on my own research:

1. Inflammation is part of the body‘s healing process. NSAID block this process so you don’t feel pain.
2. Long-Term use of NSAIDs can potentially be bad for your stomach.

I personally decided against taking them. I don’t have much pain to be honest. Main symptoms for me are now discharge in the morning and urge to pee.

I decided to give this another three months during which I will try various home remedies such as supplements, diet change, sport, and just hoping it will fade. I will also measure my water intake and urine output as I was asked by a diabetes doc. If things aren’t better in another three months I might go for a cystoscopy.

[webslave]

I was wondering if you or anybody else have thoughts regarding (1) anti-inflammatory medication (NSAIDS/COX inhibitors), and (2) nerve related medication such as Lyrica.

I can only advise you to search the forum and read the experience of other patients. I do know that neither NSAIDs or Lyrica have been cited as breakthroughs by many (if any).