My Story. Your thoughts? CPPS or IC?

[oldmanB]

Hi everyone. I really hoped my situation would improve and I wouldn't have to make this post. I've been experiencing definite symptoms since mid-February of 2021. I had a sexual encounter at the beginning of February and I suspect the condom broke, but when it did, I pulled out and put on a new condom. I threw the old one out without really inspecting it. I've had situations in the past like this and I was always super anxious about catching AIDS. Even so far as experiencing night sweats and feeling swollen lymph nodes and going crazy with worry while I waited to do HIV tests. I decided to put it out of my mind and everything was fine for about two weeks.

At about mid-February I started noticing that I had the urge to pee more often than usual and in smaller amounts with a slightly weaker stream. I tried to ignore this but it all came to a head on March 1st. I couldn't fall asleep and spent all night peeing small amounts every 15 minutes. I went to the local STD clinic as soon as they opened and they suspected chlamydia and gave me a dose of azithromycin and ran tests for the standard STDs. My symptoms got better for 2-3 days but I still felt funny. A week after my first doctors visit I started experiencing pain and discomfort in the tip of my penis and it freaked me out so I went to the ER where they prescribed me a Rocephin shot and a week of doxycycline. I felt better again for a couple days but my symptoms didn't go away completely. Since that time I've been tested for the standard STDs, trich, MGen, Herpes, Urine Culture. I convinced myself I had caught an antibiotic resistant strain of Mycoplasma Genitalium, but everything kept coming back negative. When I was on reddit I saw a post by another user that suggested folks who kept testing negative were actually experiencing CPPS. I wasn't able to get in with a Urologist until Mid April and she diagnosed me with CPPS. My PSA and bloodwork were normal, DRE was normal, Uroflow and Bladder Scan were normal. My next steps are trying to find a PT that can give meaningful advice, Wise/Anderson Clinic in July, and a cystoscopy in a couple weeks.

What I've done:

• Azithromycin/Rocephin/Doxycycline at first
• Stretches from cureCPPS.com + belly breathing
• Daily walks/jogs
• Cut out alcohol, experimenting with diet
• Uro prescribed Alfusozin and Naproxen
• Taking Quercetin 2x daily
• Shopping around for different PTs.
• Planning on Wise/Anderson Clinic in July

My symptoms are:

1. Burning/discomfort/itch/pain in the tip of the penis (2 or 3 out of 10 at worst)
2. Pressure in my pubic bone area
3. Sometimes urine dribbles for a few minutes after I pee
4. Near-constant urge to pee which I just try to ignore
5. Peeing more often than normal (5-6 was normal, 8-10 times a day now)
6. Pain in my right testicle (for a couple days and then went away. It's been a month)
7. Can't sleep more than 4 hours. Nightmares every night. Peeing once in the middle of the night.
8. Slightly constipated. Could be due to depression/reduced appetite?

What are your thoughts? I haven't had any strange discharge, but I still have thoughts that it might be some mystery STD. I also haven't experienced the golf ball pain that lots of guys report. Everything besides the constipation seems to be on the front side. My symptoms seem to cycle. I have maybe a couple bad weeks and followed by a couple weeks where I think I'm getting better. I'm really stressed out and scared about this.

Does this sound like CPPS or IC? Does it even matter?

Would Elavil help? Would it help the nightmares and let me get good rest?

My Urologist told me that lots of guys get better, but its hard to believe her when I see all the posts on the internet about guys that NEVER get better.

[Sleeper Service]

The overwhelming majority of people with this condition get better with time and the right treatment. This has been established for a long time now. The people who don't are the exceptions, and whilst I have every sympathy for them, some of them really don't help themselves because they fixate on the reasons for their symptoms rather than accepting they have them and finding ways of managing and resolving them.

You have pretty typical CPPS from what I can tell. Read Carl's Starter List, try not to obsess over it, and focus on getting better.

[oldmanB]

Thank you for your response. It makes me feel a lot better to get that type of reassurance.

[Sleeper Service]

No problem. Read this board - there's a lot of good stuff on things to do and things to avoid (which is just as important, tbh). There have been so many advances since my first bout with this ailment back in 2006 that it's hard to keep track of current developments, but we're seeing real progress these days in the acceptance that CPPS is a multi-faceted condition which requires multi-modal treatment not just repeated and pointless antibiotic prescriptions. The great news is that outcomes are generally far better because of that, and no doubt this will continue to be the case.

You're not alone and you will get better.

[webslave]

Yes, that sounds like UCPPS, and it will get better. Yes, try Elavil, but work up from a tiny dose (use pill cutter to start off at the smallest portion you can cut, and increase dose on a weekly basis by 1-2mg).

Wise-Anderson Clinic will make a huge difference, so good decision there.

BTW, the IC or CPPS question is not very relevant to treatment, unless cystoscopy shows Hunners lesions (very unlikely).

[oldmanB]

I guess I asked because the impression I've gotten from reading through stories is that the prognosis for IC is worse than CPPS. I'm worried since my symptoms are more urinary and discomfort in the tip of the penis maybe I don't really have CPPS. Maybe I'm more just classic IC.

[webslave]

I haven't seen any proof that IC prognosis is necessarily worse than CPPS. The same strategies work for both conditions most of the time anyway.

[oldmanB]

Beyond Elavil/other antidepressants, is there any other medication I should ask my urologist about? Is valium helpful?

[webslave]

Valium can be useful during flares, but there is a high dependency risk, so if you have a tendency to become reliant on medications, avoid it.

[oldmanB]

Update. The frequency isn't really bothering me. But the pain in my penis has been worse the past week and up to 4/10 the last two days persistently. I received a one time dose of Flagyl (when I suspected Trich) but I never took it. I'm thinking about taking it tonight just in case it does something.

[webslave]

Take it and see. But note that Flagyl is an anti-inflammatory as well: https://ucpps.men/viewtopic.php?f=53&t=9339

[oldmanB]

Webslave,

This has been really hard for me. I do appreciate your responses and feedback. I think this is maybe the first thing in my life that I don't see a way out of. There are definitely members on this forum who got their lives back, but I'm afraid that I'll be laid out like this forever. I've been looking real hard for statistics on this and I can't seem to find good information for how many men get better. I've seen a study (from China) that 50% get better. Other sources say 1/3 get better in the first year. It's just scary is all...

[canada604]

I think this is maybe the first thing in my life that I don't see a way out of.

Be careful with this way of thinking it will make things worse. It’s happened to me many times. I know how scary it gets. The last few days have been pretty bad for me too.

Perhaps take the dose you have? What’s your concern about taking it?

[Sleeper Service]

Webslave,

This has been really hard for me. I do appreciate your responses and feedback. I think this is maybe the first thing in my life that I don't see a way out of. There are definitely members on this forum who got their lives back, but I'm afraid that I'll be laid out like this forever. I've been looking real hard for statistics on this and I can't seem to find good information for how many men get better. I've seen a study (from China) that 50% get better. Other sources say 1/3 get better in the first year. It's just scary is all...

Some estimate that up to half of men will have UCPPS like symptoms at some point. If half of those didn't get better then you'd have about 2 billion men with intractable prostatitis. Given that the media and message boards would be flooded if that were the case I think it's pretty safe to say that the vast majority do get better.

Research has shown that under UPOINT guided treatment 80% of men are considerably improved after 6-18 months. Given the numbers above, it is likely that most of that other 20% improved over a longer period (every bout I've had hasn't really settled down until between 18 and 24 months). There is anecdotal evidence that supports this although, regrettably, long term study of the ailment's progression is almost non-existent.

https://my.clevelandclinic.org/health/d ... rostatitis

I'm a statistician - the studies you cite are awful because the one quoting one third improvement only looks at a short period of time and the Chinese one doesn't deal with symptom duration, (for example, the 50% they quote as symptomatic may resolve their symptoms at a future point in time), and that's before we get to the sample sizes and exclusion criteria.

Take it from someone who's been where you've been and with the same symptoms, and who thought the same way, that it does get better. Sure, it may come back but then it goes again. Focus on getting better, not where you are now.

[oldmanB]

Thanks. I'll take the Flagyl tonight. I'll try and keep an open mind about the statistics. Something else that's worried me has been my physical therapy. I've had a couple sessions with two different Pelvic Floor PTs. Neither one seemed to be able to find any trigger points that replicated my symptoms. The closest I got was when my Uro started feeling my prostate (felt like I was peeing myself). Do you think I'll be a poor candidate for the W/A clinic?