New member, unpleasant situation, looking for feedback

[linearb]

Hello, I'm a 34 year old male.

Relevant background: I am not a stranger to CPPS -- about 10 years ago, when I went off benzo drugs (which I'd taken for quite a while for anxiety / tinnitus), I developed the "golfball in the butt" sensation, and took Cipro for a month (without effect) before I more or less diagnosed myself with CPPS, found a physiotherapist who did internal work, and basically recovered over a ~6 month period. Since then I have experienced some pain/burning after sex, but nothing that's lasted more than a few hours.

Two weekends ago, I had unprotected sex (with my wife and long-time monogamous partner) for the first time in quite a while, as she had been off birth control and we'd mostly been using condoms for quite a while. There were no immediate problems.

Last weekend, two things happened:

1. I took the anti-seizure drug Potiga for a total of 2 days, in an effort to see if it would help my tinnitus (it did). This was on Saturday and Sunday. Potiga is known to cause bladder problems, specifically difficulty voiding, but in general those effects show up after long-term/high-dose exposure (and I only took it for 2 days, at the lowest dose).
2. On Sunday, I received (unprotected) oral sex from my wife. At the moment before orgasm, I was aware that she was going "too fast", and tried to slow her down, but I wasn't forceful about it and ended up climaxing at a "different rate" than she was moving. There wasn't any pain or immediate sense that anything was wrong, other than my orgasm was not very pleasurable.

Over the day on Sunday, I became aware of a "trickle" or prickling sensation in my urethra, as if a small BB was lodged in it. I became concerned that the Potiga might be doing something bad to me, and immediately discontinued it. (I did seem to be having some slight trouble voiding, as well).

Since then, the last week has been absolutely miserable, because I have had this "something stuck in my urethra" sensation pretty much constantly. Sometimes it burns/stings when I pee, though in general urination relieves the discomfort very temporarily to some slight degree. In addition to the foreign body sensation, my urethra feels "wet" and a little stingy, as if there's urine stuck in it.

I saw a urologist who said my urine had no WBC / signs of UTI, and that my prostate does not feel enlarged. He gave me a prescription for Flomax, and also said that he has seen a number of patients who seem to get these symptoms from muscle problems.

My primary care doctor took a urine sample, which was also clear on the instant test, but which has been sent off to culture to look for ureaplasma / mycoplasma organisms (I don't have the results yet). She recommended that I take the Flomax for 2 days, and if it did not help, then try taking AZO for a couple days, and follow up with her next week.

The Flomax did not seem to help; I've taken the AZO twice today, and it may be turning down the intensity of the burning by a little bit.

So, I cannot tell if I'm experiencing:

1. a new manifestion of CPPS triggered by the sexual activity -- though, I have had "bad" orgasms like this a good number of times over the years, and it's never provoked symptoms which last more than a few hours
2. an extremely unusual reaction to the small amount of Potiga that I took
3. an NGU or other atypical STI from the vaginal/oral sex over the past week

My PCP has said that I could try taking Cipro for a week, but she's not super enthusiastic about prescribing it without a positive culture (and I tend to be wary of antibiotics in general, especially fluoroquinolones -- I already have tinnitus, I don't need more neurological problems).

I am trying to decide how to proceed; this has kept me home from work for 2 days already, and I'm very, very, very uncomfortable.

[Caedar]

CPPS can happen or recur because of situations that prompt anxiety and vigilance in the pelvic region. I developed CPPS from anxiety over sexual side-effects related to SSRIs, for example. I doubt it was the sexual activity itself that caused the recurrence, but the anxiety surrounding it. Definitely go see an internal PT again, especially because it worked last time.

[webslave]

Probably your low level CPPS (which you have had in the background for a long time) was goosed by the ezogabine / retigabine / Potiga, which is known to have effects in the genitourinary system.
https://en.wikipedia.org/wiki/Retigabin ... se_effects

The pinching, painful effects should fade, especially if you strive to ignore it. Focusing on it will cause neuronal windup.

[linearb]

Probably your low level CPPS (which you have had in the background for a long time) was goosed by the ezogabine / retigabine / Potiga, which is known to have effects in the genitourinary system.
https://en.wikipedia.org/wiki/Retigabin ... se_effects

The pinching, painful effects should fade, especially if you strive to ignore it. Focusing on it will cause neuronal windup.

I know this is an impossible question, but do you have any idea how long that fading might take? And, any advice on how to ignore something that's very painful and distressing? I have been trying to be extra diligent about my daily meditation; not sure what else I can do. I took a Klonopin that I had laying around on Wednesday, but it didn't really do anything.

[webslave]

Weeks to a few months, best guess. Distraction (work, meditational music), reminding yourself that the nerves are at play here and nothing else, and that nerves, once goosed, are irritable and will signal false pain for quite a while. It's always worse in the pelvis, because of the dense reproduction-linked innervation. Be patient, the body can be dumb.

[MajorSky1]

I wouldn't worry about the NGU or STI. If there are no obvious signs of infection, don't worry about it. You don't need to build up anxiety over something that's not even there. What Caedar said about developing anxiety and hyper vigilance over symptoms only feeds into it, very true. It can be a very difficult concept to wrap your head around when you're hurting every waking moment, but keep trying. That's what happened to me for the first 4.5 months - I couldn't get an accurate diagnosis, nor find a doctor who had the guts to call it what it was until 4 months after it started. During that time, I was an anxious mess and it just fed into it and made it worse.

And I agree, get back into PT. I think it does the most good to at least get things in a state of healing, and continue meditation, and some exercise. Keep your focus off it, even though it hurts. Believe me, I understand what that's like to struggle with. I've finally developed a method where I envision my focus as a beam of fuel, and if I turn that focus or keep it on the pain, it only feeds it and makes it worse, as well as the anxiety that comes with it. It takes practice to get good at it, but I'm getting better at noticing when I'm starting to focus on it, and IMMEDIATELY shifting my focus to something externally, or changing what I think about. It has actually helped. A quadrant of pain has dropped by about 50%, and it's still slowly getting better.

I am not a supporter of medication very often, but I've been on baclofen suppositories for 4 days now, and they seem to help take the edge off. My PT wants me to be on them for a couple weeks and then taper off. I resisted but she said I had to, which is what I need someone to do - tell me I HAVE to do it. So if you do PT, maybe ask about suppositories. I'm doing baclofen because it is less likely to build a tolerance to, but you can also do Valium, or some other benzo-family meds in suppository form. The only side effect I'm noticing is some nausea, but that might be a withdrawal effect from tapering off buspar which I'm currently doing.

What Webslave said is right on too. Nerves are a huge chunk of the issue. I have that problem in a major way right now. My left pudendal nerve branch got angry somehow, and it just takes time for them to calm down. I think the whole condition starts with muscle tension, but once the nerves get goosed real good, even after the muscle issue mostly dissipates, the pain of the nerves sometimes sends danger signals to the brain, and causes the muscles to tense up. They may not tense up to the same chronic degree as initially, but either way, it doesn't help. So staying physically relaxed will help those nerves to calm down too. Nerves can take longer than you think they should, but they WILL calm down, and again keeping focus off the area helps.

[webslave]

I've finally developed a method where I envision my focus as a beam of fuel, and if I turn that focus or keep it on the pain, it only feeds it and makes it worse, as well as the anxiety that comes with it. It takes practice to get good at it, but I'm getting better at noticing when I'm starting to focus on it, and IMMEDIATELY shifting my focus to something externally, or changing what I think about.

That's smart. I like it.

[linearb]

I saw a dr at my PCP's office today, as well as my PT. I got a hydroxyzine script for the moment.

My PT's thought is that this is all entirely neuromuscular, maybe it has something to do with the drug I took, or the sex, or maybe not, but that doesn't really matter and the smart thing to do is to get back into a regular routine of stretching and pelvic floor PT.

I'm inclined to agree with her because for the ~30-45 minutes right after the PT session I felt better than I have in weeks. I can't remember the name of the muscle she mentioned, but she said I am carrying a lot of tension in a long muscle that directly connects to the urethral muscles, which might explain a lot of my discomfort.

[MajorSky1]

Psoas is connected to the cremaster.

[linearb]

I am (shockingly) getting confusing / inconsistent information, having seen my PT, PCP and a urologist:

Urologist: did a transrectal ultrasound, noted some minor calcifications in prostate, also thinks I'm not emptying my bladder fully and sees a "dark" spot on prostate which he does not think is a tumor. Wants me to try Flomax for a full week to see if it helps, also has me scheduled to come back for a flexible cystoscopy to look for strictures/scar tissue.

PT: believes muscle tension could drive all of this, thinks I should just stretch daily and have regular pelvic floor PT for a while.

PCP: after I emailed her current status, sent me a reply that says "pelvic floor (muscles) are tight because they are reacting to something, that's why they are tight. The "something" is likely prostate inflammation and so yes, I think you should take the complete course of antibiotics so this is taken care of. The Flomax likely wasn't given enough time to work, but regardless, when we see someone with your symptoms we usually don't wait, we start them on antibiotics as I mentioned at our first visit. With all that happened day of onset, its likely bacteria just shifted around a bit and caused some inflammation so please take the meds as prescribed. For any persistent pain, please do follow up with your Urologist."

So, she's strongly advocating that I take Cipro for a week and see what happens. I'd probably already be doing that, but I have a lot of deep reservations about fluoroquinolones -- I already have tinnitus and assorted joint problems, I don't want to make them worse.

Thoughts?

[Caedar]

Well, do the most conservative / least risky stuff first: PT and Flomax. Fluoroquinolones do indeed have some nasty side effects. I couldn't handle Cipro back when my CPPS first started.

[linearb]

yeah; my PCP told me not to proceed with PT at this point because it might cause further inflammation -- but I'm not necessarily confident she knows what she's talking about in this regard, especially given my history.

The penis-tip sensations are just so fucking annoying! Makes my tinnitus totally fade to the back of my mind, lol, this is much worse....

[webslave]

PCPs know very little about this condition. Do the cystoscopy for peace of mind.

[linearb]

lol, after reading too many fluroquinoline horror stories, I explained my reservations about Cipro to my PCP and she responded by instead calling in 28 days of Levaquin >.<

[webslave]

Whoa, I suggest you avoid her. Find another doctor.