Bizarre ongoing genital discomfort since Feb, any ideas?

[indecisiveman]

Hmm, I wonder if it may not actually be a trigger point as it only seems to happen when I have to pee, even if just a little bit. Felt weird yesterday but today has been alright. I notice as I calm down things shift around a bit. Like I'm not feeling much in my penis itself but now I feel aching around my right side pelvis area around the public bone. And if there's a lack of sensation in my groin, my chest will begin feeling heavy and it'll be hard to breathe. And of course there's my left knee hurting when I apply pressure which I know is fine as I had it extensively looked at years ago, and coincidentally came on during a very stressful time in my life.

Also I've been reading quite a bit on TMS and Dr Sarno, and I wonder if my issue could be TMS related as it all started during a very stressful period in my life (precipitated by having just graduated college) and symptoms seem to migrate. The most consistent feeling is the penis wet spot feeling on the head but things tend to come and go, but I noticed I was calming down until my setback Friday where I felt like my chest was being absolutely crushed. Makes me wonder if it was my brain trying to move things around in order to keep me distracted? I did have an EKG months ago and my heart is totally fine. And of course I wondered about pudendal neuralgia but it doesn't hurt me to sit and it seems like such a rare condition it isn't worth stressing about. Weird times. But I'm going to continue the breathing exercises and not falter!!

[webslave]

The brain, the muscles, and the nerves, that's what UCPPS is all about, with bit roles played by the HPA axis and the immune system.

If researchers are still battling to fully understand it, what makes patients think they can?

[indecisiveman]

Exactly, if there's a common thread I've noticed browsing here AND in treating TMS-related symptoms is that trying to understand UCPPS symptoms is a fool's errand. Unfortunately that's what I've been chasing these past 6 months as that's how my brain operates, I'm a very logically thinking person saying "okay my body is doing this, must be an infection esp since I had unprotected sex" and BAM next day, these symptoms. I think at this point I just need to constantly remind myself: if it were an infection it would have gotten worse. If it were a structural thing it would have shown up on the CT scan. There's no evidence of either (also a friend of mine had contact with the same person and has been unprotected with other partners. Everyone on that end is doing just fine). And nerves issues / neuralgia? Doesn't seem viable in my case. If I keep chasing this things around I'll never get out of this. And I notice my sensations literally change with my thinking. Chest heaviness went away earlier, was replaced with pelvis ache. Pelvis ache is mostly gone now, replaced with slight penis head sensation. Penis head sensation goes away, pelvis ache is back. If ALL of this is gone at a given moment, I get a headache. And if I'm with friends, it all goes away.

It seems really apparent I need to mentally better myself before any of this is to disappear. My symptoms aren't even that bad compared to some of the stories on here... I just find myself very confused that I have this weird discomfort going on suddenly and that I can't find an explanation. But at this point I've given up on going to doctors and I need to find my own cure.

[webslave]

Exactly, you are developing insight

[indecisiveman]

I think so... things were weird today but while I was sitting down for a #2 I just looked for a moment and noticed something: when I felt the tingling around my scrotum, my tested literally were moving and retracting inward. Likewise, while feeling that kind of retracting penile irritation, my penis was literally moving. And while I did my breathing exercises after, I felt that sensation in my urethra, that similar crawling kind of feeling. Along with the tingling. I think I'm getting it now: It's all tension. Infections don't cause these kinds of sensations. Especially since the heaviness in my chest is so prevalent. These observations make me more and more convinced that it's all stress with nowhere to go, so it's staying in my body. I wonder if feeling those sensations during my breathing are actually a releasing of tension (or getting feedback for it). And now, afterward, I already feel a little better. I'm starting to believe that this is really the way.

Okay now I'll definitely stick with the breathing and not get dissuaded by what my crushed chest wants to say, and report back with what happens after a month of doing that a couple times a day (and no skipped days, I skipped a couple days recently and it only hurt things).

[indecisiveman]

Unfortunately I've been going throug another bout. This past week I tried my best to treat things like a mind-body disorder. So, I started doing things I enjoyed again and actually tried watching shows, playing games, doing art things, etc etc in an attempt to get my life back. After all, everything going on with me is weirdly non-specific. It seemed to be working- I started feeling less tingling, less of the wet spot feeling, and I started noticing the tension in my pelvis in my butt and how it would clench at opportune moments.

But then I started thinking I had herpes in my urethra. I've been neglecting to mention that I actually am positive for HSV1. When i did get tested, it was with the IGG test on Feb 25th, 2 months after I received unprotected oral. I started getting really stressed about this, as things seem to line up there: tingling, feeling exhaustetd/run down, sensations and aching in my pelvis and right thigh, stiff jaw joints, etc etc and this got me thinking AGAIN and naturally yesterday I got so stressed for about an hour that I had to lay down. There was also my episodes of trace blood in my urine on 2/21, and 3/12, and in May as well however on 3/12 I gave another sample immediately afterward and there was nothing there. That specifically is very sparse. But I couldn't help but go there because I've been so exhausted and run-down recently. However it probably isn't actual genital HSV1, and I'm just going to type this out as a way to reassure myself:

Genital herpes works in outbreaks. It wouldn't make sense to be having a continuous outbreak for 6 months. It also does not hurt me to pee at all, so there are no lesions in my urethra probably. And no lesions or sores outside on the genitals either. Also, HSV1 on genitals would provide very seldom outbreaks since it prefers to live in the mouth, thus ppl with it have very few outbreaks a year. I also had a very high titer on the IGG test indicating I probably have had it for a while in my mouth, which makes sense as sometimes I get a sore on my tongue or the roof of my mouth in the same spot.

Just a very confusing time but I really want to not think it's HSV1. I'm getting tested for Mgen one last time in a few days just to be completely sure. But I'm still trying to think of this as a stress thing, as I was doing VERY decently the past few days. Tingling had really dropped off, the retracting did as well along with the feeling of needing to pee at the tip, and my penis also looks less veiny. the wet spot feeling is pretty much the only thing and that even is being less frequent. I think. And this feeling of heaviness in my chest is still here but doesn't last all day and will sort of peak at a certain time in the day. This stuff is rough, I'm exhausted and frustrated all the time. It's really hard not being hypervigilant but I cut it down the past few days so I'll keep trying and see where it gets me.

[indecisiveman]

So I did have four very decent days last week where I tried really putting things out of my mind, but then it all came back on Friday when I got all stressed. I suddenly felt very heavy in my chest and then started feeling uncomfortable again. I'll be honest I've still been battling the idea of having an infection or not, but I saw a post today on here where someone said "infections don't have off days" and that's exactly it. I wouldn't have had days in March and all of April where I had no symptoms if this were an infection.

And I can't help but now being afraid I have a urethral stricture or something. At this point masturbating doesn't hurt or anything afterwards but I'm still very bothered by the moist feeling on my tip. But if it were a stricture it probably wouldn't have waxed and waned? Every time I received a bladder scan from March to May, I retained no urine in my bladder except for 134mL in late May. My urologist didn't seem at all concerned about that because it "wasn't a huge number" he said. He did suggest I could get a cystoscopy but that it would likely be negative. I agreed and I REALLY don't want to do that procedure because it'll just ramp up my anxiety about getting a UTI, or a stricture from the procedure. My urine stream does spray sometimes but it's rare, it usually is only in the morning but there have been times where I've sat down for a #2 and when I look after peeing, I'll see some drops of urine on the penis as if it sprayed a little bit. But I really have no discomfort while urinating, there have been a couple moments where I feel a little sting after peeing. And I probably don't have one as I've never had trauma to the area and I don't masturbate roughly, I hope. I also hope discomfort and things would be much more consistent as hell, I haven't felt that crawling sense of irritation in a while, only briefly a couple days ago when I laid down.

But I did notice when I tried mindbody work last week, as I kept acknowledging but not fearing the symptoms, things would start to shift or move. Like the ache on the right side of my pubic bone actually came on stronger and then shifted to the left, always only lasting a few minutes. Lots of twitching and vibrating in my pelvic area one night, noticing I was clenching very roughly. But then I lost all the progress when I got stressed on Friday. It was like a stress response almost, my chest just suddenly became so heavy I had to go lie down.

But anyway this is still a rough time, but if there were something actually infectious or structural going on things would be much more consistent I hope? I'm still very stressed, my chest and heart is pounding all the time but I hope this is at the root of it. I still have the moisture on the head feeling which I really hate because it makes me feel like I'm expelling discharge, but I did see a post of yours webslave that said something like that could be a ghost sensation due to the stress. At this point I do a lot of sitting because I don't want to feel it. I feel like such a broken record at this point but I'll really buckle down on thinking of it as a mindbody thing because 1. infections don't have days off and would get worse, they don't involve good and bad days and 2. a physical problem like a stricture would (hopefully) have showed up on my CT scan and would cause me much more discomfort and things wouldn't pop in and out so often (pelvic aches pop in only 4 times a day for like 15-30 seconds, and urinary frequency is gone for the most part) so maybe same principle?

Also when I exhale sometimes, I will feel a tense pull on my left testicle as if its moving upward. Must be related to tension. I also smoked weed last night and was able to feel how much tension was being held in by my tailbone. My relapse didn't necessarily make anything worse, for what it's worth. Anyway I always appreciate the input and sorry I sound like a broken record.

[webslave]

Disregard the wet feeling. It's just phantom sensations from nerves. The sooner you learn to be sceptical of the pain and other sensations your pelvic nerves are sending you, the sooner you train your brain to ignore this nonsense from these overstimulated nerves, the sooner it will fade away. I promise.

[indecisiveman]

Thank you that's really encouraging... and could it be my nerves also causing the slight moisture on the tip? It's that too that makes me think discharge, but I'm trying to tell myself an actual discharge would be thicker or have an odor or pus or something in it. Or leaking urine? It's not an infection, and it's not a stricture as I don't have trauma to the area or discomfort while urinating.... just very confusing but it isn't happening all the time (and again, makes no sense that it went away in April / wasn't consistent in March) I'll take your word for it, give it a month, and see what happens.

[webslave]

It's called allodynia and dysesthesia, if you need the technical terms. Everyone's tip (meatus) is moist, that's normal. But these phantom irritating sensations of pain, moisture etc are not to be trusted.

[indecisiveman]

Thank you, I've been getting there I think. I'm starting to believe that because when I do feel the moist feeling, a lot of the time when I do check there's literally nothing there. I did masturbate today and at the time it almost felt like my penis was confused- lots of little sensations would pop in and out all over, almost like little electric shocks or something. It doesn't hurt at the time or after ejaculation. I have lots of twitching in my body and still some fasciculations in my groin that'll pop in, but overall I'm starting to feel more normal besides that moist feeling which doesn't actually seem to be an issue. One thing I notice is if I take a decent breath and exhale, at the time of exhaling I can feel the vein connected to my left testicle almost pulse or tense up or something. If I put a finger to it to feel it while I exhale, it will move as I exhale. It's very odd, it doesn't hurt... should I bring it up with my doctor or urologist or is that evidence of just more tension? I also notice I'll feel it a little bit when I'm consciously trying to relax my pelvic floor.

Anyway as I've been calming down I notice almost cold or hot feelings in and around the pelvis. I know TMS seems to be related to hot, cold, or tingling sensations. These pop in and out with me. I also barely have the scrotum tingling anymore. So the only thing really bothering me is that moist feeling... I thank the lord that crawling irritation feeling is gone, I haven't felt it in about a week. So maybe I'm on a good path? I might meet with my urologist one more time just to get his opinion as I can't help but still be afraid there's some kind of structural problem and I REALLY don't want to get a cystoscopy... but I'm trying to tell myself a structural issue would be a lot more constant or painful.

I'm also having a consultation with a therapist on Friday. I'm able to smoke weed without any negative effects at this point but it no longer works as an anxiolytic for me, if anything it just ramps my heart rate up big time. It also just turns me into a zombie. So I'll be looking into medication and maybe that'll help. Thanks for your guidance through this confusing period in my life webslave.

[webslave]

So maybe I'm on a good path?

You are, and because this is all mediated by nerves, you have to unfocus from it and be patient, because as you know nerves are notoriously slow to heal.

[indecisiveman]

Thank you, I kind of succeeded this past week. Really made an effort to put things out of my mind and I succeeded for the past week. I've basically been in this weird cycle where I put things out of my mind, then on the 4th or 5th day things start getting weird. This time, on the 5th day, I was playing some video games at night to distract myself and felt some very intense pain in my neck. I've been keeping decent posture, so didn't think much of it. It popped in and out for about an hour but didn't last long. Then it went down into pelvis near my right hip, I felt this intense painful throbbing. Didn't think much of it, it went away.

Then on the 6th day I went to work, had a decent day. While working I was sitting down for a minute having a convo with a coworker and felt a sharp sting in my penis, maybe on the tip? Not sure, but I didn't freak out and it didn't linger long. Then when I got home I got probably one of the most intense headaches I've had in my life, basically felt like my brain was in a volcano. I didn't freak out about it, it did stay lingering but next day was gone. I also started sleeping better and saw some of the redness at my tip dissipate.

Then, yesterday, the 7th day, I made the mistake of having some mushrooms bc i thought it would calm me down.... big mistake as I felt all this stress come on and my chest got really heavily, then all my groin stuff came back. I also felt a need to pee frequently. Really frustrating! And now today I've had some slight penile irritation and some intense pain in my jaw.

Really weird stuff. I unfortunately keep going back to the physical- "what if i have stricture or an infection or something undiagnosed" but it literally makes no sense bc any of that stuff wouldn't just pop in and out. Also my urine stream isn't blocked or painful or anything, comes out pretty fine for the most part. Also weirdly enough, I had some frequent wet dreams this week. Had one on the 5th AND 6th nights. I know frequent wet dreams aren't (seemingly) linked to any kind of condition or disease, just very curious... anyway it seems like i'm in a real loop right now, I keep telling myself I'm prepared for the forthcoming but when it actually comes its really hard not to get wrapped up in thinking something terrible is going on. Good news is I've put off the temptation to see my urologist or doctor. I'm not going back, not for a while. I'm trying very hard to keep this internal dialogue going of telling myself I'm safe, that it's all just nerves, etc etc. I sound like such a broken record but I'm seeing a therapist tomorrow, and giving a solid month of no worries and no masturbation just not to irritate things. And if there's any progress I've made its that I've accepted I have no discharge, if I did something would be oozing or trailing from my tip and getting onto my foreskin, etc etc.

[indecisiveman]

Well here's a mini-update: I've been doing a lot to reduce my anxiety. I've started doing a bit of what I used to do before things started in Feb which is: just kinda doing what I used to do. I'm not as hypervigilant. And now at this moment something is cropping up that I only had at the end of April, not sure I mentioned it. But the symptom is precum leakage. I do still feel that wet feeling only now if I look I notice it's easy for me to ooze precum, it's clear and has the same exact consistency and no odor. Is this a UCPPS thing? I only experienced this at the tail end of April, then had my big flareup in May where I went downhill. I almost wonder if I'm going "in reverse" so to speak... my current symptoms have involved a lot of muscle twitching and aching rather than genital sensations the past few days. My jaw joints are super stiff all the time, leg/thigh twitching a LOT, tingling in scrotum does still pop in and out, and the ache near my pubic bone is popping more in and out. But every day is a little different which is making me think more and more it's a nerve thing, which has me chilling out a little more. I can actually tell I've been in fight/flight mode all the time so I'm doing my best. And I start with a therapist tomorrow. Anyway I still have some progress to go thru but it really seems to me like CPPS and things like semen leakage and excessive wet dreams are related to CPPS am I correct? Maybe it's my brain/nerves trying to make me think I have discharge? I think that's it to report for it. Thanks for the guidance you give

[webslave]

Yes, you are correct. The tense jaw gives the game away, TMJ syndrome is commonly experienced by people with UCPPS

https://health.clevelandclinic.org/stub ... exercises/

Precum leakage around sexual activity is normal, before and even for some time after (hours).