Bizarre ongoing genital discomfort since Feb, any ideas?

[indecisiveman]

Well, still going thru it a bit. Not much new to mention, other than that this probably truly is all my anxiety because when I feel a symptom (like irritation along my dick- this time it isn't in the inside, its more on the outside) it won't last very long and then a tremble will appear somewhere in my body. Those muscle twitches/spasms/fasciculations (spelling?) in my butt / perineum are most apparent when I'm on my 3rd or 4th day of trying to chill out and definitely not my imagination.

Only new thing to report is that I notice a lot of stress and heightened anxiety when I try to masturbate. Like I'm afraid while I'm trying to masturbate... I'm not able to focus on pleasure from it as I start getting really stressed and my forehead will start sweating- basically anxiety symptoms will appear. Probably a UCPPS thing I'm guessing.

Anyway, I can go hours and hours at home or work without symptoms (usually just that cold/wet penile head sensation) but driving is a huge trigger. Driving will almost always trigger a sting, or tingling, or that running water thru/around my genitals sensation i've described. I also noticed I'm HIGHLY anxious while driving (basically holding my breath, nervous sweating, etc). So that's probably the big link there. Didn't mean for this to get so long but I haven't gotten tested yet, I keep putting it off. I doubt there's anything actually wrong though, just hard to believe it. I'm having more lucid moments though and I'm working more so hoping that'll help. That's all for now.

[indecisiveman]

Okay well, got my test results back after putting it off for a while. NEGATIVE for Mgen, Mycoplasma Hominis, Ureaplasma Parvum + UREALYTICUM. Last time I took ANY antibiotic was beginning of August. I did my best to make sure this was accurate: first time I peed of the day, 35mL. This was thru Quest.

Looks like it's time to stop worrying about an infection bc at this point, nothing more I can do. No more STDs I can test for I think, urine cultures and urinalyses are constantly negative. No more rabbit-hole diving. And I'm not concerned about a stricture anymore bc my flow is fine.

And if there's anything I've noticed, I have EXTREMELY heightened anxiety now that I've been trying not to dwell on my symptoms. I wonder if that's what I've been suppressing/sitting on. Also, spasms have moved into my legs, more spasms in my belt line and in my butt. Aches around my pubic bone on both sides and also in my thighs, usually the right one. Jaw pain has moved over to the right side instead of the left.

Very interesting. Some of this isn't new. But some of it is moving and shifting around. Looks like it's time to shut up about an infection, and take the mental health approach. And I've basically gotten a head start on that, trying to do more at work and do more things I enjoy like watching movies.

That's it for now. Hope you are doing alright WS.

[webslave]

I am struggling, thanks, my wife of 42 years having died suddenly and unexpectedly 3 weeks ago.

You are on the right track, well done.

[indecisiveman]

Oh my god, that's awful... i'm so sorry. I hope things get better soon and that you have friends and family to lean on.

But thanks. It's been a little rough really accepting it, I had a little breakdown the other night where I was so frustrated about my condition. And then guess what- that night urethral spasms came back but they haven't appeared since. My symptoms appear to be in two distinct categories: Sitting down, and standing upright.

1. Sitting down, i'll feel movement/irritation along the top foreskin edge (so around the tip i guess). Usually while driving. Sometimes a weird, hollow spasm-like feeling of movement inside the penis. Fluttering/spasming in my perineum (fasciculation) and twitches in my belt line and butt.

2. Standing up, I'll feel like my penis is cold, or like the tip is wet or something. Sometimes a sting. If I'm calm while sitting I'll feel spasms in my legs. Sometimes an actual chill along the foreskin edge, as if there were liquid there or something. But I know there isn't.

Jaw pain is gone. But this all probably sounds like UCPPS, this isn't an infection I'm sure now. My only real question is, the perineum twitches are signs of muscles relaxing (a good sign). Are these supposed to last for a while? I felt them the past 4 days several times (before I freaked out of course) but I haven't felt them in a couple days probably because I haven't been calm. Will they increase or keep going for a while? I know the point is to be patient but I couldn't help but think "hey if I felt those often for several days and it's a good sign, why am I not better" etc etc. But I know there isn't an issue since I'll get home from driving while feeling my dick is overly sensitive and crawling, go sit in my desk chair, calm down a bit, and have it slowly slide away. Then the leg spasms start...

Anyway, trying to do my best to heal mind-body style now, and trying to be as patient as I can. Obviously I'm sitting on a hot-bed of anxiety, so that's the thing to work on.

[antmanbird]

I am struggling, thanks, my wife of 42 years having died suddenly and unexpectedly 3 weeks ago.

You are on the right track, well done.

I apologize for hijacking the thread indecisiveman.

Webslave, I am sorry for your loss, and am sad I can only offer you these small words over the Internet. You have impacted my life and the life of others very much, for the better. You are a science-driven, practical and optimistic force for a condition that needs it badly. A voice of calm and reason and seriously an inspiration. Thank you and I sincerely hope you get through this.

[indecisiveman]

For anyone who might be watching this: I've been taking steps to really get a grip on my anxiety, and I think I've made some progress. I'm able to defecate more regularly. My jaw pain is gone. I still have a bunch of the sensations of been speaking of, but this time in more flashes and it's all less consistent throughout the day. And to my amazement, I woke up with a genuine erection for the first time in several months the other morning. That unfortunately isn't consistent, but if the graph on here is anything to go by, recovery is NOT linear. More fasciculations and twitches have been appearing in my pelvis. Obviously a mind-body approach is doing something, so I'll keep following that. That's all for now.

[indecisiveman]

An update: I'm on almost 4 weeks of amitriptyline 10mg. It has made a slight difference. I've had more normal moments, and my anxiety is humongous and I'm exhausted all the time. However I'm really doing my best not to dwell on it, when something happens like a sting in my penis or something I just take a deep breathe and say "it's okay, it'll go away" and it usually does in a couple minutes. Sometimes I have tingling around my scrotum but if I don't worry, sometimes it will be immediately followed by a fluttering in my perineum. Sometimes I'll get a spasming of muscles around my rectum too. I've left the infection route behind pretty much completely, as it wouldn't make any sense for that to be true. No more infection talk, no more STD talk. And obviously recovery isn't linear, I just tell myself that it's like I'm on "the graph" which is on this site. Anyway, today was a weird one bc lots of stinging but I've also had a lot of fasciculations too, which is basically the muscles twitching and releasing. Only the passage of time and calmness will heal this one. I'm obviously very wound up because if I smoke weed (even the tiniest amount) my limbs will feel weak and stressed, it'll be impossible for me to focus on anything, I'll start basically feeling panic in my entire body. So, calmness.


I had a moment recently where I had woken up a couple hours before my alarm. I was so stressed out. But I started getting into a rhythm of mindful breathing, and as I did that I felt all these twitches in my pelvis and in my penis too. I thought "hey, if I ACTUALLY had an STD or an infection this wouldn't happen, this is basically an emotional response. " So, I go with that. When I feel a weird sensation, I don't say "omg it's an infection". I just say "it's just me". Because I created this. It's just me. Anyway I'll update in another month.

Admin comment: You are quite hypervigilant, but you have insight into the condition and you're making real progress. Prognosis: good

[indecisiveman]

Thank you for the encouragement. I'm getting more insight and I'm starting to improve- I had two days last week where I was having to defecate quite a bit and was feeling very gassy. I was doing a LOT of reverse kegeling on the toilet and I noticed that after, my penis had become much less veiny. And my erections have begun to feel much more full and strong. My genitals have begun to feel a little less alien and strange, but at the current moment I'm at a little low point where it still feels a little cold and strange. On my therapist's recommendation I'm going to try sleeping earlier and more consistently (i slept literally all day yesterday). She said I'll probably improve big time once I get that in order. That and mentally taking control over things I CAN control in order to break the hypervigilant loop. My morning erections have pretty much returned entirely. And since I'm improving, I'm taking it as proof that I can recover 100% but not to rush myself. I have a habit of putting too much pressure on myself. That's it for now, just wanted to share this interesting improvement.

[indecisiveman]

A quick update: I was taking 10mg Elavil/amitriptyline but after about 5 and a half weeks at this point (and on the advice of my doctor) I've decided to stop taking it as it's exacerbated my anxiety and fatigue tremendously, and I think made my pelvic symptoms worse as yesterday was a pretty rough day for all three things. I've been prescribed Buspirone/Buspar but if that doesn't help and makes things worse (and it just might, seems like I'm very sensitive to these kinds of medications) then I might just forgo medication altogether. I feel a pretty constant heaviness in my chest around my heart so I must be really wound up and stressed, sleep is difficult, crazy dreams, etc so I don't really think I have an infection anymore. Morning erections are like... half as strong as they should be. Maintaining a decent erection is kind of difficult and masturbating is very anxiety inducing- like I can't calm down or something. Anyway I'm sure its more than clear what my problem is at this point so I just need to let it go and not concern myself with it.

[indecisiveman]

Well quick update: I stopped the Elavil and went to Buspar per my therapist's recommendation, but after only 2 days on it I felt like I was going to DIE so I stopped it- I'm talking extreme heart palpitations, restless limbs, unable to sleep, probably the worsts sensations of anxiety I've ever felt. So I stopped that. Otherwise I can't help but feel a little frustrated, I'm still not quite better. But I'm doing my best to not worry and educate myself as to why I'm feeling these sensations. They never really last long is the thing. I'd like to think if I REALLY had an infection I'd be in some pain at this point or things would actually progress, but they only just shift around. About a week ago I thought I was making progress because the "wet/cold" feeling on my p*nis was replaced by a feeling of a sting at the tip for about 5 seconds every half an hour or 45 minutes. But we're back to that again. But these things are never constant, the cold feeling will sometimes just go away and then come back. That cold feeling is usually only while standing. I also feel the perineum spasms still, they're pretty rare but I notice they always come after the scrotum tingling feeling. I also notice if I have a flare up or something it's right before I need to pee or defecate. Pelvic muscles upset because of my anxiety mayhaps? and I do still have a lot of anxiety, there's a weight in my chest very often, sleep is difficult, and I'm very tired and also hungry more often. I do notice I'm getting morning erections more, they aren't very strong but they have been appearing more often. Anyway, once again I'm negative on all tests so obviously i am "normal" I just need to believe it. This is hard though! I usually am thinking about my symptoms, it's hard to defocus because I'll feel a sensation and then question it or wonder what it means, then it's like I'm back to square 0. So I honestly have a hard time believe in my own progress, and start feeling like I should test again just in case. But I try to think from the perspective of others: why test again if you did it in the ideal circumstances and went long enough after the encounter/antibiotics?

Anyway it's still a rough time but I obv have a lot of anxiety and that's what I need to work on. Just a hard time believing it when I feel so sensitive down there so often.

[Snidon]

Have you managed to solve you problems. I get precum stuck on my urethra. I go to pee and then after 45m - 1 hour it secretes and it feels super ticklish. Also my penis moves involuntary. Was that something you experienced.

[indecisiveman]

Have you managed to solve you problems. I get precum stuck on my urethra. I go to pee and then after 45m - 1 hour it secretes and it feels super ticklish. Also my penis moves involuntary. Was that something you experienced.

I used to have some involuntary penile movement while sitting down, not so much anymore. That's muscle spasm for sure. Also if anything is "stuck" in your urethra, unless there's a mechanical issue like narrowness or something then it's your muscles strangling it/the nerves of it. Don't focus on it.

Here's a general update though since it's been a while. I don't have much of these issues anymore, things have stabilized somewhat. I still get some tingles and spasms but they don't last long honestly. After finally accepting my test results and everything, I truly believe I'm fine in this regard. I think I do have some deep-seated anxiety though: Masturbating (and sex) doesn't create a lot of actually pleasure unless I tense myself up a lot. I notice while masturbating I basically clench my stomach inward and barely breathe. So I tried again today while just trying to breathe with my stomach, and noticed that I felt an increase in pleasure as well as extreme anxiety. Like I felt SCARED even though I knew I wasn't in any danger.

I notice a lot when breathing with my stomach that my stomach makes a lot of sound when doing so. I also notice an increase in hunger. So, I think a lot of trying to solve this problem is figuring out what is going on with your lifestyle to create stress or tension. For me, it's that the past year and a half I barely have been eating or sleeping right. I have an EXTREMELY high metabolism (hopefully not too high, getting bloodwork/thyroid function testing done soon just to make sure), I'm very thin and light and so I need a LOT of food to maintain myself. so I'm trying to get myself back on track there. I've lived a very imbalanced lifestyle pretty much all my life in this regard so I can see it being the problem. That's what my therapist believes too, and I think she's right.

Unfortunately I did have sex with someone recently on Sept 8th and the condom rolled off during. Also, while we were kissing she put some of her own vaginal fluid in her mouth and kissed me. Then two days later I came down with a REALLY sore throat and fatigue, the former which is hardly here at this point but the latter is still very here- I have post-exertional fatigue and some stiff joints, so it got me really thinking that maybe I got Ureaplasma in my throat or something (negative for HIV, Syph, oral Gono/Chlam) BUT I really don't think so. My throat looks totally fine according to TWO doctors, my own and one an STD doc in NYC. So, I doubt that. But I also have swelling of my eyelids which started 2 days before the incident which I'm still dealing with, it's been VERY persistent and hard to get rid of even with erythromycin. But I doubt it's somehow implicated with UP or any STDs, I don't have extreme pain or anything.

Unfortunately I've had a hard time grappling with being so sick like this and my encounter. Especially since Ureaplasma is not tested in the throat anywhere in the US. But I feel like I'm likely fine and dealing with post-COVID fatigue and malaise, considering I had Covid in mid-July which is about 3 months ago now. I may get the new shot and see if that helps. There's a really bad viral illness going around here (apparently) that really knocks the crap out of people, so maybe that triggered it. I feel like if any STD were in my throat it would actually LOOK bad and feel much worse, it's mostly healed now. I mostly just have stiff (not swollen or painful) joints and tiredness now along with my swollen eyelids, which also aren't the worst. Just very annoying.

Okay this is a lot, but I think that's it. I still have a lot of anxiety considering I just jump from the target of worrying about my ucpps to my throat, and then my eyes. I've decided not to have sex with anyone anymore unless we are actively dating AND we both get tested and show the results to each other, just too much to worry about. Should've settled on that a while ago but I wasn't in the right mind to do so. I'll work on the anxiety and try and move on from this, I'm 28 now and I've already lost too much time to fear. Thanks if WS/anyone reads this, this is where I'm at now. It's been a constant journey but I think everything will be fine soon enough.

[indecisiveman]

I can say that I'm mostly better from this condition. A tremendous, TREMENDOUS part of this condition is healing yourself from anxiety and worry. I still do experience some symptoms, but the biggest part of it is not caring if you feel something. If you've gotten everything checked out, you're fine. The sensations you feel are just sensations, and they can't harm you. So when I feel a spasm, that's literally it- a spasm.

On the other hand, I am dealing with blepharitis (inflammation of the eyelids/eyelid margins) and it's been very emotionally heart-wrenching. This appeared in Sept, 2 months after I acquired COVID and 2 days before I got really REALLY sick with some kind of sickness. I'm gonna test for the Mycoplasma profile in my throat just to eliminate the possibiltiy, but it seems that probably isn't it since I've healed mostly. I still have a sore throat once a week or so now and I'm still fatigued a bit... the only thing is my eyelids are sore and annoyed, especially the left.

I've read that Long COVID can effect the eyes like this especially the left eye. The only thing I've found in my doctors visits so far is a vitamin D deficiency, so I've been taking 5000mg of Vitamin D for a couple weeks now. Omega 3s too. It'll take some time so we'll see. But otherwise I'm going to explore if there are any root causes, or if I just need to give it time. Blepharitis sucks bad, it's so apparent and annoying. But I'm keeping up with an eyelid cleaning routine that pacifies it and maybe it'll get better at some point!! Having a hard time embracing my joyful self, though. We'll see how it all goes.