6 years with CPPS

[European]

I am significantly better. Not great but much better for sure. Burning hell in my pelvis was transformed to the series of aching points in my glutes, pubic area, groin etc. Swimming, mild stretching, hiking and resting is my quarteto of activities. Today my PT wrote me that he has an unexpected vacant slot for tomorrow but after some hesitation I refused because it would mean 400 km driving one leg and then back (I am on vacation in our weekendhouse). Hope that I will not regret this decision, because my regular PT appointment is in September.

[webslave]

Vacation = low stress + warm temperatures + less sitting = improvement.

[Sleeper Service]

Hopefully that's it settling down for another long remission. Fingers crossed!

[European]

Unfortunately I have to report worsening again. Neuropathic burning, pinching pain down there, and pin and needles in scrotum surface.
Despite having numerous trigger points in pelvic muscles, I feel that main culprit is upregulated autonomous nervous system. I feel that the "weather in my head" plays the major role. I decided to visit one of my friends who has apartment at sea, in order to have opportunity to swim in the sea and the higher stress of the journey might play a role too (anticipatory anxiety is my well known enemy).

Recently I have sometimes those muscle twitches in the pelvis, I feel that those are the muscles responsible for ejaculation, because the feeling is like before orgasm but not finished (I avoid ejaculation these days at all cost...). It always occurs in sleep or half-sleep in the morning, do you know what it could indicate? I am pretty nervous from that, I had it several times in the past, but now they are getting more frequent (two or three times weekly)...

[European]

Webslave, I apologise if I might sound panicking and catastrophizing, but last days were very rough with my flare up. I had several times fasciculations of (probably) bulbospongiosus and feel hypersensitivity in pelvis leading to prominent feeling of urgency (normally I don't have much urinary problems) and some feelings of unwanted arousal/hypersensitivity (I avoid orgasm these days at all cost). Is this still within the range of classic CPPS symptoms or might it signal some more serious neurological problems? Many thanks for your insights...

[webslave]

Fasciculations are usually a good sign, showing some spasm relaxation. Sudden urinary urgency: look to diet. I see nothing "serious".

[European]

Webslave thank you for your help and guidance. After one pill of diazepam I was better, some residual pain remained but the pressure on bladder was loosened and I felt half day more normal. Now this obnoxious feeling of urgency (with empty bladder) is creeping back. Trying to stay calm but it is difficult because I never had much of urinary syndromes (pain only). Now there is urgency, extremely weak stream, and sometimes (not always) very unpleasant "tingling" around prostate, like before climax, very concerning. My explanation is that hardened muscles around prostate irritate pudendal nerve which is misfiring all these sensations. Once the muscles will be released, the pelvic "feeling" comes back to normal. Am I right? Is this still in the ballpark of CPPS? My symptoms were always "classic pain" this new mix of symptoms makes me worry. Many thanks in advance.

[webslave]

One of the hallmarks of UCPPS is that symptoms wax and wane, and even change completely over time. Nothing you describe is outside the ballpark of the condition.

[European]

Brief update: last 2 weeks I have significant improvement in terms of pain (only minor discomfort) but my condition remains highly volatile. Still having higher frequency (cca 10 times daily), very weak stream, nasty feeling of urgency etc. Trying to avoid ejaculation, but I feel there will be issues with hypersensitivity and premature ejaculation, because my sympathetic autonomous nervous system is still over normal. Trying to resume stretching routine and a lot of walking. I think that these 11 months without internal work of my PT took its toll. I can't wait next appointment (16th sept) and I will probably resume the visits once monthly like before...

[Dylan_36]

European,

During your time suffering from UCPPS, I see you have done a lot of stretching.

Have you put any time into strengthening your core, lower back, and glutes? When these muscles are weak your pelvic floor muscles over compensate for them.

[European]

Basically I have done always the stretches from AHIP, added by some other similar ones. Plus stretches made by my PT. My discipline was not always perfect, e. g. this spring I had serious eye operation (retinal detachment) and was advised to absolute rest for certain time so I skipped stretches completely for 3 months. But agree that core, hips and glutes are the key in my case. Internal work as well especially those trigger points in anterior pelvis which are my nemesis (like in many men). My current symptomatology is as follows:

1. mild aches in perineum and pubic area
2. burning/pinching sensations in surface of scrotum
3. pronounced urinary syndrome (which were not prominent in my case before) : high frequency, weak stream, sense of urgency like if bladder was descending a little bit and pressing on my urethra
4. mild presence of candida in my groin again (which might be contributing factor for bladder centered problems)
5. hypersensitivity of anterior pelvic muscles, especially bulbospongiosus and sometimes feelings like before climax (clenched muscles irritating nerves probably).
6. mild ED (no morning woods for weeks).
7. anxiety in waves

I survived days with much higher pain but this clinical picture is highly annoying and depressing. I am unsure how to proceed with ejaculation, because I feel that ejaculation after 5 weeks of abstinence might relieve the pressure but on the other hand it might inflict another devastating flare up.

[European]

Let me add one more idea: I think this nasty feeling of urgency which is currently my most bothersome problem does not come from bladder. It is kind of urgency/itchy irritation feeling coming from background of penis and I still feel some weird feeling of hyperarousal or something like that. It is either irritated pudendal nerve or maybe some activated trigger point near the prostate, in the anterior pubococcygeus. I remember that this feeling was generated when my PT palpated prostate or the adjacent muscular fibres in immediate vicinity of prostate. Of course that there is a lot of neural crosstalk, but this feeling is quite independent of the food, hence my hypothesis that prostate and neuromuscular structures are responsible, not bladder. Webslave, may I ask you for your opinion? Many thanks

[webslave]

European, you've made hundreds of posts to this forum, asked hundreds of questions, and you're still trying to work out the why and what of UCPPS. It's been pointed out many, many times that trying to join all the dots of UCPPS is a fool's errand, and likely to cause you to remain unwell, but you have ignored that. And you are ignoring other basic advice given here, for instance you have not ejaculated regularly to remove old, stale, irritating, pus-filled secretions. I redirect you to the Tips page and ask you to follow ALL of the advice there.
https://ucpps.men/viewtopic.php?f=53&t=9338

Thanks for participating in the forum. I'm locking this thread for a few months to give you time to implement the other strategies on the Tips page. I will reopen it when you contact me via support at ucpps . men in the months to come.

[webslave]

European wrote to me with some progress:

Hallo Mark,

I am the user European from UCPPS forum, whom you locked the thread in August 2021. It seemed to me little bit harsh decision, but you were probably right that I was repeating myself and got into spiral of catastrophisation etc. which never delivered anything good. Sorry for that.

Recently I had 7 great months without any substantial pain, but now I am struggling with another flare-up. Flare-ups come and go, whatever you do. But there are always great months in-between

Your forum has been always a great help for me, especially in darkest moments of despair. Many thanks for that.

No need to unlock my old thread. I did not invent anything new, combination of trigger points work, stretching, relaxation and mental work is the key. Everybody has to find the optimal mixture.

But I will thoroughly read all the new entries from others.

all the best
European

I'll unlock since he seems to have developed some insight.

[European]

Guys, if you don’t mind, I'll post some updates, I have both good news and bad news:

1. The period from my last entry (between April 2022 and December 2023) was easily the best streak during my CPPS journey. The one and only flareup I had in January 2023 (lasting 2 weeks) and the rest was almost asymptomatic. No more pain, only some minor urological symptoms (hesitancy, weak stream, dribbling) which could be easily managed/ignored. I did some basic maintenance stretching, internal work at my PT once in 3 months and a lot of walking, hiking and swimming in the summer. I managed to somehow mentally reframe the whole CPPS thing – from “centerfold of my life” to “one of my health troubles”. I did not have flare up even in situations which were notoriously known for me triggering troubles (ejaculation, stress with long travelling) or were new unknown stressful situations (eye surgery) . Life was great. But I stayed down to earth, when my doctors (urologist, ophthalmologist, psychiatrist) were asking me about CPPS I never said it is over, I said I am lucky that I am in remission now. I had a major eye surgery, but even that stressful event did not manifest in CPPS (an interesting fact was that after the eye operation in general anesthesia, my pelvis was calm like never before, probably Ketamin reset all the neural wind up from the past). Needless to say, I did not take any painkillers or antidepressants or benzo for more than 20 months.
2. Things went astray in December 2023. I had covid before Christmas and although the covid itself was pretty uneventful, it left my body in complete disarray. Chronic fatigue, some respiratory problems and muscular aches all over the body. And then another flare hit me (in form of post-ejaculatory pain). After week or so the pain mysteriously disappeared for 2 weeks but in early January came back with vengeance. Still struggling with pain which is clearly neuropathic in nature: burning and stinging in groin, base of penis and perineum, pin and needles in scrotum (these scrotum paresthesia are much more intensive than in the past, I tried Atarax but no effect). I was at my PT, he found some knots in pubococcygeus muscle but the overall state of muscles was assessed not as bad as assumed. After consultation with my psychiatrist (who is my cousin and close friend) I started low dose Amitriptyline and every third day or so low dose Klonopin (helps a little). I am doing my stretching routine, taking Quercetin, magnesium, hot baths, vitamin D, 3 Omega etc. Flare up is present for 4th week and does not change much. Especially that pain of neurological origin makes me worry, I feel that my nervous system is highly upregulated and needs to calm down somehow. And probably pudendal nerve plays prominent role in this havoc. Considering to add Lyrica or Neurontin to my regimen. Lately I found new rehabilitation centre in my city, they offered the examination of pelvis by high resolution ultrasound SONO Q3 and check up of functionality of particular muscles. I might give it a try, it is non-invasive method.

That’s all. Those who are in flare up, never never ever give up. Those who are in remission, enjoy every moment.