Starting pelvic treatment after 4 and a half years

[JuanMilo]

Thanks a lot webslave, as always I really appreciate the advice. I’ve actually been cutting the pills into quarters, so I’ll be sure to stick with that move up slowly.

I suppose what I mean is that I definitely don’t want to be on it indefinitely and I’m not just trying it for symptom relief alone - is there potential for it to give meaningful improvement that can last after stopping it? Or can it achieve that effect alongside PT? Apologies again for all the questions

[webslave]

Elavil (amitriptyline) is a mast cell protector and muscle relaxant, and subdues nerve pain.

Anything that interrupts the pain cycle can potentially lead to lasting gains.

[JuanMilo]

Unfortunately I’ve had to stop the nortriptyline - I can’t really tolerate it. It seriously messed with my sleep and made me feel ill. I’m really exhausted from it tbh. I might try the quercetin on its own next, as I only used it with graminex which didn’t agree with me. Hopefully it was the graminex causing issues and the quercetin is okay. I know it helps a lot of guys, so I’ll definitely start taking it again.

I contacted a different PT off that pelvic PT database, about an hour from where I live. I don’t think I’ll bother with the psychology focussed one, as she doesn’t want to regularly focus on the pelvis and the muscles. I see this new one at the end of January - covid permitting. Talked with her on the phone and she sounds more promising than the last.

[JuanMilo]

Elavil (amitriptyline) is a mast cell protector and muscle relaxant, and subdues nerve pain.

Anything that interrupts the pain cycle can potentially lead to lasting gains.

Hey webslave, what do you think about this study?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6038669

Admin comment: viewtopic.php?f=4&t=9282

[JuanMilo]

Update to my thread - saw the new PT today and she was much better than the last. She found trigger points in my abs that radiated pain across, even recreating the sensation of pressure I get over my prostate/bladder area. She treated these and moved onto the internal exam, she seemed to only explore below 9 and 3 o’clock, I may ask her about the anterior next (I think she wants to ease me into it). She treated a couple of tender points internally and my urinary symptoms have felt better since - less pain, better stream. Positive signs!

She looked at my posture too and believes there are issues there, she’s given me some homework to do in the meantime. The plan is to see her again next week and a few more times in the first couple of months, then I’ll be focussing more on self treatment.

She also seemed quite knowledgable about UK pelvic PTs, she even knew the pelvic pain specialist I’d seen through the NHS as well as the PT who works with him, which quite surprised me! So yeah, generally pretty positive feelings overall.

[JuanMilo]

I’m slowly improving at the moment and seeing that this can be turned around. As well as having PT (sometimes a couple of weeks in a row but generally every few weeks), I’ve been taking quercetin which I do think is helping, most days I’ve been going for a walk and I do belly breathing and a light stretching routine, also limiting ejaculation and drinking more water/less caffeine. I’ve also been employing some mind-body stuff - ignoring sensations coming from the area as best as I can, telling myself in safe in situations I usually fear pain, reframing sensations with positive words etc. Soreness in the perineum is muchhh better, much less irritation when I urinate, penis pain dying down. My penis has also been slightly discoloured since this started for me and even that’s improved.

Just wanted to share a positive update. I still think it’ll be a bit of a long road ahead but I’m feeling positive.

I think everybody’s case is personal and you have to tailor treatment to the individual. I’ve benefited from avoiding things that flare me up, including a lot of stretches and even belly breathing if it’s too forceful. I think a lot of us guys are highly sensitised and we have to start off slowly.

Admin comment: All positive signs, excellent.

[European]

Juan Milo, I thoroughly re-read your journey from last autumn, I feel a lot of empathy for you, buddy. Many conclusions regarding anxiety, OCD traits etc. are similar in my case. Basically, the behavioral patterns you described are many times part of the big picture and sometimes are not completely avoidable, even with specialised therapy. My general CPPS opinion is that you have to beat this enemy on various fronts: PT will help you with trigger points and muscles but anxiety related components you have to beat alone because only yourself know which masquerade they use...I am also heavily struggling with flare ups induced by ejaculation what makes this situation debilitating is that you never know which slightest details decide whether your ejaculation is uneventful, will produce some discomfort or lead to heavy flare-up. it is real coin toss so I try to drastically limit the number of ejaculations (which is probably also not the best way how to approach it). Because if I skip ejaculation for two months my body recovers but the next one is highly dangerous regarding flare up. As I write in my thread, I had 10 months without any substantial problems, even after (quite limited) ejaculations or long driving. My body felt completely normal, at least without that neuropathic burning. Now I am battling another flare up, but I am confident that one day my painless days will arrive again.

[JuanMilo]

Hi Webslave, I’m in a bit of a rut at the moment after overindulging in sexual activity. As you may remember I’ve had issues with the veins being bulbous and sore on my penis ever since this began. The other night whilst masturbating overly vigorously, one of the veins began to get sore (a burning type pain), as this set off while masturbating, my urethra burnt at literally the same time as the vein burnt (literally simultaneously) - which says to me it’s based in the nerves. I have to admit to freaking out a bit and worrying about why on Earth my veins have been sore and bulbous for so long. For the longest time I’ve just ignored and dealt with flares as they came and went without even really bothering about CPPS, but this has worried me a little bit. My penis is now quite sore, particularly on the veins. I remember seeing a uro a while ago who suspected something was ‘backing up’ circulation and wanted to do a cystoscopy to check for growths and carry out a ‘brutal’ prostate massage (his words, not mine) - needless to say, I wasn’t too keen and I didn’t follow up on it.

I was seeing a PT, which did help for a few days at a time with urinary pain, but she only wanted to see me once a month. I’m a long hauler with this now, I’ve had it over ten years. That said, things have been pretty stable and I wasn’t anticipating some flare like this which is quite unusual. I’m back on the PEA and quercetin - any other tips?

I hope you’re holding up okay.

[webslave]

The "bulbous" blood vessels are only a sign of nerve-mediated inflammation. The inflammatory response increases the amount of blood flow to the site to get more nutrients and white blood cells to an area. To increase blood flow to the area, the blood vessels get wider (dilate) and become more permeable. You can also see this response in complex regional pain syndrome (CRPS). If you masturbate too much or too vigorously, you are provoking the condition, which mostly lies quiescent, to flare up. So rest the area. Other than that, follow the Tips thread in the Facts subforum.

[JuanMilo]

Thank you webslave, everything you say is completely logical and when you’re in the middle of a flare it’s hard to think logically at times. I’ve taken a break from masturbating, meditated, gone for walks, started back on quercetin and PEA, met up with friends and done things that otherwise take my mind off the issue and I’m already much better.

I have to be honest and say that think it’ll be hard to be one of the people who make a near complete recovery. Treatment here is abysmal in the UK and even with good treatment I think I’d need to be consistently well disciplined over a long period of time. I’ve been managing this condition for several years and I’ve been doing okay, it’s just that this flare took me by surprise.

I really appreciate it everything you do

[JuanMilo]

@European:

Hi European, I’m sorry I never got back to you! I haven’t been on this forum often for a few years. I appreciate your message and I hope you got through that rough flare and are feeling better now. This condition is very up and down for men like us, it isn’t a an easy ride. I hope you’re doing well

[mshaqal]

https://www.theguardian.com/society/202 ... ronic-pain

[JuanMilo]

Because of the fact this has been going on for so long, I’ve decided to go back to the uro, just in case something was missed that might be easily treated. As part of that, I had to have a prostate exam at the GP’s office today. My prostate is definitely sensitive/somewhat painful to the touch, although it’s not ‘jumping off the table’ pain, just fairly strong discomfort. Is this a normal part of CPPS? Having some residual pain after the exam.

For the past year or two I’ve been having a lot of back door issues, so I haven’t been able to use my wand for pelvic floor treatment. That said, I have some dilators that would be much less heavy duty than using the wand to stretch. Do you think these could be useful for home PT?

Thanks for everything you do Webslave, hope you’re doing alright.

[webslave]

Yes, a small, tender prostate is common in UCPPS. Also, pressing on the prostate puts pressure on the insertions of the levator ani muscles, so it's difficult to know where the pain is coming from, prostate or muscles. Your problems with the back passage could be the source of the hypertonic pelvis. It's like a system of dominoes, when one falls, others are affected. Whatever you need to do to cure the rectal/anal issues, do it, including surgery, is what I would suggest.

[JuanMilo]

Thank you very much Webslave. PSA reassuringly came back at 0.6 ug/L. Waiting on an ultrasound of the area and I’m going to see colorectal about the back door issues. I’ll get using the dilators in the meantime. Thank you very much, I really appreciate everything you do for CPPS patients

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