CPPS is taking my life from me (Brett's Case)

[webslave]

Breathe with the stomach, not the chest.
viewtopic.php?t=1174

[BrettP]

Have some good and bad updates. I finally was able to prove to myself that alcohol is causing issues. I had three good days, no pain. Then had some sake. Instant pain. I felt the bladder and or colon cramps starting.

I'm going to abstain for alcohol for an entire week and see what happens.

Embarrassingly enough.... I bought a butt plug. And I must say, that using it to help release the pelvic muscles has been nothing short of a success.

The other night I used it for about twenty minutes, got it in at ten minutes and sat there and did breathing. My muscles did relax effectively. After I was done just kept relaxing the muscles. Seemed to help. Felt good the next several days.

Flash forward to yesterday. I drank and then came home and rubbed one out. Immediately knew I made a mistake but hadn't ejaculated in 4 days. I had the most dysfunctional and painful orgasm ever. It was terrible. Pleasureless. What followed today was the classic symptoms from hell. Did some spa and relaxed which helped. Decided to try the plug again. Once again. Relief. Couple hours later decided to ejaculate. So I did. Not painful, but not good. My muscles were relaxed from plug, but my prostate felt like it was full, hard to explain. So I'm just sitting here and waiting to see if it gets better. Hopefully the plug has helped some. It forces you to relax and hold the relaxation, and also massages. I guess its like the wand in a way.

The pain was bad today I could feel all the muscles short and tightened. Ehhh. So draining.

Penis tip is sensitive, but I need to start being sexual again soon. I always get relief from intercourse.

Not so much from my right hand.

[Jann21]

Wow. Embarrassing to say but I have considered buying one myself as well. I have noticed the same relief with inserting a finger for couple minutes. The relief has been instant and it seems to break the rectal spasm. The relief is short living, maybe 1-2 hours. So I was wondering if using the plug for 10-20 minutes could deliver better results. As I see it is working for you so I might even try that.

[BrettP]

Listen man. Get rid of your fear of embarrassment. Lol rather buy a device than be in pain. What I have learned.... its just an ass. Trite but true.

[Jann21]

Thanks mate! Btw. What's the size of this thing you are using?

[BrettP]

Like the wand. Kinda but softer. There should be some pics somewhere on here. I think the idea is the same. Its almost a biofeedback tool.

[Nick]

Great discovery. I have tried a butt plug for the past 2 days and I have had less pain than normal. I can't use it for too long though as it gets a little sore. But, after it is out things feel quite good. Early days so far but promising.

[BrettP]

Things are def looser down there. This last flare up though. Its weird, there is like this urge to ejaculate . Have not done anything for a few days, but this urge I feel is like I need to ejaculate. Not really pain per say, but more annoyance. It is however associated with tip pain and bad flow, start and stop, etc.I have been doing more of my own therapy. Massage, etc. So maybe this is from being more active with the therapy? My ejaculations when I do, are still missing pleasure and rather dysfunctional, however, seems to be slightly better. Just worries this flare won't stop. Also.... once I do masturbate I feel better for a while.

[BrettP]

Well. I have to say, I seemed to be able to relax my muscles using the things have described, but for whatever reason I am still flaring up. The muscles around the prostate, which I can't or don't know how to reach, are squeezing the bejesus out of my prostate and its very hard to urinate. No matter what I try. Also I know there is some lower abdominal involvement, the muscles are so so so sore when I do the cobra yoga pose as mentioned in A HEADACHE IN THE PELVIS. I have just accepted, and figure while I'm employed I'm going to take advantage of my insurance and go back to therapy. I have an appt for 7AM tomorrow morning with Bonnie in So Cal. I never wanted to be here again, I really had things under control. Whether it was my divorce, or if I screwed myself up with self massage I don't know. But I felt good for a while, for a long time I was able to manage the symptoms through various methods. All mentioned on this site. But now I'm having a week-long flare and its the worst I have had, that or close to it. It's just a very dark time. I have worked very hard on my anxiety, and accepting my anxiety and learning to live with it and not letting it destroy me and take me down those dark roads we all know. But today I must admit that I have failed to uphold myself to my own standards. I have started catastrophising, something I haven't done in a while like I am today. And I need help. I also asked my urologist for Elavil low dose, will start that tomorrow. Thinking of taking a large dose of benzos to break the spasm, but I'm already kinda immune to those things. I don't know what to do, hopefully I will get some relief soon. I think I have also decided to attend the Wise Andersen protocol. Money is not really an issue for me, just pain, and the desperation of wanting the pain to go away at all costs so I can move on with my life, meet a lovely woman and start my life over after divorce. I feel I can't do this while trapped in this mire. Wish me luck. Been a long 4.5 years. Only seems like its getting longer.

[webslave]

I have also decided to attend the Wise Andersen protocol

From your location, this is a good decision, Brett. I think you've struggled long and hard enough ... time to get some quality help!

[BrettP]

I'm just worried it won't be worth the investment. I guess I see no exit from the suffering at this point in time.

[webslave]

I'm just worried it won't be worth the investment

Odd statement to make right after saying "Money is not really an issue for me".

You've been thrashing about inconclusively for 17 pages in this thread, so I'll lock it now and when (and if) you get back from the clinic, email me and I'll unlock the thread.

[superuse]

Of course ... be careful. Might be another post with another one around...
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[BrettP]

I have just fell into two consecutive flares after a really decent period of time, and am desperately trying to get these bastards under control. Things weren't routinely bad, and for the most part, I felt pretty good for a long time.

Just the last month or two I started to have trouble again. It is taking a different form. My anxiety is not as bad and the catastrophic thoughts aren't really there anymore. I am stretched pretty thin, but I am also not nearly as stressed as I was when this got bad after my divorce. I generally find I have two stressors, work, and my personal life where women are concerned, these two spheres are the things that perpetuate 90% of my anxiety and pain.

My current symptoms are as follows:

Ache in the muscle directly next to the prostate on the right side. This causes spasms and difficulty urinating, it just does not function properly. As taught by my therapist I run my finger in there and feel around like she did. On the left side I hit all the spots and insertions where that sling muscle around the prostate connects to the other pelvic floor muscles and the prostate, and the very tip (top of the prostate where the levators combine). The left side recreates minor pain and nothing that is like "wow that's bad"

When I hit the top on the right side, I can recreate the feeling of the tip of penis -- generally a few second on this and the muscle turns to mush and I can't feel anything anymore. Then, further down that sling of muscle it is just hard, like hard rubber with lumps in it. The lumps create that burning aching sensation when pressure is applied -- just dreadful pain, and I believe are behind all the bladder symptoms. I concentrate on my breathing while I am in there. Sometimes I get relief sometimes not. What position do you guys get into? Lately I have been lying on my sides.

The right side is the issue, and I also have the pain in my thigh which can be quite annoying.

My question to this board is this, I reread the anatomy in HITP, and it says these are all the chronic spots. Is it normal for these spots to also create a burning sensation in the thigh, did not say in the book? I don't feel like I am doing it right anymore as I can't seem to break these spasms. I am going back in to my pelvic floor everyday starting today and I'm going to massage every muscle I can with my finger.

I have contacted my PT again to see if she can help shed some light on this with some kind of trigger point map. I am a bit discouraged after such a long run of minor symptoms and now to have had a couple of serous flares. What is the strangest thing I think to me is that I can FEEL that the knots are in the muscle and I can feel them radiating pain throughout my pelvis, I know where the spots are but no matter the amount of pressure or massage applied, it just comes right back.

It's just been this....

[BrettP]

I have a crazy update after all these years. Thanks for webslave holding down the fort!

For the past many years CPPS has still been a challenge but easily countered and for the most of these years issues were so minor that I did not think of it much. Did not treat it much, did not need to treat it.

With that said last 16 months I began to get pain again resistant to treatment. Many years ago I would get pain in the thigh and groin and these horrible flares that were hard to control and that took days and days to settle down. They were all the same, and I would get them on the RIGHT side: horrible frequent urination, pain in iliacus area, pain in thigh, and sometimes pain radiating to heel. I always chalked this up to CPPS. However when I began to have the same problem on the left but much more severe I started to ask new questions.

It took about 1 year of intermittent flares and 4 MRI of my hip, however, I was finally diagnosed with a labral tear of the hip socket, and chronic scarring due to repeated fraying and tearing. Additionally the cause was determined to be due to a femoral retro version 25 degrees beyond normal (I walk like a duck). This put stress in the joint and accelerate the wear and tear along with a cam lesion due to repeated wearing in the joint as all of this has led to hip impingement.

The worst of this is the pain deep in the iliopsoas region where it connects with the adductors which spawns so much pain and urinary frequency. No stretching helped, no massage helped, protocol did not help.

About a week ago they injected my hip joint with lidocaine and a steroid. My pain dropped about 85% or more and when the lidocaine wore off, the pain worsened considerably before improving some, proving to me that the hip joint is the cause of my pain.

Additionally to this, and the drs refuse to agree, but I believe that given the hip is destabilized to the joint function, it is putting pressure on my obturator internus which is causing the symptoms of OI problem: frequency, urinate issues, bowel issues (I literally struggle to have a bm, my body simply doesn't function well). Drs don't think it's related but the symptoms come together so I think they are.

The only long term treatment for my hip joint is arthroscopic surgery to repair the joint but the Dr also wants to rotate the femur with a rotational osteotomy. Obviously it's a big deal but is convinced this will give me a durable long term recovery.

That's my update surgery is scheduled in a couple months.

Current symptoms of this constellation of issues: full bloated feeling in lower left side that feels like “IBS”; impaired defecation like my bowel does not work normally due to the spasm in the left side of pelvic floor, feels like the left pelvic floor side is “higher” than the right side and unable to reset to baseline easily, bowel movements are this difficult and require pushing most of the time hard as rocks, bowel movements cause the urinary frequency to start at times when it's flaring bad, classical pinching feeling in hip, deep ache in the iliopsoas, adductors and any activity makes it worse.

Admin comment: See https://pubmed.ncbi.nlm.nih.gov/32828869/ ... the hip joint can be a problem. Get it repaired.