My story from holding to long urine
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Author:  Jiskefet [ Fri Jul 06, 2018 7:02 am ]
Post subject:  Re: My story from holding to long urine

A year later still the same problems.
I have a few good days followed by a flare up for a few day to a week, this has been the case the whole year.
Does anybody know how to stop getting flare ups? I know there's nothing broken and i don't have an infection because i have good days.
But why do these flare ups keep coming back?
On the good days i'm happy, but when a flare up comes it's devistating (wanting to kill myself).
I still can't forgive myself for not peeing when I had to go. Knowing it's my own fault.
@Poke how are you?

Author:  Jiskefet [ Tue Jul 10, 2018 7:28 am ]
Post subject:  Re: My story from holding to long urine

What is the best way for reducing pain in the perineum, is this physical therapy/stretches?
I've been to a physical therpist for a couple of years now, she said that the tension in the pelvic floor is a lot less.
She can feel the contractions and letting loose of the pelvic floor better then a year ago.
I still have the pain in the perineum, not the golf ball feeling anymore but tightness/burning.
Is it still a matter of time?

Author:  Jiskefet [ Mon Sep 10, 2018 7:30 am ]
Post subject:  Re: My story from holding to long urine

This week is my celebration of 4 years of hell.
There's a bit better flow of urine the pain and burning still there.
Trying dry needling again, but i think it's the nerves are damaged or overly sensitive.
Don't know if i'll ever get better, still having a little bit of hope.
If the hope is gone, so am I.

Author:  presto423 [ Sun Sep 16, 2018 1:33 pm ]
Post subject:  Re: My story from holding to long urine

Jiskefet, I still have pain/burning in perineum, but rarely the golf ball feeling. So similar to you in regard to those problems. I have gone to physical therapy for several months now, and did last year too. My visits may be up sooner than I know, yet I may be able to get more. The few problems I have with therapy are 2 or 3 of the exercises I think exacerbate pain/discomfort, all the stretches they do are for 60 seconds (which I think is too long for me, 30 seconds would suffice easily), and it is not addressing the connection between my gut and prostatitis/CPPS problems. They also have me spending too much time not getting massage some visits (ride a stationary bike or do exercises for around 7-10 minutes, E-stim and hot towels for 10-15 minutes, and waiting time all adds up to half of the session not receiving massage, which I think is the most effective aspect of therapy). Plus, if they did 30 second stretches, it would cut stretching time in half and leave more time for massage and trigger point release. I'm considering going somewhere else, but it may not be different. So I think I'm going to talk with the lead therapist.

How is the dry needling going? What medicine are they applying to the needles? How much is it costing per visit? I have Medicaid, which doesn't cover acupuncture. It's weird, it covers chiropractic, but not acupuncture. If I ever make enough money, I'll buy my own insurance which covers almost everything lol.

Author:  Jiskefet [ Tue Sep 18, 2018 8:00 am ]
Post subject:  Re: My story from holding to long urine

presto423, I can do all the stretches without them causing more pain, my pain is building up during the day. This is why I think my pain is caused by a muscular problem. I live in the Netherlands and have national health insurance which covers physical therapy, the sessions are 30 minutes and cost € 55,-. There is a limit number of times you can go in a year, after that you have to pay for them yourself. The dry needling is done by the pelvic floor physical therapist, so it counts as a normal therapy session. In therapy i only get massage internal or external, sometimes with TENS. My stomach muscles are very tight and that is why they want to do dry needling. There is no medicine applied to the needle, they just stick the needle in the trigger point. This can hurt really bad but only lasts a second or two.

Author:  presto423 [ Sun Sep 23, 2018 6:32 pm ]
Post subject:  Re: My story from holding to long urine

The sessions I'm covered for are 60 minutes, and I have Medicaid, or gov. health insurance. I live in Michigan, which has a plan of its own that I'm under. Yet I also have a provider, United Health Care Community Plan, which all falls under Medicaid, I think. Interesting that acupuncture is not covered here. It really boggles me how insurance is sometimes. It's also interesting because I don't get an increase in pain from stretching either, yet it can cause exacerbation of the pain if I get too much stretching or it's done too far out of limits of my tight muscles. My muscles often tighten up again from one week to the next, and they've tried to tell me it's because I'm so inactive and I don't do the stretches every day at home. But I think that isn't entirely the case. If I stretch every day at home, and don't do much exercise, then it's not going to help much. I think stretching needs to be supported by motion based exercise, not simple walking, and not weight lifting, in my case. Those two worsen my pain and problems. I'm so not fit that I get short of breath walking up a set of stairs often and need to sit and rest, yet I can pressure wash the side of a house for two hours or so and get through the shortness of breath without having to sit down until I'm half done. I think my problem is nerves and muscles that are misaligned with my circulatory and respiratory systems. I was at therapy 3 days in the past two weeks, and was sweating profusely while sitting to wait for my session, and during the session while laying on the table! I've never encountered that before in therapy. CPPS messes with things in inexplicable ways.

Author:  Jiskefet [ Tue Jan 08, 2019 7:16 am ]
Post subject:  Re: My story from holding to long urine

I have just had two weeks of vacation but stayed at home, in the second week all complaints were gone.
No pain when sitting and no urgency, I was so happy.
Yesterday back to work and after two hours the pain and urgency returned.
So now I think it has to do with stress and sitting, I can't relax the pelvis whatever I try.
Last week I could not bring the pain back, even when I sat on a couch or hard chair no pain or urgency.
Also the urinary stream was great, the best in years.
Hoping this is a good sign and eventually things will settle down when i'm at work too.

Author:  Jiskefet [ Thu Jul 18, 2019 2:56 am ]
Post subject:  Re: My story from holding to long urine

It's been half a year since I posted on this forum, progress is still very slow.
I have days when the urination goes a lot better, at a certain point it went so well I thought the end of the pain was finally in sight.
The situation is now as follows, after a few good days I always have a day on which I have to pee a lot and very often.
After this day the burning and pelvic pain start again and I have to wait another week in the hope of another good few days.
Bowel movements are also still problematic.
I had a moment a while ago, I thought I could post here that I was healed, but unfortunately this is not the case.
Will there be light at the end of the tunnel or is this how I have to struggle through the rest of my life?

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