29 y/o, what to do next?

[a94]

I’ve always been living a mostly sedentary lifestyle. I could game for 10 hours+ per day and I believe this has onset my symptoms. A few months before this all started, I suffered from tremendous pain at the very lower back / in the anus. Sitting was very painful and this lasted for about 1 month. It almost felt like a warning sign looking at it from now.

I suffer from IBS, but flareups of that condition are rare now that I watch out more of what I eat.

Afterwards, February of 2021, symptoms more in line with UCCPS came. The onset occurred at nighttime. I’ve been suffering from several symptoms mentioned on this forum since then:

- Pain that gets progressively worse as the day goes on.
- Pain on erection.
- Pain after masturbation.
- Burning at the tip of the penis.
- Touching / pressure on the urethra in the middle of the shaft.
- Pain near the groin.
- Feels as if something comes out after peeing sometimes (urethra closing?).
- Some twitching I used to not have (eyes & legs).

One most notable symptom which concerns me is that there seems to be dark flakes in my urine. This happens very infrequently (once a week), and are painless to pass. However, I am unsure if these are from the toilet bowl. An echography ruled out kidney stones.

I’ve done two urinalyses, both came back with nothing at all & blood tests for kidney functions came back alright too. No antibiotics were prescribed. A third one was done at the hospital for another issue I had, and it back with traces of Bilirubin & Ketones (although I was kinda dehydrated from waiting 8hrs+). The blood tests there came back with inflammatory markers.

Flareups occur about every 2 weeks, and last about a week.

What I’ve tried so far:

- Quercetin & Fish oil: No noticeable difference.
- Myofascial release: Through a PT. She diagnosed me with Pudendal Neuralgia. The therapy did provide great relief.
- Standing desk: Appears to be a great aid.
- Stretching: Leg bridges help provide immediate relief.

What I know does not help:

- Kegels: They can get extremely painful.
- Sitting too much. With a cushion or not, it doesn’t matter.
- Any straining from the pelvic floor: A sharp pain radiates from around the bladder, especially later on in the day.

Vices / things I know do not help. These are mostly habits or things that help get through the day:

- Lots of sitting: This is still hard for me. I have huge difficulty breaking this habit.
- THC: Started after discomfort began. Seems unrelated to flareups.
- Tea / Coffee.

My biggest issue is with Health Anxiety. I cannot help but think it might be something else as few tests were done. The black flakes worry me a lot. Although it most definitely is not an infection, would pursuing a diagnosis help me in any way? Since this appears to be a diagnosis of exclusion, which conditions should be ruled out?

I think if I had answers to these questions it would help tremendously, as I could then tackle this issue with 100% certainty instead of thinking it is something more malicious. Or perhaps I should seek outside help to control my health anxiety?

Thanks for your inputs. I've been silent for a while, but this community has been a great aid for seeking what I have and what might help.

[webslave]

Easy one.

1. Stop sitting, stop gaming, get away from the computer, change your lifestyle. Do this for at least 5 months. This alone could cure you.
2. Make sure your urine is always a light straw color, in other words a faint yellow color. Dark yellow or orange is a big no-no. So drink lots of water (I drink cold chamomile tea sweetened with sucralose).
3. Take long walks (1 hour), excellent to relieve stress, control anxiety and relax hypertonic pelvic floor.

Report back in a few weeks.

[a94]

Thanks for the prompt reply. I cannot promise myself I won't play games, but I'll at least shift to very relaxing ones as I noticed my flareup started with ARPGs, which are very intense games. I'll use the standing desk as much as possible & give long walks a try. Sitting is the thing I want to avoid as much.

[a94]

Fast-forward a month, here is my progress: I've been standing up entirely at work and not sitting at all. My father passed away 3 weeks ago so I took a few 4 hours back & forth rides to my home town. However, sitting in the train/cars did not cause much symptoms (or rather none at all). What caused them seemed to be sitting in front of the computer & playing intense video games. As such, I simply stopped these games.

I've been standing up at work for 2 weeks now along with taking more walks. My symptoms seem almost entirely gone & there is no more persistent pain. I do get some burning sensation while peeing sometimes. I'll try getting a cystoscopy to rule out any other things, but things are looking positive for now.

[webslave]

Excellent. Video games are a scourge.

[Impressivesafe]

Glad to hear you have found a solution and apologies for your loss. It’s hard

[a94]

So more than a year later, here is a very positive update. I've done lots of research on this subject, this website being an excellent source and seen a urologist along with another PT. I haven't had pain for a few months, and have been able to get it under control very well. I've had maybe 2-3 flare-ups in the past year.

Here is what I found helped the most:

1. Pelvic floor stretches: Happy Baby Pose & Piriform Stretches. These are life-savers during flareups and in the few resurgences I've had, this gets it under control very quickly. There are TONS of stretches & finding the ones which work the best for you is very important.
2. Pelvic floor relaxation: This consists of always being mindful of your pelvic floor. As a blatant example, I forced to let out the urine - instead just let it flow out. In the day-to-day, try to relax it. After ejaculation, also relax.
3. Pelvic Wand: I now don't use it anymore, but it seemed to help alleviate trigger points.
4. Quercetin: Directly or indirectly, this being fibers also help have better stools & helps anal fissures heal.
5. Proper diagnosis: In this case, it was seeing a urologist who did a cystoscopy. This cleared my mind of the problem being a malignancy and allowed me to focus on treatment better. The cystoscopy was VERY painful at the prostate area which is normal for UCPPS sufferers.
6. PT: A good PT in that field is a godsend.
7. When it hurts, get up. Cushion your chair in another way, or sit in another way. Having a U cushion on my chair causes my initial pelvic pain, and removing it trades it off for lower back pain.

My pain now is mostly in my back, and I'm working with my PT to better my posture.

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