My case: primarily walking pain

[antmanbird]

Dear everyone, I will lay out my case and welcome any insights and tips into it. Thank you!

How it started, progress (8 months in)

phase 1: back pain / stress followed by perineal tightness. I had a bout of back pain which got me scared it was disc-related (I tend to overthink these things). I had trouble walking and started doing some exercises and corrections to help get it better: a PT suggested these were bad for the pelvic floor. After a very stressful period (selling an apartment) during which I ejaculated even more than usual (usual=1-2x a day; this time 2-3x a day) I came back home and soon started having massive tightness in my perineum. Hard, super tight perineum, weak peeing, forget masturbation and sex. Couldn't sleep for a while from pain, couldn't stand too long nor walk too much. Doctors said it's nothing (urine test, finger test). It got better with rest, and conservative exercises from physio. In 3 months I felt normal.

phase 2: visit to the urologist triggers panic. After that I had two milder flares, one where I drank a lot, didn't sleep then walked 4 hours. Mild symptoms after that, just couldn't walk that much. Then another one after also walking and drinking. This all brought me to the urologist 6 months after the start. He diagnosed me with "acute prostatitis" (I know, silly) and gave me Ciprofloxacin and Alfuzosin. I started reading about the condition and the antibiotics and this got me into panic mode. My symptoms worsened: burning-like pain, like sitting on a rock, pain sitting.

phase 3: post urologist and two flares. After trying Cipro and feeling bad on it (almost removed pain, but gave me insomnia and chest pain) I changed to Bactrim and stopped Alfuzosin. 4 weeks of that and nothing much changed, except I 1) hurt myself lifting a bathtub and 2) panicked when I needed to go for a trip. I was worried I would get immense pain sitting on the plane. I cancelled the flight and gave myself another flare.

Current symptoms.

• pain when walking. It starts like nothing then gets worse with time. At max in the last month I could do 5k steps (15-20mins) without pain. Pain is not excruciating, but also I do not go there, I stop before.
• pain when sitting on the perineum. I'm not sure how bad since I avoid sitting and just sit on my butt cheek, stand or squat
• (sometimes) weak erections, mild pain (or tiredness) when erect
• (rarely, but yes these days) mild pain in bladder 1h after peeing. No big urgency, stream is normal, no pain when peeing. Just a feeling like my sensor for when I need to pee.

I feel like I have two types of pain:

1) burning, inflammation-like in the perineum
2) sitting on stone, more tension-like

And like stress gives me 1 and muscle usage or tension gives me 2.

Diagnoses from specialists.

Urologist: acute prostatitis. PSA, leukocytes, uroflow is normal. Said prostate was tender, and gave me diagnosis based on that and trans-rectal ultrasound.

Pelvic floor physiotherapists: two of them said I have a tight pelvic floor. One said that "you can tense it quickly but relaxation is slow". And "you never get to ground floor (normal tension). You're always at least on the first floor"

What makes it worse, what makes it better

Makes it worse: Stress, walking, exercise especially squat-like or deadlift-like things. Gets worse with the day, no pain in the morning
Makes it better: lying down, stretching, relaxing, pain killers (Ibuprofen)

I also take quercetin (Now Foods) and Graminex bee pollen. Not sure if it helps since there are so many factors that are changing all the time.

Questions

1. does anyone have walking pain? I am surprised how bad this was and is for me (and impact on quality of life). And how it changes: in April I could walk normally, today I couldn't walk to the store without pain. What does this suggest?
2. I feel like I would develop new symptoms from stress... even like the urologist diagnosis gave me a feeling like my prostate hurts. Does that sound common? And the pain changing so much? (At some point I could sit but not walk. Then walk but not sit. Now both).
3. sometimes it's so bad, that even if I lie in a car and my butt is shaking this gives me pain. This was for example after that last stressful episode. Does this sound like nerve pain or could it still just be muscles?
4. can ultrasound and good 'ole finger in ass really detect an inflamed prostate? My uro I guess thinks so, but another uro told me no.
5. would it be useful for me to do a prostate excretion test or is it a waste of time?
6. any suggestions on what to do besides what I am already doing? (PT, Quercetin, Bee Pollen, stretches, relaxation including meditation)

Many thanks! And especially Webslave: you are giving hope to so many. Just by reading this forum you've done way more help than my urologist. I admire the impact that you are making.

[antmanbird]

Forgot to add another symptom: my ass clenching when moving my body (when I wouldn’t expect it), when something sudden happens (eg I play PS4, character falls, my ass clenches). I guess this is overactive pelvic floor. I get twitches sometimes (fasciculations, not painful)

[webslave]

1. I had terrible walking pain. I used to walk like a very old man at my worst. Today I have no walking pain. So be optimistic!
2. Stress is the prime trigger for this syndrome. Not all sufferers have it, but it's the norm. Symptoms do change over time, and wax and wane.
3. It's muscles and nerves. And brain! https://ucpps.men/viewtopic.php?f=53&t=9341
4. Usually an inflamed prostate is tender during a DRE. Ultrasound may not be able to see it because "small, firm and tender" is the typical finding.
5. A waste of time
6. Add in palmitoylethanolamide (PEA) available from Amazon or Walmart. And follow the tips: https://ucpps.men/viewtopic.php?f=53&t=9338

[antmanbird]

Hey Mark (Webslave), how did you address your walking pain?

And for others (and posterity): initially I got symptom free through ordinary physiotherapy aimed at mobilizing and strengthening my back. I did stuff like bird dog, bridges and cat-cow. If anyone is interested I can write the whole setup. My physio emphasized how I have to exercise, then release. Tension, then relaxation. He didn’t think back then I needed a pelvic floor physio. But also my symptoms were more broad: tension in back, glutes, pelvis, lower abdomen... it got focused on my pelvic floor only in the last few months.

[webslave]

The walking pain is merely a symptom of painful muscle spasms and inflammation. You address it by applying all of the strategies we discuss here.

[antmanbird]

(Hope this helps anyone experiencing similar symptoms, and ask me anything if it does. And thank you for the support)

Update 1: urinary symptoms. I've continued having a urinary symptom: 1h after peeing I'd feel like I should go pee again. Or more precisely, my bladder would feel tired, like I have held pee for too long. As if my bladder “sensor” has gone haywire. This would come and go. For example, I went to a pelvic floor PT, she reassured me and my symptoms were gone. But my damn anxious mind didn't let me go and at some point I started feeling a light sting at the end of the pee, esp in the morning. Went to the GP: did a rectal examination (nothing), urine stick test (nothing). Sent me home and told me to chill.

Update 2: false bacteria alarm. That same GP office called a few days later and said they did a better test and found bacteria. And I was boarding a plane (to go and chill!) Anxiety super high, symptoms go up. My throat felt tight and I was constantly reading this forum and other sources.

Then I did a 4 glass test (ejaculate + pee). And another urinoculture in another lab (I didn't really need this one, but it was bcz I didn't know 4 glass was possible). BOTH SHOW NO BACTERIA. I am calm now. I am done with my bacterial hypothesis, thank you very much. My urinary symptoms disappeared after I got the results. And I approach the little flares with more peace (just had one because of a light ab exercise).

BTW on urinary frequency:
“…day frequency without nocturia, or frequency lasting only a few hours at a time suggests nervous tension or a psychiatric cause. ” https://www.ncbi.nlm.nih.gov/books/NBK291/

What am I doing

1. Taking time off work, chilling. Playing Baldur’s gate 2
2. Going to Enkhuizen (the Dutch pelvic clinic) mid October, I’ll post a thorough review
3. Stretches, doing the Overcoming program. Yes, I succumbed to it since they had a sale. Will post a review after I try it out some more (short story: good but overpriced somewhat)
4. Quercetine, PEA, magnesium, b-complex

[antmanbird]

These days I’m going a bit crazy as this issue takes on so many faces. I took a month off work, went to my mom’s place which is a lot more sunny than Netherlands. I hoped I’d get a lot better, but I only got better mentally (I’m a lot less anxious). Physically, maybe a bit better but the symptoms change so much that I don’t know what to say. Onto the questions!

1) Is it common for symptoms to wildly change? One week I had urinary frequency (feel like peeing after an hour, some pain when bladder fills up), the other I had a heavy golfball feeling (like feces is stuck inside), then I was back to urinary one day. Tension and pain moves: sometimes in the rectum, sometimes perineum, sometimes more forward. Also erections are great some days and I get a lot of morning wood, other days they are weak and holding an erection is tiresome and slightly painful. And these would change sometimes within a week, both in quality and intensity (from 7 to 2 in five days).

2) Do weather changes exacerbate symptoms? I just recently noticed this. I get worse when the rains come, or if there is a lot of wind. happened 3 times in the last 3 weeks.

3) How worrisome is occassional dysuria? Yesterday I went for a small pee before sleep and it burned the worst so far. During and after peeing. Kind of like I’m peeing sand or something acidic. Today it’s gone. I’ve had mild dysuria maybe 3-4 days in the last two months. I’m starting to wonder if this signals prostate inflammation that then goes away.

Thanks

[webslave]

1. Yes. This syndrome is famous for 'waxing and waning'. Pain with bladder filling is a sure sign of IC/BPS, so your bladder is inflamed, a least a bit. The ultimate cause is your hypertonic pelvic floor that inflames the bladder via nerve cross-talk.
2. Yes. Weather affects symptoms, because cooler weather increases muscle spasm. There are studies linking cold weather to symptom exacerbation. When there is wind, the wind chill factor makes the temperatures cooler, and the muscles react.
3. It's part of the whole picture. You have some inflammation in the bladder and apparently also bladder neck and/or prostatic urethra, hence the burning urination. I hope you are following the IC Diet!

[antmanbird]

Thank you, very much, for the answers.

Just to clarify: I get pain on weather change, eg when barometric pressure drops and rain comes. When this happens, I almost always get a headache that lasts for a day. Last month I got a weaker or no headache, but I had pain in the pelvis and sometimes these urinary symptoms. I wonder if there is a common cause beneath both headaches and pelvic issues, something like irritated nerves or inflammatory processes due to tissues expanding under low barometric pressure.

[webslave]

You are highly sensitive to your environment. This is a subtype of IC/BPS, called multiple sensitivity syndrome

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4250237/

[antmanbird]

Thank you for this link, you are an amazing source of knowledge.

I don’t believe I fit the description as I don’t have any clear allergies (except to fructose, but that is mild). I do have a sensitivity to the weather, a quite extreme one compared to people around me. I wonder if the barometric pressure and humidity changes function with me in a similar way as in, for example, with rheumatoid arthritis. I may be getting inflammation “where I’m weak”, which was usually my sinus cavities but now it’s down there.

Soon I am going to F-Act, the Dutch clinic. Will let you know how it went.

Also, I feel I had some success with heating pads (just started using them) and breathing exercises where you “inflate your pelvis” in a way. My physio tells me this stretches the pelvis directly. I’ll make a larger post about it soon.

Thank you for the support, truly.

[antmanbird]

Hi everyone, I wanted to update you on my results from F-Act, the Dutch clinic. I was very impressed and will be posting a review of the clinic to the "Therapists..." part of the forum. Here, I will talk about what they told me.

They diagnosed me as CPPS, thus agreeing with what I've heard from Webslave here (thank you!). My muscles are easy to contract but slow to relax. I have poor coordination of my pelvic floor muscles and cannot properly push them out (as when you're pushing out poop). The pain is a result of tension, and was exacerbated by catastrophizing - nothing new here. The fact that weather affects it? Probably the muscles and tissues expanding with barometric pressure. The urinary symptoms? Nerve cross-talk (again, something I heard about here!).

The really interesting part of the diagnostics was that they try to find the cause and treat it. My primary cause is faulty biomechanics, whereas secondary might be stress, too much masturbation and maybe a tight pelvic floor all along (which may have started when I had a bladder infection as a kid). They found all kinds of imbalances in my body. The most interesting finds are:

- when she tickled my lower abdomen, I was ticklish on the left side but not on the right (this felt really weird, like I was crazy)
- my diaphragm does not work properly, it is tight
- my right transverse abdominis does not activate, rather the bigger muscle does
- my left buttock has trigger points around the sit bones, the right does not
- my fascia is knotted up at many places in my body

Basically, I have a weak right side above the waist, and a weak left side below. I have noticed these asymmetries even before I had pelvic floor issues.

She explained that my pelvic floor (and my diaphragm, and various other muscles) have been trying to do too much. She compared my symptoms to freezing water. Water can drop in temperature and still look like water until it reaches zero degrees. After that it turns to ice. My muscles did the same: I was asymptomatic until they gave up.

Thing is, my issues might have started a long time ago and cascaded downwards until they hit my pelvic floor. This is what I suspected all along so I agreed with this assessment. What had me believe that was that it started with back pain and that my pain was initially aggravated only by movement (walking, standing, exercising).

The cure? Mostly physiotherapy. I will be going there soon to get exercises that I can do at home. They are big believers in self-healing. I will tell you how it is going!

[antmanbird]

And I have a question: I called my urologist and he told me that my prostate is "slightly enlarged" (it is 32cc, my guess is that 30cc is the cutoff but I'm not sure). The urologist said that the prostate might go down in size when the muscles stop pressing on the "prostate capsule".

1) Could this be giving me some issues, eg with slow urine flow and bladder pain? (though this does not happen all the time).
2) Did anyone get different readings on prostate size on two occasions?
3) is 32cc unusual (I'm 35)?

Thank you, as always

[antmanbird]

Hey everyone. I wanted to post an update. I am doing a lot better! The pain is mostly gone and almost never appears unprovoked. And I am on a fast upward trend where I get better for a step or two every around 10 days. What do I think led to this? Most of the things that are talked about here, but let me first split my recent recovery (last two months) into four phases and what I think most helped me get to the next phase

1. stopping catastrophizing because I did semen testing and went to F-act clinic. This allowed me to focus on solutions!
2. relaxing the pelvic floor: stretching! Every day.
3. waking up the surrounding muscles with exercise, especially the transverse abdominis (deep core muscle)
4. walking and exercising more. Now what gave me trouble before (walking) is helping. I can also sit more. This allows me to enjoy life more, but I am still very careful not to do too much

So what is my program at the moment?

- physical: stretch every morning for up to 1h, do exercises like leg lifts, bridges, etc, go for massage 1x a week
- reduce stress: work less, be ready to drop things if I feel tired, I shifted my perspective where I am number one to myself
- pelvic floor direct work: I drop the pelvic floor whenever I feel tense, I do breathing exercises around 5 times a day (breathing into the pelvic floor). With time I developed a better awareness of the pelvic floor with this
- relaxation: take baths every few days, take alone time, listen to music
- heat therapy: I use a cherry pit pillow that you can heat in the microwave every day in the evening or as needed. This works great!
- supplements: not much atm. I take PEA and magnesium. I uses to take Quercetin but stopped 10 days ago. Who knows if it works, but I wouldn’t be surprised if PEA works. I’ve been taking it for more than two months now.

It’s a lot, a real shotgun approach! I’ll keep you posted how it goes. And feel free to ask me to clarify anything.

[Slangsta24]

Hello antmanbird, i would be interested how you are doing by now? I am also considering the F-ACT in the Netherland but wondering if it is really comparable to Wise-Anderson-Clinic. What did you pay in total? Main issue for me is the expensive and all long flight to the US, which I want to avoid but dont know any Wise-Anderson-Clinic in Europe....