My Story

[Filofax]

Hello, I am 61 years old from Germany and maybe someone can help me? It all started 30 years ago with a bladder infection and it kept coming back and at ever shorter intervals. When I had a job with a lot of stress it got even worse until I was in pain for every day. An older urologist then found kidney grit or sand and when I acidified the urine with medication once a month it got better. And when I gave up sugar because of fructose intolerance it got better, but unfortunately it never went away completely. If I ate sugar for 2-3 days, the kidney grit/sand would appear and at the same time I would have pain when urinating. But I've always had that under control, until now.

I noticed over the last 3 years that things were slowly getting worse and at the beginning of this year I started getting a lot of kidney grit and pain. The pain after urination became more frequent and longer, up to 2 hours. The urologist examined everything, even a cystoscopy and found nothing organic. The statement was then that I had to live with it and not come around anymore. In May I had to take antibiotics for 10 days for a broken nose and I had no pain for 2 months. However, it came back and I had worse pain than before and an MRI revealed an inflamed prostate. After 21 days of antibiotics it went away for about 3 weeks and came back even worse. Now I'm taking antibiotics again and I still have pain for hours every day, which comes in waves. The doctor provoked the pain by putting pressure on the prostate and said that it was an inflammation. Bacteria are never found, so only inflammation.

I've noticed that I react strangely to sugar, 15-30 minutes after eating sugar my mood goes down, neck tension and sometimes slight dizziness like after alcohol. And it increased my pain.

Magnesium has helped me so far and stretching exercises so that I have to go to the toilet less. But otherwise nothing else, exercise is always good.

• I take vitamin D, B12, selenium and zinc
• I changed my diet to less meat and more vegetables, and no fruit at all because of fructose intolerance.
• I work standing at the height-adjustable desk
• I meditate in the evening
• I have Hashimoto's and my thyroid is well controlled.
• In the last few years I've also had problems with a bloated stomach and brain fog, but all my blood work has been good.
• Things improved with psyllium husk.

How long does it take for the inflamed prostate to calm down and what else can I do?

[webslave]

1. You are at an age when BPH symptoms can start to be layered on top of the UCPPS. Keep that in mind.
2. The reactivity to sugar is not unusual. Sugar consumption (specifically fructose) increases blood levels of uric acid (study) and causes a spurt of uric acid to be excreted via the kidneys/bladder/prostatic urethra, so causing discomfort to the inflamed tissues there. Avoid sugar (sucrose is 50% fructose). You may want to look at a low purine diet too, in case you have a tendency to gout.
3. Make sure you drink enough water every day to keep your urine a light yellow colour. This is important if you have a tendency to form little stones. You did not say if the "grit" is made of calcium oxalate or uric acid crystals. If uric acid, which I suspect, it's even more important to follow an anti-gout diet (link above).
4. As to what else can you do, start here: https://ucpps.men/viewtopic.php?t=9338
5. Also follow the IC Diet: https://ucpps.men/viewtopic.php?f=4&t=8733
6. Don't use antibiotics as anti-inflammatories, the way you are doing now. See https://ucpps.men/viewtopic.php?t=9339

[Filofax]

My prostate has enlarged significantly in the last 2 years, from 28cc to now 44cc and is inflamed.

Because of my fructose intolerance, I could no longer eat jam and replaced it with sausage, Serrano ham and salami. This is of course bad because of the uric acid and also histamine. I don't have histamine intolerance, but I suspect that I also have some problems in this area. My bloating and lightheadedness could be from that.

3 years ago I tried a vegetarian year and avoided gluten and the spreads and meat substitutes everywhere contained more sugar. This didn't bring me any relief as I replaced the purines with sugar. However, this has reduced my high cholesterol levels.

Despite my fructose intolerance, I ate something sweet every Sunday with the help of enzymes (fructaid), i. e. cake or chocolate. In the long run that was probably a mistake, at some point the body can no longer tolerate it and the prostate becomes inflamed. That and eating meat three times per day and sitting a lot are probably the cause of my current problems. Thank you for the valuable tips, sometimes I don't see my own problem.

Unfortunately, I don't know what material the kidney stones are made of as it is difficult to catch them. In June I had a white teardrop-shaped stone 4mm (0. 16 inch ?) long that disintegrated when touched. And it felt and look like like plaster.

Could wheat also be a problem? After I discovered that I couldn't tolerate wheat bread, I ate spelled bread and my stomach bubbly disappeared. Unfortunately, we have a lot of wheat pasta in Germany (my Family love it) and that wasn't a problem on vacation in Italy too. A lot of wheat products are also used there, pizza, pasta, etc. and I feel me better in Italy. Back in Germany the pain come back after one week of sitting 8 hours per day into the office.

Thank you again for the valuable help

[webslave]

1. If you crave sugar, use glucose syrup (no fructose) or other sugars/syrups that contain no sucrose and fructose. Or use sucralose.
2. You can go vegan, like me. Meat 3 times a day is extreme! Don't replace meat and dairy with junk food though.
3. If your stones are white and fluffy, they are uric acid. The typical calcium oxalate stones are hard and dark orange or brown. So it is as I suspected ...
4. You may well have a gluten (not wheat) problem. No wheat, barley, rye etc. No pumpernickel bread. I am also not able to eat gluten.
5. Make the changes and then keep us informed. Interesting case.

[Filofax]

yes, I will give feedback

greetings

[Filofax]

I have now reduced my meat consumption and am working on the theory that uric acid crystals can irritate or inflame the prostate.
To do this, I now measure the PH value of the urine to determine the acid load.
I noticed that I often have acidic urine.
Is there any experience in this regard?

[webslave]

You should alkalinize your urine with a urinary alkalinizer like potassium citrate (ask your pharmacy). Other measures include restricting animal proteins, eating an alkaline diet, drinking alkaline mineral water rich in bicarbonate, citrate supplementation (lemon or lime juice in drinks), diet rich in fruits and vegetables, potassium bicarbonate, even sodium bicarbonate (careful of the sodium).

[Filofax]

Now it is so bad... At first I thought it was the antibiotics, but in addition to my pain, I keep getting a slight cold feeling in my legs and then the skin on the inside of my thighs burns and it tingles all the way down to the soles of my feet. Where does it come from?

[webslave]

Cold sensations, tingling and burning sensations on the skin: these are neurological symptoms. Make sure you are sitting correctly and not putting pressure on nerves emerging from the spine. "Prostatitis" used to be called the truck driver's disease because of all the tense sitting truck drivers do, and it's also the computer programmer's disease, and in more recent times the computer game player's disease.

[Filofax]

I bought a gel pillow especially, maybe it's too soft and puts too much pressure on the surrounding area?
My back pain has improved as a result of this pillow.

[webslave]

I suggest making your own donut cushion.
https://ucpps.men/viewtopic.php?t=8652

[Filofax]

After 24 days I had to stop taking the antibiotic nifurantine because it made me sick. Chills and sweating at night, dry cough and headache without fever, I felt very sick. After stopping, the symptoms disappeared but my pain came back immediately. It's just bad.

[Filofax]

Hello, I have now been diagnosed with CPPS and I have a slightly enlarged prostate. She has about 43cc and PSA is 1.4, which is not very big. When the doctor examined me, it turned out that I have a spot to the right of my prostate that is causing all of my symptoms. The enlarged prostate is probably putting pressure on it. I can't even get to that point with my finger, and a pelvic floor rod didn't help either. My urologist prescribed tamsulosin with dutasteride in mid-December. That has brought about an improvement, but I still have a burning or stinging sensation every day. what else can I do? So far I've been doing stretching exercises, breathing exercises, meditation and light exercise every day.

[webslave]

Slight prostate enlargement is not important, PSA not remarkable. The spot to the right of your prostate is the insertion of the levator ani muscle, a notorious location for trigger points in a hypertonic pelvic floor. See a trained pelvic floor therapist if you can. Have you worked you way through the Tips page?

[Filofax]

Update on my situation:
In March 2024, I saw a neurologist and was prescribed Gabapentin for unclear neuropathic pain. I take 600mg three times a day, and it has helped me so far. I rarely had any symptoms, and the frequency of urination decreased. I had a much better life, and the issue of CPPS (chronic pelvic pain syndrome) faded into the background. Originally, I was supposed to gradually stop the medication in the fall. Then in September, I had a herniated disc at L5/S1 and severe pain, which overshadowed everything. After reducing the pain through physical therapy and exercises, the CPPS problem returned. Additionally, the heating in my office failed, and due to the cold, I developed constant pain. In the mornings, it was only 10-15 degrees Celsius in the room, and we heated it with a hot air blower.

The doctor advised me to increase the Gabapentin dose every 3-4 days, up to a maximum of 3600mg. I am now at 2700mg, and unfortunately, it's no longer effective, but I am experiencing side effects. I feel nauseous and become very psychologically unstable. Also, I have had kidney gravel for a long time, which irritates my urinary tract. For this, I take Blanel to dissolve it, and it is part of my problem.

After urinating, it burns again for a long time, and the pain has become very strong again. What could help me? Does Gabapentin become ineffective over time?