25 years on prostatitis or something different? story or help

[mauro]

Hi I would like to tell you my story and get some advice (especially from ''webslave'')
IN THE PAST :
My history with prostatitis began in 2001, when I felt the need to urinate more often. I was 22 years old. I did an ultrasound and it showed calcifications. Everything gone in one month , and I don't think about it anymore.
In 2007, after sitting a lot, I got frequency. I go to a urologist, have an ultrasound (I see the calcifications, but they were already there) and he get me Cipro and TOPSTER. Things seem to be improving. I am not given any urine o sperm tests. Afteri still have a bit of an urge to urinate.
in 2011, I get golf ball pain, lack of libido, poor erection, and no enjoy after orgasm. As well as frequent urination. I go to one of the best Neuro Urologist in Italy who is an expert in CPPS. Sperm and Urine Cultures were negative. He evaluates my pelvic floor internally and diagnoses me with CPPS with: hypertonic pelvic floor muscles, tender with digital compression. trigger points in the anal elevator musclei, internal obturators, coccygeals. I have 4 internal PT sessions (with him), and he prescribes RIVOTRIL and LAROXYL (amptriline) . I got meds for one year and the pain disappeared. Only a slight urgency remains \f frequency, 8 times a day, 3\4 at night. everytime I also have pain after ejaculation that disappears in half hour, or if I masturbate before sleeping, I have more urgency.
2019 During the Covid period (2019,2022) I have serious problems sleeping due to sleep apnea and anxiety. After hospitalization in sleep hospitali . the apneas are discovered to be of an anxious\neurological type, I treat myself with TAVOR for about 2 years and I start to feel better. In this time i get more frequency just when i get awake with apnea’s fear.
TODAY
2024 total explosion of symptoms Day 6 January 2024 I get up with the continuous urge to urinate, 24\24, 7\7\ always no feeling empty! Like I'm always urinating. The flow is intermittent (it squirts and then starts again) and I have hesitation, I urinate 50 times during the day, 70 times at night! I feel like I have to ejaculate and have to pee at the same time. Pain in the urethra and burning. Golf Ball. Bladder pain. Ass anal pain Part of the urine remains trapped in the urethra abdominal pain like a V, pain in the testicles, pain after ejaculation, weight in the pubis. Buttock pain. burning sensation when urinating. After defecation (I poop) the symptoms become aggressive and I get worse by urinating practically every 10 minutes. The pain is not very strong, but the most serious problem is urgency and frequency

The urologist touches my prostate (or an adjacent muscle) I feel pain, he prescribes Ciprox and Tospster for 10 days (without doing culture tests) this seems to make everything worse! plus I'm starting to have diarrhea and IBS After 1 month in bed I go to hospital, uroflowmetry with full bladder with good but intermittent flow (on\off\on\off) I have a trans rectal ultrasound it found a very small, soft prostate justh te numerous calcifications (I told the doctor that them are there ' for the last 20 years!!!) low psa, 0.4. Testicular ultrasound good, renal ultrasound good, bladder ultrasound good. The prostate seems slightly inflamed or maybe not. There is a very small inguinal hernia (which never hurts). He tells me that I am too young (42 years old) for a urodynamics. that according to him there is no stenosis to perform cystoscopy or bladder lesions. negative urine test, negative sperm and yeast culture test
I ask if I can have IC, he says no, because it's a female thing, Good person but not expert in CPPS And he thinks it's an overactive bladder or that it's a consequence of the inflammation and get ,e me tolterotin 1 mg a day to increase to 2.

I see a second urologist who does ultrasound and Dre, the bladder goes empity , according to him the prostate is not inflamed, he say : uroxatral

Myself I start taking Quercetin, vitamin D, and Zinc, 1 per day, 0.5 mg Tavor to soothe, xatral (5 mg taken only for a month, perhaps too small time) and Tolterotin (which initially increased my pain) The symptoms drop by 10 percent (so 90 percent remains and I'm in the third month in which I feel like I'm living in a nightmare, I'm starting to suffer from anxiety and depression.
IMPORTANT I didn't masturbate (according to the first uro) for two months, before I masturbated often (5\6\ times a week, sometimes short or long, but never in a worrying or compulsive way, on the contrary it relaxed me and made me feel well, and improved the flow in the past ). This long stop maybe made the symptoms worse and now I'm afraid of pain after masturbation

THE CAUSES ??
- For a period of one month I wore a tight belt around my waist ???
Unprotected oral sex with my ex gf (clean and healthy person) occurred 2 months before starting synptoms . I have no sense of guilt, I'm single and I love this girl.

- Topical hair lotion (I had been using minoxidil for 25 years without any problems or side ) but ONLY in the last two months I had put an antihistamine (cetirizine) and finasteride in the lotion but in very low proportions 0.01 and never ingested (1\10 of propecia pill put ahead.

- Anxious neurosis. A month before the symptons, I had the greatest stress of my life. I was stuck in a foreign country due to anxiety, where I developed an anxious neurosis that made me stay locked in a room hotel for 2 days shaking and crying alone. Without sleeping without eating, and I went to the bathroom constantly. I don't know how I managed to get home because on the plane I had very strong anxiety and panic attacks. I have never suffered so much psychologically in my life. When I got home I collapsed. after 1 month the symptoms arrived.
- In my past whenever I have been nervous and tense (I even had restless legs syndrome) I have always been driven to urinate often, and empty myself –

TODAY
I can't leave the house and I don't do anything anymore (I can't work, play the guitar, go out for a pizza) the problem is urgency and frequency its make me crazt and i can't think.
About me I'm tall, I'm a healthy weight, I eat everything but in moderation, I don't drink alcohol, I took a test for celiac disease and it was negative. For the last year I have been sitting Unfortunately I have a anxious, obsessive character, I have some OCD, I have had depression. My work life has gone badly (my business went bankrupt, losing my money and home) and I'm single. From this I don't mean that this illness of mine is linked to my psyche, on the I don't believe that anxiety could have made me this problem

I'm desperate, I think I'll stay in this state for life,! I always think about this s*it cause urgency or 24 hours a day The urgency and urination are killing me, and I wonder if I have IC, if I have an aggressive return of CPPS, or if I have developed urethral stricture or mild bladder neck stricture.

Strangely enough even though I'm a hypochondriac, I don't think of bacteria as the cause. I read that it could be a rare autoimmune disease, and on all the Italian sites urologists say that you never heal and that life is over.
I have Dr WISE's book (hinp)
There are few doctors who deal with CPPS in Italy and you have to wait a year. A specialized PT is 500 km away by car from my house, although there are some female PTs who told me they could take care of it (but I should talk to them and make them understand) near me Sorry my English is not my first language

[webslave]

I'm on a sleeping pod at Dubai airport right now, so perhaps someone else can answer you. I will get back to you soon

[mauro]

Not worry I can wait, for me your opinion is very important.
So other persons help are welcome
Thanks

[webslave]

I'm in Africa for a while but let me make some comments from this hotel room. Firstly that inguinal hernia you mentioned may not be as unimportant as you think and I would definitely take steps to have that fixed. There are quite a few men who resolved their pelvic pain after their small, subclinical, "unimportant" hernias were repaired. Secondly you should immediately follow the IC diet which you can find elsewhere on the site, just do a search. Bland food is the rule of the day. No caffeine, no chocolate, no tomato, no chili etc. Do those things as a start. Your case is quite complicated and it probably will take a while to get you better. You do have a strong psychological component that could well be the ultimate cause of your condition, but let's first rule out any dietary and mechanical causes.

[mauro]

hi webslave thanks to find a bit of time for me. I understand that my situation is complex. And my story is long to read. I'll answer you briefly
1) Regarding the IC diet (I have never been diagnosed with IC, but I get the point of your theory). I am Italian, I eat healthily and follow a Mediterranean diet. I eliminated coffee. alcohol, chocolate. A bit of tomato 3 monthsi ago . I eat gluten (pasta) but I did the multiple blood test and I'm not allergic. so...
2) My hernia (sports hernia) hurts very few times in a burning type way. The ultrasound showed it was very small. Even though surgery would be free in Italy, I don't think I can find a surgeon who would surgery me , its small, non-visible and not very painful hernia. They would all tell me NO. Do you think that this very small hernia is pressing on my bladder, what problems could it cause me (I discovered that it exists 4 months before the onset of ucpps)
3) My story is very long, if you read carefully I have already received a diagnosis of UCPPS from a great Italian and European expert, 11 years ago. I don't understand now why it got worse
4)Do you think it's stress\anxiety that made it grow? or a mechanical problem (stenosis, bladder neck sclerosis), should I be worried? The urinary urgent\nicturia disurisa and penis \uretra burning discomfort is so strong that it prevents me from any kind of relaxation or calm.
Thank you so much for what you do
I have to figure out the next step, the disorder is so bad it's driving me crazy

[webslave]

Subclinical inguinal hernia has been shown to be the full cause of what looks like UCPPS in some men. But your hernia is not even Subclinical, it is symptomatic and painful. Talk up the extent of the pain so that you get scheduled for repair as soon as possible.

Stress can most definitely exacerbate this condition. It could be a combination of the inflammation caused by the hernia and the hypertonicity from stress that is behind this flare.

To use an old analogy, you have to lift all the anchors to get the boat moving, and start healing.

[mauro]

Hi Webslave, the hernia is invisible, you can not externally see , and you can t find iit with the touch, the pain that appears only a few days a month from 1 to 10, could be 0.3 or 0.5. I pass entire weeks without realizing it. I would not be able to find any surgeon willing to make invasive surgery. It could be that in my case this small hernia does not matter. However, I will do it to the surgeon as a contributing to the killer problem.

1) I am continuing with Quercetin, Zinc, Vit D, La Tolterodina (Detrol) is helping me for continuous urgency, but I have the impression that with detrolo with my flow it is worse and that I have to push a little to get out all the uriina.

2) I continue to have pain in the penis, and inside the urethra of the central part, which increases when it is in erection, like burning. He does not show, he does not burn when I urine, I try it, he is always the same. Something like a chord inside,so there's nothing inside

3) at night in the times I wake up (10) I have the impression of not being able to empty myself, which I do best as a wake up

4) Coccyx pain, and stomach is under control, is not very strong but there.

I think my case is really complicated, could quae be my next step?

[webslave]

I don't want to repeat myself so I will say this just one last time. There are men who have had their pelvic pain, with similar symptoms to yours, completely cured when they have had their nonsymptomatic inguinal hernias repaired. So please don't start finding reasons not to get it repaired. Tell your surgeon it is very painful and it must be repaired because it could be a cause of your chronic pelvic pain. The fact that you are experiencing actual occasional pain from the hernia is a giant warning flag.

[mauro]

I went to the surgeon for the hernia. I fake to have pain, but he compressed some points while I faking pain and he told me that he wasn't touching my hernia, that I was faking (I got caught). he says that the hernia is small, that it does not affect either the bladder or the urethra. he says it can't be a cause of pelvic pain for him. he says that even if I wanted to surgery it I could end up with a wound, scar tissue, and synthetic mesh in my pelvic floor and that this could be worse for my pelvic floor
. I've actually also read about people on here who have had uccps prostatitis after they had hernia surgery.
so since my symptoms continue (burning and urethral pain, failure to empty, flow and pain) can I have another advice, I feel lost. Thank you

[webslave]

You need to get referred for an ultrasound to diagnose the hernia or maybe even hernias plural. Armed with that proof find a surgeon prepared to repair, and make sure it's a surgeon who does these operations frequently. Step one: get diagnosed properly, by ultrasound. This surgeon you have seen is an idiot. See someone else.

[mauro]

I'm sorry, I expressed myself poorly, so far I have had 4 ultrasounds for the hernia
1) a year ago when I wasn't in flame up

2) one this summer

3) one from the urologist in January

4) yesterday at the surgeon (who did a manual check-up and ultrasound)

everyone agrees via ultrasound that it is too small to be get a surgery on or to create pelvic problems.

I think we should look elsewhere. tomorrow I will write you my CPPS diagnosis from 2011 (when I didn't have a hernia but similar symptoms)

[Balenul]

I know the feeling.You need many tests.Read my posts.For me neuropathic pills did wonders bit they stopped working.Ic / pbs is common in males also....

[mauro]

I haven't IC ,because I Ve the all ucpps symptoms and diagnosed by doctors in 2012. Sure the extremely flare up make my bladder over active. I understand you. Because my story is too long to read. As webslave council me I see another surgeon yesterday and I will update this post about hernia suspect soon

[Balenul]

Stop ignoring IC/BPS please... just stop. I did it also but I consider it now. Some bladder looks perfect and they have BPS... only IC has some clinical signs that you can see at cystoscopy. many males have IC/BPS so please trust me in what I say. Some persons have little food sensitivity. Also I agree about the mesh. I won't put a synthetic mesh in me, I have a adsorbable one from a rectal prolapse and I regret doing it. I don't think hernia can give so insane symptoms is just my opinion. I met top urologists and neurologists in many countries and even best american pelvic pain and pudendal specialist Dr Hibner. Very few doctors can have a normal talk with me. I was smart at school and with my problems all doctors are amazed when I talked with them but sadly I had to learn in this 3 years. Italy is good in medicine. You have good doctors in Firenze, Spinelli in Milano, Dr Porru in Pavia etc... have some hope.

I repeat don't rush in placing a mesh in you, a permanent one they are a huge danger. if you are having a hernia 100 % repair it if not I repeat I have a absorbable mesh and I regret it.

DO URODYNAMICS AND CYSTOSCOPY. WHO TELLS YOU, YOU ARE TOO YOUNG IS A MORON. I am horrible now but I was ok 10 months. in other post I explained about what is the name of the condition. Is called PGAD. Dr Goldstein have articles about it. Like I said in other post ask and I will enter from time to time. I was suicidal during my journey but I always fighted and I had good periods. Is possible again for me and possible again for you also.

Your symptoms don't make bladder over active at all IMO. you talk about things you don't know. you have no urodinamics and no video urodinamic and you also did not met 50 doctors and you don't have extensive knowledge yet like others here or me have. so don't talk without those tests man about OAB. OAB is a possibly only but usually is not so aggressive alone. Some urodynamics don't detect OAB but is a long topic. you can have OAB and underactive bladder also etc. Is long topic

Also you are one of the few persons with so severe symptoms as me. I won't let you down. Be strong !

I have OCD also and I agree stress make it worse but in my case is not the OCD or stress since I can have good days and bad days. is something physical and mental also in both but for sure is something physical. You are in Italy and Italy has good doctors, very good doctors. Sad part is you have to pay you can't wait 1 year man to see them. I am in Romania and I had to see foreign doctors. Regarding pelvic pain I think with no modesty I know more than any Romanian doctor. they are a joke that ate my money in first year.

[mauro]

Good morning yesterday I saw a famous and great urologist surgeon, he carried out a very detailed ultrasound. He told me that I don't have any hernia, that what I feel every time is a painful impulse due to the pelvic floor or spasm, the hernia topic ends here. I will soon make a new topic to update you on my symptoms at 5 months

Admin comment: Sure. But I would not have asked a uro to ultrasound me. You should have used an expert ultrasound technician.