Sufferer from Belgium :*, what now....

[bcweb]

Hello

Member since a year but never posted. Let me introduce myself. My name is Christophe, 36 years old now and am from Belgium. Live in Ghent. Since my puberty I had quite some frequency but that was the only issue. Never made a big deal out of it. Had to pee like 10 times a day.

2008
When I was about 30 years old I wanted to treat this because it had too much impact on my social life and work. Again only the frequency bothered me. Had an out-of-office cystoscopy which traumatized me. Pain was awful. But urologist saw no problems.

Then went to university hospital for urodynamics. After they filled my bladder to about 150ml I couldn't pee from the stress I suppose. They removed all the wires/tubes and let me go on the toilet and then I could slowly. After this I went to pelvic floor therapist for 6 months to do biofeedback and Kegel exercises. I think this made things worse. I stopped with all the medical consults because still at that time it was only frequency.

2013 (5 years later)
I was ready to battle this once again because in that time I already had my 2 kids.

2013 February
They saw on MRI back that I had 2 herniated discs. Kept a pee diary and saw I peed like 20 times a day and during day it was 60ml amount and during night 150 ml average and urine flow was 10ml per second max. Went to another urologist and had new urodynamics. They could fill it up until 180ml and I was about to burst. Anyway I could pee then and again everything seemed normal except small bladder capacity they said. Uro prescribed me Toviaz 8Mg. Took 1 single pill of that and BAM couple of hours later acute urine retention. Had to go to ER to drain 150ml of urine. I begged them to remove the cathether because I could not support it (constant urge to urinate). 2 hours later again catheter and begged them again to remove it. Thankfully I managed to pee afterwards although with very much difficulty.

Urologist wanted to inject Botox in my bladder then. Went then to 2 other urologists and they said that I already had so much difficulty to pee that I would not be able to pee for at least 3 months with that so I scratched that option.

Then started to take Tamsulosine (Flomax). According to me it was even more difficult to pee. My uro told me it was not possible and that it was in my head. GRRRRRRRRRRRRRRRRRRR

2013 May
Because I had IBS (lots of stool also since a while) I did a colonoscopy. Again nothing found. Then I decided to change my lifestyle because I had bad eating habits (drinking only sodas, cokes, fastfood).

2013 June
Only drank water for a month and super healthy food and that solved my IBS problems I have to say. I was so happy. But then... all hell broke loose. Started Flomax again, didn't help, stopped it. Had sex and 24 hours later I literally I was in hell. Inhuman constant urge to urinate. No infections. Couldn't sleep. I got really depressed and lost a lot of weight because I didn't ate anymore and was living in a world of Xanax and Zolpidem/Stilnoct. Also had to take one month off work and thankfully my employer was kind.

In the next 2/3 months living in a world of hell but things calmed down eventually with ups and downs.

2013 September
Got back to work but my frequency was again 20 times a day and urine flow was dripping drops. Cannot pee while standing. Have to sit (major hesitancy).

2013 October
Went to Pelvic Pain Clinic in Enkhuizen Netherlands and they told my pelvic muscles were way too tight and my back was not right.

2014 March
Up to then it was ups and downs and very anxious. Did a lot of exercises from the clinic (Theracane and all that stuff) but not very good results. I must say I didn't always have the discipline to do the exercises with my 2 kids demanding lots of attention. They decided to try the Interstim (sacral pacemaker). Still have it but it doesn't do any good but at least the worst was over from period 2013 June.

2014 September
Suddenly after playing a golf tournament with my dad and those are the best moments of my life my bladder started feeling weird. Had to pee drops at each hole and told my dad that it all started again. And indeed during the night same hell as one year ago. Inhuman urges to urinate, painful bladder spasms after urinating, lower back pain, can't sit (coccyx very sensitive). Again very depressed and could not work for 2 weeks.

================

So tried with daily research and reading on the Internet during one year. At some point you get to have more knowledge than urologists... :

- All kinds of supplements (zinc, magnesium, vitamins, quercetin, homeopathy)
- Take quite some Xanax when needed although it doesn't help with urge or frequency, only to calm me a bit.
- Valium helps a bit it seems for the spasms
- Zyprexa I get constipated and again much harder to pee
- OAB meds I get in acute retention (Betmiga mirabegron, toviaz, vesicare)

Have to mention I smoked cannabis daily for over 15 years. Quit after my hell in June 2013 because it then gave me panic attacks. Started again 3 months later when things calmed down and now quit again due to my hell-time again.

Saw in total about 5 urologists, 1 psychiatrist, 2 neurologist, homeopathy, osteopath, physiotherapy...

Literally spent major amounts of money on this.

Have lots of tension at home with the kids and my wife when I'm in flare because they can't help me. Sometimes I feel divorce is on an edge . I suffer and I make my close ones suffer because they can't help me. During those inhuman urges to pee constantly I get in bed with pillow between my legs and take lots of pills just to be knocked out.

Have to say:

• Up until last year I masturbated quite a lot (average twice daily) for years
• CT scan of lower pelvis shows a bit of calcification of prostate but nothing to worry about according to uro
• Cannabis sometimes brings a bit of relief and sometimes makes things much worse.
• Alcohol is a big no-no since one year.
• Always scared to get in acute retention.
• I am nervous person in itself.

Now seeing neurologist who again prescribed me Deanxit which makes things worse so that no more. Only Xanax and Valium I can take without it affecting my urine flow. Also taking half a Flomax daily.

Received conditions:
- CPPS
- Fowler Syndrome
- OAB
- Pudendal Nerve Entrapment (looking into it now but my new neurologist is pissed of at my uros because they never did an MRI of lower pelvis and now I cannot do it cause of this stupid pacemaker unless we remove it)

The only things I can remember from my youth is that once I fell heavily on my coccyx and once I got a big kick in my groin but who hasn't so to speak...

Have a sitting job, bought all kinds of cushions, therawand, sonic prostate massager. I'm sure this prostate massager I used yesterday gave me a new minor flare.

This morning I lost it at work because I got those sharp sudden pain urges just below bladder. Threw pc on the ground and cried like a baby in front of all my colleagues. They wanted to call an ambulance but I refused and rushed home at hi-speed.

1) I would be delighted to meet a fellow sufferer here in Belgium. I can't find anyone. Anyone reading this is from Belgium? If so please contact me ([email protected]). This would mentally help a lot to talk face to face with a fellow sufferer without travelling too far. I feel so alone.

2) In Belgium I don't seem able to find someone specialized in CPPS and triggerpoint therapy. Can someone help with that? I read a guy here named benzo had help from someone in Belgium but since I cannot PM here I cannot contact this person.

What now? I feel so disappointed in myself. I don't know what triggers flares and how to solve them. I feel like I will lose my wife and work some day if this continues. I'm angry at the world and the people having no issues and when you tell people they just don't understand or can't imagine this. When I drive sometimes I just want to bang into a tree to end it but just thinking about my kids block me from doing this.

Right now on 20MG valium and 1MG Xanax just to be able to write this.

I will only curse once but this is a fucking hell we live in. And sometimes you seem to think healthcare is greatly advanced but not in this area. Sometimes I just want to remove my bladder and prostate or be paralyzed from the waist down. Even prepared give up sex in order to be right. Also even half a Flomax gives me retrograde ejaculation. Yeah harmless sure but very uncomfortable if you already have major hesitancy and dripping flow. It's like peeing glue afterwards. Can't sit long.

Sorry for long story. I am somewhat glad to find ONLY on the Internet fellow sufferers but on the other hand again everyone is trying to find a solution and not many have great results in my opinion.

Even considering when getting a bit better to start some kind of Belgium CPPS association.

Fed up with people saying keep positive. They just... don't know.

Even writing this I have tears in my eyes.

[webslave]

Just some things that jump out at me from your post:

1. Cannabis. Stop using it, forever. Many men report it causes flares. Keep avoiding alcohol too.
2. Masturbation, no more than 2x a week. 2x a day is crazy.
3. IBS and constipation: follow the FODMAP diet (newly discovered to cure most cases of IBS). You can google it and learn all about it. I make a comment on it here viewtopic.php?f=51&t=8327
4. Flomax and a-blockers are probably not helping. Just stop using them.
5. Get off the benzos. You're becoming dependent.
6. You need to work on relaxation. As you say, you are very tense. Make time to meditate and use relaxation CDs.

[Caedar]

Could you list the specific symptoms you're experiencing now?

[bcweb]

Hi webslave and Caedar

Thanks for the quick replies.

Also have to mention that I smoke a pack of cigarettes a day. Will try to quit that too although not sure if that has impact on CPPS. It seems there are also non-smoking CPPS sufferers. Maybe I can try nicotine patches to quit. You think nicotine can have impact on CPPS or just the other toxic chemicals that are in it?

Yeah I will ban this cannabis from my life. Smoked half my life. Lots of money up in smoke. Time to stop now. Loved it though but indeed it has caused me more harm when flaring.

About the masturbation, can't help it. But I will keep it to a minimum. Anyway when flaring it's impossible. Flomax only taking a half of it but doesn't do anything I think except this retrograde ejaculation which I hate.

I will taper off the benzos but cannot do this cold turkey right now.

Talked about relaxation with my wife yesterday but I'm having so hard time dealing with her at the moment. She's like "yeah like you're the only one with issues". I cried in front of her while talking and receive so little reaction. I don't know... Either she just doesn't get it or just thinks I'm depressed and over-anxious and doesn't know how to react. Yeah I'm anxious but only due to those issues. This morning I went to IKEA with my 4y-old daughter. You know those great father-daughter moments :). I was happy, in a good state of mind. Forcing to relax and breath calmly and then again suddenly prostate pain, spasms and luckily it calmed down after a minute but what is the f***** trigger???? Left as soon as I could.

Symptoms I experienced the last 24 hours:

- Starting around 5-6am extreme frequency (every 30 minutes) until 10am then it calms down but not 100%.
- Sometimes sharp shooting pain from the anus that goes to the tip of my penis.
- Sometimes like electric shocks in bladder (like it's vibrating). Very uncomfortable. That's when I turn off my Interstim because I think that may be the cause but it isn't because when it's off I get that too.

When major flaring the worst thing is the non-stop constant urge to urinate that never stops no matter how much there is in the bladder (empty or full). That is really the worst thing and gets me down totally. Like there is no point in living anymore. Last year this took a really long time. Now I feel it's there slumbering waiting to strike me again.

Last year I didn't have pain like this I experienced since last month. Again don't know what triggers are. Tried to identify them but no success.

Read the headache in the pelvis book twice. It's a good book. I can identify myself in the book but really wonder if those stretches really can solve this.

I can't do it internally. I just can't and can't find someone here in Belgium that has skills in it. My osteopath does it now externally but does it help? Sometimes I think yes, sometimes not. I just can't help there is something physically wrong with me although they can't find anything...

Thank you guys for letting me in this family. Will need you.

[Caedar]

Sorry for the short responses; I'm getting ready to travel.

It sounds like a lot of your symptoms are urinary. Have you ever tried an antihistamine (particularly hydroxyzine), interstitial cystitis diets (including increased water intake), Elmiron, or Prelief?

[bcweb]

Antihistamines make me urinate even more with difficulty . Tried diets too. Elmiron no, Prelief no. It must have another name here in Belgium.

Yesterday I was pretty fine. Didn't take my Flomax either. Flow was not impacted but went to sleep and woke up at 5:30 am with pressure on bladder/bladder neck as if it was sucked up in body. Very uncomfortable. Couldn't sleep anymore. Peeing little bits of urine but didn't help much.

Now 06:49 AM, depressed from the pressure. Seems standing up eases the pressure a bit. Could it be that my bladder neck is too high (perhaps result from shortened pelvic muscles) and that during daytime when standing up it all organs lower a bit. I don't know anymore.

When my uro implanted the Interstim (general anesthesia) he told me he looked into my bladder and found no issues. I didn't believe him cause I felt nothing when I woke up. I once had cystoscopy in 2008 and the pain/urgency was hell afterwards. He said that due to GA that all muscles are relaxed and that's why I felt nothing. Still do not believe him.

Can they see this on scans without those invasive procedures?

[webslave]

You've been investigated and nothing organic seems to be wrong. But you are clearly a highly anxious individual given to catastrophizing, which is a known negative factor in CPPS.

[bcweb]

True I remember I was a little anxious in my youth (meaning scared to talked in front of audience and stuff like that) but the high anxious came DUE to the CPPS.

It's just so disappointing and feels like failure (again typical symptom for CPPS I know) that the last year I spent really a lot of money on docs and supplements and cushions and so on and so on and saw little improvement and now again in high crisis.

In fact everything started (besides the liveable frequency) to worsen when I started going to urologists who started to stuck stuff in my that either hurted or traumatized me psychologically.

@Webslave I understand your statement about disabling private messages, I really do. But can you, as administrator, send a message to the user 'benzo' asking to contact me. I don't need his e-mail address. I just wanna know his PT who apparently has helped him much.

I can't afford anymore going to the PT I know in the Netherlands because 1) it's quite far and 2) it's really expensive because my insurance don't cover it. I just need to find a person specialized in CPPS that I can visit regularly. Some PT's I ask here say "Yeah I can give it a shot" but that doesn't cut it for me. I need a pro. It's your call but I would highly appreciate it.

[webslave]

I've sent benzo an email, it's now up to him if he wants to contact you.

Please take seriously my advice to follow a FODMAP diet at least for a while. The nerves innervating the lower bowel, irritated in IBS, can affect the nerves that cause your problem (via a process called "crosstalk").

[bcweb]

webslave, you're a godsend. I really appreciate it. You can't imagine. Now I hope benzo will respond but that ain't no longer up to you.

I will seriously study the FODMAP diet and apply it. I will update you from time to time if that don't bother you. Or at least in this thread.

Prepared to do ANYTHING to improve my quality of life.

Again many thanks.

[benzo]

Bcweb, I've been working with Jan Pattyn from Torhout, a 30 min drive from Ghent. I also visited Fetske who is at the same level. IMO both leading authorities in treating CPPS in the Benelux.

Surprised you didn't hear from him. He is one of the founding members of the PT association: http://www.trigger.be/
His contact details are on there, so go for it.

Oh yeah, stop seeing urologists, their only use in our condition is to rule out other defects. After that, your best option is to work with a qualified PT.

[bcweb]

Thanks benzo! Yes I found a post of yours mentioning trigger.be website.

Pure out of misery I wrote a mail bomb to all PT's listed there (except Jan Pattyn)... and they ALL refer to me him some mention also a name Jörgen Quaghebeur. You know or heard of him? http://www.synergeia.be/joumlrgen-quagebeur.html

And yes Fetske and Bianca are great (went 3 times) but it's far (during flares/crisis impossible to go there for me) and quite expensive and my healthcare (Liberale mutualiteit) don't repay anything because they are like (why don't you just go to Belgium PT) and don't know shit about CPPS. Traffic around Amsterdam sucks too. Gives me panic attacks.

Thanks for the info man. I won't force or push you but some day I sure would like to meet a fellow sufferer like you face-to-face. You can always write me at [email protected]. Where are you from by the way?

In meantime I wrote a mail with all information to Jan Pattyn.

Thank you again webslave and benzo.

Regards
Christophe

[benzo]

Hi, sorry for the late reply, but I looked at the other therapist you mentioned and his name doesn't ring a bell. Seems like his main specialty is Osteopathy. Before I stumbled onto the Wise-Anderson protocol I had some sessions with an osteopath but without success so I'm quite skeptical about the usefulness in CPPS. I see he is affiliated with the urology dept of the Antwerp University Hospital, so that's a plus.

For now, I would pursue TP therapy, learn how to self-treat and understand the mechanics. Doing that, you will have your work cut out for you.Keep us updated on your progress, I would love to hear how your visit to Jan Pattyn went. I'm in need of some maintenance myself, so I might visit him soon.

[bcweb]

Hi man

At the moment I went 3 times. He read all my reports.

This guy is superfriendly and such a comic. I laugh a lot with him which I don't do often anymore lately.....

Have been off work since 6 weeks now but hope to get back next week.

So I had 3 dry needling sessions. 2 of them in the pelvic floor. I'm not sure if it helps yet though although it doesn't worsen symptoms. He says I'm full of trigger points... I told him I rather not have him do internal work for now. I just couldn't handle this but he says he can locate a lot of muscles from the outside with dry needling.

Now.... last week I went to an andrologist (through my boss so I couldn't refuse). His name is Professor Comhaire. Apparently he is world famous for dealing with fertility issues.

Anyway I went to him last week and he did ultrasound/echo of my balls and prostate. He says my prostate is full of calcifications which is causing my urgency/frequency/pain crisis. I told him I know my prostate is like this (confirmed by 2 CT scans) but all my urologists said that's not the issue. Anyway he urged me to stop smoking which I'm trying to do right now. I switched to e-cigarettes for now because I have given up so much lately and feel like there's no fun anymore in life. So I need that little nicotine. He told me it was better than carbon monoxide but still he urged me to stop all this shit. Also quit weed for good and avoid masturbation because that flares me up big time at the moment.

Now Comhaire also he told I have varicocele and treating this with a procedure called "embolization varicocele" (http://www.sirweb.org/patients/varicoceles/) could help with my issues (chronic prostatitis) but certainly not worsen it. So me, in all my enthusiasm had this procedure done last Friday. Procedure was not that painful itself but as soon as he injected the glue into my spermatic veins I am in lots of pain. Extreme abdominal pressure, backpain lower up to kidneys but balls pain is subsiding a bit.

Of course the radiologist who did this says it's nearly impossible and that it can occur 1/1000.... Yeah fucking right. I totally regret having this done. It didn't fix anything. Instead it created pain in my balls and back and abdomen which I didn't have before. I read on the net that some people had this too and undergo pain management for months because it's irreversible. FUCK THAT. I'm not going that way. Anyway I hope this shit resolves soon as I can barely walk. Even laughing hurts. My trust in those freaking money-making specialists has gone down to zero.

Discussed this with Pattyn today and he told me my abdomen is full of trigger points also now. Probably unconsciously I went to "guard" state with my muscles during procedure although I didn't feel I did that. So he dry needled me a lot today. Hurts sometimes. I hope it resolves with his help.

Pattyn is now gone for 3 weeks so I see him back on November 19. He's a great guy and hopefully intensive treatment will help.

Indeed I have given up on osteopathy itself too. Lost too much money on this stuff already.

PS: Never do varicocele embolization if your balls and abdomen don't hurt. It is being marketed as harmless but me AND OTHERS are in agony after this shit. I can't even pick up my 2year old girl now.

[benzo]

Oh dear, Comhaire...I visited him once, somewhere in the mid nineties and got misdiagnosed with pubalgia. Told you to steer clear of urologists, certainly ones that are not skilled in CPPS treatment. This guy specializes in fertility issues and is probably only marginally aware of modern CPPS treatments.

Rule 2: don't get invasive procedures done, I had abx injections in my prostate done and it was a collosal failure,

Do not, I repeat, DO NOT consider surgery or other procedures if you have been given the clear after the usual standard examinations.

You have been seeing a skilled PT for the first time, it might take months before you see any improvement.

I would strongly recommend to have internal work done, judging from your story I suspect you might benefit tremendously. Have you read AHIP yet? Studied the pelvic diagrams? Jan Pattyn has a nice scale model of the male pelvis on his desk, he can explain you the anatomy and how to self-treat, which in the end will be key to recovery and managing your condition. Beware: you can manage it but forget a full recovery without doing the proper maintenance. PT time alone is not nearly enough to beat this...