My story (kovacs)

[kovacs]

I am new here, be gentle...

I am 44 years old, male, live in Norway.

Five years ago I was in fantastic shape. I was an avid road cyclist. In 2010 I trained for and finished a 540 km bike race. In both 2011 and 2012 I finished a 430 km race over three mountains. Now I can't cycle - or even exercise much - at all.

It started perhaps back in 2009 or so. I could wake up at night with severe cramps around my anus, usually after sex. It would last for maybe an hour or so. Later I started noticing changes in my urination - hesitation, weak stream, increased frequency. One day I was out running when suddenly I experienced a very painful urgency. I had to stop and walk home (6+ kilometers).

About 2 and a half years ago I was training for a new cycling season when I started getting intense pain in my perineum while cycling. Around the same time I started getting pain while at work, particularly in meetings or any other activity lasting more than 30 minutes.

Two years ago I had my first really bad experience - while I was driving, I had to go really bad. It was very painful. I was in the middle of nowhere, so I got out the car and went into a small clearing of trees etc. I was completely unable to urinate for about 60 minutes. The pain was almost unbearable, but in the end I manage to urinate and the pain went away.

Since then it's been a roller coaster of increasing incidents with pain, getting up 5+ times per night to urinate, never being able to go anywhere without knowing exactly where I can stop to urinate etc. Very difficult when my job consists of developing customer projects, running workshops and specification meetings etc. I can't hide behind a desk.

I have been seeing physiotherapists for a long time. From January to May I was helped a lot by a great osteopath who managed to get a lot of the pelvic floor muscles to relax by working on a lot of stuff (psoas, hips, upper body, trigger points etc). No internal work. In May I actually felt quite good, little pain and less urgency.

Sadly, in June it started getting really bad. I had constant tenderness in the perineum (radiating into my inner thighs), pain in the lower abdomen, anus cramps every time I urinate. I spent two weeks in Spain with my family, but I was in too much pain to enjoy it.

Back home I saw two urologists. One said I probably have "overactive bladder" and prescribed Betmiga (mirabegron). I wanted a second opinion so I saw another urologist who said I had typical and clear symptoms of CP/CPPS and prescribed Omnic (Flomax).

About 15 days ago I had a day in hell. It started with cramps around the anus at 5am. Then at 4pm I had severe pain in my perineum, and full urinary retention. At 10pm I called emergency services and was promptly hospitalized. They had 4 failed attempts at inserting a catheter (I guess due to an enlarged prostate?), but at 5am they managed it with a special tube. The pain vanished instantly.

Since then I have been on full sick leave. The pain comes and goes. I am on NSAIDs, Omnic and Betmiga. I sometimes take Tramadol when the pain is too much, but it makes me hung over and miserable. I have another week of sick leave before I'll get back 50% until the end of September.

Right now I am completely unable to work. The pain comes and goes, but the "pain free windows" are too short. I also fell constantly exhausted and unable to concentrate on anything for more than a few minutes.

My GP has diagnosed me with CP/CPPS. I now wait for a full checkup at a local hospital, but I'll probably have to wait for a few months due to availability. It's hell. I have no social life. I sleep poorly. I worry about my future.

[webslave]

Welcome!

Neither mirabegron nor tamsulosin are very effective with CPPS symptoms. If you are in Norway, you could try the clinic in Holland
http://www.allesoversms.nl/joomla2/index.php/english

Even better is the Wise Anderson clinic in California, but that is much further and costs more. Also be sure to use quercetin, and do a lot of reading here. There are lots of things you can try, some of which are sure to help you.

[kovacs]

My insurance company set me up with a urologist today. It turned out to be the same one I mentioned above who suggested overactive bladder. I discussed my situation with him, and he asked a lot of questions about pain and other symptoms.

He did some tests (checked prostate, looked at the bladder with ultrasound, checked for rest urine) and concluded that 1) there is probably nothing wrong with my prostate, and 2) I probably have Painful Bladder Syndrome.

As far as I can tell, that's pretty much identical to CPPS. Or it's just a different term, according to http://ucpps.men/1/. He could not test for Interstitial Cystisis since he did not have the equipment, but I am in line for testing at a local hospital in a month or two.

I have been told to go off Omnic, and to start on the IC Diet. Apparently Painful Bladder is caused by the urine irritating the lining in the bladder, and the theory goes that certain foods, specifically acidic stuff like coffee, juices etc, makes this irritation worse.

[Caedar]

CPPS and IC/PBS symptoms commonly overlap, yes.

[kovacs]

I have now been on the IC diet for almost a month.

Basically it's no coffee, no tea, no beer/soda/wine (but whiskey is okay ;) ). No spicy food, no acidic food or drink, no chocolate, no onions, avoid lots of preservatives etc. Since I'm already on the low FODMAP (plus gluten free) diet due to IBS (it has helped tremendously), it's been a real PITA to cross check it with the IC Diet. So I live on a pretty strict and very boring diet.

So far it seems that the most helpful thing was to drop coffee, tea and sodas. I have much less frequency, and I sleep better, probably thanks to no caffeine. When I eat some chocolate I tend to get a bad flare up, but I don't have enough samples yet to say anything for sure.

But apart from that I am not really sure that it's doing much.

In fact my bladder problem (if it is that) is worsening. I have a lot of pain in the perineum and lower abdomen. I can work about 50% now but that's it.

[webslave]

Dietary change is only part of the problem. You need to tackle this on multiple levels. Carl's list is a good starting point...
viewtopic.php?f=5&t=6475

[kovacs]

Yes, I'm already doing most on that list. :) It's just a bit overwhelming right now, I think I'm in the middle of a bad flare-up and this week has been hell.

[kovacs]

So another update.

I've been on the IC diet for 38 days. I also restarted Flomax (tamsulosin) after talking to a urologist. Last week I learned how to do self catheterization since I have occasional trouble with retention.

Here is where I am:

• pelvic pain just increased for the first few weeks. No apparent connection between diet and pelvic pain for me.
• dropping coffee has had a major effect on urination. Frequency/urgency is down. I also sleep much better now, although I still get up 2-3 times per night to urinate.
• only 3-4 days after restarting tamsulosin, I had much less pelvic pain. Now about 10 days later I still have not had major pelvic pain incidents (from having constant pain). May be accidental.
• however, I also had three urinary retention situations after starting tamsulosin. This is extremely painful, mostly in lower abdomen (bladder) area and perineum. The first two resolved when I finally managed to urinate on my own after an hour in hell. The third time I managed to resolve it with a catheter, and the pain disappeared immediately.
• my pain usually always recedes after urination
• I have almost constant discomfort when walking - perineum and anus feel tender and raw, very uncomfortable
• I now tend to lie down a lot with a heat pad under the small back and my knees elevated. I can also sit on little padded pillows with a split in the middle (my wife made these). I keep one in my car, one in the sofa, one in my work backpack etc.
• I have more pronounced hesitation after starting tamsulosin - it can take 5-10 minutes to start urination sometimes
• trying to get to a local gym to exercise. I manage only about once a week due to too much discomfort, but it's a start. I have a very understanding personal trainer there who has set up a basic pelvic floor/back/shoulder program for me.

I'm starting to think that I have severe BPH. Still waiting to be called to the local hospital.

[webslave]

Does sound like a BPH element in there

[kovacs]

Just updating my status. Over the past few weeks my situation has become much worse. I have had 3-4 acute urinary retention episodes every week, requiring self catheterization. Since this is very new to me, I struggle to succeed with it and it can take 3-4 attempts over 60-90 minutes to "get through" to the bladder. The pain and urgency resolve immediately when the urine starts running.

It's actually worse than when I "only" suffered with pelvic pain problems. I have had a couple of retention episodes while in client meetings, which becomes pure hell as I have to excuse myself from the meeting to run to the restroom (where I am then unsuccessful in urinating). I then need to get home ASAP to attempt self catheterization. After each episode I am completely worn out and have pain in my urethra from the catheterization.

I have finally got an appointment to investigate my bladder at a local hospital in about three weeks' time.

[webslave]

Sounds rough. Keep us updated, Kovacs.

[kovacs]

After a few very good days, with diminishing pain, I problems started again yesterday. Had 2-3 episodes in the middle of the night before yesterday when I couldn't urinate at all. Every time it felt like the flow was starting, I got excruciating pain around the urethra/perineum which made it impossible to "let go". It took about 30 minutes each time before I managed to urinate. Lots of urethral pain radiating down to the inner thighs. During the day I was able to urinate, but it was difficult to walk, and urinary frequency got really bad.

In the evening the pain got so bad I had to lie down for the rest of the day. I took one 100mg tramadol to ease the pain, but that made me alert at night so I didn't get much sleep. Tramadol is a last resort for me as it often keeps me awake, and it tends to make urinating even more difficult.

At 3:00 am I woke up again and had a new episode of retention. This time there was no pain, I just couldn't get the flow to start. I went back to bed but did not sleep.

At 7:45 I again went to the bathroom. But as I tried to start urinating, I suddenly got *horrible* pain in my rectum. I think it was rectal spasms. I almost fainted. I was unable to sit on the toilet so had to stumble into our living room and tried to lie down on the sofa - in front of horrified kids... The pain did not ease up so I finally made it to our downstairs bathroom and made a sitz bath in a small washing tub :) The rectal spasms ended in about 20 minutes.

I had to self catheter to manage to urinate. The ordeal was over after about 2 hours...very stressful and lots of pain. It completely wears me out.

[kovacs]

I had a cystoscopy today. It was so painful that they had to cut the procedure short. But they did observe lesions in the bladder lining, so I have been diagnosed with Bladder Pain Syndrome (interstitial cystisis). I'm up for a follow-up procedure in a few weeks - I didn't quite catch what they are going to do, but the doctor said something about "closing the wounds". Maybe cauterization? It will be under general anesthesia.

[webslave]

Those lesions are called Hunner's Ulcers.

This is the value of cystoscopies. They do help with diagnosis.

Hunner's ulcers can be removed through fulguration (burned off with the use of electricity or a laser) or resection (cutting around the ulcer, removing both the ulcer and the surrounding inflamed tissue). Some ulcers may recur in the same location.

Many patients choose to live with the ulcers and treat the symptoms associated with them through bladder instillations or/and pain medication/therapy.