Frequency

[garyholc]

I had a chat with Bill Taylor my PT tonight as the frequency has become a pain in the ass of late. He said he went to a very interesting conference in Dublin a few weeks ago all about CPPS. He met up with two women based in and around the San Francisco area who specialize in treating people with this condition.

Bill spoke to them at length about how to shut off the frequency feeling as its something he hasnt had much success doing when simply concentrating on the TP identified in the HITP as being the cause of the feeling. The women had discovered the main cause of the frequency feeling is infact the pudendal nerve (or however you spell it) being aggravated by something.

They found that by using skin rolling techniques in the lower abdomen and between the legs they had much better success of switching off the feeling. Bill has given me some advice as to what to do next with regards skin rolling in these areas which I will try, however I am planning a trip up to see him very soon now to let him show me how its done, and I am hoping that using this technique I will be able to switch off the sensation.

However the key here is what is aggravating the nerve?!?! Will keep you posted how I get on.

[scotsman]

I 'think' I do skin rolling as part of my routine but I've never been sure that I'm doing it correctly. I might pay Bill a visit as well just to make sure I'm going about it correctly.

[garyholc]

I've booked to go and see Bill on the 9th Dec will let you know how I get on. In the meantime the frequency persists, and I have ordered some Prelief to see if that helps at all. I have been monitoring the trend with regards the frequency as for me this is pretty constant.

Wake up around 8am, go to the toilet.

8.25 - feeling of needing to go ramps up immediately to level 4 (on a scale of 5 where 5 is urgent to go)
8.50 - feeling of needing to go is now a 5 and I have to try my best to ignore it by keeping myself occupied
9.15 - feeling reduced to a 4
9.30 - down to a 3
9.45 - now at 2
10.00 - no feeling at all

I can then go on until 4.30pm, maybe 5-5.30 without needing to go. Obviously the actual motion of passing water or a bowel movement is aggrivating something, and ignoring it helps calm whatever it is down. Now whether it is the nerves around the bladder or the muscle I would be interested to know.

Those of you with frequency, do your patterns seem to mirror mine? Or do you tend to give in and go shortly afterwards, thus once again starting the viscious circle or aggrivation for the nerves/muscles? I find that if I go to toilet an hour before I go to bed, I can usually get off to sleep quite easily and will not awaken at all during the night.

Also, after a drink on the weekends (have eliminated all alcohol from my weekdays), the frequency feeling totally disappears, so what is being calmed here, the nerves, or the muscles, or both??

Anyway will keep you posted how I get on during my visit to Bill on the 9th.

[calguy]

That really doesnt sound that bad, I mean you can go all day without having to go! I go like every 2 to 3 hrs which is what bothers me and I get up at night at least once. Not to say its not annoying but I would go 1.5hrs to not have to be bothered the rest of the day. I'm just saying count your blessing and I think this is something you can get to the bottom of and clear up. Definately keep me posted as I told my PT and we are going to work those areas with those techniques.

[mpozatek]

You don't have frequency. Normal is 8 times a day. I would pay millions of dollars to have your situation. I can sometimes go 4 times an hour.

LIke they say, count your blessings.

[calguy]

When my frequency is really acting up it is about every hour but I can stretch it to 2 hrs. This is not as bad as some but it definately is more frequent. I drink a lot of water though and I have a coworker who goes all the time because she is fitness nut and drinks water all day. She thinks nothing of it. Wish I could have the same outlook with mine.

[garyholc]

You don't have frequency. Normal is 8 times a day. I would pay millions of dollars to have your situation. I can sometimes go 4 times an hour.

LIke they say, count your blessings.

Oh I do!!! Just out of curiosity though, I could go a lot more often if I gave in to the feeling. . . . . can you not ignore your urge to go because I find after a while my urge tends to decrease until it disappears completely. . . ? I find in particular getting to sleep can be difficult, as after I have my last pee of the day, I have the frequency feeling for about an hour, so I now go to pee an hour before I decide to go to bed.

[pminturn]

I used to be in the 15 plus range. There were times when I'd have to go every 20-30 minutes when my frequency was at it's worst. But I'm trying to ignore the urge and hold it longer. I'm around 8 times or so myself now. The stronger stream I get from holding it longer also seems to give me a better relief of the urgency.

[papichullini]

How much £££ is an appointment with Bill?

[garyholc]

The initial appointment is £100, then subsequent appointments are £70. However if you are travelling far, Bill does take his time with you, so expect to be in consultation with him for at least an hour, as he is the sort of chap you spend time speaking to about your condtion and he won't try and rush you out. Give him a ring on 0131 332 8698

[JoVoChicago]

When I have the urinary urgency feeling - I'm dribbling shot glasses of urine like - every 5-10 minutes - I keep going to the bathroom over and over like that because it feels like it's going to blast out of me - but then - only dribbles.
It can be maddening and very anxiety provoking for me.
I have found that turning off all the lights in the house, putting on a meditation CD lighting a few candles, lying a heating pad on warm on my abdomen and getting in the pulse range of 50 -60 with my RSA Breathing can rid me of the urge for hours at a time.
It's not easy - but it works.
Not giving in to that sensation though is difficult -maddening - panic inducing.
It takes all the concentration I can muster to work with it.
Also - I find it happens to me on my first urination upon awakening more often that any other time.
I've been getting up to pee atleast 3 times a night for the past 15 years I would say.
Interestingly - after sex - like 30 minutes after - I pee like a racehorse - it burns like hell - but I really feel relieved.
I would say that the urinary feeling is the most distressing symptom of all for me- worse than the knives slices in the abdomen - worse than the feeling that a ghost ran up and kicked me square in the nuts - out of the blue - or anything else.
It is true that 8 times a day is normal - so I time myself - I try not to give in and dribble anymore than every 2+ hours no matter how I feel - thus far it has always corrected itself.
I know it's a terrible feeling - but - try what I do and see if it helps - I hope it does buddy.
I sympathize as well as empathize and I wish you luck.
Take care...
Joseph

[Silas1066]

I can relate to some of the stuff here...

The more I go, the more I HAVE to go. In other words, something is getting aggravated when I urinate, and I have found that the more volume of urine produced, the less the irritation.

I am trying to limit myself to 6-8 times a day. 10+ is a bad day for me.

I was put on Flomax back in 2002 (when symptoms first appeared) and this helped--but not immediately. Took a couple weeks or so.

[DMcU]

I was at one point so bad that I could urinate (dribble more like) up to 4 times in the half an hour before I went to bed. I shared rented accommodation with students and my room was the furthest away from the toilet - embarrassing!! I was on Xatral (available in Ireland) and apart from that just saw palmetto. Again I have this muscle 'pressure' nearly forcing me to void. It's very distressing but I find that being in good humour gets over it, by keeping busy and not allowing it to take over. I'm not so bad now thankfully, around 7-8 times a day is the amount I actually go. Now uro's ask a question that annoy me - 'how often do you go to the toilet'!?!!!! I find that I have to actually feel if my bladder is full as I seem to always feel in some way that I have to go. If my bladder feels full well then it's only natural to go. I get satisfaction but pain from doing this as the bladder gets sore as it fills. I hope it 'trains' my bladder to stretch and hold a decent amount of urine like it used to be able to.

[klev]

I'd like to revive this topic. I'm new to the forum - appreciate everyone on here sharing advice! I'm not certain I have CPPS, but things are heading in that direction.

Initially I couldn't sit down due to perineal pain and I was urinating every 30-45 minutes. Started PT in September and my perineal pain has improved a great deal. Also, when I started PT I was able to get my frequency back to normal for a month or so, but now I'm back to urinating every hour or two (occasionally I hit a window where I have to go even more frequently.)

If I can hold out, urinating greater volume helps make things feel better for a few hours and seems to stretch the next interval as well. However, even at the 200ml range the urge gets pretty intense and it can be very difficult to ignore. In the past my bladder could hold more than this, but it seems like it has become accustomed to voiding at 200ml - so maybe this is just my be normal.

For me, the strangest thing is that even over the shortest of intervals I'm still urinating pretty decent volume - almost always 200ml.

1. Is this a common trait in CPPS to see frequency with volume?
2. Also, I'd like to see if anyone has any further advice on holding it vs. letting it go when the urge arises.
3. Lastly, has anyone had any luck limiting intake?

I've had a few urologists advise limiting water to less then 1.5 liters. I'm 140 pounds and generally drink slightly more than 2 liters.

Thanks again, glad to have joined and looking forward to becoming an advocate for those seeking help!

[webslave]

You need to start a voiding diary
https://www.uclahealth.org/urology/work ... ctions.pdf

Submit that to your uro and see if there is any abnormality.

A healthy bladder can hold one and a half to two cups (300-400mls) of urine during daytime and up to four cups (800mls) at night. It is normal to pass urine five or six times a day if you drink between 6-8 glasses (2L) of fluid.

Normal functional bladder capacity in adults ranges from approximately 300 to 400 ml. ... epidemiological studies suggest that the normal micturition rate is approximately 8 micturitions per day and 1 or fewer episodes per night. As such, small volumes with increased micturition frequency suggest abnormality

A healthy bladder: a consensus statement

1. Frequency is common in UCPPS. 200ml is a bit low. Your total output is probably still in the normal range. The normal range of urine output is 800 to 2,000 ml per day if you have a normal fluid intake of about 2 liters per day.
2. Hydrodistension is sometimes used to improve symptoms in people with IC. That's probably why you feel a bit better after holding. It's also part of retraining in OAB. Take uro's advice on holding.
3. Limiting intake will definitely affect output. But your intake of 2L is normal.