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I hate to disappoint you Phred, but for me the intense discomfort started for me at about the same time. Kinda feels like you're trying to piss razorblades. What this means is that the seeds are cooking down there and doing their job. What to expect from my experience? More of the same for a couple of months with symptoms gradually going away at that time. When the symptoms start to subside it will be in a two step forward one step backward manner. At one point, about two months after seeding the doctor put me on enablex for bladder symptoms as the radiation had irritated the "bladder neck". I did fine for about six weeks after that (as far as bladder symptoms) but still had much discomfort. I had to discontinue the enablex at that point however as one of the side effects was retention. I had my seeding Mar.23 and am currently experiencing a backward step right now, but am confident in a couple weeks things will again start to improve to a level better than before seeding. One other note - liquids: I kept the water coming in at a pretty good clip (gal/day) and didn't worry about cutting back before bedtime as I would be getting up anyway. Keeping irrigated was probably the biggest aspect of avoiding pain. The yellower the urine the more the pain - so I tried to drink enough to keep it clear. You're probably right though at this point to cut out the coffee and booze and watch some of the fruits, juices, vegetables, and spices your consuming. It will get better. Take care - p
I had the Cyberknife radiation and am on Flomax to assist in the bladder/urinary problems and it seemed to help. They also gave me Peridium (sp) for the pain in the beginning after catheter removal and post treatment. It is used for bladder infections etc., but did not work for me. Some people swear by it though for stopping that burning pain (I hate that). The only problem I am having now is the "dribbles" at night with some discomfort but not bad at all. The rest of the plumbing seems to be working fine now. I am 21 days post treatment.
Thanx Dave ... I have an appointment with my Urologist on Tuesday and will find out if he can do anything for the pain.
I have noticed one method of apparent improvement. We took a car trip over the Thanksgiving weekend. We have a small SUV and I could stretch out in the back. I used one of those plastic, hand-held urinal thingys.
When reclining and/or lying prone my pain was reduced by 90%.
All last week, after returning from the trip, I kept my little buddy right beside my recliner and use it faithfully ... don't know why but the reclining position really does reduce the pain (for me).
When I had the worst pain, right after the ending procedure, I used Ibuprofen and it worked wonders. It was much better than the pain stuff they gave me and I was even able to sleep the whole night on several occasions. I quit taking it because I want to take as little meds as possible, but it did stop that "deep pain" I had when I would urinate. Good Luck
Is everyone in the medical profession lying to me to make me feel better???
I'm currently receiving external beam radiation and have completed seven out of twenty five treatments.
I'm borderline incontinent, the frequency/urgency is making life miserable (one "accident" in public already) and the pain/burning is back.
Oncologist referred me back to the Urologist. Urologist said only recourse is to double up on Flomax (twice daily) and continue the Phenazopridine. Only other two options are the catheter or diapers.
Urologist warned that doubling up on Flomax could cause blood pressure to drop and dizzyness could be a problem. Since I drive professionally three days a week, that bothers me. I have four days off so am doubling up on it now ... we'll see how that goes.
Getting tired of all this ... tired of everybody involved in this treatment not being totally upfront with me. Thinking I allowed myself to be pushed into radiation treatment too quickly with all the suggestions that these urinary symptoms would "clear up".
"Quality of life" has now deteriorated to a very frustrating level. Maybe I should just go back into full retirement and total solitude, cuddle up on the couch with my little friend (hand held plastic urinal) and consider myself blessed that I'm still alive.
What you are describing seems to be a bad case of radiation prostatitis and the continuation of the therapy is likely to exacerbate the current position rather than to improve it. More bad news is that the condition may deteriorate even further as the effect of the radiation and the seeds continue.
I see you had a substantial number of seeds implanted – 79 instead of the planned 40, which you say is the average or normal number – did oyu have a very large gland?
Although you say you were asymptomatic, a large gland can result in what is termed LUTS (Lower Urinary Tract Syndrome) and men with a high LUTS score are contra-indicated for radiation therapy because of the urinary problems that can follow.
I think if I were in your position I’d be suspending treatment and getting a good second opinion from a medical radiologist, ensuring that I understood just how many greys had been and were going to be pumped into my prostate.
See? No one ever mentioned that in their radiation sales pitch ... grrrrrrrrrrrr.
Darn ... sure do wish we could somehow predict our own illnesses and find great support groups like this one "before" we make our decisions.
Yes, my prostate was enlarged but the Lupron hormone injections reduced it to normal size prior to the radiation seed implant.
Right up to the time I left the hospital following the implant procedure I was urinating just fine ... no urgency/frequency/pain/burning at all, nothing.
Giving credit where it's due, I was told just prior to the procedure that I "might" experience "some" urinary symptoms following the seed implant but that those symptoms should "clear up".
I was never told, however, that during the external beam radiation sessions the symptoms might return or worsen.
Guess I just didn't know the right questions to ask at the time.
Please understand ... I'm not just feeling sorry for myself. I'm a little depressed right now and angry, primarily at myself, but, folks reading this forum are making the very decisions I, we all, had/have to make.
Perhaps someone making the radiation decision will read this and ask those in depth questions.
I took the Cyberknife treatment which concluded November 9. I am still having some minor urinary problems and am on Flomax. I hope to get off it soon but like you the answers I get are all the same, it should clear up. I have talked with one person whose urinary problems increased at about 18 months post treatment and another who had the seeds and had no problems. Try going to http://www.cyberknifesupport.org/forum/default.aspx?f=10 and rely your problems. The Drs. on this site are very helpful even if you did not do the CK treatment. Good Luck and keep fighting.
Are you sure you're emptying your bladder completely when you void? My Urologist has a portable ultrasound that measures urine volume in the bladder. If you don't empty sufficiently then urgency and frequency will be quite bothersome. Don't know if this will help but it might be worth checking out. My intense discomfort (and I do mean INTENSE) started about two weeks after SI and after about two months of pissing razorblades, etc., I was almost at the end of my rope. Things slowly started improving about that point and 8 months after SI, I am comfortable most of the time although I still occasionally experience bouts of frequency, urgency, and urine retention. During the intense part, I took Aleve (Naproxin) every morning but that's not a drug you want in your body long term as it has toxic side effects even though it's sold over the counter. - p (Alaska, USA)
I also had an enlarged prostate which was brought down to normal with Lupron.
I was already having some urinary flow problems before radiation began. Took Flomax for about 6 weeks prior to radiation and it worked great for a while then seemed to lose its effectivness.
After about 13 IMRT treatments, I was forced to double up on Flomax which has given me some relief. I have the typical frequency/urgency/flow issues but fortunately, no pain. I was concerned about the Flomax side effects but so far I have tolerated it very well. No dizziness.
I think I would probably be struggling a lot more with the urinary issues if I were having EBRT and Seeding.
Hang in there Phred. Try to focus less on the side effects and more on the desired effect.
The radiation is making you uncomfortable but it's making the PC REAL uncomfortable.
I'd strap a microwave oven around my waist if I thought it would help.
Pat ... Voiding completely? Well, depends on where I am at the time, seriously. If I'm home in my recliner with my little friend (plastic hand held urinal), yes. If I'm down at the local tavern shooting pool, probably not, but, if not, I pay for it by having to revisit the urinal in a matter of minutes but it's embarrassing to just stand there while two or three more folks come and go ... I know, I know, that's silly, but that's me.
Tony ... trying to "hang in" but it's tough. It's just amazing to me that with all the medical technology available today we have to go through this.
Thanx for the support guys and, don't worry, I'm okay ... heck, maybe it's the holiday season and I'm just a little down over all this.
It's really good that this forum exists, been a big help ... thanx again.
I had 103 seeds implanted in Jan, 2007. My urinary pain and burning have been constant since January, but have ssubsided about 30% better since Sept. Pain was so bad that I had to use a handicap bathroom and hold on to the sides in order to withstand the pain without collapsing. In may I began to suffer from hemorrhoids due to my system forcing to urinate. I increased fiber and used RoidBalm a product I found at Whole Foods supermarket, have put ice to the Roids. Roids have gone away but the uirinary pain is still severe.(11 months)
Radiation Oncologist has me on Flomax and lyrica which is supposed to block nerve pain to the brain. After 11 months of pain I am discouraged, but my PSA is currently at .34 therefore I am focusing on that. Dr says pain should subside at about 18 months.
Well I don't feel so bad now, I'm 3 months into my seeding and my frequency has been since the second month about 24+ times per 24 hours. The spasms at the 1 hour intervals at night are intense and last about 15 minutes, the first spasm results in about 6 drops and finally the last wave delivers about an ounce to an ounce and a half. All these voids during the days are spasms free until 5 o'clock then the slight spasms start and continue to get worse until I get the courage to lie in bed because sleep is little to nothing. I met with my Uro Dr, and he didn't give me much encouragement that my frequency will end soon.
I failed to mention that I had bladderretainage before the seeding so we have compounded the problem
The pain from spasms is a real problem and I may have the answer. My friend told me when he had his done his Doctor gave him Belladonna Suppitories for the urinary pain and spasms. I asked my Uro Dr, and he was very surprised that I knew about Belladonna but, he gave me a script for it. I filled it but, didn't take any and to be honest, I forgot all about it.
Night before last as I was waiting for the spasm to pass it came to mind. I tried it last nignt and got the best nights rest in 2 months. Still void 5 times but no spasms at all.
The Belladonna worked for one night?? I'm back to maybe like 12 to 14 times from midnight to 8am, very intense spasms. Durning the day the freqency is managable.Does anyone know why the spasms return with a vengence at night and go away when I get up?
There has been many drugs mentioned on this forum and most of them don't seem to work ... seems like things like urinary problems are something we have to live with.
No, no explanation has been offered to me for the worsening symptoms at night and I haven't researched it.
I notice you use the word "spasm" ... what exactly do you mean by that? For example, just before I "go" I get a tremendous surge of pain which seems to cover the entire abdominal area and burning which feels like it's in the penis.
The "pain" eases off a little when the urine starts to flow (small flow, sometimes dribbling only) but the "burning" intensifies until I stop urinating.
Once I doubled up on the Flomax and the alalgesic Phenazopyridine (one in the morning and one in the evening)the pain/burning has diminished by half (but still bad).
Phred, Your pain and my spasms are one in the same.
The other night I maked on my pad 14 times this occured between midnight and 8am. The next night I took 600mg of ibuprofen at dinner and a ex strengh tylenol at bed and I never void all night???? In the morning after I got moving around I voided freely 3or 4 times and that was it. The balance of the day I voided every couple hours with no pain. Last night I did the same meds and was back to 10 times with plenty of pain??? I can't figure it out.
Lots of things happened since my last posting.
I met with my Uro Dr. and he was very alof about my frequency and if it would get better, he said, may not. When I asked what my options were, he said, maybe we can scrap a little tissue to help empty the bladder and reduce the frequency, maybe. I got fed up and got an appointment with a specialist in Boston. He did a cyctoscope and found my prostate had a dome at the top blocking the neck, and a lot of scarring from years of retainage. Suggested I self catheter.
To stop more scarring and to reduce the frenquency.