Bluheaven
05-19-2009, 10:33 AM
This started on the 12th or 13th. From the base of my bladder down and even externally burns constantly. On occasion I'll have sharp urethral pain, mostly down around the opening. I feel full almost constantly but when I go it's not very much. Not a dribble, but not a lot either. My stream is on a roller coaster it seems. Sometimes it floods out easily and sometimes it doesn't want to start at all. Since this started the stream will stop mid pee when I'm not finished and I have to sit and wait a bit and then go a little bit more. Sometimes it starts back up, sometimes I have to push a bit. Sometimes it's very weak and sometimes it's not.
Mostly it seems it troubles me in the morning through mid-late afternoon then it calms down when I stop drinking at 8:00-8:30. When I first wake up I'm ok.. I'm usually somewhat fine until after breakfast and my first drink of the day.
I'm not sure what has started this or if it's a combo of things.
I've been on elmiron since the 27th starting with 1 pill a day for a couple days then moving to two pills for a few days then all three pills.
I started atarax 25mg just before bed on the 1st. My prescription says 4 a day but since most people and docs only prescribe one at night thats what I started with.
Somewhere around the 4th or 5th I recieved a sample pack of cystoprotek and took the 4 as directed (1 for the first two days then 2 the third day) and had no issues stomach or bladder wise with those. So I ordered a bottle.
Somewhere in there I also added in a 2nd atarax when I woke early morning (usually 4:00 but can be between 3:00 and 5:00)
On the 8th I'd had my first rescue instill. I took an atarax and a valium before hand so I would be more relaxed. I was able to hold the instill in the entire 3 hours they told me to, and other than some mild sphincter pain afterwards for a day or two my bladder was fantastic and I pee'd normally with decent stream and amounts. It started to wear off around the 10th when I started my period
PMS cramps were horrid on the 11th so I was taking 4 per day dilaudid plus advil. On the 12th through 13th i was on just advil.
on the 12th I recieved my cystoprotek bottle and started those twice a day with breakfast and dinner.
I was supposed to have PT that day but had to cancel because of my period.
That day at lunch I passed a kidney stone.
Also on the 12th I started taking a valium at night about an hour after my atarax to help me sleep.
The 13th I had my 2nd rescue instill. Still on my period I made sure to clean really well with the wipes they have you use to get clean catch urine samples. I took an atarax before that but not a valium and was no where NEAR as relaxed. They had trouble getting the numbing solution into the urethra and the cath was more painful. I couldn't hold the solution in as long and had to take a percocet.
On the 14th I took an atarax in the middle of the day as well because my allergies had gotten bad after a walk around the block.
on the 15th I upped my cystoprotek to 3 a day. Still on two atarax a day and the valium at night.
On the 16th the sleepy effect from the atarax had started to wear off. I upped my dose to 50mg at bed time plus the one in the early AM and I dropped the valium to 1/2 a pill.
This continued through sunday. The weak stream/difficulty peeing and only being able to get a little out at a time had been getting progressively worse and I wondered if I had too many relaxing drugs in my system and my bladder was too relaxed to force the pee out. Sunday was when the occasional sharp urethral pains really started to get bad so I started 1/2 percocet for those.. usually just need one per day.
Monday I went back to one atarax in the morning and one at night 1/2 a valium (trying to wean myself off of them slowly).
This morning I didn't take the atarax in the AM. I'm going to drop to the original 25mg before bed. Through tomorrow I'm going to only have 1/2 valium at night and then drop them to 1/4 pills through the weekend and then go off all together.
In that same time span We went out to eat three times. So I've had beer batter fish with fries and then two cheeseburgers (no sauce/mayo, no onions, no tomato.. but they did have chedder) with fries. I also had questionable pasta at home (butternut squash but it had parmesan and a couple of other ingredients in it) and an ice cream that had caramelized pear and pecan bits. I also had plain popcorn (safe ingredients only) twice.
I should also add that I switched from my usual distilled water to a different brand. Maybe that has something to do with it too?
We also dug up the front flower bed and planted flowers (well... the fiance dug.. I planted) which was the most work I'd done in a while.
So now I'm on three elmiron a day, three cystoprotek a day, one atarax at night, 1/2 valium at night and 1/2 percocet as needed. This morning has been the worst so far for symptoms.
I'm not sure if it's the combo of my period + kidney stone + catheter that did it, the foods, one of the meds or what. We had a thought that maybe it was the cystoprotek but when I did the three day trial sample pack I had no increase in symptoms at all. Maybe I've picked up an infection from that last instill.
I'm going to be sticking to my diet for sure in case it was the foods. I have two cereals that I've been eating for a while before this flare started that I know are safe and only contain ingredients from the 'safe' side of the food list. I have white bread that is mostly fresh made and only has safe ingredients and no preservatives or additives. I have a couple of snacks cookies that are safe ingredients only that I've been having for a while with no issues and the pear bars. For dinner I usually have a mildly seasoned fresh chicken or beef (light sea salt only or sometimes some herbs from the safe list) with a safe side dish which is usually fresh potatoes and a green (green beans, broccoli) or a squash or carrots.
I don't think it's the cystoprotek as the trial didn't bother me and sometimes I feel a bit better after taking one but who knows?
So now I don't know what to do really.
I have my third instill tomorrow so I'll for sure ask my NP about it all. This time I plan to go back to a valium before so I can be more relaxed... and perhaps a macrobid after. I wonder if the urethral manipulation from the numby stuff plus the catheter is causing the flare? Even though I was great after the first one? I do have a PT apt just a few hours before my instill so hopefully things will be more relaxed. Perhaps that will shed some light on the condition of my pelvic floor muscles.
But should I continue on course med wise and see if it's an infection or from the foods or all the other things that seemed to happen all at the same time?
Should I stop the cystoprotek now or wait and see if things don't get better and then stop it? I don't want to change too many things at once and then not know what helped (if anything helps at all) or stop taking it to find I get worse. I know some people on here had a minor flare when starting it but then after about 10 days or so it went away and then it really started to help but from what I understand people that flare from it aren't all that common.
I know this is a lot to take in and sorry it's a long read. There was a lot of potentially bad flare causing things that happened all at the same time and I'm just not sure what my course of action should be. Wait it out because of that or what?
The stress from all this is through the roof too. My face is soooo broke out... I look like I'm 16 again :(
AAGGGGHHHHHHHHHHHHHHHHHHHH!!!!!!
Mostly it seems it troubles me in the morning through mid-late afternoon then it calms down when I stop drinking at 8:00-8:30. When I first wake up I'm ok.. I'm usually somewhat fine until after breakfast and my first drink of the day.
I'm not sure what has started this or if it's a combo of things.
I've been on elmiron since the 27th starting with 1 pill a day for a couple days then moving to two pills for a few days then all three pills.
I started atarax 25mg just before bed on the 1st. My prescription says 4 a day but since most people and docs only prescribe one at night thats what I started with.
Somewhere around the 4th or 5th I recieved a sample pack of cystoprotek and took the 4 as directed (1 for the first two days then 2 the third day) and had no issues stomach or bladder wise with those. So I ordered a bottle.
Somewhere in there I also added in a 2nd atarax when I woke early morning (usually 4:00 but can be between 3:00 and 5:00)
On the 8th I'd had my first rescue instill. I took an atarax and a valium before hand so I would be more relaxed. I was able to hold the instill in the entire 3 hours they told me to, and other than some mild sphincter pain afterwards for a day or two my bladder was fantastic and I pee'd normally with decent stream and amounts. It started to wear off around the 10th when I started my period
PMS cramps were horrid on the 11th so I was taking 4 per day dilaudid plus advil. On the 12th through 13th i was on just advil.
on the 12th I recieved my cystoprotek bottle and started those twice a day with breakfast and dinner.
I was supposed to have PT that day but had to cancel because of my period.
That day at lunch I passed a kidney stone.
Also on the 12th I started taking a valium at night about an hour after my atarax to help me sleep.
The 13th I had my 2nd rescue instill. Still on my period I made sure to clean really well with the wipes they have you use to get clean catch urine samples. I took an atarax before that but not a valium and was no where NEAR as relaxed. They had trouble getting the numbing solution into the urethra and the cath was more painful. I couldn't hold the solution in as long and had to take a percocet.
On the 14th I took an atarax in the middle of the day as well because my allergies had gotten bad after a walk around the block.
on the 15th I upped my cystoprotek to 3 a day. Still on two atarax a day and the valium at night.
On the 16th the sleepy effect from the atarax had started to wear off. I upped my dose to 50mg at bed time plus the one in the early AM and I dropped the valium to 1/2 a pill.
This continued through sunday. The weak stream/difficulty peeing and only being able to get a little out at a time had been getting progressively worse and I wondered if I had too many relaxing drugs in my system and my bladder was too relaxed to force the pee out. Sunday was when the occasional sharp urethral pains really started to get bad so I started 1/2 percocet for those.. usually just need one per day.
Monday I went back to one atarax in the morning and one at night 1/2 a valium (trying to wean myself off of them slowly).
This morning I didn't take the atarax in the AM. I'm going to drop to the original 25mg before bed. Through tomorrow I'm going to only have 1/2 valium at night and then drop them to 1/4 pills through the weekend and then go off all together.
In that same time span We went out to eat three times. So I've had beer batter fish with fries and then two cheeseburgers (no sauce/mayo, no onions, no tomato.. but they did have chedder) with fries. I also had questionable pasta at home (butternut squash but it had parmesan and a couple of other ingredients in it) and an ice cream that had caramelized pear and pecan bits. I also had plain popcorn (safe ingredients only) twice.
I should also add that I switched from my usual distilled water to a different brand. Maybe that has something to do with it too?
We also dug up the front flower bed and planted flowers (well... the fiance dug.. I planted) which was the most work I'd done in a while.
So now I'm on three elmiron a day, three cystoprotek a day, one atarax at night, 1/2 valium at night and 1/2 percocet as needed. This morning has been the worst so far for symptoms.
I'm not sure if it's the combo of my period + kidney stone + catheter that did it, the foods, one of the meds or what. We had a thought that maybe it was the cystoprotek but when I did the three day trial sample pack I had no increase in symptoms at all. Maybe I've picked up an infection from that last instill.
I'm going to be sticking to my diet for sure in case it was the foods. I have two cereals that I've been eating for a while before this flare started that I know are safe and only contain ingredients from the 'safe' side of the food list. I have white bread that is mostly fresh made and only has safe ingredients and no preservatives or additives. I have a couple of snacks cookies that are safe ingredients only that I've been having for a while with no issues and the pear bars. For dinner I usually have a mildly seasoned fresh chicken or beef (light sea salt only or sometimes some herbs from the safe list) with a safe side dish which is usually fresh potatoes and a green (green beans, broccoli) or a squash or carrots.
I don't think it's the cystoprotek as the trial didn't bother me and sometimes I feel a bit better after taking one but who knows?
So now I don't know what to do really.
I have my third instill tomorrow so I'll for sure ask my NP about it all. This time I plan to go back to a valium before so I can be more relaxed... and perhaps a macrobid after. I wonder if the urethral manipulation from the numby stuff plus the catheter is causing the flare? Even though I was great after the first one? I do have a PT apt just a few hours before my instill so hopefully things will be more relaxed. Perhaps that will shed some light on the condition of my pelvic floor muscles.
But should I continue on course med wise and see if it's an infection or from the foods or all the other things that seemed to happen all at the same time?
Should I stop the cystoprotek now or wait and see if things don't get better and then stop it? I don't want to change too many things at once and then not know what helped (if anything helps at all) or stop taking it to find I get worse. I know some people on here had a minor flare when starting it but then after about 10 days or so it went away and then it really started to help but from what I understand people that flare from it aren't all that common.
I know this is a lot to take in and sorry it's a long read. There was a lot of potentially bad flare causing things that happened all at the same time and I'm just not sure what my course of action should be. Wait it out because of that or what?
The stress from all this is through the roof too. My face is soooo broke out... I look like I'm 16 again :(
AAGGGGHHHHHHHHHHHHHHHHHHHH!!!!!!