My recent trip to the ER

[sabstory]

I put it off as long as I could. I had horrible pain all day, and I was almost completely unable to urinate. I would have to strain to get out even a few drops. I managed to wait until my husband came home at 7, but by then I was completely miserable, shaking and sweating, crying and hysterical. We went to the ER, where I had to wait for almost 2 hours, and then they cathed me. I had 700 ml or urine even after I tried to urinate in a cup for then, I might have gotten 1/4 ounce after 10 minutes of trying. They gave me a phenergan shot and a morphine shot, wrote me a script for Norco and sent me on my way. I had to keep the foley cath in, and I am supposed to follow up with a doc this week. The cath is miserable. I feel like I need to go to the bathroom constantly. I tried to go to bed, but I couldn't. I am sitting here watching doctor who, and hoping I will get sleepy enough to not notice the cath soon. Has this happened to anyone else? Any advice?

[ICNDonna]

I can think of three things. If you still have the catheter, if they didn't fasten the tube to your leg so it can't pull, you could tape it yourself --- reach down to about your knee and take hold of the tubing and bring it up about six inches and tape it to your leg. The catheter pulling can really be awful.

The second thing is to avoid straining --- straining can cause the tissues to swell, which makes it even harder to urinate. When you see your doctor, I suggest you have them teach you how to catheterize yourself in case this ever happens again.

Also there are medications that help those muscles relax so you can go --- the ones I immediately think of are hytrin, flomax, cardura --- and I'm sure there are others.

I hope your today is better.

Warm hugs,
Donna

[sabstory]

The uro just called, they don't want to see me until Thursday, and they want me to leave the cath in until then. Is it supposed to stay painful? The Norco they gave me in the ER doesn't even touch the pain. I made an appt with my PCP for later today, I am hoping he will be able to give me something that helps more with the pain, or I will probably end up back in the ER tonigh. I am completely miserable. Thanks for any advice. I am just having a really rough time right now.

[sabstory]

They did take the cath out on Thursday, and I have been able to pee. I am a bit worried though because it is starting to take more and more effort to get it to come out, which is what happened right before I was completely unable to go at all. Fingers crossed, catheters suck, but a overflowing bladder hurts worse. I was able to stay all day at a friend's house today. She has a very comfortable couch and did not mind that I barely moved from it, and had to take my pain meds. It was great to be able to talk with her and feel supported. It was awesome to get out of the house in a way that doesn't stress me out, no searching for bathrooms or trying to figure out which chair is going to cause the least pain. For an extended period today I laid on the couch with my knees bent and my feet on the couch in front of me, sort of yoga-like. It relieved some of the pressure and I could still talk to my friend and keep an eye on my daughter. My pain levels are off the charts, my doc said I could double my Norco, and I am still taking the Tramadol and Toradol, but I still have pain. I don't know how to fix it. My best solution so far is to find a position that isn't making it worse and then get very very still. Not very proactive, but after 6 months of pain that doesn't ever go away completely, I am trying to be content with not making it worse. I go back in to my PCP monday, I am going to see if he want to try another pain med. I am also trying to get in with a pain management physician, but they all have different processes, I will jump through their hoops though, because I am tired of being in pain, everyone around me is tired of it too. I feel like the perpetual black cloud hanging over my friends and family. They don't know what to plan, or to cook and they want to help me, sometimes I think they want to throw the towel in, but they have been very nice and I appreciate them. Don't mind me tonight, I took an ambien a couple of hours ago, and I am a bit down, because I shouldn't still be awake now. Well, I promise I will write something more uplifting later in the week, I am going to see if sleep is in the cards now.

[rsoakley]

I am so sorry you are not feeling well. I know pain can get us in a bad place emotionally. I've noticed that when my body is in unrelenting pain, and I have the bladder issues like that then sometimes I have an infection as well as a flare going on. Have you tried taking the brown pill (Pyrelle)? It calms your bladder down from spasming. A catheter would definately make it spasm. Try sitting in the butteryfly position before you go pee. That opens everything up down there and would help things relax. Maybe it would flow a little easier. I hope you feel better soon and get some rest.

[Jinny Jean]

i feel so helpless!!

I am having uch a hard time peeing right now and the have to go feeling is absolutley horrible, I cant think straight and I am lying in bed curled in a ball. This moring I had really bad discharge and it was a little bit itchy so I used a monistat three day ovule thing and it BURNED and made it worse so I just spent a haf hour douching it all out!!!!!!!!!!! I dont know if this flare is still from the antibiotic I took last week or what is going on! What should I do! I normally never flare like this and im scared. I considered going to the hospital and getting a catheter just in case I really cant pee later... It feels like I need a permanent one in me!!!! I have a prescription for flomax but I have not used it yet. If I take it will it help me relax enough that I dont have to strain really hard to go!I know pushing makes the tissue swell up but I cant not push Im just in agony! I just want someone to help me!! Im not gonna eat anything but pears and chicken for the next week, I have no idea how to make it better!!! It was my boyfriends day of and I cant even do aything because I am curled up crying I feel so helpless they cant even do anything for me in the ER! What do I do!!!!!

[sabstory]

I am so sorry that you are having a rough time Jinny, do you have an appointment scheduled with your doctor? I am trying to follow a lot of the advice that I have found in these forums, some helps and some doesn't, but at least it gives me some ideas of what to try.
rsoakley: the pyridium causes retention in me. I can't take it, but I wish I could.
I hate this disease. I realized today how much this disease has taken from me, even something as watching my daughter swim exhausts me, and my meds make me get hot faster, so I can't stay outside for long at all. I am going to try to get in with a PM doctor this week and hopefully a new Urologist soon.
My mother is really interested in the Mayo clinics, unfortunately I live in Oklahoma and it would be a long trip from here, but I am trying to keep an open mind.
Good luck to everyone, and I will keep posting with things I find out.

[ICNDonna]

My suggestion is to take the flomax. If it doesn't work, there are other medications that will do the same thing. The more you strain, the worse it's going to get and the flomax may help. In the meantime, you might try sitting in a warm bath to help you urinate; sometimes that will help relax the tissues --- and it's okay to go in the water.

Donna

[Jinny Jean]

Thank you I did exactly that Donna, I took a bath with baking soda. I also took a pyridium which helped a bit as well... its 6 am now, and I feel a tiny bit better. Just took my elmiron and an allergy pill, I am tempted to take the pyridium again... just until this flare has settled the heck down! lol Im so tired, and drained from fighting this. My mom found the catheter that i got back in the hospital, so i have that as back up. I have been able to pee ok on my own for a bit now as it settles itself...

Thanks

Jenn

[Mothergoose]

Hi Jinny Jean

I have replied to your posts a few times as I have a lot of the simular problems. I have had these problems for years and have a recent episode as well.

I wrote you about thaking one med at a time.

For me what I have found is if the retention gets bad and I have to be cathed, or take a med that makes it worse. I have a really hard time peeing and with pain for at least 3 days after it has happened.

I realize everyone is different, so I am not sure this will be the case for you.

I am quite stubborn and find it is a very visious circle: retention, cath, or meds, increaded retention.

If I can wait it out for the 3 days, which of course if I am not peeing at all I can't do, this is an emergency. I only wait as long as I am peeing some still, then I drink lots of water to try to help flush things through, and try to pee about every 20 mins, and dribble a bit, some urine out is better than none.

I ussally find if I can get past the 3 day mark, things slowly get better. I do sometimes end up with a UTI a week or so later from the retention.

The times I have gone back and gotten cathed again, it starts the cycle all over again.

Things that have helped me is AZO (pyridium). I find if I take an rx dose, it increases the retenion, I have learned through trail and error I can take AZO OTC, one pill at a time this is quite a bit lower does than rx pyridium , it helps with the pain. When I take it at this low of a dose, I can take it every couple of hours, you need to read the label so you don't take more in a day than allowed on box.

Heating pads on lower ab, I use it at a med setting, high feels better but if you use it lots you skin dosen't like this, and my Dr. has siad this is not good for you. So med is a comprimise. I am using mine right now, I find if I place a pillow over it it helps to keep an even pressure over my abdomine.
IC shop sells a V shaped pelvic heating pad that you heat in the microwave, which I like the heat and the weight, but it means having to get up and re heat and yes even this is too daunting to do at times.

I will soak in a warm bath, I find this it will help me pee easier right afterwards. Sometimes I just fill a big bowl with hot water and soak my lady bit, this helps me pee some too, but it is not as good as soaking in a hot tub.

If you feel your ureathra is swollen, cold would probably be better to help reduce sweeling. I find a froozen bottle of water works well for this. I often put the heating pad on my back while I hold the bottle of water between my legs. I am not a big fan of cold.

I have lidocaine for VV, but if my ureathra is sore I will put a dab of this on too. Warning it burns to begin with the burning will stop after a short while and then it numbs everything. I am not sure if this is an rx or not. I was first given 2% gel, good for cathing etc, but for the freezing effect to reduce pain, I now get an ont in a 5%. I find the ont stays where you want it better, the gel will run and you may not get the freezing exactly where you want it, becuase of the burning effect I like it to stay where I put it, no need to have more of you burning than needed. I think the 2% in an ont would work too, but I could not get 2% in an ont. I also think the 5% last longer, so you can apply it less often, so less you have to endure the burning.

I lie down prop pillows around me, I then listen to audio books on an Ipod, but do what ever suites you to help take your mind off of things and still relax.

I am pretty sure I already told you I also Vaginal Valium when retention is bad, but I find it takes at least 6 hours for me to help relax things if it is going too. I don't use this all the time I save it for when the retention is bad. I am not sure if your Dr. rxed this for you or not? Or you could ask for it.

I wish I had answers for you, how to get rid of the retention, or how not to make it worse. etc. I do know it is not fun. It effects every aspect of my life.

I would also suggest you keep a voiding diary, just record times and amounts peed, amounts and what you drink, I make notations about strength of stream. My Dr says he can get lots of info from doing this, also if it documents the retention you are having.

I would call your Dr. again and let him know how miserable you are.

Good luck MG

[Jinny Jean]

Thank you MG I pretty much ended up doing all your suggestions... Pyridium works ok for me, at least it wa able to calm things down. What i did wrong was i tried to use a monistat yeast infection med. BURNINGG! I probably would have been ok yesterday if I hadnt done that... but I thought MABY just MABY it would help. Not so much. I have an appt with a uro for sometime.. they are really slow about getting back to you in Canada I will call again tommorow.

Bah I found when I was in agony like that I was seriously delirious and desperate. Its hard to stay calm and think of reduction solutions when you just want it GONE!!!!!! I am doing better today thank goodnesss! I just was able to cut the grass outside.

Thanks again for all your help! I think my next goal is to try and stay calm and NOT go to the ER if I can help it. I start to panic when I cant pee, but half the prob is im so worked up. I think thats why I become so repetitive -- because I feel helpless, even though I KNOW what I should do. I actually have a catheter here now that I had from a few months ago. I will be able to use this now without freaking and driving to the ER. I just have to remember that flares pass.

Jenn