Broken Record here?

[jen74]

Hi Gals.
I know I am beginning to sound like a broken record here with whether or not I want to try another instill tomorrow, but this is just the hardest decision I have ever had to make. I am so frustrated and cant seem to make a decision.
What makes it hard is, I am in pain and am desperate for any type of pain relief, and the instill may have helped me slightly, but that was after going through all the hell of my bladder swelling after the first instill and me not being able to urinate that stuff out and having to have it caherd out and having a messed up urine stream and difficulty peeing and more pain for the next day and half. Then things seemed to calm down a bit after that for a couple days and I was a little better, but only for two days, then my pain came back.
My hubby and I were discussing it last night, and we are stumped. He thinks I could do one of two things, he said I could give it one more try and see what happens, and if it really messes me up again, then to stop them for good. Or I could just not do it again at all and see another urogyne for another opinion. So that is going to be my choices I guess. Part of me thinks that maybe I should give it one more chance thinking maybe it will help me, then there is that other part of me saying to myself " are you nuts, look what it did to me the first time, maybe this time could be worse!". I hate my inner self sometimes
I feel like such an idiot gals because I cannot make a decision. I never had issues making up my mind before. The bad thing lately is that I am thinking so much more negative lately because of this stupid disease and because things just keep getting worse no matter what I do. I also do not trust doctors anymore at all as I truely do not think most of them know their butt from their head when it comes to IC and how to treat it.
Ok, I am done venting for now Thanks for listening. I have the rest of today to think about what I will decide (please, who am I kidding, when tomorrow comes I will be just as undecided .
Jen

[aprilmae]

Do you think you may be able to urinate easier now that you know what to expect? I know the first time I had an instill I had trouble urinating because I was so tense over what I had just experienced. After that the instills weren't any more pleasant but I knew what to expect and was able to relax to pee. I did have to tell myself to relax though and take many deep breaths so that I was focusing on something else besides peeing! I really hope you get some relief soon regardless of what you choose.

[jen74]

Hi Aprilmae,
Thanks for replying. The reason I could not pee was that something in the instill actually physically irritated my bladder and made it swell some because after they had to cath the stuff out, and later when I was finally able to pee some, my urine stream was very very thin and weak and I even felt swollen inside. If my urine stream would have been normal after the instill or even after they cathed the stuff out, then I would maybe say it could have been me not able to relax, but I actually felt like it swelled my bladder neck and that is why I couldn't pee. I have had it in the past where I could not pee because I could not relax probably due to being in a public washroom that was packed with people ( I am a shy peer'er ) , but this was different. I was relaxed but the pee just could not come out. Even a few hours later, I still had a extremely weak pee stream and had to push some to get my pee out.
Thanks again for replying.
Jen

[ICNDonna]

If you strained trying to urinate, that could have caused most of the swelling. I can't make the decision for you, but I can tell you that if it were me and I thought there was any chance it might help me feel better, I would go for it. You might want to hang out at the uro's office until it's time to empty --- then if you can't go easily, they could do the cath before you go home. You could take along a book and sit in the waiting room.

Donna

[jen74]

Hi Donna.
Thanks for the reply. It is not so much that I am worried about them having to cath the stuff out, but more so me possibly having problem urinateing later on after I go home since the stuff totally irritated my bladder for some reason which is why I had a hard time peeing after the instill and even after they took the stuff out. I was swollen.
Last time they sent me and my hubby home with a couple catheters and an instruction sheet and said if I could not pee, to just cath myself. I personally had Severe pain after they cathed me. Later after I got home and was able to get some pee out, it felt like I was peeing razors out. Also I had some blood in there which I am not sure if it was from being cathed or as a result of the meds they used in the instill.
When I talked to the doctor the other day, she just acted like it was no big deal, and said that after the instill to go home and just cath myself if I cant pee. I cant believe she was so non0chalant about it. I espressed to her how much pain I have when being cathed and her answer was " well, if you want to get better you have to go through pain".
I am so up in the air about all this. I thought that if I do decide to try another instill, I am not going to hold it in for so long this time. They told me to hold it in for two hours, maybe if I only held it in for 25 to 30 minutes. Though the meds will still likely swell me up since they did last time. ALso, do you find that if you drink alot after an instill it helps? I drank alot of water after they did the first instill, but still could not pee at all. I actually lost all feeling down there and could not even feel that I was so full. I think that marcaine in the instill did that to me. I did not like that feeling at all.
Thankd for the advice Donna. I will have to think about what to do.
Jen

[Claredale]

Jen, I have been in your situation. I went through the DMSO treatments years ago (Several treatments) and I never had any response to that treatment. My doctor mentioned that my urethea was easily irritated when I was cathed for any reason. I remember even after my surgeries I would make sure that they knew to take my cath out asap and have pain meds ready!

Last October, I had to change doctors, so one of the doctors in the office tried the heparin instill. I went into a huge flare almost right away. When my husband realized that I had an instill he was asking me why I let them do it. I told him that since I was a new patient and they really didn't have my full history since my records hadn't been sent to their office yet, I felt that I should let them go through their usual treatments. Man was I sorry especially since she wasn't able to prescribe pain meds and my usual doctor at that office was in surgery, so he didn't get my med request until the next day. If I didn't have this site, I think I would have pulled my bladder out myself! My poor hubby had to go to work that day since he had a huge meeting! He called and checked on me and I was just in an absolute top of the scale pain! He went by my doctor's office when he left work, but they said that the doctor was going through his messages then and would call it in as soon as he could. My meds didn't get called until that evening. What I am saying is that I understand that you aren't worried about that "right after" emptying, but the next days afterwards! I would have a hard time having another instill even if I knew I had the pain meds. Nothing takes away that urgency feeling when your bladder/urethea is so irritated.

Hugs to you!

t83

[jen74]

Hi Tracey.
Thanks for responding. I swear it is like you are darned if you do and darned if you dont when it comes to these instills. My doctor made me feel like if I dont continue with these instills, that there is nothing else that will help me. She said she would not be able to offer me any other help. I thought that was a pretty nasty thing for a doctor to say to a patient. I mean especially since she has really offered me nothing else except for the instills and hydrodistention(which I wont do).
I am thinking if that is all she has uo her sleeve as far as help, then that does not seem like much if you ask me.
I am sorry you had to deal with bad side effects from the instills. I did not have the DMSO as I have read alot of negative things about it. I had the supposedly better instill with the heperain,kenlog,marcaine, and biocarb. But it swelled my bladder to the point where I could not even pee the stuff out at all. Go figure. And most women have no trouble with this kind of instill. I am suppose to have another one tomorrow, but I am up in the air on it. I think it has helped me as far as the pain somewhat and the frequency, but not sure it is worth all the pain I had to go through to get a couple days of less pain. I mean not being able to pee that stuff out was pretty scary if you ask me , and having to have it cathed out was sooo painful in my opinion. There has got to be a better way to get pain relief.
Jen