Installations make me worse!?!

[Michelle S.]

Hi Everyone -

I am re-posting this in a new thread. I had posted this in response on my first thread.

I finally did my own installation. I didn't really have a problem getting the cath in or anything. BUT I have been in much more pain for the rest of the day. This happened after the nurses did it in the doctor's office.

My symptoms to begin with are right lower quadrant pain that wraps around from the front to the back down in the hip region. I had an ovary removed and my appendix removed which didn't help at all. Later after a trail of doctors I was diagnosed with pelvic floor dysfunction. That diagnosis I believe is correct. I just about jump off the table when the doctor feels the pelvic floor muscles. It was all caused by tearing my hamstring (believe it or not!) several years ago and I left it untreated. It caused my pelvis to pull down on one side which caused the pelvic floor to go into spasms and basically quit working. I am in physical therapy right now. And I am being treated for IC but could it be that I don't have IC if the installations make me worse? The hypothesis is that the pelvic floor problem caused my bladder to become irritated because it was hanging in limbo with no support. I just don't know if it has developed into IC. Maybe it would have down the road.

The other thought I have is that maybe it is the bladder since the installations make the exact same place have 3 times (or more) as much pain. So maybe it has something to do with that area? I don't know. It has been a frustrating guessing game. I feel like I am closer than I was a year ago. I have been suffering with this pain for a year and a half. Right before I found this doctor I just about quit everything. I had went back to college as my children are in school all day now. Then I received the diagnosis and now I am slightly better and the hope made me able to make it through. I am still in a lot of pain on a daily basis, especially when I do the installations.

Anyone else have problems with installations causing their pain to be worse??

Rhonda, thanks for the welcome! This looks like a great group!

I am adding this the next day after the installation, I woke up still in more pain. I just don't understand what is going on with me. Any insight would be greatly appreciated! :help:

Michelle

[ICNDonna]

It sounds like you might be developing an infection --- I think it would be a good idea to have that checked out.

Donna

[BigFig]

Hi Michelle, I just wanted to say :welcome: to the ICN. I have been out for a few days and missed your first post. Unfortunately I do not have any answers for you. I have not had to do installs, thank God, so far. You definitely have something going on. Have you tried calling your doc? Of course they are probably not around, being that it is Saturday, but I am sure they have an on-call doc. Hope you get some answers and start feeling better real soon and I also hope you don't have IC, but if you do you have found a wonderful site to gather information and get support.

Take care and see you on the boards!

Carol

[Judy777]

Hi Michelle!

Welcome to the ICN! This is a great web site you have come to the right place!
I have just started getting insillations at my Doctors office. Everyone is so different on how they react to the instill! I have only had two so far but after each one I have felt very uncomfortable for 24hrs after the instill. After my first instill I went to work after having the instill at 8:00am in the morning. I had to go home I was in too much pain. 24hrs after that I felt great! I did not even feel or notice my bladder that day!

I hope you start feeling better soon!

[kadi]

Not all instillations are the same. DMSO instillations often cause increased discomfort, especially in the beginning, then can bring relief. Rescue instillations (heparin, marcaine or lidocaine, sodium bicarbonate) usually bring near immediate relief. Also, I had increased burning with the rescue instillations initially because we did not realize I react to latex; changing to a latex free catheter helped. I also had much greater sucess & less side effect with Marcaine, than Lidocaine.

Check out which instillation you're having...
Maybe things can be adjusted to help you more.

[Michelle S.]

The combination in my rescue installation is:

1 ml Heparin
10 ml Marcaine
1 tablet cytotec (dissolved)

Somehow I am supposed to be able to put lidocaine in to begin with the help numb things but the way they taught me it won't work. The nurse that showed me how didn't use the lidocaine the first time and the second time the nurse didn't show me at all, she just did it but with the lidocaine because I felt so terrible after the first.

It took a full 24 hours for the increased pain to just come back down to my normal pain level. I am so confused. I know Marcaine is an anesthetic so how could it make things worse? My urethra was a little sore (I took pyridium and that helped a little with that), so the non-latex catheters probably would be helpful but what about the internal pain I had that was much worse, I assume it was pelvic floor spasms or something because it was in the exact same area but much more intense! :confused: I know it just doesn't make any sense!

About the catheters, they didn't even give me a prescription for them. They just gave me two and told me to wash them each time and use them over and over. Do you all use yours more than once or do you use a new one each time. It seemed like they weren't too worried about bacteria, but it bothers me. And can it be hard on our urethra to do daily catheterizing?

Okay, one thought about how I did the installation, when I got the catheter in, my bladder emptied and then as I was still pushing it in slowly it just stopped immediately. Did I go to far? Do you think I could have hit the bladder wall? But even if I did, I had the same problem when the nurses did it and they do these everyday on people.

The DMSO installations sound a little scary to me. I have heard it can be great but very dangerous at the same time! I don't know if I would be willing to do that one. But I am just so tired of being in pain, That is my main problem constant ongoing pain for a year and a half. It really wears on me. If I hadn't finally gotten a diagnosis I don't know where I would be because I was at the end of my rope!!

I have been reading lots of the past posts and this site is so hepful, I am so glad to have found it!

Michelle

[MsB]

Hi, Michelle sooo sorry for your pain. I to think that you may have an infection. We have to be very careful and keeping everything sterile as possible.

My rescue tx:

5mg Bupivacaine
10,000 units of heparin
100mg solu-cortef

I have episodes of spasms and retention for couple of days after, but it helps. And it beats driving 89 miles each way to my uro, weekly x6wks. I also suggest that you ask for a antibiotic before your treatments.


________________
Meds:
Avapro 300mg
Aciphex 20mg
Lyrica 50mg
Effexor 150mg
Advair 100/50 inhaler
Colace200mg
Neurontin 600mg

[rosesitty]

Michelle - I think it's absolutely NUTS that they gave you a couple catheters and told you to wash them and for use over and over! Over the past three years I've had probably 30 instills. The uro put me on a 3 x per week for 3-4 week plan and after five instillations in a week and a half I developed a raging UTI I'm still battling. Just instilling can significantly raise the chances of getting a UTI. Using a non-sterile catheter only increases that tenfold. That's just crazy. You need to tell them you want a catether for each and every instillation.

[kadi]

My doctor originally told me one catheter per week, just rinse in hot water each time. I got my first bladder infection in 30 years after only a month of doing this. There went one out of two weeks of sick leave I get per year, just the first month of the school year. I ran out of sick leave by November, leaving me 7 months without any. So, for the last 2 months I've lost 2 days pay each month.

In addition, I am allergic to five classes of antibiotics and try to use the few remaining ones as rarely as possible, to prevent developing allergy to them as well.

Under my insurance plan, a catheter costs $1.50 at the contract rate, til I reach my deductible, then they cost 30 cents. Way cheaper than losing a day's pay out of my paycheck. Yes, it does raise the cost of my instillations significantly (it's the most expensive part), and sometimes I do have to do 1-2 instillations a day if flaring, but that's still better than damaging my body with infection, missing work, losing pay, having problems with supervisors at work.

Every doctor & nurse I have seen has said to reuse the catheters, but they've written the prescription for more when I insisted.

[Michelle S.]

Thanks for the information. All of this is just so new to me. I am so thankful to have come across this board. I am learning a lot from others that have been through this. I thought it was really strange that they said I should just use the same two catheters over and over. At this point I don't know if I want to continue the installations at all. They have done nothing but sent me into intense pain and pelvic floor spasms. I am still hurting more than usual today and it has been two days since I did the installation, something just isn't right. The price of the catheters are really not an issue, I would buy one for each time to do things properly and not cause infection! Considering how much we have spent over the past year and a half just trying to figure out what it is, the catheters would be worth it if the installations worked.

I have an appointment with the P.A. tomorrow (Monday) and she is wonderful. She always takes her time with me. The doctor seemed kind of in a hurry after I had the cystoscopy (which is when he prescribed the installations as well Elmiron). He was nice and supportive but I just didn't get to have a sit down appointment with him to go over everything. I was still in the stir-ups when he went over everything.

Thinking of the cystoscopy...did anyone else have one while they were completely awake? I was completely awake during mine and then they mentioned that the next week they would start doing them at the surgery center with anesthetic. It was very uncomfortable w/o anesthetic. I did have lidocaine but I think I would have preferred not to have been awake!!

Thanks again, everyone for all of the information. It is so helpful and wonderful to have some extra support!

Michelle

[rosesitty]

kadi - I don't get these docs. They KNOW there's an increase in UTI's with instills but still insist on having you reuse catheters? That's like when they didn't have disposable needles and used them over and over. My dad got Hep B from allergy shots and died from liver cancer. I don't get that. They also know the more antibiotics we take, the more likelihood that there's going to be resistance. Does that make any sense to anyone?
Michelle - you may have had just a cystoscopy. They usually do them in-office. It's for the hydro/cystoscopy that they usually put you under.