1st Instil scheduled and scared to death

[tj3383]

I'm newly diagnosed. I had cystoscopy on 3/29 and it was the most painful experience in more than 20 years. My doc kept saying, "do you see that" and pointing at the monitor and all I could do was close my eyes and concentrate on not screaming. I'm now scheduled for my first instil next week. I asked him yesterday about the amount of pain to anticipate and he said it would be about like the cystoscopy. Argh. Although I agreed to the instil, now I'm having 2nd thoughts. I read about people doing their own treatments at home. How is that even possible. And for gripe #2, how am I supposed to know if something is "causing a flare" if I am never pain free to begin with.

[snicole]

hello

my treatments are not near as bad as my cysto. im sure everybody has a different pain tolerance, but the instrument they use to scope you is much thicker than a catheter. caths do come in different sizes, but i have never thought that the pain/discomfort was anything like a cysto. dont be afraid.

[tj3383]

Thanks for the encouragement. I like to think I have a pretty high pain tolerance, but who knows. I think part of the frustration too is that my doc does not communicate very well. Since this is all new to me, I don't know what questions to ask. Then I go on-line and learn all this stuff that he doesn't even mention. I don't know exactly what he is instilling. I didn't know that you actually hold it in. It just makes me nervous as to what else I don't know.

[kadi]

It is very important to know what medicines your doctor is instilling.
DMSO cocktail is one, "rescue instillations" (heparin, lidocaine, sodium bicarbonate) are another type. There are various formulas for each type of instillation, but in general...

The rescue instillations are generally soothing, but need to be done more often. Patients often learn to do these themselves at home & do them several times a week. This is not hard & the relief can be really worth it if they turn out to be an effective treatment for you.

The DMSO ones are a little harder to tolerate, especially in the beginning (the first 1-3 treatments are usually the most uncomfortable), but they get easier over time. Usually they are only 1x a week for 4-6 weeks, then once a month after that. They are usually more easily approved by insurance companies. To deal with the flareup afterwards, I usually scheduled mine for Friday afternoons so I could relax Saturday & Sunday before going back to work on Mon.

The rescue instillations worked better for me & that's what I use now, but the DMSO was definitely worth trying & many patients do get relief from them.

Very important: Keep in mind also that for every "horror" story you read here, there are many, many patients doing well on their treatments who have no need of a message board & don't post.

Welcome to the ICN & wishing you better days soon--

[kadi]

In answer to your specific questions:
1. How do people do instillations at home? We order the medicines, syringes, catheters. We mix the medicines & put them in a syringe with a catheter tip. Then we insert a catheter into the bladder & fit the syringe into the catheter to fill the bladder with the liquid medicine. Then we wait & void the solution out with the time is up. It sounds hard, but actually once the nurse taught me, it was easier than putting in my contacts the first time!
And I LOVE that I can do an instillation & have pain relief within minutes, even first thing in the morning to "save" a work day which might have been lost to a flare in the past.

2. About knowing when you're flaring, if you're in pain all the time...
Has anyone mentioned the diet to you yet? Here is a link to diet modifications that most IC patients find helpful in reducing pain & frequency. If you can get the inflamed bladder to calm down by not eating foods that worsen IC symptoms, you'll get a better idea of what works & doesn't for you. A "flare" is a spike in symptoms, a worsening. Even though I rely on a number of treatments to manage my IC, the diet is my number one treatment. Because I'm careful with the diet, I don't need as much pain medicine as I would otherwise...

http://www.ic-network.com/handbook/diet.html

Hang in there,

[L. Thomas]

I'm newly diagnosed. I had cystoscopy on 3/29 and it was the most painful experience in more than 20 years. My doc kept saying, "do you see that" and pointing at the monitor and all I could do was close my eyes and concentrate on not screaming. I'm now scheduled for my first instil next week. I asked him yesterday about the amount of pain to anticipate and he said it would be about like the cystoscopy. Argh. Although I agreed to the instil, now I'm having 2nd thoughts. I read about people doing their own treatments at home. How is that even possible. And for gripe #2, how am I supposed to know if something is "causing a flare" if I am never pain free to begin with.

Thinking back now it seems so odd that at one time I was so apprehensive about a procedure I do at home 3 times a week (more or less). I don't think the pain is as bad as a cysto. I use a really small catheter. The one in the office will probably be a larger catheter. Maybe that is why he said it was about the same as cysto. Maybe he uses the same size for both. The link in my signature tells how I do home instills.

[tj3383]

Thanks for the sound advice. I have looked at the diet, which sounds reasonable for someone who eats American food. I guess I'll just have to spend a little time trying to adapt it.

[blue]

I remember my first DMSO treatment, I was scared to death. It wasn't as bad as I worried about. It was hard to hold my bladder for the amount of time needed, lots of pressure. Pressure is the biggest issue. Afterwards I get sore. I plan a day of movies, heating pads or Therma Care heat wraps, and ice pack between my legs. Sometimes the urethra burns afterwards until the body gets used to it. I also would take a pain pill before I went.

[tj3383]

good advice on finding out the exact mix of the cocktail. I have an allergic reaction to vasoconstrictors, an ingredient commonly in local anesthetics. After another consult with my doctor, we have now agreed on the mix - sodium chloride, sodium bicarbonate, heparin, lydocain and marcaine. The nurse assures me the procedure will be soothing. The only pain will come from the catheter a size 12. She tells me the mix does not give you urgency. Patients are able to get up and go home and void at home. She said one patient lives 45 minutes away and travels home after the procedure before voiding.

I am newly reinforced for the procedure, and hopefully my resolve will last through tomorrow.

[girl]

I understand about that fear!! Having had a horrible experience with DMSO back in '95; I was terrified to start the heparin instills. I was so scared I threw up the first time!
But, that said, they are the best thing I ever did for my IC; and they don't hurt NEARLY as bad as a cysto (for me, anyways). I don't get them at home; the nurse does them in the doctor's office. A few minutes of deep breathing, and it's done. I get immediate relief, and don't feel the discomfort from the urethra until I urinate in 90 minutes or so.
So, they do help lots and lots of people, and I'll bet you'll find they're not as bad as you think.
Good luck!!

[tj3383]

I have to say, the instill was maybe uncomfortable at a couple points, but not painful. I had a different medical assistant. I asked if she was going to use a local and she said, no, but she could ask the doctor. That was approved. She was very nice and explained what she was doing every step of the way. Then she picked up a beaker with a syringe in it and said ok, this is the local, and she explained how it was inserted. I was shocked. the cystoscopy assistant did not apply a local with a syringe. All she did was wipe me down. I was a little shocked with the doctor started insertingthe scope because 1) it was so painful and 2) I was expecting him to give me the local. But at that point, allI could do was concentrate on breathing and not screaming. Afterward I reasoned the local must have been wiped on the exterior when she did the cleaning. Not a very reasonable explanation, but it never occured to me that the assistant would forget to give me the local. I guess that explains why the cystoscopy caused such a horrible pain. Anyway, the doctor apologized. I'm just glad the instill went so well and I don't have to get all psyched out every time.