It's never been this bad, not sure what I should do

[complica8ted]

I went to a urologist to see if he could help me with some bloody urine I've been experiencing. I've always had traces of it, but this time, it's been really bad, like I've never seen it before. He told me he doesn't know much about IC (he was NOT a young doc) and that he usually had IC patients do their own research and tell him what to do.

When I tried to tell him medications that had helped in the past he insisted he'd never heard of any of them. Then prescribed me something I already told him I had bad reactions to.

He wants to do a cystoscopy, distention, and DMSO installations. My problem is the last guy that did that sent me into several months of severe pain just from the scope, dialating my urethra, and "doing me a favor" by distending me. I can't take pain meds and I was in horrific pain for months. To my knowledge I haven't had the DMSO at all, and his plan of having me come back to do it every 2 weeks knowing the severity of the pain and trauma I was in before already has me in high anxiety. A catheter might as well be a screwdriver to me. I've never handled them well.

He seems to act like this is the only "trick" in his book, and I"m not feeling comfortable with his attitude of having patients do their own research. I live in a rural area, and most docs aren't accepting anyone new or are over an hour away in just as rural areas so I feel trapped as far as options go.

My other concern is that I am highly sensitive to just about any medication. If there is a side effect I will get it. I've tried Elmiron in the past and it gave me severe edema so I don't think that is a safe option to try again. He wanted to rush into things, I asked for more time.

Any thoughts for me?

[ICNDonna]

Re: It's never been this bad, not sure what I should do

One thing you can do is to be sure you are following an IC diet --- there's a link to the food list in my signature below. There's also a link to the American Urology Association Guidelines For Treatment, which can give you some suggestions to discuss with your doctor. Sometimes instillations are a real help, but I suggest rescue instills first. If a small catheter is used with lidocaine or Marcaine, and if you can relax for the procedure, it isn't as bad. Instills are something that can be done at home so they can be a good alternative.

Warm healing thoughts,
Donna

[L. Thomas]

Re: It's never been this bad, not sure what I should do

Did anyone suggest rescue installations? It controls my IC without problems.

[Porter212]

Re: It's never been this bad, not sure what I should do

Did anyone suggest rescue installations? It controls my IC without problems.

Hi L. Thomas,

I am relatively new to IC and have had some initial success w heparin instillations. Am wondering if you ever felt worse after one? I just finished my second set of 6. I felt awesome after 5, but ever since the 6th I've had more flarey days (urgency/freq) than good. I'm in PT for PFD, so possibly the instillation itself is aggrevating my PFD? Hoping this is an outlier and these will continue to be effective.

TIA.

[L. Thomas]

Re: It's never been this bad, not sure what I should do

Having pain after the first few instills is not unheard of. I personally did not have that problem. Some felt the preservative in lidocaine was causing the problems and switched to Marcaine. Many have found the instills are not effective enough and choose to stop them. After a few months when they start the instills again they find no problem with them. It is just one way to treat IC. It works for about 80%. If I was having flares that seem to be connected with the rescue instillations I would probably stop the instills for a while. When I first started instillations I had 3 a week for 3 weeks. I found I needed to increase them to daily. I had daily instillation for a few months and was able to cut back to only 2 or 3 a week. Now I basically need instillations during seasonal allergy seasons. The histamine response to Allergies is directly related to IC flares.Much reliable and valid data to support the relationship. You might want to discuss allergies with your MD. An antihistamine might be something to consider.

[Porter212]

Re: It's never been this bad, not sure what I should do

Thank you Louann,

Your feedback is very helpful and encouraging! In between your occasional instillations, do you use any meds to treat small flares/discomfort (e.g. Uribel etc)?

Thank you!

[L. Thomas]

Re: It's never been this bad, not sure what I should do

Thank you Louann,

Your feedback is very helpful and encouraging! In between your occasional instillations, do you use any meds to treat small flares/discomfort (e.g. Uribel etc)?

Thank you!

I don't use anything except instillations. They relieve any problems I might have. The only things that cause me flares are cranberry juice, allergies and extreme stress.

[Julie B]

Re: It's never been this bad, not sure what I should do

I have been following this. Are you feeling any better?

[laylamay]

Re: It's never been this bad, not sure what I should do

i hope you are feeling better xx

[complica8ted]

Re: It's never been this bad, not sure what I should do

Well, I guess it pays to stick with your guts about trusting a doctor or not. I had decided to seek a second opinion, rather than proceeding with the doctor that told me to do my own research...I had to wait 5 weeks before the appointment was set, but ended up in the ER twice and finally convinced them to see me earlier than that. Turns out it wasn't my bladder throwing the bloody urine but KIDNEY STONES.

So three visits with my regular doc, several rounds of blood work and urine tests and a urologist completely missed what the ER docs knew within minutes. Long story short, I ended up needing surgery to remove a kidney stone I had apparently been dealing with for at least 8 weeks by that point. So now my journey includes tons of water, and learning the low oxalate diet.

The instruments they used for the surgery, and the stent they put in only reconfirmed my severe pain issue with having things inserted to me, so my feelings toward the frequent use of a catheter for installations was definitely valid. I am the poster child for follow your gut and never be afraid to seek out a second opinion when you feel something isn't right.

[L. Thomas]

Re: It's never been this bad, not sure what I should do

Well, I guess it pays to stick with your guts about trusting a doctor or not. I had decided to seek a second opinion, rather than proceeding with the doctor that told me to do my own research...I had to wait 5 weeks before the appointment was set, but ended up in the ER twice and finally convinced them to see me earlier than that. Turns out it wasn't my bladder throwing the bloody urine but KIDNEY STONES.

So three visits with my regular doc, several rounds of blood work and urine tests and a urologist completely missed what the ER docs knew within minutes. Long story short, I ended up needing surgery to remove a kidney stone I had apparently been dealing with for at least 8 weeks by that point. So now my journey includes tons of water, and learning the low oxalate diet.

The instruments they used for the surgery, and the stent they put in only reconfirmed my severe pain issue with having things inserted to me, so my feelings toward the frequent use of a catheter for installations was definitely valid. I am the poster child for follow your gut and never be afraid to seek out a second opinion when you feel something isn't right.

It is good to see you taking command and making medical decisions based on research. There are a few links in my signature that may give you some ideas. Instills help about 80% of the people but there are several other treatments that also have good results. The key is finding a MD who is willing to "step outside" his/her comfort zone and be willing to also look at options for you.