Does it take 6 instills to see any pain relief?

[jen74 ICN Member Find all posts View Profile Close jen74]

Hi ladies.
I have a couple questions. I am seeing a new urogyne this Tuesday to get another opinion. The urogyne I am currently seeing has me doing the instialltion with heperain,marcaine,biocarb,and kenalog.
I have had three done so far. They helpe some with the pain, but I also had some bad reactions as well( as you all already know from all my previous posts on this issue). I get urine retention every time I have an instill. I have to cath the meds out as I cant pee at all after the instill. Also after the second one, I felt sooo bad like I had an infection and took some antibiotics and got better within three days, so I am sure it was an infection, though they never documented it at my doctors office since I did not do a culture to prove it.
The nurse called today to remind me that I have my fourth instill I am suppose to do next Friday the 20th. She said it takes 6 instills to get better. I am so skeptical of this. I have never heard of anyone getting better after 6 instills where they could just stop them and be fine for months or years.
I am also kind of stuck in like a rock in a hard place. I mean the instills do help me some with the pain, but also I do have a reaction to the instill and have retention afterwards and have to cath out the stuff. This bothers me alot.It bothers me more that my urogyne is not willing to change anythig. She claims this is what works.But I feel I am not like everyone else, and I am having a reaction as when I asked the nurse if any of her other patients could not pee afterwards, she said this has not happnened to anyone else. That tells me that I am very sensitive to the instills, likely the marcaine. But she would only reduce the amount to 25ccs and no more. I guess that is why I am getting another opinion on Tuesday.

I never get rid of one doctor until I find another that I believe will help me. I had to fill out a form that the new urogyne sent me and it asks for names of all physcicians that have treated me for this. I am leary to put any names down in fear in he will call her. I mean what if he is no better than her. I dont want him to ruin my relation with her ( not that I have a great one with her anyways , but you know what I mean). How do I broach this subject? I mean if I tell him I already have a urogyne, I just want to see what he offers, he may not like that, that I am being treated currently, but want just his opnion on things.

I have talked to three women who I met at an IC group that see this new urogyne I am suppose to see on Tuesday, and they all say he is very nice, and they are happy with him. So I am hoping he is good. I also met a wonen who see's the urogyne I am seeing now, and she also does not like her and is looking for another one( what a small world). I just want to phrase my words right. I cant believe I am feeling worried about getting a second opinion in fear that if my urogyne I see now who is treating me finds out, she will be ******. I know I should care less, I mean it is my body. But when I had my first appointment with her, after telling her that I had seen a couple doctors before even her, she said that I need to stop going to all these doctors and stick with one.

I wanted to tell her I would have if I would have found one who actually knows what they are doing, but I knew she would not have liked that
How do I go about this? Also, as far as the instills, Am I right in being concerned about the fact that every time I have one, it makes me have urine retention? I just dread when I have to have one, because I have to leave my whole day empty because I know I will have to be at home the whole day. I mean I have to hold the stuff in for two hours and then I know I will have to cath the stuff out and it takes me about the whole day to recuporate from it and to be able to pee right again. I just dont feel this is right. My doc made it seem like it was no big deal and to just cath if I have to. I dont like that either, as I am prone to getting infections, and I dont nessasarily like having to get cathed. My thought was that she should have lowered or chnaged the meds or something, but she will not.
Any advice is welcome and appreciated.
Jen

[waterflow ICN Member Find all posts View Profile Close waterflow]

On the instills it is different for each person. I have read where some have gotten relief with the first instill where it took me 8 months. On the new uro I don't think I would tell him you don't like your old one. Maybe just mention you are getting a 2nd opinion. Most doc's will tell you to get one. I know mine uro did. He had me go to a Uro specalists when I told him I didn't want to go but he wanted me to so I went. The only time I ever told about a doctor being awful was when I switched GP docs for medicaid. Had to give a reason so I did. Otherwise, I haven't told any doctors about not liking the others.

[HGC ICN Member Find all posts View Profile Close HGC]

I was diagnosed with IC by the first urologist I saw (within 6 weeks of my symptoms starting) but my Mom wanted me to get a 2nd opinion from someone who specialized in IC. When I told my urologist I was getting a 2nd opinion he said I think you should. He said if you were a member of my family I would tell you to do the same. He said any Dr. who is nervous about a patient getting a 2nd opinion hasn't done their job properly. He said I have given you every test possible so feel free to have them copy your records at the front desk to take with you. 15 years later he is still my Dr. and I trust him with my life completely.

As far as the instills go - everyone is different. I have been using DMSO and Solumedrol every 3 weeks for 15 years and at first I got much worse but then all of a sudden I started to get better. Perhaps you should try holding the solution for only an hour instead of 2 - maybe then you will be able to urinate on your own.

[Paininthe*.* ICN Member Find all posts View Profile Close Paininthe*.*]

My uro said he would refer me on to another specialist if he couldn't help me enough. So I think some doctors know they have limitations. You shouldn't feel bad about getting a second opinion...it's actually the smart thing to do! FYI, my heparin instills (only 5 of them) didn't help much, and I had a LITTLE hard time peeing, but nothing like the retention you have. I think it's worth getting another doctor's opinion of the meds.

[Krisi ICN Member Find all posts View Profile Close Krisi]

With my heparin instills I saw improvement after the 2nd one. The first was was horrible and I honestly talked to the ARNP they does mine and told her I had bleeding etc from that last one and she said its up to you if you want to try again. I tried again and after that I was fine. I think she changed the cath or something. I am not sure what the mixture is but in total I have only had 6 she though about stopping at 4 or 5 and I said lets just have the 6. I was in soo much pain before the instill and I was in remission during the last few. I currently have some flares but I think atm they are managable, but if they get bad again I will have them again.

As to you having retention. I am wary about doing anything I know that will cause me to have retention cause that is horrible. I would get a second opinion, because in my opinion that isn't a good side effect for anything. If I can find my bill I will post what the dose was of each med that I received for reference because I think mine may be different than yours.

Krisi

[jen74 ICN Member Find all posts View Profile Close jen74]

Thanks gals for the advice.
Waterflow, Thanks for the advice. I cant believe it took 8 months for the instills to work for you. You sure are a petient person. I think after number 5 or 6 if I did not feel better I would have stopped. They are toooo expensive, and especially if they are not helping.
HCG, I actually tried to pee a half our after the instill was in and still could not pee at all, so I dont think it matters how long I hold the stuff, it is just the reaction I get for some reason. I really want to see if this new urogyne will offer me something better.
Paininthe*.*, Thanks for the reply. I know a second opinion is always good, actually come to think of it this will be a third opinion as I have seen two urogyne's already. Just that I know some doctors do take offense, and this one I see now, I think she is the type that would. She told me I needed to stop going to all these different doctors and just trust one.
Krisi, Thanks for the advice. I am worried about the retention the instill causes me each time. I am sure it is a reaction from the marciane(numbing agent) they use. Maybe I just cannot tolerate the numbing stuff, I dont know. Can you do instills without the caine meds? I think I remember asking the doctor that and she said no, that I would be in way to much pain. I get nervous going to amy new doctor as I always fear they will be worse that the first as I have had rotten luck with urogyne and all doctors for that matter. When I got the statement and seen what they were charging for the instills, I was shocked. I mean $302 for one instill, that just seemed like too much. I looked at the itemized statement and the meds only costed about $27 bucks, so the doctor was actually charging $275 just to have the nurse instill them. Now I saw her do it, it is not even that hard to do. My hubby could do it easily as he has had to cath me after every instill since I could not pee at all. It is highway robbery what they charge for doing these instills.
Thanks again ladies for all the responses.
Jen

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

No ethical physician will object to a patient seeing another doctor for a second opinion. I wouldn't hesitate to tell either doctor. It doesn't mean you have to change doctors. And the new doctor needs to know what has been done for you before making any recommendations so you won't be back to square one.

And it can take several weeks for instillations to help.

Donna

[Krisi ICN Member Find all posts View Profile Close Krisi]

Jen,

I agree it is highway robbery. The 2nd time I went for the instill they told me what the cost was for the first one and I freaked out. I was like what? Apparently I hadn't met the deductible yet, so my insurance wasn't covering it hardly. Once it did though it was like a lot cheaper. I don't know if I was every charged the same amount each time though ... lol .. the insurance would always vary on the payment by like 2 dollars. I gave up trying to figure it out though. It was like the "surgery" cost was different that the insurance would pay probably code. Plus it isn't SURGERY! goofs! Anyway here is what my instills have in them

Heparin
NaHCO3 - Sodium Bicarbonate (yes this is baking soda hehehee )
Solu-cortef 100 mg (this was the only one that had the measurement)
They had me hold the instill about 30 mins to 1 hour.

I will have to ask next time I am in though for the other dosing. I think I might need to get one soon as the pain seems to be coming back. The only thing that sucks is that I have to wait in the line and I hate being cath'd I try to relax but I know if they like make a mistake going in I will pay the price later. I kinda get nervous if they mention someone else doing it. I am sure all the NP's in the office do a good job I just know how sensitive my urethra is, and how easy it will bleed.

Good luck with the second opinion and hang in there

Krisi

[L. Thomas Support Volunteer Find all posts View Profile Close L. Thomas]

I had instant relief from the first instillation. I still have instant relief. My urogyn doesn't ask me to retain the treatment. When I have to go..I go. Sometimes it's 3 hours, sometimes it is 30 mins. And twice since 2004 it was 3 mins.

[jen74 ICN Member Find all posts View Profile Close jen74]

Hi.
L Thomas, I was also thinking that with the rescue instills, that people usually get relief right away. I did get some relief, but the instills seem to cause me bad retention and I cant pee afterwards at all and have to cath the stuff out, which I am not to fond of doing as I get infections easily.
The nurses at the office tell me that I have to do 6 instills to know if they will help me. They also claim that after 6 instills, alot of women are pain free for months to years. I found this very unbelievable. I was thinking if this was the case, then why do so many ladies on here have to do the rescue instills all the time regularly? I wanted to say this to the nurse, but they get to defensive. They dont like you knowing more than they do.
I have already done 3 instill so far. I am suppose to do #4 this Friday, but I have an appointment with a new urogyne tomorrow to see if he is better than the one I have now. I am not happy with the one I have now as she does not like to work with her patients it seems and always pushes me off to the nurse. For example, she knows I have retention issues after the instills, but does not seem concerned at all. I however, am concerned, and believe she shoud be working with me more and possibly changing the doses of the meds in the instill or lowering them alot more, but she will not budge. I feel like she runs her office like a factory, where everyone is treated exactly the same. Every individual is different, and reacts to things differently.
The funny thing is, I went to an IC meeting at the hospital where I am seeing this new urogyne tomorrow. I met a lady there who also see's the urogyne I see now and she also is having problems with her as well and is looking for a new urogyne, so I know it is not just me.
I just pray this new doc will be more willing to work with me. I mean the instills do help me some, but I dont like the retention it causes me. That is not normal I dont think. I just hope he will have somnething more to offer. I mean I have tried so much already and have no no success. Also, I am totally against DMSO treatments and hydrosistentions. Alot of doctors dont like it when a patient refuses to do what they want. But I just do not feel comfortable with doing DMSO or hydro's. I always fear the doctor will want nothing to do with me if I tell him how I feel. It is scary. There are just not many good doctors out there. Please pray that my appointment tomorrow is sucessful. Thanks.
Jen

[Paininthe*.* ICN Member Find all posts View Profile Close Paininthe*.*]

Jen, I know how you feel. I'm doing my 5th Heparin instill tomorrow. So far I only feel a small difference, but I'm going to do all 6 before I decide to move on. My Uro tells me he does mostly DMSO and Silver Nitrate on patients....I find that hard to believe, but I also feel that the doctors tend to push on you what they are comfortable with. I'm going to ask lots more questions about the DMSO tomorrow, because that may be one of my last options now. Good luck on your appt. tomorrow.

[L. Thomas Support Volunteer Find all posts View Profile Close L. Thomas]

According to my doc, IC is very unpredictible. Many get relief instantly and don't have to have instillations regularly... the 6 are the fix for good, but for some of us it takes longer or maybe forever. I know I don't worry about what may or may not happen... more or less is fine with me. I have absolutely no problem with needing instills the rest of my life.

I can understand having to cath the instill out. Although it sound a bit unusual, the propose of the instill is to "calm" the bladder and allow it to restore natural contraction. It makes sense that if your baldder is very sensitive that it may be calmed WAY down so that it basically goes to sleep. I would talk to my doc and see what he thinks about cathing out. It may be that cathing out is the best thing to do. If instills are working I would want to keep it up.

[Sharyn ICN Member Find all posts View Profile Close Sharyn]

Re: Does it take 6 instills to see any pain relief?

Every doc is different. 7 years ago I had heparin instills for 2 years. I felt fairly good until one day it all came back.
I found a new uro near me and he started me on Elmiron instills. About 3 yrs ago I had six treatments and eventualy I went into remission. About 2 mos ago it reoccued. I am on my 3rd instill. I have had some relief, but rely on pain meds. I am unable to cath myself. I have back problems.
I am hoping that the new laws will not prevent docs to prescribe them. I am so sorry that we are suffering with this condition.
Please keep faith that you will feel better. Try to keep busy and don't let depression overcome you. I have shed many tears, but you must be strong.