Update: I talked to my doctor

[jen74]

Hi Gals.
Well, the doctor herself just called me back. I told her my concerns about the instills and how it swelled me up and I could no pee afterwards. She basically said that these instills are the only thing that will give quick pain relief. I asked her about leaving out the marcaine, but she said that if I did not have the marcaine in there, then it would be to painful for me to have that medicine in me. She said she could cut down the marciane to 25ccs and see if that made a difference.

I asked her about other treatments such as the TENS unit and she said there is the TENS unit that can be done at the physical therapist but that it takes sometimes months for that to work if it is going to help, but I could do it if I am interested in that. But basically she said she cant offer any other help other than the instills and the hydrodistention which she knows I am not interested in doing.

Now I have to decide if I am willing to try the instill again or not. SHe said that in the end she thinks these instills are going to help, but I have to do them for once a week for at least 6 weeks to see if it will make a difference. She said that if it swell up again, that I know what to do and I could cath myself until I could pee. I dont like that idea at all :O(

She said that she knows it is painful, but in the end I may get better with the instills. So that is where I am at. I really do not know what to do. She evidently does not believe in handing out any type of pain meds, that is for sure.

Gosh I just dont know what to do here. Part of me wants to get relief and thinks that maybe the instill did help me some with the pain after I got over all that swelling and not being able to pee, but I am worried that if I do another instill, what if this next time it is worse and I have to cath myself for days or something. I mean last time I had to just have the stuff cathed out and I was able to get small amounts of pee out for the next day and was swelled since my urine stream was so thin and I had to push to pee. But it did get better after a day and half. But what if I have a worse reaction next time? That is my concern. I dont want to be having to cath myself all the time.

She said that the meds may have just caused local irritation and that it did not effect the nerves or anything. Anyhow, that is where I stand. I cant believe she offers nothing else though as far as pain relief goes. I also told her about how I feel like I dont empty my bladder all the way and she said no one ever does, that all people leave some urine in their bladder after they pee. She said the a person with IC just feels it more.

Well, I have two days to make a decision on what to do. So basically she wont leave out any of the meds as she said that the combination is what works best. She did say she could cut back on the marcaine some, but she cannot omit it because I could not handle the pain without it.

What do you gals think? What would you do? I was at least happy I got to talk to her this time and not a nurse. Oh, I did ask her about if people do the instills at home by themselves, and she said she does have a couple women who do because they need them often. The nurse told me when I asked her, that NO people cant do them themselves at home. So much for what the nurse knows. I just still am unsure what to do though. I hate this pain and feel like I have no choice. Thanks for listening gals.
Jen

[waterflow]

For the TENS you get a doctor's script and take that to the physical therapist and get it through them. That is how I got mine. Or you can buy them at pharmacy or stores on the internet but you still need a script. You will have to decide on what you do. If it were me I would find another doctor. She should be willing to leave something out. There are more then just one kind of cocktail instill. Which ever way you decide I hope it turns out good for you. The one thing my Uro has always said to me was that I was the boss. He works for me. I had an awful time deciding and I would ask him what he wanted me to do. Trying to make him happy but he has told me over and over I am the boss.

[jen74]

Hi Waterflow.
Thanks for replying. I am so undecided. I know I need pain relief though. This is just awful.

She did not mention me needing a script for the TENS unit though. I still have no clue what to do. She did not seem willing to change the instill cocktail though. She just said that she could cut some of the marcaine out if I wanted. So that is where I stand now.

The only good thing that came out of doing that instill was that I had less pain Sunday and yesterday and less frequency. But now I am starting to feel pain again and feeling like I have to go pee all the time just like before. She said that it takes at least doing the instill once a week for 6 weeks to see if it will really help. I would do it again with no problem if I knew it would not cause me that swelling and not being able to pee the stuff out. That scares me. But at the same time I need help and relief.

Thanks again for listening. I am at a loss.
Jen

[catlover2]

I couldn't stand the Marcaine in my bladder. Lidocaine 2% works well for me. As far as the TENS unit goes, your regular doc can write the prescription for it. You do not have to go to PT to get a TENS unit. The unit I got from EMPI came with idiot proof instructions. I was grateful for those instructions because the book that came with the unit wasn't much help.
I know you have read about my Botox experience. I am now on my fifth uro/urogyn. If my doc tells me I'm crazy, or that I'm not in pain, or isn't willing to work with me to find a treatment that works, I find a new doc. My new uro is two hours away. You might have to travel to find a doc that you like, but every minute in the car is worth it.
There are many recipes available for rescue instills. Here is the link for the ICN's list of rescue instill recipes.
http://www.ic-network.com/handbook/r...illations.html

[Moonheart]

I think that if your doc isn't willing to give you pain meds while you are waiting for the instills to work, then you need a new doc. She obviously only has a certain comfort level and if you two don't mesh, you should find someone who does.

I'm sorry you are still suffering like this.

[ICNDonna]

Since you did get some relief from the instillations, you might want to try at least one or two more. I didn't have the same solution, but when I had instillations the first few were very painful, but they helped over the long haul and it was well worth it.

If you're in doubt, it's always okay to see another uro for a second opinion --- you don't need to change doctors to get a second opinion.

Donna

[kadi]

Hi Jen,
I do home instillations of Marcaine, sterile water, Sodium Bicarbonate, and Heparin.
I only use 10cc of Marcaine. If I hold the solution longer than an hour, it burns. One night I fell asleep with the solution in, but spent the next day with incontinence leakage.

A couple of ideas to talk about with your doctor:
1. Reduce the Marcaine (which you already did talk about)
2. Reduce the holding time (When I had DMSO cocktail, I started by holding it 10 minutes, then worked up to 20 minutes. Now that I'm using the "rescue instillations" of Marcaine/Sod.Bicarb/H20/Heparin, I started with 25 minutes & worked my way up to an hour over time).
3. Increase the quantity of sterile water to dilute the mix a bit & make it easier to void.

It took some adjustments of formula & concentration for me to get to my best instillation treatment, but it has been so worth it for me!

Oh & about the doctor... I'm a big fan of second opinions. Since I got IC, I've seen a total of 5 urologists. And kept two! (One local doctor & one IC specialist at a research hospital). It doesn't hurt to get a second opinion, but be sure when you go to the next doctor, that you say nothing negative about doctor #1. They close ranks very fast & may be resistant to helping you if they feel it would betray the first doctor.

Wishing you success & better days soon-

[jen74]

Hi Kadi.
I dont even think that they put any sterile water in the solution. She said they use the marcaine,kennalog,biocarb, an heperain. She wont change or add to the solution except that she said she would use 25ccs of the marcaine instead of 50ccs(which I thought was too much to begin with).
She is not to willing to change things it seems. She is stuck on that this is what works. That is why I am so undecided. I wish I coule do them at home myself because then I would adjust the meds to my liking, But she does not offer me do them myself. Maybe of I was having to do them alot, then she might.
Are you suppose to add water to the mix? Why doesn't she? I did however drink alot of water after the first instill so I did dilute it myself somewhat and that still did not make me able to pee it out. They put in a total of 90ccs and when they had to cath it out after 2 hours, I had like 375ccs of liquid in me. I also thought by drinking alot of water I would be able to pee that stuff out better, but I could not. I am at a loss and dont know what to do now or how to proceed.
The doctor says that I should still do the intsills or I am not going to get better and she has nothing else to offer me in terms of help. I am going to get another opinion from a different urogyne, but need to figure out what to do in the meantime. I am in pain and need some kind of relief, and she is not willing to offer anything else at this point.
Now the question is , do I do another instill or not. There is a very high chance I will have the same reaction I did last time and swell up and not be able to pee that stuff out. I mean if I had a reaction the first time, then it is likely it will happen again, am I right? I would not mind the cathing the stuff out if it was not sooo painful. I mean after they cathed it out last time, I had awful pain everytime I tried to pee for the whole night. It felt like I was peeing out razors. The doctor acted like it was no big deal. She said that , hey, if you cant pee it out, just use the catheter to take it out. I am thinking, what if this second time I have a worse reaction and cant pee for a longer period of time. Then I would have to cath myself more than once, which just sends shivers down my spine thinking about all that pain.
Anyhow, that is where I am. I wish I had the access to do the instills myself, then I could at least be in charge of what goes in me. Thanks for responding and hope you are having a good bladder day.
Jen

[nyyankees20251]

DO NOT GO BACK AND HAVE ANOTHER INSTILL. Having the cath yourself is an absolute horror not to mention the fact you could get any number of infections.

The doctor isn't worried about you or your pain, she is worried about having it on her record that she prescribed pain medication. It is absurd that doctors are more worried about that than the ACTUAL suffering of patients.

We all know you need a new doctor. But it is easier said than done, especially when we are captives of insurance companies. So my suggestion is this, go to your primary and explain the situation. Bring in articles to back you up that pain medication is used for IC. Say you have hit a crossroads with your urologist and need some relief NOW!!!!At this point if you have to lie, LIE! Even if you have to sign a pain contract do it. Pain doesn't just affect us physically it ALSO is very mental.

To be honest this BS is happening to much with woman. Like we are all out trying to be drug addicts. To be honest I have NEVER gotten anything but pain relief from narcotics.

I really hope you get some relief soon.

We all understand your pain and frustration. REMEMBER YOU ARE NEVER ALONE.

Laura

[Moonheart]

When I had my instill I couldn't pee either at first. Then I became totally incontinent sitting in my car in the parking lot. No warning at all! It was very frustrating.

I don't think I'll ever have one again.

[jen74]

Hi Laura and Moonheart,
Thanks for the replies, I appreciate it. As far as what you said Laura about the doctors not wanting to give us any pain relief, well I agree with you, it is very frustrating. My primary doc is no bowl of cherries either to be honest with you. I hardly ever go to see her unless I am sick with something. I have not been in to see her in ages. She always shuffles me off to see a specialist when she cant figure something out. I may have no choice but to try though. So is that the reason doctors dont like to hand out pain meds? I dont get it. My dentist was practically throwing them at me when I had my wisdom teeth pulled and I refused to take them at the time. I just dont get it. Why is it that some doctors prescribe pain meds and some dont? Are they just to lazy to fill out the paper work that they have to fill out for dispensing pain meds?

I know a lady who had RA (rheumatoid atrhritis) and has alot of pain and she takes pain meds all the time. I would think that IC is just as painful for us. Why are we denied help? I will be honest, I am not keen on taking any type of meds as I hate taking them due to all the side effects they cause, but right now I am desperate and need help as I cant handle it, I mean I am only human. Of course the doctors answer to that was, well then you will do the instills if you are in that mcuh pain. So I cant win. I would have no problems doing the instills if I did not have such a bad reaction.


Moonheart, Wow, the instill caused you to be incontinent? Did the incontinence last a long time? How long was it that you were unable to pee for? What kind of instill did you have?
WHen I went to have the instill, I told my hubby that we had better wait around the hospital for a a while until I pee that stuff out just to be sure everything is ok. Well thank goodness I did, otherwise I would have been running to the ER to get that stuff out since the doctors office was about to close right when I went back up to the office.

I would have been real ticked if I had had to go to the ER and get charged an arm and a leg just to get that stuff out of me.

I really am up in the air as to what to do. I guess it is a hard decision because I feel like nothing is helping me and that like this doctor said, there is nothing else for me since I wont do the hydrodistention as treatment. I cant believe there is nothing else. Does this mean that my bladder is going to shrink and scar up to the size of a walnut and I will eventually need it taken out? I seem to keep getting worse and worse as time goes by. I have gotten soooo much worse since this all started in May of last year. I have even gotten worse since December when I was officially diagnosed.

I mean I am in no hurry to go through that again with the not being able to pee after the instill, but then I cant imagine spending the rest of my life like this and getting worse and worse since these doctors are not helping me really.

I did make an appointment to see another urogyne who a friend of mine goes to. She said he is very nice and listens to his patients. He also supposedly knows alot about IC and about the interstim according to my friend. But I have no clue what to do until then. And even then, who really knows how good he is or not. But for now I have to deal with this current urogyne.

Thanks for you replies. I really appreciate it.
Jen

[ihurttoo]

I really think that they arent giving you pain meds because you havent been able to take other things (like Pyridium, Detrol, Vesicare, muscle relaxors, etc.) b/c of of your GI Motility issues. Since your system is so sensitive to meds, and the aforementioned cause you serious constipation and worse problems, I think that is probobly why they havent offered you pain meds. But, I could be wrong.

You might do some research and see if you can find anything that doesnt have that side effect, and then mention it to your Dr. and tell her you want to try it for pain. If she brings up the GI side effects, show her the research on it. Just a thought!

As for the instills, I can see her point about the Marcaine, however the simple switch to Lidocaine has helped numerous ICers. I would ask about trying that specifically. If she isnt open to any changes at all, I would consider finding a different Dr. After all, you cant use a "one size fits all" approach to medicine. We are all so different, and a Dr. needs to be able to roll with the punches and make tweaks and adjustments along the way.

If you dont like her or just want a fresh prespective, of course you can always find a new Dr. Sometimes it helps just to get a 2nd (or even 3rd) opinion.

Whatever you decide, I hope you find something that helps you feel better soon.

Hugs,
Amy

[dyno]

As far as the instills go, it does take a few times before you usually will see results and there are a lot of IC'ers who cath themselves and if you are careful with your sterile technique you lessen the risks of infection.

One way to look at this is if trying a few more instills even if you have to cath yourself, will get your IC to a more tolerable level then it might be worth it.

As Donna said you can always seek a 2nd opinion without changing Dr.s

Good Luck!

[jen74]

Hi Amy.
Thanks for responding. I actually think she just does not prescribe pain meds at all to any of her patients the way I took it. The nurse said that they DO NOT prescribe any type of narcotics.

She did not offer to tweak the meds or make any changes except to cut back on the marcaine. She said she could not change anything else as this is what works, those were her words. I dont even think she uses lidocaine, she only uses the marcaine, otherwise I am sure she would have said something knowing I did not want to even use the marcaine at all. But she said that is what they use in their cocktail. I even asked her if she could leave out the biocarb and she said no, that it needs to be used in order for the cocktail to work.

I wish she could just use only the steroid(kennalog) as I think that is what is really going to help with the inflammation, but she wont do that either. She said that I really need to keep doing them if I want to get better, otherwise, she has nothing else to offer since I dont want to go through the hydrodistention as that is the only other form of treatment she offers or that works for IC in her opinion. Her words to me were, If you dont do the instills, you will stay in pain and you will be calling us asking for help and we are not going to be able to help you. That is what she said.

The only good thing she said, was that she does have some of her patients do the instills at home by themselves, but those are only patinets who need the instill all the time, like daily.

But she did not seem at all concerned about the reaction I had to the instill with swelling up and not being able to pee. Her answer was that it was no big deal, to just cath myself until I could go. I told her how painful it was for me and she said " well, you have to go through pain if you want to get better".

I wish she was willing to work with me more, but she does not seem to want to change things to much. So I dont know what to do. I had a couple better days after getting over the reaction of the instill which took a good day and half and thought maybe it helped me some in the end, but now I am in just as much pain as I was before. She said I would have to do the instills at least 6 weeks for them to help.

My hubby and I are going to sit down and discuss what I should do when he gets home later. He said he is just as confused and he would not know what he would do either if he had to make a choice on this. He does think that it is concerning that I did have that first reaction though. I mean It was not like I could not pee the stuff out and after they cathed it out I was fine, It was not like that. I had a hard time and was swollen because my pee stream was very thin and not good which was a sign that things were swollen in there afterwards. Yes, I did get better after a day and half, but who knows if it would be worse a second time around. The body is funny. I mean obviously my body disgareed with something in that instill otherwise I would not have had that problem. The only question is, if I do it again, will it be better this time,, or worse or the same. I wont know of course unless I do it again though. And I am not sure what to do.

Thanks again Amy, I appreciate all your help.
Jen

[waterflow]

One thing you could ask for (if they will let you have it) is lidocaine gel. It comes in a little plastic squeeze tube. You could put that in the erurethra when you got home. That way it wouldn't hurt when you pee. That is how I do it. uro also puts it in before he does the cath.