Tweet
I went to urology at Stanford a few weeks ago, at my mom's insistence. The famous IC urologist in residence there is, appropriately, on sabbatical right now so I would be seeing a different urologist whose experience with IC was unknown. However I was still very interested in his protocol.
The visit itself seemed really promising. The doctor and the uro-gynecologist in training there were both really animated and engaged with me. And positive, which was nice! The doctor suggested a lot of new things I hadn't tried yet. He seemed to have solutions for all my problems. He prescribed me a one-time oral yeast infection medication 'just in case' that was part of the problem. He put me back on birth control under the logic that if I have endometriosis (as it seems I may) this would improve related symptoms, as well as improve the dysmenorrhea that makes my IC so much worse each month. He prescribed me an alternative (imipramine) to the amitriptyline that has been so helpful for my bladder at night but also made me so miserable with side-effects. And lastly, he prescribed a variation on the typical "rescue cocktail" that I'd recently tried twice with my local urologist.
The previous instillations I'd had were three Uracyst instillations in Spain which I was forced to discontinue after losing my job to IC, and two Elmiron/lidocaine/bicarb cocktails I had in my hometown recently. The two cocktails provided a feeling a relief for the first hour, but as soon as I voided, I either felt horrible burning (the first time), or mild burning (second time). Neither time affected my symptoms beyond the first void. So, the Stanford doctor said we'd tried using a different, long-acting analgesic instead of the lidocaine, and we'd also add a steroid to the cocktail for long-term pain management and better absorption of the meds. Also, I'd be learning to self-cath to do it all at home!!!
I was super excited to try all the new stuff, especially the new instill! I hoped that maybe it'd work so well that I wouldn't have to go through with the hydro-distention w/capsaicin I have scheduled for mid-September. I was really looking forward to my appointment with the nurse in two-weeks, but also aprehensive since being catheterized has always been really painful for me.
Anyway, two weeks later I show up and meet the nurse. I double check with her about the contents of the instillation and to my horror she says, "Oh well I haven't heard anything from your doctor so I'll just be giving you the same instillation I always give patients." "Well what is that?" I asked. "The standard cocktail is heparin, lidocaine and bicarb." "Ok, but that's not why I came, I've had that before and it isn't effective for me." "Well it's my protocol and I have no idea what else I would do for you. So that's what we're going to do."
I actually argued with her for the next ten minutes, almost on the brink of tears. But I fought them back and remained calm and straight-forward. "But I can get, and have gotten, that formula in my home town. The reason I came to Stanford, the reason I am here today, is to receive the specific instillation my doctor prescribed me when I met him! As I recall, it included a steroid and a different kind of anesthetic." Instead of admitting that there had been a miscommunication, this straight-up B**** of a nurse fought me. She tried to make me feel stupid. She told me she didn't know what I was talking about, and had never heard of such things. She said they only use a different kind of anesthetic for DMSO instills and that she hadn't used a steroid in an instill in years. She said her protocol was what she did with the IC-expert doctor who was on sabbatical. She kept pushing me to let her give me the instill, saying "You drove all the way up here, it makes sense for you to have it, and maybe next time we can talk to your doctor about the other things."
I was THIS close to caving into her out of desperation, but I held my ground. I said, "Look, it is not my fault that there has been a lack of communication between you and my doctor, but I came here today for the treatment my doctor prescribed, and you're telling me you won't give it to me. Furthermore, the treatment you want to give me is something I've already done and I've found it not to be helpful. If you or he had told me that repeated administration of your protocol instillation was therapeutic even though there were not short-term benefits, I'd go along with you. But the fact is, it is supposed to be a short-term therapy, therefore, why would I want to have it done if I already know it doesn't work?" She just glared at me! So I said, "I'm sorry, but I need to go speak to my mom about this. I don't know what to say to you." Then she said "ok well you better hurry because we have a time limit for this appointment."
Instead of talking to my mom, I marched up to reception, told them "The nurse won't give me the treatment my doctor prescribed" and asked them to print out his notes. THANK GOD his notes proved me right, explicitly stating the medications I had referenced. The nurse then had to apologize to me and said she'd contact the doctor and ask for the formula. Unfortunately, he was in surgery all day and was unable to be reached. So I just had to leave. She called me back and apologized, saying the doctor had given her the pertinent information now and I could make another appointment to come in.
I don't really know what to do now since I definitely don't feel good about this woman, and want someone I trust to teach me how to self-cath, since I know its going to be painful. But the rather clueless urologist in my hometown said he'd never heard of teaching patients to self-cath. I'll also probably have to wait another two weeks for the appointment, make the 1.5 hour drive, and pay the hefty Stanford fees. I sort of just feel like giving up on this treatment for awhile, waiting it out until after I get my hydro-distention w/capsaicin...
Just one more pointless battle in the fight against IC. But I was proud of myself for not letting her intimidate me and for sticking to my guns.
The visit itself seemed really promising. The doctor and the uro-gynecologist in training there were both really animated and engaged with me. And positive, which was nice! The doctor suggested a lot of new things I hadn't tried yet. He seemed to have solutions for all my problems. He prescribed me a one-time oral yeast infection medication 'just in case' that was part of the problem. He put me back on birth control under the logic that if I have endometriosis (as it seems I may) this would improve related symptoms, as well as improve the dysmenorrhea that makes my IC so much worse each month. He prescribed me an alternative (imipramine) to the amitriptyline that has been so helpful for my bladder at night but also made me so miserable with side-effects. And lastly, he prescribed a variation on the typical "rescue cocktail" that I'd recently tried twice with my local urologist.
The previous instillations I'd had were three Uracyst instillations in Spain which I was forced to discontinue after losing my job to IC, and two Elmiron/lidocaine/bicarb cocktails I had in my hometown recently. The two cocktails provided a feeling a relief for the first hour, but as soon as I voided, I either felt horrible burning (the first time), or mild burning (second time). Neither time affected my symptoms beyond the first void. So, the Stanford doctor said we'd tried using a different, long-acting analgesic instead of the lidocaine, and we'd also add a steroid to the cocktail for long-term pain management and better absorption of the meds. Also, I'd be learning to self-cath to do it all at home!!!
I was super excited to try all the new stuff, especially the new instill! I hoped that maybe it'd work so well that I wouldn't have to go through with the hydro-distention w/capsaicin I have scheduled for mid-September. I was really looking forward to my appointment with the nurse in two-weeks, but also aprehensive since being catheterized has always been really painful for me.
Anyway, two weeks later I show up and meet the nurse. I double check with her about the contents of the instillation and to my horror she says, "Oh well I haven't heard anything from your doctor so I'll just be giving you the same instillation I always give patients." "Well what is that?" I asked. "The standard cocktail is heparin, lidocaine and bicarb." "Ok, but that's not why I came, I've had that before and it isn't effective for me." "Well it's my protocol and I have no idea what else I would do for you. So that's what we're going to do."
I actually argued with her for the next ten minutes, almost on the brink of tears. But I fought them back and remained calm and straight-forward. "But I can get, and have gotten, that formula in my home town. The reason I came to Stanford, the reason I am here today, is to receive the specific instillation my doctor prescribed me when I met him! As I recall, it included a steroid and a different kind of anesthetic." Instead of admitting that there had been a miscommunication, this straight-up B**** of a nurse fought me. She tried to make me feel stupid. She told me she didn't know what I was talking about, and had never heard of such things. She said they only use a different kind of anesthetic for DMSO instills and that she hadn't used a steroid in an instill in years. She said her protocol was what she did with the IC-expert doctor who was on sabbatical. She kept pushing me to let her give me the instill, saying "You drove all the way up here, it makes sense for you to have it, and maybe next time we can talk to your doctor about the other things."
I was THIS close to caving into her out of desperation, but I held my ground. I said, "Look, it is not my fault that there has been a lack of communication between you and my doctor, but I came here today for the treatment my doctor prescribed, and you're telling me you won't give it to me. Furthermore, the treatment you want to give me is something I've already done and I've found it not to be helpful. If you or he had told me that repeated administration of your protocol instillation was therapeutic even though there were not short-term benefits, I'd go along with you. But the fact is, it is supposed to be a short-term therapy, therefore, why would I want to have it done if I already know it doesn't work?" She just glared at me! So I said, "I'm sorry, but I need to go speak to my mom about this. I don't know what to say to you." Then she said "ok well you better hurry because we have a time limit for this appointment."
Instead of talking to my mom, I marched up to reception, told them "The nurse won't give me the treatment my doctor prescribed" and asked them to print out his notes. THANK GOD his notes proved me right, explicitly stating the medications I had referenced. The nurse then had to apologize to me and said she'd contact the doctor and ask for the formula. Unfortunately, he was in surgery all day and was unable to be reached. So I just had to leave. She called me back and apologized, saying the doctor had given her the pertinent information now and I could make another appointment to come in.
I don't really know what to do now since I definitely don't feel good about this woman, and want someone I trust to teach me how to self-cath, since I know its going to be painful. But the rather clueless urologist in my hometown said he'd never heard of teaching patients to self-cath. I'll also probably have to wait another two weeks for the appointment, make the 1.5 hour drive, and pay the hefty Stanford fees. I sort of just feel like giving up on this treatment for awhile, waiting it out until after I get my hydro-distention w/capsaicin...
Just one more pointless battle in the fight against IC. But I was proud of myself for not letting her intimidate me and for sticking to my guns.
Comment