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First Uro Appointment she wants to do Hydrodistension Need Advice

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  • flowerangela
    replied
    yay happy to hear youre getting started on the elmiron nekura.its working for me.let us know how it works for you.

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  • earthlady
    replied
    So glad to hear you found someone to work with you on this. I think half the anxiety over all this is from feeling no one wants to take the time to figure things out. I was so relieved when I found someone who had the patience for treating this condition, and willing try anything I suggest (with in reason that is). I really do believe that some uros don't want to deal with this condition because it can be so time consuming for them, and there is no quick fix like a surgery to cure it all. I got to the point where I could tell on the first dr. appt. how patient or impatient the doc would be.

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  • Mothergoose
    replied
    i am glad it appears as if you have found some one who can help you.

    mg

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  • cmclien
    replied
    Great news! Glad it went so well for you and that the drive was worth the trouble

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  • nekura
    replied
    Well, I have great news. Dr. Mcsherry did see me, had read the letter, and says she doesn't agree with diagnosing IC with the hydro, saying that 1/3 is helped, 1/3 has no change, and 1/3 has an aggravation of symptoms. She also said that for my age she doesn't feel a cysto is necessary and since I've had symptoms for so long I do have it. She's given me a prescription for Elmiron, some diagnostic cups to mail to a lab who would send the results directly to her if I have an infection, and a lot of free samples of things. Her office only had a 4 minute waiting time when I went it and she had IC research plastered everywhere on the walls.

    I'm starting the Elmiron on Monday when the pharmacy gets it shipped in. This is such a huge weight off my shoulders

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  • Mothergoose
    replied
    I do hope this app goes well for you and you have found someone who can help you. I am glad this Dr. has agreed to to see you.

    I get the not wanting to travel for nothing, I drove 8 hours to see a uro who had nurse Cratchett for a recp, who told me I could only have a 15 min app for my first visit, she didn't care how far I was traveling from, that was the Dr.'s rule I asked her to ask the Dr. to see if she could book me a longer app, I was told no the Dr. looked at your records and did not tell her to book me a longer time. When I got there the Dr. was mad at only having 15mins and I was much to complicated of a case for her to do anything in 15mins. My GP had sent her records of all previous test that had been done with results and a detailed history, none of which she even looked at before my app.

    Needless to say this app did not go well, I was disappointed but I just pushed on trying to find a uro who was a good fit for me, and I did end up finding one and closer to home for me, and willing to help over the phone, work with my GP when ever possible because he knows how the 3 hour car ride makes me worse.

    I see you are young and in my opinion younger people are less believed than older people, old school teaching I think.

    I know the process is hard don't give up or get too down about it, most people do eventually find someone who can and is willing to help them.

    Let up know how it goes. MG

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  • nekura
    replied
    Well, I got a reply from the office. I'm not sure of Dr. McSherry herself read the letter or not, but the office called and set up an appointment for me. I should have asked, but I freeze up so bad when speaking to doctors or nurses.

    I leave Thursday, appointment Friday. If it turns out she didn't read the letter/has no alternatives I'll be at my wits end for taking such a useless trip.

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  • nekura
    replied
    Thank you Jill. One thing that does confuse me around you reply though is that you mentioned I was diagnoses with PST? I haven't been diagnosed with PST, scope or hydro yet but that's what I'm aiming to do with just the scope.

    I wrote a letter to Dr. McSherry to see if she could at all help me out or give her opinion. I found her facebook page at (http://www.facebook.com/pages/Dr-Sus...169481?sk=wall) and then I also wrote a letter that my mom will deliver for me since she just left for New Orleans on unrelated business. I just wish there was a better way of finding doctors. I wish they'd have websites stating their preferences which would make it easier on all of us to decide which is best for us.

    If anyone is interested here is the letter:

    Dear Dr. McSherry:

    My name is (name withheld) and I in all likelihood probably have IC. I’ve held off being diagnosed for four years and have gone through tremendous pain without treatment due to my fears about the methods used to diagnose IC. I have had horrible experiences with doctors throughout my childhood that has left me with a phobia towards even the most minimally invasive procedures. It took me 6 years just to be able to have a pap smear done, and even then I now find the event extremely stressful and am a wreck for the rest of the day afterwards despite the procedure having no pain involved.

    My general practitioner (name withheld) finally managed to talk me into seeing an Urologist this past Tuesday. (name withheld) told me that a lot of Urologists have suites where they can put you out with general anesthesia to do the cystoscopy which honestly would be the only way I could go through such a thing. When I spoke to the Urologist she said that they diagnosed using a cystoscopy and hydrodistension which terrified me. I’ve been on the ICN forums for four years and have read enough responses to the hydrodistension to know that I DO NOT want to subject my already harmed bladder to that. I am more afraid of the harm and pain that could happen after the procedure than the procedure itself, but that it certainly still a factor but it is one I’ll have to live with regardless if it’s just the scope under general or not. I also tried researching the percentage rate of people who were helped, had no change, or felt they were harmed by the procedure but could find nothing except a few contradicting journals from my school library’s database. The urologist would not agree to do a regular cystoscopy under general, and so in tears I refused and left the office without help after she claimed that I was by far the most anxious patient she’s ever seen. I am very confused as to what I should do because I can’t keep living like this. I can’t work and my schooling can only be done online for this semester, but at the same time I believe that it’s more important to follow my gut than to subject myself to a painful procedure that I don’t think is right for me. What confuses me the most is how the official guidelines for IC that have been updated this following summer admit that hydodistension isn’t really necessary to diagnose IC anymore. Although I live in (name withheld) and am many hours away from your practice if you would even consider doing a cystoscopy under general anesthesia I would like to talk with you.

    Even if I were diagnosed I couldn’t go through with instillations, but I need to be able to get my hands on the pill form Elmiron. Currently I seem okay as long as I take 5 mg of ditropan daily and watch my diet, but I’ve had a few odd flares that have made me afraid to leave my house and desperate to try more options. I can just sit back and hope the ditropan has cleared them out, but that is what I’ve been doing for the past 4 years and I’m sick of the worrying about how much the scope will hurt and how I need to see an Urologist anyway. I just really need a doctor who believes me and works with me. I don’t really care how far I’d have to travel just to get that. I’ve heard so much about you from the ICN that I’m reaching out.

    I tried calling your practice to see how IC is usually diagnosed there but the receptionist said I’d need to make an appointment. I tried to explain that I live roughly 4 to five hours away but couldn’t continue because I shamefully broke down in tears right there at the prospect of going through all that effort only to have the same results from my last urologist appointment. After that point the receptionist could no longer understand me so I passed the phone to my boyfriend but the two of them got nowhere so we just hung up.

    Please respond to me even if your answer is a no just so I know you got this letter. I submitted a similar note to your facebook under the discussion forum but I was unsure if you’d respond to something so personal there. I can be contacted at (information withheld)

    Thank you so much for taking the time to read this.

    Sincerely,
    (name withheld)

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  • bob04951
    replied
    Gosh, really think you need to find another uro or at least look for a second opinion. Cannot believe that a doc wants to be invasive without trying the med route first, and with your anxiety, it does sound downright cruel. Elmiron does not have many side effects, and you would know pretty quickly (any tummy upset). Why won't he try that? Or other meds, there are so many to be tried! Usually any good uro will go the med trial first. He already DXed you with the PST and your symptoms, does he have a mortgage payment due or something? Goodness, girl, get a second opinion or another doc. Not saying he's a bad doc, but you are your own advocate, stand up for yourself! Jill, wife of Bob

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  • nekura
    replied
    Do you think Susan McSherry from New Orleans from would agree to use general for a scope and no hydro?? She's one of the guest speakers I've read about. I called her office but the nurse wouldn't even tell me how the office diagnoses IC regularly and said I'd have to make an appointment but I live like 6 hours away. I'd be willing to make the trip if only they'd be able to do what I need done. To make the trip for naught would be hideously depressing.

    Would there be any other way of contacting her to ask????

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  • nekura
    replied
    I couldn't tolerate anything going up inside of me while I'm awake. I really don't see why asking for a regular cysto under general is such a hard request if they're willing to do it for the hydro anyway. Either way I'd be going under with equal dangers. They need to stop treating everyone as a textbook patient because I surly am not.

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  • flowerangela
    replied
    i wonder if you could tolerate the potassium sensitivity test or the urodynamics testing and that would be enough to get your elmiron..they do have several testing options available..dont know which one is the most effective/least invasive you'd have to do your research on them and ask your uro/gyno

    Leave a comment:


  • nekura
    replied
    But I'm not in that much pain. It's controlled with ditropan, and trust me, this IS IC. Both my grandparents had it. Why would I inflict more pain on myself when its unnecessary?? And like the others said, the guidelines say there is no need to do hydro anymore and I'm happy that you guys found it to work out well, but my gut tells me not to do it.

    Everyone is different. You can't say for sure I'll have no pain just like I can't say for sure that I will have pain from it. I greatly feel it's not worth the risk at this time. I called my GP and asked what she thinks I should do and so I'm holding off on any decisions until then and trying other offices.

    EDIT: Another thing is that I don't know if this is a good Uro or not. I just met her today. That's really not enough time to make any judgments or form a trust.

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  • ginaaa22
    replied
    I'm not sure if this will help but I just had a cystoscopy w/ hydro 4 weeks ago. I was skeptical at first also, I was diagnosed by the potassium test in a dr's office. If you have a good uro they will give you pain meds to help with the pain that comes with having the surgery. I have tried lots of treatments including: instills for 12 weeks, elmiron, cystoprotek, neurotin, elavil, atarax, PT, IC Diet, and the surgery did help. I used to pee at night 3-4 times, after surgery it went up to 6-7 and now I'm down to 1-2 times per night!!! My overall pain has decreased, as my uro said it would. In some patients it is diagnostic and therapeutic. When I went in for surgery everyone was so nice, my uro came and seen me in recovery and her office called and checked on me the next day. I did have LOTS of pain for the first week, and I took my percocet 3x a day but now I'm only taking pain meds for breakthrough pain and my bladder is doing much better without taking elmiron/cystoprotek. This can also be a treatment option for some patients if it gives a therapeutic affect to the bladder. I will defiantly be having the surgery again.

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  • Linda May
    replied
    If you have been sticking with the IC diet and doing all that can be done for your pain.

    And you are still having problems you really need to get the hydro/cystro done because, then you will know absolutely that you have IC.

    They will put you to sleep and you will feel no pain after you wake up you may have very little blood and such a slight discomfort you won't even need tylenol.

    This is problably why your uro wants to get this done.

    Once this is done the uro will find the exact treatment plan for you, and you should'nt be in alot of pain.


    Sometimes it takes time to find what works for you.

    I hope and pray things work out but, I would not worry about the hydro/cystro.

    Alot of people regreted waiting so long to have it done.

    Leave a comment:

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