First Uro Appointment she wants to do Hydrodistension Need Advice

[nekura]

I'm not new here. I've been here since '07 on and off so I know the basics. I have extreme medical anxiety to the point of it taking 6 years just for me to be able to handle a pap smear. My Uro even said I was by far her worst anxiety case ever.. she wants me to do a hydo and cysto under general which I DO NOT WANT. There isn't enough information out there, but I feel that I'll never receive Elmiron until a Uro decides my pain is official enough.

I might call around asking for second opinions to see if any would do general and just a cysto or heaven forbid just based on my symptoms.

What should I do? I'm feeling like a failure, I can't go to school, I can't work, and no one is really helping me but I have to protect my body. I can't go through another horrible doctor procedure or else I'll never be able to seek treatment again. If it goes well, great, but if I'm left in agony afterwards and feel betrayed then I fear for my life.

[flowerangela]

I'm not new here. I've been here since '07 on and off so I know the basics. I have extreme medical anxiety to the point of it taking 6 years just for me to be able to handle a pap smear. My Uro even said I was by far her worst anxiety case ever.. she wants me to do a hydo and cysto under general which I DO NOT WANT. There isn't enough information out there, but I feel that I'll never receive Elmiron until a Uro decides my pain is official enough.

I might call around asking for second opinions to see if any would do general and just a cysto or heaven forbid just based on my symptoms.

What should I do? I'm feeling like a failure, I can't go to school, I can't work, and no one is really helping me but I have to protect my body. I can't go through another horrible doctor procedure or else I'll never be able to seek treatment again. If it goes well, great, but if I'm left in agony afterwards and feel betrayed then I fear for my life.

nekura,
i know how it feels to be afraid of the paps. i've had so many done in my life because at one point they thought i had hpv which leads to cervical cancer. i also had to have paps done before they would give me any kind of birth control and a pee test grrr.what i found that helped me was bring a family member or friend with you to your appointment. my mom held my hand the whole time during my last pap. its also good to have someone there to be your advocate when you feel like youre not being heard or afraid to speak up.
just my experience w/ the cysto w/ the hydro- i was not liking the idea of doing it either but once i found out i would be under GA, i wasnt so scared about it.i was asleep the entire time they did it and it did end up providing my dr some relevant info and him ultimately diagnosing me with IC. if i hadnt gotten diagnosed, my ic could possibly get worse.i was sore a few days after the procedure but everyone usually is.if i can do it,you can do it! i know its scary because ive had bad experiences with drs too.

i also know how it feels to not have a job or not be in school.thats my situation right now and im 24 yrs old with nothing to show for it.it can make you feel depressed/like a failure.i finally pushed myself to make an appointment with a therapist (justsomeone to talk to,not someone who is gonna get their rx pad out and write me a bunch of psych meds)..i asked a friend and she recommended i see her.

elmiron is expensive,but it is the only fda approved drug.. and there are studies that prove it can help heal your bladder. that would be enough inspiration for me to go ahead and go through with the cysto. it is your choice though.i think some uros do cysto only..but its not under ga and they usually do it as an in office procedure. ive heard they do numb you the entire time though.maybe she could just do that for you?if not,second opinions are always good. you are entitled to one. i wish you luck.. we all are in this struggle together.*Hugs*

ps ive also heard some drs will diagnose you based off of symptoms alone.

[cmclien]

Hi, check this out: http://www.ic-network.com/forum/showthread.php?t=68980
Print it out and take it to your doctor, these are new 2010 guidelines for urologists. You should not be forced to have a cysto/hydro, nor should they withold treatment if you don't do it. Now they don't they recommend it now unless you have a severe case. They are basically saying to treat on symptoms in this article and videos.

My UG is treating me based on symptoms. He did do an in-office cystoscopy (I was awake), took 10 minutes, minimal discomfort, the catheter never feels great going in or out but I wouldn't call it painful. He wanted to rule out bladder cancer, look for blood, obvious sores etc. Basically he wanted to check the health of the bladder.
Also, what-if they do the cysto/hydro and they see nothing? would they not treat you? They probably would treat you based on your symptoms so I don't see the point.
You will get lots of opinions on this. I personally believe and thank god my UG believes it is overkill and GA should never be taken lightly. He said if my pain elevated he would recommend instillations, the medicine through the catheter but he still isn't a big believer in cysto/hydro's for whatever reasons I don't know.
Has your uro actually told you they won't treat you without this procedure? If so, and because of your extreme anxiety that seems unusually cruel to me and I would seek out another uro. If your pain is pretty bad, most uros will recommend instillations as it is the best way to get medicine to the bladder. I'm sorry for your anxiety and like Angela said, maybe you could get someone to go with you and keep you company during any procedure. It is an area that I had alot of anxiety about too. I've had two children and I still avoided going to the uro! thats how much discomfort I had about it. I finally have gone and I have to admit it wasn't as bad as I thought, but maybe thats because I have found a nice doc with a good bedside manner.
Just my (not) very humble opinion.
Good luck.

[nekura]

Thanks for your fast replies. I do keep my boyfriend with me 24/7 any time I have to go into a doctor's office and he's my only lifeline. If it wasn't for him then I wouldn't have even spoken to a doctor. My biggest of the hydro isn't the procedure itself since I will be asleep, its the effects afterwards. I want to protect myself from being one of those people who has mind searing pain after the hydro for months afterwards because as of right now the pain is manageable.

Thanks for the link cmclien. I'm absolutely desperate for a Uro that will believe me and diagnose me on symptoms alone. The one I went to today said she wouldn't let me try Elmiron since it takes so long to have effect and she wants to be "sure". I turned her down and said I'd have to talk it over with family.. I also got a sense that she wasn't very into what was wrong with me because not once did she ask about diet or pain levels. The conversation went pretty much much with me saying "We're pretty sure I have IC, have been treated with vistaril with some effect and ditropan." and her saying , "You haven't had an official diagnoses? You need a hydro."

My GP is fairly sure its IC but since she isn't a Uro wasn't secure in making the diagnoses herself, but she did at least give me some things for it and really talked to me. She's also the only reason I was ever able to have a pap. Best bed side manner I've ever had. As for instillations I don't think I could go through with them unless I was desperate. For now I just want elmiron and see how that works. I told my Uro this and she asked why did I even bother going if I wouldn't take treatment, but like I said I said I wanted to try Elmiron first..

[cmclien]

As for instillations I don't think I could go through with them unless I was desperate. For now I just want elmiron and see how that works. I told my Uro this and she asked why did I even bother going if I wouldn't take treatment, but like I said I said I wanted to try Elmiron first..

Thats kinda funny (not) that she doesn't consider Elmiron a treatment. The drugs you mentioned are considered first level treatments for mild IC or IC that is not out of control with pain.
You're in a hard place because they (almost any uro or urogynecologist) will want to at a minimum do a pelvic exam, and possibly just an outpatient cysto and then would treat with meds. Do you think you could do those? Maybe they would give you something relaxing to take beforehand to alleviate your stress and anxiety, like a small dose of valium or something.
I explained to my doc how afraid I was of the cysto and he told me in great detail everything he did during the exam. Sometimes having a procedure explained can be helpful because then its no longer the "unknown".

[nekura]

As for instillations I don't think I could go through with them unless I was desperate. For now I just want elmiron and see how that works. I told my Uro this and she asked why did I even bother going if I wouldn't take treatment, but like I said I said I wanted to try Elmiron first..

Thats kinda funny (not) that she doesn't consider Elmiron a treatment. The drugs you mentioned are considered first level treatments for mild IC or IC that is not out of control with pain.
You're in a hard place because they (almost any uro or urogynecologist) will want to at a minimum do a pelvic exam, and possibly just an outpatient cysto and then would treat with meds. Do you think you could do those? Maybe they would give you something relaxing to take beforehand to alleviate your stress and anxiety, like a small dose of valium or something.
I explained to my doc how afraid I was of the cysto and he told me in great detail everything he did during the exam. Sometimes having a procedure explained can be helpful because then its no longer the "unknown".

Thanks to my GP I could go through a pelvic. As for the cysto absolutely not. Not without general. If I'm awake enough to talk, I'm too awake to go through it.

[Linda May]

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.

[ginaaa22]

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.

[nekura]

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.

[flowerangela]

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

[nekura]

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.

[nekura]

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????

[bob04951]

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

[nekura]

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)

[nekura]

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.