Upsetting Uro appointment yesterday (long)

[KristaM]

Hello to my Ic family,
I had my follow appointment to my Cysto/Hydro yesterday and it was terrible. I feel very frustrated and hurt right now... Hurt because I feel that my urogyno feels very non-chalant (sp) about my IC. After waiting for over an hour to see him he comes in to the examining room and says that I have IC.
He tells me that there is nothing to treat it only Elmiron and he would rather for me to try the diet for 6 months and then if I don't feel any better he will try me on the Elmiron. He said that there is no need for me to be on Elmiron if the diet alone works for me.. Then I said to him what about instillations, antihistamines, and antideppresents? He said that most studies have found that it only works for some and that more people found that it dosen't work for them. What if I'm a person that it will work for!!!

He said that the first line of defence is the diet.. If that dosen't work then the Elmirion.. and then if that dosen't work then we will try other drugs like atarx and Elavil. I can't imagine having to wait every 6 months to see if a drug is going to work for me. I have burning a lot of the time and I just don't know what to do..... I told him about my burning and that it is the only thing I can think about most of the time and he really just brushed me off. I also told him that my GP prescribed Pyridium for me because of my burning and he asked if it helped me.. I said that it helps a little to take the edge off of the burnning and he said that if you leak the staining is horrible and it will ruin your clothes. As if the staining is more important than me feeling well. I'm so hurt that a specialist would be so indifferent towards me like I'm just a peice of equipment or something. Also, finding another uro is out of the question ( He is the only urogyno in the province) my only other option would be to fly to Ontario which would be about 700.00 (cannot afford it) He seems like a nice enough person but just dosen't really get how much pain I'm in. My Gp seems more interested in finding a solution for me. Do any of you deal with your Gp after you have been diagnosed or do you all go through your uro for meds?
I have had a few day this week where I've been feeling fairly well so I hope that continues. Just wanted someone to talk to and to cry to.
thanks for lisening...
Krista

[Sarojini]

Hi Krista,

First, I'm so sorry you felt brushed off by your uro... that was totally unfair of him, and I really feel sorry for you :( I find his approach a bit conservative, especially since both the diet and Elmiron can take months to kick in -- and you're in pain NOW. It would certainly be nice to try some of the other meds in the meantime while you're waiting for these two options to work!

My feeling is that, if your GP is understanding, please go to him and explain the situation. There are many patients on these boards who get pain control and other things from their GPs (including Atarax, Elavil, etc) because their uros are less than sympathetic! You can bring some literature about IC and its treatments to the GP in case he's not up to date on the disease, and discuss the options you'd like to try with him. He may not be willing to go the instillation route right away as he's not experienced in that, but he may be very willing to start you on Elavil, Atarax, and/or other pain control measures you can take until the other things kick in. He may even prescribe Elmiron for you so you can get started NOW rather than 6 months from now!

Please, go to your GP and have this discussion -- I think you'll feel better for it!

Also, as for Pyridium stains, yeah, it can stain... but it's no big deal. Wear a pantiliner or something if you tend to be leaky to protect your underclothes. If you do get it on your clothes, just dilute some vinegar in water and soak your underpants before washing in the solution. Make sure to rinse well, and then wash as normal... this can often fade the stains quite well. Vinegar is also good for getting Pyridium stains off of white toilets! ;)

See, no big deal. Your uro needs to get a life ;)

Much love and :grouphugs:

[ICLori]

I'm so sorry you were treated like that. I find that some doctors have a very hard time understanding the level of pain and disruption of our lives that we experience, perhaps because most male doctors have never had a UTI. If they had even one UTI I think their perspective might change.

I know I had one doc tell me, when I was asking about the possible risks of Interstim, "well you know we don't have to do anything - this isn't a disease that kills...you could just learn to live with it." This is when I was peeing 40 or more times per day and in pain all the time. As it turns out, apparently I actually had some undiagnosed UTI the whole time, which I only realized after I was given Amoxicillin for a tooth being pulled and my symptoms miraculously vanished. Anyone who says you should learn to just live with either IC or an untreated UTI, is from some other planet as far as I'm concerned. Patients need help and don't deserve to be left in pain!

I think it would be a terrific idea to approach your GP. What harm could it do? And hopefully he will be more sympathetic and will help you.

Sometimes when the medical community can not or will not help us, some of us find that some supplements can give some level of relief.

Although these do not work for everyone, some that have been shown to work for some are: Prelief, to be taken with food to stop the acidity; TUMS (also reduces acidity); in an emergency a tiny bit of baking soda in water; some people have had good luck with the algonot products sold here, which have quercetin and other ingredients in them. I have heard some anecdotal reports that say MSM can be helpful but I'm not sure. And if you read other posts here on this board you will see other suggestions and other things that have helped people, I'm just trying to remember a few of them off the top of my head and I am sure I have forgotten a lot of them. None of them give complete relief to all - if they did they would be given to all IC patients I am sure - that's the problem with any treatment, whether prescription or over the counter - there are so many variations in reactions, symptoms, etc. it's so hard to predict ahead of time what will work for one person, what won't.

I totally understand your feelings about wanting to try everything. If I hear that even one person got better doing this or using this, I am off to see if I can obtain that from my doctor or buy it at the health food store. It's natural to want to try everything to get better!

I hope you do feel better soon. Please, talk to your GP, because I am hoping he will be more helpful to you.

(((HUGS)))

Blessings, Lori

[Betsie]

:kissing:
Krista,
I could not agree more with Jen (Sarojini)!!!

My GP listens far more than any one and is happy to help in any way. While he does not pretend to be an expert on IC, he sure as heck does not diminish it's affect on my health and quality of living...which is great again!

I am sending a link to a good read...that you might want to share with him/her. At the very least it is an uncomplicated article that may help your explanation of what is going on.

I'm also enclosing the link to Dr. Moldwin's book, available from the ICN, a "bible" if you will and something I read front to back before finding the ICN in '03.

I would suggest asking your URO to look at both, but it seems that his mind is made up...as for the elmiron? the six months he wants you to wait is just about the time I noticed it was making a huge difference in my symptoms.

http://www.femalepatient.com/pdf/chronic.pdf

http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&pid=icsg

i am so frustrated for you, that I am probably making little sense, but Jen said it well enough.

Hugs!

[ICNDonna]

I totally agree with Jen. Your primary care physician may be willing to work with you on treatment options. I do agree that going on the diet immediately is a good step, but since Elmiron can take up to six months or longer to be effective, I'm thinking it would be good if you could start on it immediately too. It doesn't help everyone, but some find it gives them back their lives.

Sending warm healing thoughts,
Donna

[Myli]

I am so sorry to hear about the way your doctor treated you, there is just no acceptable excuse for it. Some doctors just make me sick. Really, they should have to experience the pain themselves. Empathy and sympathy should be required to become a treating physician. I often wonder if they are doctors just to make money or to actually help patients. I understand conservative treatment plans, but leaving people in pain is beyond conservative. It is intentional cruelty in my opinion.

And staining underware, please give me a break! When I am in pain, I could care less, I would pay that price quite happily. I hope the diet helps and your regular doctor is a lot more helpful!

:grouphug: :grouphug: :grouphug:
Myli

[Katrina]

(((((((((((((((((Krista)))))))))))))))))) Sorry, I know I would be very disapointed with that doc. So glad you have your gp to turn to. I know that waiting for help just shouldn't be the way to go. I know in my opinion to only to the diet is a risk that you will still get worse. So if I were you I would want to start some treatment now!! I hope you get the help you need from gp. :grouphug:
:kiss:

[kate118]

Do you have pain management clinics available to you? They can be a BIG help.

[kate118]

"He seems like a nice enough person but just dosen't really get how much pain I'm in. My Gp seems more interested in finding a solution for me."
----------------------------------------------------------

Sorry about your experience with the bad uro. He sounds very insensitive to your disease. Go back to your GP, he will be the one to help you. I am told consistently by the Uros, "You need to go to a pain management clinic..I can't help you". It seems as though they have washed their hands after diagnosis. Your GP will help you find where you need to be.

[ICNJess]

I don't know where doctors lose their compassion, but it makes me sick. I hope your GP can take care of the issues, I would definitely see him more!

[dorir]

Hi. I'm glad you have a gp to go to. I know mine has helped me so much, I to have uro who dosen't seem to care what these is doing to my life. I agree with everyone else .hang in there

[Iris]

Hi, I had the same experience with the first urologist I went to, and after diagnosis, and much pain, I went back to my Nurse Practitioner, who has been wonderful, and helped so much with getting me on the right medications, and getting my life back to almost normal again.. I know how frustrating it can be to have to wait for something to help with pain, that is why I switched from the urologist I had been seeing. I certainly agree with the gals, and think you should certainly not have to wait months for something to work. Pain needs to be tended to now, and for you to get some relief from the pain. I am very happy to have a Nurse Practitioner as my pcp, she is very much on the ball and determined to help all her patients as much as she can. I have also found another urogynecologist, who works very well with her patients. Do hope you can get some relief really soon, soft hugs Iris. :grouphug: :flower:

[VickiB]

Krista,

I'm so sorry this happened to you! Why in the world are there doctors with that sort of attitude? Stained panties,..Good Grief! I firmly believe if they spent one day in IC Flare mode, they'd sure be writing themselves some prescriptions! -INCLUDING PAIN MEDS!!!!

Please do talk to your GP. I think leaving someone go for 6 months to see how they do, borders on abuse!

Vicki

[donutgirl]

:cussing: I am once again angry & outraged at how someone in the IC family has been treated by a "Professional". The thing that popped into my mind was what a friend of mine told me once: the person that graduates at the top of the class makes it in their profession just as the one in that same class that barely made a passing grade. YIKES!! :headbang:

DIANE

[vm]

I, too, would vote for talking to your GP about treatment. If my uro would leave his practice I wouldn't hesitate to go to my GP for my meds. He listens to me better, takes more time for me, and is willing to try things I suggest. My uro has been good - but my GP is even better.

Good luck. Maybe you could ask your uro if he would please humor you and let you try some of the other things? Just to see what he would say?

[qnann]

(bad Doctor) They Are Still Learning All This Ic Stuff Themself I Also Believe We May Know So Much More About This Disease Then Them. Maybe They Could Learn From This Web Site. Anyway Don't Give Up Talk To Your Gp Let Thim Know How You Are Feeling And The Pain Your In. Am New To This But I Found A Good Doc That Is Very Patience With Me And Seems Understanding Which You The Best Hope You Feel Better Your New Ic Friend Ann

[mayray518]

Finding what will help with IC is, unfortunately, hit and miss. After I got diagnosed which took two years I was on DMSO which worked for a year, waited for elmiron which didnt work and then went on atarax and numerous other things before elavil worked for me. I know how frustrating it is to deal with this but until they find a surefire cure all thats the way it is.

[KristaM]

Hi Everyone,
Words cannot express how fortunate I feel to have all of you. :angel: You have all been so kind and this is going to sound so corny but kind words can be very healing. This is all that I was looking for from my specialist.. just some healing words and some encouragement. I'd rather have a doc that is on my team working with me but unfortuanately that is not the way it is for me right now. My Gp seems to be really great and I actually left my doc of years to see her. My old GP did not have a clue what was wrong with me and kept giving me yeast meds. I finally went to this younger Gp and she diagnosed me with IC right away and sent me to this urogyno. One problem though... they went to school together. The last time I went to see her for pyridium to hold me over until my appointment a couple of days ago.. she said isn't doctor so and so very nice. Now I have to go back to her and say yes, he seems like a nice guy but has no interest in helping me right now. Which I feel very bad about because I think that they are friends.. Oh My, the drama continues.. One more thing.. I asked the specialist how severe my ic is? i.e glomurations, ulcers etc and he said that they don't put a class on it. You either have IC or you don't have IC. Is this true??? tha'ts not what I have read and I'm wondering if this is just something else he is saying that is wrong.
Krista

[Myli]

Well, I think there is certainly a continium with some folks having all the signs in terms of those and some who are either early in the disease or just have a mild case of IC and don't necessarily have those symptoms yet. Perhaps that is what he means. So far though, I am not impressed by the job he is doing at explaining nor at understanding what you are asking. But, technically, I think he is right, they don't categorize IC by what symptoms you display, afaik.

The only thing I can recall my uro telling me was he could see the inflammation. At that point, I didn't know enough to ask about the others and I haven't inquired since. Mostly because my treatment is working pretty well, even though I am not in remission.

:grouphug:
Myli

[downinit]

:bonk: :toilet: Oh my gosh Krista I went through the same thing!!!! Sounds like we ALL have!!! I went through 2 urologists until I found a decent one, and he is still a very busy man who I wish had a little more time and support for me, but he's pretty cool. Also, MY women gynocologist was WAY better to me than those male urologists. She was my angel! Please don't get me wrong anyone, men are great, but when it comes to women and reproductive and plumbing problems, women docs are just better for ya. I agree, I think you should go on the Elmiron NOW NOW NOW!!! My gyno prescribed it to me, along with my pain meds. I take Naproxen for daily pain management and to keep my migraines away, Hydrocodone for severe bladder pain and cramping days, and Elmiron 4 times a day. Elmiron is taken without food (on an empty stomach) and that works SO well for me because I only eat one big meal a day, though that's really not good for you in other ways, it has helped the Elmiron get down to the old bladder and work it's magic. If you eat a few small meals a day, and maybe took the Elmiron in the middle of the night once or twice, that might help to. I think you just have to make sure you take it one hour before you eat, and 3 to 4 hours after you eat. It has REALLY helped me out significantly and I'm only on my 4th month of taking it. I also had to push my doctors to get me on it, and I did my own research to find it. I started right after I had the laproscopy surgery. I also had some endometriosis they had to burn out when they did the surgery, some of it was sitting RIGHT ON TOP OF MY BLADDER!!!! I really want a partial hysterectomy, but they won't do it yet. Also, I too am in a remote area with few doctors. The only urologists in the area were 75 miles away, but luckily they come down twice a month for appointments. Your appointments can be alsmost a month away though, so if I was really bad off, I would schedule one for once a month. Anyway, my opinion is to go on both the diet and Elmiron and get yourself some pain pills too for the really bad days. YOU'RE NOT ALONE! Remember that!! There are alot of us with this crappy disease, some with it REALLY REALLY bad! We are all here for you, as I know you are all here for me from your warm welcome! :grouphug: Take Care!
Toni
:elvis: