Newly diagnosed with jerk for doctor! Help!

[christinme]

Hi! I was diagnosed with IC October 30,2007. The doctor that diagnosed it gave me a folder with some info about it to read before doing my cystoscopy. After he confirmed that I had it... that was it. I went home without having any real ideal about this. I lost my job because it took them two months to find out why after passing a kidney stone I was still in so much pain. I had a lot of test and since I had not had my job for 90 days yet, I lost it do to not being able to stand up to do my job and because after the tesst I would lose control of my bladder for a couple of days. Anyway after I found out and was sent home with minimal info and meds to take, I got online and started trying to find out what was really going on. I found my way here. I started to read a lot of the post here and just waited to go for my 1 month check-up. Mind you I have a 9-year old daughter and I am a single parent. Well I made a list of questions to ask the doctor today and he had the nerve to want to rush me and basically tell me nothing. He tells me to stop thinking about it and not become a victim. Now can someone explain to me how do you not think about it. If I stop thinking about what I can and can't eat then I'll end up in even more pain then I already am in. Mind you I am still going to the bathroom every few minutes. I went 5 times waiting for him to come in. My tootie hurts so bad I feel like it's going to fall out. I don't sleep well at all. I might get 5 hours if I'm lucky. I don't go anywhere unless I just have to because I pee way to frequently. It irratates me to ride in a car. Sitting in a chair hurts like the dickens. He says he can't justify sign temp disability papers. So what am I suppose to do. How am I suppose to support my daughter and Christmas is around the corner? My mom is basically taking care of my daughter because I'm just getting to sleep or I'm in so much pain I can't even help her get ready for school or drive her for that matter. She's a cheerleader and I can't even go see her because I hate riding in the car and I hurt to bad. I've tried to find another doctor in this area but my choices are few and far in between. There are no support groups in my area I would have to go at least 3 hours away to find one. Does anyone have any ideals for me? Thank you in advance for listening and your ideals.
Desperate in Peoria, Il

[brandi28]

Sorry I can't help you with the doctor thing. But, my urologist is a jerk too, basically told me he don't understand why the hydo hasn't help yet. I never did hate doctors until I got IC, and I learn to hate doctors and the ER now. Hope you can find a better doctor.

brandi

[sickofmybladder]

The only thing I can suggest is you really need to find another doctor - have you checked the patient handbook to see if there are any in your area? Here's the link: http://www.ic-network.com/handbook/mdlocate.html

You really need a compassionate doctor who is willing to work with you - can you take some information to your general doctor and ask him to manage your pain and any short term disability paperwork that needs to be taken care of?

Now - since you are not getting help from your doctor it is definately time for some self-care - have you started the diet? Here's the link for that as well: http://www.ic-network.com/handbook/diet.html - also I suggest lots of heat and/or ice (if you can tolerate) - beware of motrin etc. for some of us it can cause a flare (my first mistake in the beginning....)

Please let us know how you are doing.......

:welcome:

[Claredale]

Have you check the website to see if there is doctor that specializes in IC in your area? Have you tried the IC diet? I would definitely do my best to find another doctor will be more understanding. They are out there, I promise. I wish there were more, so none of us would have to go through this horrible process of trying to find answers. IC is so unpredictable, which I am sure you have read. It takes alot out of us to find what treatment helps us just make it through the day.

I am sorry you are having such a horrible time. I am glad that you found us and we will give you all the support we can.

Hugs,
Tracey

[SandyRN]

If you can't find a uro try a GYN. If you can't find a GYN, try an internist. Take ALL the info you can from here about meds to your next visit to whichever doctor you see. Elavil helps a lot of people here. You've got the right idea with the diet as well. Drink TONS of water to dilute your urine. I know you'll go more but it will be dilute instead of so acidic.

Don't ever give up just because this doc is a jerk. We've all been through our fair share of cruddy doctors. I know I certainly have!!! If one didn't work out I went to another one til I got the right combo to help me.

I know traveling isn't an option for you but in time you might want to consider going outside your area to see one of the top IC docs in the country. It can be tough but it can also be worth it to come home armed with info and RX's that really help.

For the time being you might try OTC AZO standard or a generic store brand of pyridium. It says not to take it for more than 3 days but maybe this doc of yours can at least ok that much!

I'm sorry this is so rough on you. I have kids too and know what it's like to be a single mom. I did it with IC, Fibro, Crohn's disease, Degenerative Disc Disease and autoimmune problems that we haven't figured out yet. It can be done, you just need the right medical team.

Good luck and :welcome: to the board!

[HistoryKat]

Hi,

I'm new to IC as well, but do please check the Doctor's list that was posted to you. Having a Doctor who knows what is going on makes all the difference in the world. I described my pain and symptoms to my regular Doctor, to my regular OB-GYN, and to a neurologist even and it wasn't until I went to the Pelvic Pain Center (which is on the list) in Alabama that I got help.

As far as Christmas goes why don't you check with some of the local churches or your own church if you have one and see if they can help you.

There is also a national email group at freecycle.com if you go there you'll join an email list in your area. Freecycle is for people who have something they no longer need to offer up on the list to see if anyone needs it, or for people who need something to ask and see if anyone has one they aren't using anymore. The rules vary from list to list but the list I'm on here does let people ask for toys or clothes for Christmas for their children if they are having problems.

Good luck, I know how bad the pain can be.

Kat

[Sally939]

Hi and welcome. It looks like everyone above has given you a lot of great info. I just want to tell you it can get easier. Just a few months ago I felt like my life really was over. I pretty much just cried and stayed in bed. It took a lot of pushing my self forward and support (this site has been a huge part of my support) but now I am doing a LOT better. So fight for your self. I think the GYN is a good idea if you can not get to a good URO.

[mbhbarb]

Hi. Don't be a victim??? Whatever did your doctor mean? In my experience, it's imperative to have a doctor with whom I can communicate. My search continues. The first uro I saw sounds much like yours; told me if I have IC, and it sounded as if I did, it was a "rough diagnosis" and there wasn't much to be done but to take antidepressants, elmiron (even though according to him it helps only 30% of patients) and see a pain specialist. He wanted to do a scope exam in his office, no anesthesia. I was in so much pain that day I couldn't even stand up straight. When I refused, he refused to do an exam or to give me any pain meds. I went home and cried for the rest of the day.

Thank goodness I have a wonderful ob/gyn who referred me to a uro/gyno who is much more knowledgeable about IC than the first uro. He's still not someone I can collaborate with re treating IC, but at least he's not insensitive like the first one. He ended up sending me to yet another uro for a different issue. That uro is very kind, but I am not sure I agree with his approach. He wanted to start me immediately on instills even though at this time I am pretty much symptom free.

Since then I have begun seeing an internal medicine specialist. He is excellent. I'm not sure he will work long-term with me on the IC, but he is helping with all of the related illnesses and he is someone with whom I can develop a working relationship.

It's not easy for some of us to find the right doctor, and when we are hurting and want a quick solution, it is even harder to keep searching. I hope you can find someone soon who will give you the help you need in a way that is acceptable to you. My thoughts are with you.

barb

[christinme]

Thanks for all your suggestions. Yes I have been doing the diet every since I found out and I am on Elmiron and Elavil. I am checking with my general doctor tomorrow and I am showing symptons of PFD and IBS. But of course my doctor didn't care about any of that.

[kuntrygurl78]

If you are in Peoria, then Dekalb is fairly close. Dr Burstein is there. Hes one of the top IC people in the country. (I can give you directions!) I saw him a few weeks ago, and he is amazing!

I live in Gibson City, which is just 30 minutes east of Bloomington.(not that far from you!) Please feel free to pm or email me anytime!!
kuntrygurl78@hotmail.com

[mary124]

Christinme: Everyone is right, you need to find another doc. We all have been thru this. (I went thru my family doctor and 4 uros before I found 1 that actually knew anything. I actually went back to the first Uro who still really didn't know what I had but luckily, there was a specialist in his office who suggested that I had IC.
As to the medicines, there are lots of different kind, you just have to see which ones are best for you. I take Elmiron and something for the pain - plus I watch what I eat--I'm not as sensitive as a lot of people but, I do have my triggers which will get me when I'm not looking.
As to the Christmas, do you have like a "Blue Santa" or Brown Santa" where you live?? I know we have both here where I live at and they provide some gifts for the kids and even a dinner for the family. Your Church might be able to help. I know a long time ago I was in a financial mess and the Church/school that my son went to was very generous to us, a few gifts for the kids; dinner and extra stuff--plus they paid my son's tuition for the rest of the year!! (I felt such relief ). Of course, this was done without having everyone know who I was, but there was quite a few members who knew it was me, so if you need to go to the Church, don't be embarrass to ask for help, they will be glad to help you. Good luck.