Newly diagnosed with IC

[MommyLee4]

I was diagnosed with IC about five months ago. I had the bladder distention and 2 treatments but it didn't help much. I have four children (7,5,4,3) so my life is very stressful. I have had several very painful flareups in the past 2 weeks. I do not have insurance, since I stay home with my children. My husbands job does not offer insurance. The treatments are very expensive and I had to stop getting them. My doctor gave me pain medication for a couple of weeks but now I can't get any more until I get back in to see him which I can't afford. I hate having to ask for more pain medication but I am in a lot of pain. It feels like my bladder is on fire. It hurts to go to the bathroom and for a while after. I have painful shots of electricity in my bladder. I find the more I try to do around the house or even running errands I start hurting after a while. I hate that because I am very active and I love doing things with the kids. My husband is getting tired of hearing how bad I feel too. I love him to death, but he just don't seem to understand. I have always lead such a happy and full life and now it seems like I never feel good anymore. I try to ignore it and go on. The pain medication really helps for awhile I feel like my self again, but it is so hard to get without insurance. I don't know what to do I feel so helpless and alone. Can anyone tell me how they deal with this illness no one else seems to understand?

[Ashley911]

I totally understand you. I was recently diagnosed with this too and I used to be so active. I dont have any kids which must make it even more difficult. What i would do is 1st by over the counter prydium. You can get it at any local drugstore. It comes in different names like uristat or cystex just look for it by the other UTI treatments or tests. Its a pain killer and it works. It will make your pee orange so dont be afraid of that. Secondly I just started desert harvest aloe vera pills and they seem to be helping me. They are just aloe vera no insurance or prescription necessary. They are a little expensive but worth it if they work for you. I take 5 pills a day 2 in the morning 1 at lunch and two at night. Look them up either in the store here or google desert harvest aloe vera. They took a week before i started noticing any improvement and some people take more time but its worth a shot. Thirdly another thing i would buy is prelief. Take that with every meal you have. It takes the acidity out of food that has helped me too. I know all of these things are racking up the $$ but they are worth it for some relief. Also I take benadryl before i go to sleep which helps 1 relax me and 2 ease my bladder a bit at night. Try to stay calm through all of this bc i know stress makes me get worse too. Please hang in there i know how hard it is being newly diagnosed, its so scarey. There are many people on this site that can help you, just be your own advocate and keep trying new things. Thats what i plan to do.

[TaraTX]

I am very sorry that you are having such a hard time, and I hope that you feel better very soon. I know what you are going through. It just seems like the pain takes over you sometimes and no one understands. I can only imagine going through this and trying to take care of all those little ones. My heart goes out to you. I am sorry that you don't have insurance, this is hard to cope with when you have insurance so I don't envy you at all. But if you need some relief from the pain, heat seems to help me a lot. Some people prefer ice, so you'll just have to see what works better for you. Also, I have read that if you take a spoon full of baking soda with a glass of water helps tremendously for the pain. Good Luck, and we're here for you!!!

[leelee88]

:hi:And :welcome:to the ICN.. These girls have some great pointers for you.
I would also recommend you getting on the IC diet. It has help me so much with getting my IC under control.. And bottle spring water also, because most tap water has chemicals in it.
I am sorry you do not have innsurance, I just think things like this in life is just not fair..But hopefully you can go back to the Dr you were seeing and he can get you on something that will help you. I for one am on Tofranil it is not a narcotic but it works well for my pain.Most people on here prefer Elavil it's kind of the same drug just has diferant side effects on people. And it is very in-exspensive so I would ask the Dr about this.

Well I hope things get better for you. I have 4 kids also luckily they are older. But hang in there.

[SharonA]

Amitriptyline (Elavil) is one of Wal Marts $4.00 meds. It is my main IC med. It greatly reduced the pain I was in before taking it. It is an antidepressant that, when taken in low dose, works to block the pain receptors in the brain. You need a prescription from your doctor for it, but it might be worth the cost of a doctor visit.

Finding out if you have pain because of food/drinks is very important. Take a look at the IC Diet. There is a link to it at the top of this page. Many here, myself included, have noticed a great improvement in their symptoms by learning what triggers (increases) their symptoms.

I am so sorry that you are having these problems but there is hope and there is help. :) :) :)

[MommyLee4]

Thank you for all the great suggestions. It is soooo great to know that other people really understand and don't think I am a hypo. Unfortunatly I have never been very good dealing with pain it really gets me down, but all the great pain remedys are going to be a great help. Have you ever noticed that the IC affects other things in your body as well? Like joint problems and other things. I also have a hard time telling when I have UTI or just a really bad flare up. Last time I had to go to the emergency room I was in so much pain and they said it was nothing. I have got to where I hate doctors, anyone else feel this way. Thay won't even see me unless I can pay cash up front which I can't. The treatments I had didn't seem to help and they where kinda painful. How do you feel about these treatments, should I go into debt getting them done, will they help? Right now I am taking vistiril and something else I can't remember the name. I am not really sure what these are for.

[VickiB]

You aren't alone in the 'not being very good at dealing with pain' thing! That sort of goes against human nature.

I've never been able to tell a flare from a UTI. I generally just accept any increase of symptoms as my IC acting up. Then if it doesn't subside in a reasonable amount of time I go in to be tested for an infection.

I do have insurance, but it has such a high deductible (5000) that I've never used it. Always having to pay out of pocket really, really hurts! Especially when you're paying that kind of money to have them tell you there's nothing wrong when you know there is. Been there too many times, and for a while wasn't a big fan of the medical community because of it!

The IC diet has made a dramatic difference for me, and that is something that's free to try.

Hope you feel better soon!

Vicki