New here

[lonen86]

Hi I haven't been diagnosed with IC because my first urologist refused to do a hydrodistention, he only performed a cystoscopy and said that my bladder looked fine. I continued to have severe pain but it was hard for me to describe to the doctors the kind of pain I was having.I will be seen a gyno/urologist Doctor in June, meanwhile I have to wait and suffer without knowing what is really happening to me , my gynecologist thinks I have IC .I follow the IC diet as much as I can and it really helps but sometimes is hard to find things to eat or drink.
I'm taking tramacet for pain and when is very bad I take percocet, I want to know if IC gets worst over time and if some of you can do it without pain meds.
All of your stories sound so familiar to me is so nice to know that I'm not alone.
Thanks Loren.

[leelee88]

I have read where some people get worse and then some say that it stays the same..IC is mind boggling

[Sarojini]

IC rarely gets worse over time. Usually, it stays pretty much the same... of course, there are cases where it does get worse, but they are the minority.

[Roxie2007]

HI! My IC has gotten much worse over time. Mine started when I was around 20, I'm almost 51 now. For many years I dealt more with frequency and some bladder pain. Now it's more pain and much less frequency.....but I do take Elmiron, use the Oxytrol patch, take Freeze dried Aloe Vera and use MSM gel for the urethra pain (which is MUCH better since starting it).
I hope you find answers soon. Good luck to you! Roxie

[kfeldman]

Newbie

Hi,

My name is Kim. I was officially diagnosed last year with IC under hydro but it was suggested that I had it in 1999 but that was pushed back because of issues with severe endometriosis.

I am not familiar with MSM gel? Is that a script from a doctor? I currently take pyridium at least once a day and it helps with the pain down there.

I currently take elmiron, elavil, pyridium, hydroxyzine, vicodin, protonix, reglan every day.

I am still in pain everday. I even just got a neurostimulator implanted a week ago. I think it is helping but the doc says it will take long for the site pain to go away.

Hope this helps!

Kim

[stacyY]

Welcome Loren;
So Sorry to hear of all your pains. Hang in there hopefuly you will get a doctor who will work with you. One surgestion is change urologist. If your not happy and not getting the answeers you deserve, you have every right to go for a 2nd 3rd 4th opinion. Your incharg of your body not the doctors!
If your ob/gyn thinks you have IC have her refer you to a urologis, if its the same one you seen, tell her/him, that you refuse to see them and why. They will be glad to help you find one who will do what you need to get he right answers.
I had simular situation. I was dumb and stay with the same ob/gyn for 10 years, since i was 21-22. Now im 33, and not till last year in feb, did i get my IC diagnced. IF i would have had the courage to leave my doctor sooner, i would be in better situation then i am in now.
I switched ob/gyns, and she was smart enough to say i want you to see others cos she didnt think i had Endo. So by that then i was able to find i had IC. My other doc refused surgery, wouldnt do other testing, Plus tried so many other things, i ended up gaining 40 pounds cos he keep pushing hormonal stuff onme which never helped.
So dont let them push you around. Doctors work you you, not vice versa. It is scarry and nerve racking bumping heads with doctors. I know, i do it on a weekly baises. But when it come down to it,its you who has to livewith your body not them.you know who you feel. So be strong and i hope you will get the best diagnosis soon.
For me my ic has not responded to any medican except the Elimron(which helps to regrow the bladder lining-but takes several months to get to that point). An over the counter medican you can get at walgreens or RiteAid, is called Prelief,this helps refuse acid in the urine, if you eat spicy or drink pop, or coffee, and thing chocolate, tomatoes,ect. For me food is not a bother except citrius. So its not a big deal for me i took it the first 3 months or so after surgery though.
Also I get a lot of bladder infections alone with my IC, No idea why, but now i am on an antibiotic for 6 months, 3 more months to!!! But its working really good, Its called Macrodaten. maybe spelling off not sure.. But my doc said being on it this long is a preventitive, also hoped that it will take away some pains also for a while. No such luck on the pain area but no infections also.
Also try Ice packs. when you hurting, heat for me makes it feel worse, cos everything get so enflamed, so i use ice around my hip area and groin area when the pain is bad.
I dont take pain medican every day. If you do that, then your body get so used to, then you need more and more of it to take away the pain when you have to when its really bad.
I use 800mg motrin also when i notice any swelling,I have a vain on my right sided hip that when its all enflamed, it pops out and it hurts really bad. So wheni can feel that poped out i know its enflamed.
Also Avoid wearing tight pants. IF you have ic, at least for me tight clothing is a BIG NO NO!!!!! I want to dress up and wear differant things, and i regreat it a few days latter. Wear loose none constictive pants, My collection of pants is mainly elastic. very few other pans are not, if they are i have to buy little bigger, cos if its tight, never a good thing for me,
One other over the counter med that seems to help for me, is Midol PMS , there is somthing in that one which works really good for me. cos it helps with bloating, and back pain, ect... it really helps.
I hope some of these will help you out. I hope you start to feel better. I know how hard it is not know what you even have and trying to treat it and not knowing if its the right thing to treat.
Good luck with everything, If you need to talk just come share with us. Everyone gives such good advice here, and it help sto get your thoughts out, cos you may fele your the only one dealing with a certain thing then you find ohh my so many also have this too. So you feel your not alone. Its great to know that.
Best wishes.
stacy

[mary124]

to this site. Sorry that you might have IC!

IC rarely gets worse over the years, but mine has, I think because it took so long for me to be dx -- over 5 years. Plus the fact that after i was treated the doctor didn't really know how to! It wasn't until he retired that the doctor who took his place knew anything. (At the time, the only treatment that i was doing was DMSO on a semi regular basis and Elmiron-which put me in remission for 5 years at one time) - this doctor that I'm seeing now told me about the diet and about this website (which by the way, I'm very,very grateful for-as I've have learned a lot! Thank you ladies!!
Right now, I'm dealing with frequency,and pain, and because I'm considered "high risk" the only thing the doctors will do for me is give me pain medication and do hydros every 6 months or so. (I can't get off my coumadin for any length of time without being put on something else). Right now, besides pain meds and doing hydros, my family doctor just put me on Vesticare, which I think is beginning to work with the frequency. I am now beginning to have less trips to the bathroom-- use to get up 6-7 times a night now its 3 maybe-- last night it was 1!!