treatments?????? HELP

[gloriabono68]

Does anyone know of any safe treatments to help calm some symptoms of my IC while i am pregnant? They have taken me off all my medicines and i am in agony and misery. My uro seems to think nothing is safe......this is 2005 there has to be something out there to help IC symptoms while you are pregnant. I cannot find any answers to this anywhere......please please someone help me find out.........
thanks
gloriabono

[dancemomof2]

My high risk Ob let me use Visteril for flare ups and Percocets whenn I had to for some relief. you may ask you Dr and see what they say.
It was the roughest months of my life and I really do understand exactly what you are describing.

[KeeKee]

Hi Gloria,

I'm so sorry you're in pain. I looked through some of the past posts in the pregnancy forum and found several folks that had written that their doctors had ok'ed both Heparin or Lidocain installs. Although I've never had experience with either of these, I've heard they work wonders for some people. It's worth asking your doctor about and if you need to, go and see another doctor. We all understand the pain associated with IC, so we're all with you in spirit. Keep us all posted on how you're doing. Hugs!

[jaime15]

Gloria,
I really feel for you....:( I was miserable the whole pregnancy for reasons other than IC, although I had my share of "Is it a flare, uti, or baby on the bladder" days.)
My uro, not my ob, was the person to see for bladder issues. I learned that the hard way. I would go to the OB and three out of four trips I got a antibiotic... :rolleyes:
Anyway after those trips I made one to the uro. And he suggested there wasn't much to do while being pregnant. Except the lidocaine and heparin. In the end, I never had to have them.
He, along with my ob, were firm believer's in no pain meds while pregnant. So I pretty much survived on phenergan for nausea. At least they helped me sleep.
I hope it eases up soon and you get to enjoy your pregnancy!!..hugs......

[gloriabono68]

Thanks ladies.........She just keeps telling me nothing is really safe , the only thing that shes letting me use is the a lower dose of ditrapan. I did have a lidocaine cocktail last thursday but she didnt put the heparin or kenalog and something else in it.....says its too risky. BUT i can say it did absolutely nothing to help relieve anything.
Then they called yesterday and turns out that i have yet another bladder infection which might be my problem right now.....its not everytime so now i am taking yet another round of antibiotics. I am also starting to experience stress incontinence and she tells me they can't fix that either. I have been doing the kegals but either i am not doing them right or i am the rare person it just doesnt work for. She said theres a few people out there the kegals don't help and i might be one of them. ITs like everything i do nothing works ya know. Its beginning to get very frustrating and no one around me understands. I can't enjoy being a newlywed or enjoy being pregnant for my stupid bladder. My URO says she knows i am miserable but i have to hang in there and she promises she can fix everything after the baby is born in july......its a long time it seems until july .......and i am not a person that has much patience. Its hard to explain what my bladder actual feels like even to my doctor. MY mother says well i pee all the time too i don't understand why you can't just go and do what you want too. Which is the reaction i get most of the time. People just don't understand its more than just peeing every few minutes which i do also. Luckily my new husband is very understanding....he doesn't bother me or pressure me to do things when i say i can't. He gets upset cause he wants to help me and he can't do anything.......WHich is so very sweet.......i hope he stays that way.......
I just can't believe that in 2005 theres nothing safe to help pregnant ladies with IC ....
I keep thinking theres got to be something out there somewhere...........but i keep running into dead walls.......
thanks for taking the time to respond. I will try and keep people posted as things go along.......
gloriabono

[Flarin-up Vicky]

:hi:Gloria,I am soo sorry.And your'e right,you would think with all the cloning of animals and all the latest technology there would be something you can take in your delicate state!! OOh,that rhymed,anyway,I know exactly what you mean about everyone around you thinking this condition is all about frequently going to the bathroom,but that's not even the half of it as we all know very well!!! I wish all those stupid,narrow minded people could just spend one day in our shoes and they'd change their opinion in a second!!! I really hope you feel better soon,sweety. I get soo frustrated and ****** when I'm in pain and I'm no where near being pregnant, I could just imagine what your'e going through!!! Take care of the 2 of u!! :grouphug:!!!!

[janelle77362]

I take Tylenol during the day and Tylenol PM when I can't sleep. Usually you're not supposed to take the PM version but my doc made an exception for me because of the IC. Following the IC diet as closely as possible has also been helpful for me. Even though sometimes it is really hard with the cravings I always feel better when I eat better.
Good Luck!

[gloriabono68]

:) Thanks janelle.......
I am sticking to the IC diet pretty closely myself........and if i do stray i take prelief.....they ok'd that........they also told me it was ok to take tylenol pm which i do occassionally......they said it was no different than taking bendryl really but i try and not take if i don't have too...plus it doesnt really make me sleep that well........nothing does.......part of my IC problem is i keep getting bladder infections one after another........not fun........My Uro said to try and drink more water to see if it would stop doing that....they don't think i am drinking enough.......so we shall see if that improves anything here......other than that i just pray i get thru it.........thanks for the reply

gloriabono

[Lenia]

I'm sorry things have been so hard for you. I don't have any advice for medications, but my prayers are with you. I am 13 weeks and the ic has been terrible the last month. I had never tried any meds before my pregnancy (was diagnosed last year) just physical therapy which did not work. I can totally relate to your experience with the kegals. I feel they make things worse; my bladder feels more irritated when I do them. You are not doing anything wrong.
As far as the doctors and meds, I really think they are all afraid of medical liability lawsuits and are terrified to prescribe anything for pregnant women. If you have to, change doctors. I am in the process of doing that right now. It's a pain but you have to feel supported by your doctor. I know most of the people on this site had gone off Elmiron, but it is rated B which is supposed to be safe, so if I was taking it before and if it was helping me I would have stayed on it. My belief is that mom should be healthy too, for baby to be safe. You shouldn't have to suffer. I hope that you are able to take something that will relieve some of your symptoms in the remaining of your pregnancy.
I know that other people or family members don't really understand and say dumb things like: I go to the bathroom all the time too. My grandmother says that to me, and I'm like, grandma you are 82 years old! I'm also tired of being told that if I learn to relax and don't think about it, it will go away, like it's all in my head. People just don't know what it's like to have to become good friends with every toilet in your home and in every public place because of your bladder.
Take care, you and your baby are not alone, do not lose hope. Things will get better. And remember: pregnancy is temporary, it will go away!
Lenia

[gloriabono68]

Lenia..........
that is so true...........I know friends and family members are only trying to make me feel better when they say that they have to pee all the time too but its not the same thing........they do not have IC and all the other uglies that goes along with it.
I was taking elmiron and i think it made my IC worse.......and i took it almost a year and my bladder became more and more irriated it seems.....so i had to stop taking it. There hasn't been much of anything that helps my IC but i just do the best i can do.........my URO did say i could take pyridium finally but only when i need it the most.....four months in and shes finally realizing my IC is not going to slow down much with my pregnancy like it does with some ladies.......as long as the baby keeps being ok......i will deal with it....
I just keep getting sick......bladder infections ,yeast infections, sinus infections........i freakin stay sick now......but all my check ups keep telling me the baby is doing great......me not so good ........lol.........at this point i just keep lauging to keep from crying and now i have lost my medicaid......i hope i can find some insurance.......
And no pregnancy doesn't last forever but the IC will.........so what are we to do??????
Did i read that your are pregnant too? 13 wks?? COngrats.......if you want you can email me personally at gloriabono@yahoo.com.....it would be great to have another pregnant person to talk too.........
You hang in there too...........take care
gloriabono( kristi)

[jackie33]

hello, i am so sorry to hear about all of you who are pregnant and having flares.. i to am pregnant only 6 weeks.. and i have only been sick once. but i went to this doctor in new york city, 3 weeks ago and he has cured everyone with ic that has followed his diet, it is gary nulls diet. he is a holistic doctor. and i have only had 1 flare up since then.. he put me on a diet of no meat, no dairy, no chicken, only certain types of bread.. and only organic food which i already eat.. he said that if u were not born with this disease than something in your body had triggered this off.. he thinks maybe since i had alot of urinary tract infections and yeast infections that all the antibiotics i took caused them to break down my immune system.,. which is so true.. ic is a auto immune disease.. it may take months for me to get better,but i am determined..i know alot of you have it very severe, so did i.. and i can not take medicine.. pain pills i mean,, i only took elmirion and pyridum plus and a few others,, but i wont take anything now.. nothing is safe except elmiron.. Heparin or Lidocain installs are ok also my uro said.. i wish there was something i could to do take your pain.. i am going to stick this diet and i will let u know how i feel,, i hope u are feeling better as i write this ...i just hope that i have a pain free pregnany.. we can all be here for each other.. :) :kissing: ;) :angel:

[gloriabono68]

Congrats on your pregnancy! I hope all goes well.........with that and with your IC during that time. Glad to hear you have found something to help yours it seems. I have good days and bad days but i am hanging in there. I am 20 wks right now with a baby girl and shes starting to move all over the place.......so now i am like WOW i am really pregnant......its weird but great all at the same time .........let us know how you are doing.......if you have any recipes , share ok!
gloriabono

[contactjh2001]

Jackie:

I'm really interested in the diet you mentioned, Gary Nulls Diet. Does he have a website? Or do you know where I could get a copy of the diet?

Julie

[jackie33]

julie, hope that you are feeling well.. i am feeling ok.. it is so hard to stick a diet when you are pregnant.. because i dont like any foods right now.. the website is www.metropolitanwellness.com hope u can get some information from them.. jackie

[contactjh2001]

Jackie:

Thank you so much for sending me the website! I am going to contact them right away. I'm glad you're doing better. I just have some mild burning today, nothing that I can't handle. Thanks again!

Julie