my first test

[NATASHAG]

:loco: i had my first test on the 30th and it was a potassium challange. well seeing how i am posting this you can probally already guess what the results were POSITIVE. the dr hands me a script and says here take this you will feel better in 3 to 6 months. i ask my dr. what about my pain arent you going to give me something for this pain ive been in for two years? he said for this? does my dr. not fully understand what pain ic causes? or does he just not care. can anyone please tell me what i should do.

thanks so much new to the ic family natasha

[Briza]

Hi Natasha
So sorry about your diagnosis! I'm guessing the prescription was for Elmiron? If so, then, yes, there are many other meds that could help you with your symptoms in the meantime. Educate yourself on all possible meds and treatments and make another appointment with your urologist. Welcome and best wishes!

[NATASHAG]

im not seeing a urologist i am seeing my gyn and he said that none of the urologist arround here deal with ic. could you tell me a few meds i can check out he only knows of elmiron and told me that if i find something else to let him know. im suppose to let him know if i find something that is suppose to work better and faster. thanks soooooooo much natasha

[Briza]

If you look at the top left corner of this page, click on the Patient Handbook and you will find lots of info there and there is a section on Oral Medications. Also look into the IC diet. You can see the list of meds I take in my signature. Many who post here have their meds listed, too. My gyn is also managing my IC treatment right now, but I was dx by a urologist.

[patricia1]

Many doctors dont understand exactly the pain that IC causes. Sometimes you have to educate them. Like wcq there are many different types of meds out there to help with the pain. Not all of them are narctic. Alot of doctors do not like to prescribe these and you might have to go to a pain management doctor or clinic for that. If you are not on the diet I highly suggest starting with this and see how it goes.

Some meds I have taken in the past for pain that are not narcotic are Atarax/Vistrill (prescription antihistamine), neurotin and Ultram. Ultram is a non-narctic pain medicine. It acts the way a narcotic would, but it is not as long lasting and for some IC'ers it does not help their pain. It does well for me as my uro said it has some anti-inflammatories in it. But beware even though it is not narcotic if you take it daily for long periods of time when you stop suddenly it will cause withdrawl symptoms.

Take a look in the patient handbook it has a wealth of info. And I would suggest finding a uro.

[kelly McC]

http://www.ic-network.com/handbook/ the handbook has helpful information. Everyone is different somethings work somethings dont. If you like your doctor you could print stuff from the handbook. My gyn was the only doctor who would help me in the beginning. I saw quit a few Uro's before finding the one that I like! There is a section in the handbook for doctor locator in many areas.
Hope your feeling better,
Kelly

[Curly]

I am also new to IC but I have read a lot of the patient handbook and I ordered the IC Survival guide. It explains about the various treatment options. I had problems with my first uro and switched to another one in the same practice. She is a youger woman and I like her but I am still trying to make myself knowledgeable to all the options. I wish I could know the one that will work for me the best. I have not tried Elmiron and I really want to. But I understand that IC is very real and very painful. You aren't alone.

[Emma's Mommy]

i take percocet as needed for pain......but sence i have been on it for a month now i am finding it dosnt work as well as it use to. I am cydo/hydro on april 21st to conferm my diagnosis and then my uro will be able to better manage my pain!

once i started following the (bland) IC diet i saw that i was in less pain and i had less flare ups. I also suggest keeping a journal of everything you eat (what time and how much), and activity you do (again what time and how much) and at if you have any flare ups write down what time the pain started and how long it lasted....i know it may sound like alot but you will start to see a pattern of what you eat and do and if it causes pain or not. then you will be better able to manage your pain better

i wish you the best i am also new to IC and it is hard to deal with at first

[NATASHAG]

i have only had one test and thats it and my gyn tells me to start taking these meds (elmiron) that will make my hair fall out and wont help me for 3-6-8 mths and they dont know if it is expressed through breast milk and im thinking if it does this to me what will it do to my 2 1/2 mth baby girl. any one else taken this med while breast feeding? if so let me know. i hope that you pain is eased soon but atleast your dr knows that ic is serious enough for pain meds mine acts like its a big deal but no need for pain management. thanks so much for responding natasha

[Kara Isabel]

Hi Natasha and :welcome:

That is EXACTLY what happened to me! I had a very painful PST (After the rescue solution wore off, I couldn't stand up straight for 3 weeks!) And my uro-gyn handed me a script for Elmiron and told me "I'd be cured in 3-6 months! (Which contradicts every single thing I've read INCLUDING the literature HE gave me! lol)

And I really had to be proactive! I went back a week later and asked for Elavil and a pain mgmt consult.........went back a few weeks later and BEGGED for the hydroxyzine! And now I'm switching to a more knowledgeable uro, and seeing a pain management doc, so things are hopefully going to get better **fingers crossed**

I'm not sure about breast milk and elmiron, if noboby responds, start a thread on the pregnancy/mom board. Maybe more new moms will read it!

hugs!!

[ICNDonna]

Nearly all urologists are familiar with IC and able to treat it. My suggestion would be to go to the ICN Main Page (link above) and follow the links to see if there is a uro near you listed.

Also, while elmiron can have a side effect of hair loss, only a very small percentage of patients taking it actually lose any hair.

Warm hugs,
Donna

[Emma's Mommy]

i asked my OBGYN about this in a recent apt b/c i do plan on having more kids someday when i am feeling back to my old self. He said that elmeron is safe to take while pregnant and breastfeeding!!!! :woohoo:

i have only had one test and thats it and my gyn tells me to start taking these meds (elmiron) that will make my hair fall out and wont help me for 3-6-8 mths and they dont know if it is expressed through breast milk and im thinking if it does this to me what will it do to my 2 1/2 mth baby girl. any one else taken this med while breast feeding? if so let me know. i hope that you pain is eased soon but atleast your dr knows that ic is serious enough for pain meds mine acts like its a big deal but no need for pain management. thanks so much for responding natasha

[NATASHAG]

thanks so much for telling me that now i can start my meds today and be a day closer to hopefully feeling a little better atleast. you guys have been so helpful. thanks to you all. natasha

[jskeetz7]

Hopefully someone has some advice on this. My husband and I are trying to get pregnant. I'm 35 and I do want a child. I have had IC for over 12 years and it's somewhat under control with the meds I've been taking and also by staying away from certain foods. Today I'm going to see my GYN about why we've been trying for over 7 months and still not pregnant. My question is how can I handle being pregnant and not being able to take my meds. This doctor I have isn't really happy about the idea about me still taking pyridium when I'm pregnant. I asked my Urologist and she said that she has had patients that were pregnant and still taking this drug. Not to mention I'm terrified of pain and a vaginal delivery just seems to scary even with IC. Plus I don't think even if I get pregnant this doctor I have right now is into perfoming a c-section unless it's an emergency. I know I'm not even pregnant, but these are things that keep popping into my head. If anyone has had this experience or has good advice I'd really appreciate it.

[patricia1]

Hi and :welcome: jskeetz7..I have heard of some people who's IC has gone into remission once they become preg. and then again some that theirs have not. I have not experienced preg with IC as mine developed after the c-section birth of my son. Also I would not recommend a c-section because of IC alone. I had both a vag. birth and c-section and prefer the vaginal. I hope you are able to exper. the joys of preg. very soon. Also I think there is a section on the website here where a mom journaled her preg. story for everyone to read.

[mom2kk2006]

Hi Natasha,

I am in the same boat as you too. The doctor has only given me Elmiron 2 weeks ago and I do have to say on a positive note that I do feel somewhat better in the frequency department. I had my bladder blown up and given Elmiron and sent on my way. This Gyne is supposed to be amazing so I have a 2 page list for her including "what else can we do for frequecy" and sooo much more... I will keep you posted. Good Luck.

[NATASHAG]

dear jskeetz7,
although i was just diagnosed with ic since i had my daughter i was experiencing the pains of ic for two years prior to becoming pregnant with my last child. for the first two weeks of pregnancy i was in so much pain i couldnt even get out of bed i was sure i was miscarring. thank god it was only the pain from ic i later found out. so im not sure about the remission part because i wasnt on any meds at the time and im still not taking my elmiron due to the fact that im breastfeeding and dont want to take any chances with my daughters wellfare. im new to this so im not really sure what to say i guess i can only wish you the best and tell you that i hope all goes well for you and that from what i have came to know is that the meds arent suppose to hurt your unborn child or breastfeeding baby. oh and i had vaginal delivery and i couldnt tell the difference between having ic and when i didnt so from my experience it doesnt make a difference. with all hopes for the best natasha

[jskeetz7]

Hi and :welcome: jskeetz7..I have heard of some people who's IC has gone into remission once they become preg. and then again some that theirs have not. I have not experienced preg with IC as mine developed after the c-section birth of my son. Also I would not recommend a c-section because of IC alone. I had both a vag. birth and c-section and prefer the vaginal. I hope you are able to exper. the joys of preg. very soon. Also I think there is a section on the website here where a mom journaled her preg. story for everyone to read.
I received your message and I thank you for your advice. I've been really busy so I wasn't able to quickly respond. I do have one more question.....why do you not recommend a c-section if I have IC. I thought it's easier because a vaginal delivery could take to long especially if it's my first child. My sister and law had triplets and had a c-section and two months later she seemed to be ok. Please let me know....
Thank you!