Introduction from a "Newbie"

[Maja]

I got diagnosed with IC last summer and had the hydrodistention done. That seemed to help until now......IT'S BACK! I have been in denial about having this for 6 months because it hasn't been bothering me after my surgery. I have been on Elmiron for 5 months but have been taking only half the dose because i misread the instructions. I also didn't change my diet until recently. Now I am finally trying to educate myself about IC and accept that I have it. The more information I read the more depressed I seem to get. My bladder has been bothering me for 2 weeks now. I accepted it before my period because that is supposed to be the norm but my period had come and gone and I still have bladder pain. I take Aleve for it but it doesnt seem to do anything. The heating pad helps a bit but I have trouble sleeping at night. Im also afraid I am taking too much ALEVE because sometimes I go over the recommended dose. HELP!

[Dixiefireball]

Oh hon i'm so sorry you are flaring. Have you been check to make sure you don't have a UTI?
I think you may find www.ic-network.com/handbook very helpful as far as help with the diet and treatments go.
Please don't let these post scare you most of the icer who are having good days and have there ic under control don't post much.
Please Note there is many treatments out there you just have the find out what the best treatment is for you.
I do hope you get feeling better and please give your doctor a call to make sure you don't have an infection.
if you have one a round of anti. should clear it up and you will be on your way to recovery.
sending you hugs and prayers

Rhonda

[SharonA]

:welcome:

Please don't let all this stuff depress you. Remember that we are all so very different. There are so many different symptoms with IC and many different treatments that help in various ways.

I am very glad that you are trying to learn all you can about IC. The more you learn, the more you can help with your own health care. :kissing:

[sylvieCT]

Hi there, I know how you feel. The accepting part is really hard and sometimes I torture myself over it. I don't take my meds., cheat on the diet, and "test" myself only to find that the IC is really there and I have to take care of myself. Welcome to our board.

[Katrina]

:welcome:
I am very sorry you have IC and are feeling bad. You will find a way to feel better...have hope.
I believe Aleve may be hurting you. I thought it had ibiprofen in it.

Here are some pain relief ideas for you
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem

http://www.akpharma.com/prelief/acid_reduction.html

[VickiB]

Hi Maja, and welcome!

It's not unususal to find the acceptance of an IC diagnosis depressing! That's actually quite normal! We all were pretty much in that same spot at one time, and are here to help you through this, should you need us. Just like many of us were helped through it when we were 'new' to IC. I want you to know that most of us found much brighter days ahead. Sometimes it takes a while to find the right treatments, or combination of treatments, that brings improvement. Most of us do get there though.

It's great that you are taking the initiative to learn all you can about your condition, and this is a wonderful site to do it at! Armed with knowledge you have a good chance of getting this little beast under control. The diet has been a great help to many, myself included, and I really suggest you give it a try.

Hang in there!

Vicki

[Maja]

I want to thank all of you for being so helpful and encouraging through this hard time. I am still flaring ( I had white alfredo sauce chicken pizza and dealt with the consequences until 4 am last night)

I have not seen my doc in 5-6 months (when I first got diagnosed )and am thinking about switching to a new urologist for many reasons too long and negative to detail here. Until I find a new urologist is there ANY over the counter pain relief I can take for my flares that will not make it worse? :hmm:

I have Tylenol PM , Tylenol, and aleve but am afraid to take anything becuase last night I took tylenol pm and my symptoms got worse. I don't know if it was the white sauce pizza ot the tylenol that caused the flare up and I dont want to make the same mistake twice. Please Advise!

[kelly McC]

Can you ask your Md for some thing to help with pain control until to find a Uro. In the beginning my Md was the one to give me my meds. As my first couple of Uros would not prescribe any pain meds.My new doctor is a urogyno and now prescribes all my meds. Have you tried ice packs or the heated sticky patches. Good luck in your search for a uro here is a list of doctors you can see if there any in area http://www.ic-network.com/handbook/mdlocate.html
Huggs,
Kelly

[vm]

I think Kelly had a great idea to check with your GP about some meds. Also, have you ever tried Pyridium? It is over the counter and is a urinary analgesic. It helps me a little bit with flares, a lot when I have a UTI. Different people respond to it differently, but it might be worth a shot.

I know reading info about IC can be depressing and sometimes scary. Try to balance every "bad" thing you read with a positive thing. Most people with IC really do go on to find treatments that help them feel better most of the time. I had to drill that into my head when I first started "researching". I was afraid to hope, but it was all I had.

Hang in there, OK? And keep updating us. :)

[VickiB]

I'm sorry you're still flaring! I don't know if taking tylenol helps or can make matters worse. Until you do find a new Uro, it might be a good idea to talk to your GP, if you have one, about some type of pain relief. Otherwise, did you look at the pain management ideas Katrina put together? -It's the first link in her post above. Perhaps you'll find something there that may help.

Hope your flare calms down soon!

Vicki

[Katrina]

Usually tylenol is and AZO standard are my OTC recommendations. Avoid ibiprophen since it is acidic.
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

Hope you feel better soon!!!!

[Maja]

I want to again thank all of you for helping me with this new illness. I went to my uro that did the hidrodistention on me last June and he insisted on doing a pelvic exam even though I told him I'm in WAY too much pain to do that. He told me that he needs to find out whether the symptms are caused by psychological or organic factors. I told him since he did the surgery and cyctoscopy on me in JUNE and later pointed out the ulcer in my bladder, he should know it physical. (This doc graduated from Med school in 1965) I really did not know what to do and felt completely helpless but I would not let him give me the pelvic exam bc I knew that would worsen my symptoms even more. He even mentioned that he may have to do another hydroditention and thats when I knew he was doing this all for profit and didn't realize my pain concerns. That night me and my fiance were up until 5:30 am. I have never cried so much in my life from pain and frustration of not being able to sleep. The next day my fiance took off work and took be to a different urologist. I told the new uro that I have been in a flare for 3 weeks and it progeressively is getting worse. HE DID NOT EVEN OFFER TO DO A PELVIC EXAM because he prbably understood it would increase the pain even more. He gave me Ditropan and Bextra to take and sent me off. :woohoo: I was so relieved that I didnt have to go through the exam! The medicine is working but I still feel some pain. I hop this flare will go away soon because 3 weeks is quite long enough. :bonk:

Katrina, the pain list you referred me to is very helpful. I tried the sitz bath and felt great right afterwards but then hours later (3) my symptoms came back even worse. Do you think that it was the bath? It is so hard to try out new things because you never know if it will be beneficial or hurftul.

I am back at work today finally and am just glad I can function. :)

[vm]

That is great that you got into another uro so quickly. It is sad to hear about uros still looking for "psychological" causes for our symptoms. Thank goodness you knew better and moved on to someone who can help you. :kissing: