newly diagnosed

[taylora79]

I have just been diagnosed and feeling extremely overwhelmed and pretty much don't know where to begin, especially what to eat....where so I start and what can I have? Also is there anything I can take for anxiety that is IC friendly?

[jen48446]

If you're interested, I have 2 Word documents full of information, PM me with your e-mail address:-)

Keep in mind there IS HOPE:-)

Jen

[ChrissySunshine]

Hi Jen, I am also newly diagnosed. I've had a postiive potassium test, and am going on Tuesday for a cystoscopy with hydrodistention. They're pretty sure this is what has been ailing me, and I was told to go on the diet. I'm having a terrible time of trying to figure out what to eat! I've pretty much only eaten toast, Triscuts, and grilled cheese the last few days! I'm starving and not feeling any better yet! I also suffer from anxiety (made much worse recently), was just Rx'd Amitriptiline, which I will start soon. Any information at all you can share with me would be greatly appreciated! Thanks Jen & Have a great day! ~ Chris

[Sarojini]

:welcome: to the ICN... to both Jen and Chris :)

If you haven't already, you should both check out our Patient Handbook at http://www.ic-network.com/handbook . It's full of information about treatment options and self help strategies, including the IC Diet, which I highly recommend you try.

There are also several great books on IC -- probably the best is The Interstitial Cystitis Survival Guide by Dr. Robert Moldwin. It's available here in the ICN Shop.

Try to read as much as you can to understand your disease -- knowledge is power! :)

[allmart]

I just wanted to say Hi and introduce myself. I'm Allison, a 25 year old woman from St. Louis, Missouri. I was just finally diagnosed yesterday through a positive potassium test. This is something that has been symptomatic for me the last 10 years. I was misdiagnosed three times in the ER as having Pelvic Inflammatory Disease with no STD history! Finally, my gyno diagnosed me with Polycystic Ovarian Syndrome in 2001. I thought that's why I was having so much pelvic pain at random times as well as excruciating periods. I had 2 cystoscopies as a teenager and was told I had chronic UTI's and that my urethral opening was uneven and that must have been why I had so many UTI's. Of course, many doctors over the years have just taken my word for it when I would call and tell them I think I had another UTI and would just call in antibiotics with no urine culture or urinalysis. My latest flare started about 4 months ago. I was bounced back and forth between my general doctor, gyno and urologist. My gyno switched me to Ortho Cyclen from Ortho Tri Cyclen-Lo and ordered a CT scan after I missed 2 periods-probably from all the antibiotics they were prescribing me for UTI's that I didn't have. The CT scan showed kidney stones so my gyno sent me to the urologist. He ordered another CT scan and I went to see him hopeful that he had the answer. He told me that my stones were small and should pass on their own and shouldn't be causing me any pain. Then he said my CT scan showed my left ovary was enlarged indicating a cyst(big surprise with PCOS lol) and sent me back to the gyno. After another ultrasound and exam my gyno told me that I had a cyst on each ovary but neither should be causing me any pain. That's when he pulled out the Elmiron worksheet. I completely underestimated my symptoms because until after I found this site, I was not all that aware of my other symptoms-besides pelvic pain. I read others personal stories and it was like reading my own biography since I was a freshman in high school. I think I didn't have flare ups as often for a couple years because I was on amitryptiline for fibromyalgia at the time. I discontinued that med because I thought the side effect of urinary retention was causing UTI's lol So now that I've finally been diagnosed, it's a relief, but scary as hell! They gave me the standard Elmiron prescription and told me that I can call them any time to come in for a "rescue treatment" for flare ups. However, my pain is worse now than it was before the test and rescue treatment. Overall, I have been diagnosed with PCOS, Fibromyalgia, IBS-they think, Positional Sleep Apnea, Depression/Anxiety and finally IC. Current meds are Ortho Cyclen, Elmiron, Darvocet, and Xanax-rarely take as I don't like being a zombie. I look forward to getting to know others dealing with IC and would love to find support locally if there is anyone from St. Louis.

[taylora79]

hello allison my name is Amanda and I live in kansas I am 26. I was diagnosed this week and have a few more tests to do in the next 4 weeks. They thought I had PCOS as well I have all the symptoms but it was negative. I have anxiety but I was told to stop everything till further tests.I am very overwhelmed as well and need support. My symptoms didn't get worse till after delivering my daughter. I thought it was normal to pee every hour during the night because I was so used to it from pregnancy but now four years later I don't think it is normal anymore besides the flare ups and pelvic pain to go with it. I wish I would have gone to the doc sooner. We have also been trying to concieve for over a year now with no sucess and wondering now if this has anything to do with it. So I know it's a relief to finally know what going on but I am scared as well and very frustrated.

[tigger_gal]

~~WELCOME~~ I am glad you ladies found us.. you will find a wealth of info in this site.

[traceann]

Hi girls and :welcome: I too am glad you found us, there is tons of info here and everyone is so very helpful. :angel: This site was lifesaver to me when I first was diagnosed! You've already got the link to the handbook, and here's a link right directly to the IC Diet foods list! I hope it helps, I know it was with me wherever I went! :biglaugh:

http://www.ic-network.com/handbook/diet.html

Hugs!!!
:)

[PlainJane]

I just wanted to say Hi and introduce myself. I'm Allison, a 25 year old woman from St. Louis, Missouri. I was just finally diagnosed yesterday through a positive potassium test. This is something that has been symptomatic for me the last 10 years. I was misdiagnosed three times in the ER as having Pelvic Inflammatory Disease with no STD history! Finally, my gyno diagnosed me with Polycystic Ovarian Syndrome in 2001. I thought that's why I was having so much pelvic pain at random times as well as excruciating periods. I had 2 cystoscopies as a teenager and was told I had chronic UTI's and that my urethral opening was uneven and that must have been why I had so many UTI's. Of course, many doctors over the years have just taken my word for it when I would call and tell them I think I had another UTI and would just call in antibiotics with no urine culture or urinalysis. My latest flare started about 4 months ago. I was bounced back and forth between my general doctor, gyno and urologist. My gyno switched me to Ortho Cyclen from Ortho Tri Cyclen-Lo and ordered a CT scan after I missed 2 periods-probably from all the antibiotics they were prescribing me for UTI's that I didn't have. The CT scan showed kidney stones so my gyno sent me to the urologist. He ordered another CT scan and I went to see him hopeful that he had the answer. He told me that my stones were small and should pass on their own and shouldn't be causing me any pain. Then he said my CT scan showed my left ovary was enlarged indicating a cyst(big surprise with PCOS lol) and sent me back to the gyno. After another ultrasound and exam my gyno told me that I had a cyst on each ovary but neither should be causing me any pain. That's when he pulled out the Elmiron worksheet. I completely underestimated my symptoms because until after I found this site, I was not all that aware of my other symptoms-besides pelvic pain. I read others personal stories and it was like reading my own biography since I was a freshman in high school. I think I didn't have flare ups as often for a couple years because I was on amitryptiline for fibromyalgia at the time. I discontinued that med because I thought the side effect of urinary retention was causing UTI's lol So now that I've finally been diagnosed, it's a relief, but scary as hell! They gave me the standard Elmiron prescription and told me that I can call them any time to come in for a "rescue treatment" for flare ups. However, my pain is worse now than it was before the test and rescue treatment. Overall, I have been diagnosed with PCOS, Fibromyalgia, IBS-they think, Positional Sleep Apnea, Depression/Anxiety and finally IC. Current meds are Ortho Cyclen, Elmiron, Darvocet, and Xanax-rarely take as I don't like being a zombie. I look forward to getting to know others dealing with IC and would love to find support locally if there is anyone from St. Louis.

Wow Allmart you sure have been through the works. Sorry to hear you have been suffering so much and for so many years. I am 25 as well and I can relate to the chronic health condition struggle as I've had huge time problems with bipolar disorder since I was 15 (now under control finally!) I haven't officially been diagnosed with IC but I have a lot of the symptoms (am still trying to figure out what the heck is going on).

I've been suffering with this bladder problem for 2 years which is nothing in comparison to how long you've had it but still I am very sick of it! You must be an incredibly strong person to have survived all that (same goes for everyone on this board -- I am amazed at what you all have survived through!).

I'm not in St.Louis but I'm always online if you want to chat.

I hope things start looking up for you.

Erica

[allmart]

Thanks to everyone who has been so welcoming. I'm just glad there's finally a name to put with this pain. It just blows my mind that so few doctors are educated on IC. I guess I shouldn't be surprised since when I went to my newest general practitioner and told him I had been diagnosed with fibormyalgia in the past, he practically told me that was all in my head too. Once he saw some of the other symptoms I had he became a little more understanding and very thorough with my medical problems. This no caffeine thing is killing me this morning. I've jumped into the diet and what a change it is! Although, I did find a delicious organic oat bread with no preservatives at Wild Oats this weekend. Just wish they didn't cost $4 a loaf! Does anyone know if R.W. Knudsen organic pear juice is ok to drink? It says squeezed from whole ripe organic pears, but does have absorbic acid listed for color. Those are the only 2 ingredients. Is absorbic acid very bad? I assume it's some sort of preservative. All the other organic pear juices had other juices, like apple or grape mixed in. Any info would be helpful. Thanks again to everyone and hope you have a good Monday!

[traceann]

Hey allmart!! I would stay away from the ascorbic acid for now, it's vitamin C, and can be hugely irritating to our bladders!!! ;) I ran into the same thing with Gerber Pear Juice, had added ascorbic acid. Bummer. It's also on the "Usually Problematic" list too, lol.

Yeah the diet can be a big change to adjust to, but it's really only the worst and most restrictive in the beginning. It does and can get better! :) Once you start adding foods back in, you most likely will find you can eat a lot more things than you thought you could. Starting the diet strict helps get your bladder to calm down and the diet is a "shotgun approach" - cutting out all known aggrivators. But once you start adding things in, you probably will discover you can tolerate lots of things that maybe someone else may not be able to, which is why it made it on the list. ;)

Hope this helps out a little bit!! :)

Hugs!
:)

[emmiep]

This is my first trip to this site also. I was diagnosed this week and after many tears, I just want someone to tell me that my life isn't always going to be like this. I had my first catheter put in today with Solu-Med and it hurt so bad I hit the floor of the doctors office.

[PlainJane]

If you're interested in going the natural route without side effects let me know. I'm on supplements & feeling wonderful!!

Jen

Hi,

I've been trying the natural route (acupuncture, homeopathy, naturopathy) with no success so far. I would definitely be interested to know what supplements you are on.

Thanks,

Erica

[traceann]

emmiep :welcome: to the gang! I think most of can say it can get better. I know in the beginning at the time of diagnosis, it's the worst. But once you get some of the meds under your belt, and try the diet it will start to improve. Most of us do live fairly normal (whatever that is!! :biglaugh: ) lives, just with a few modifications here and there!! :bonk:

Here's a couple links for you to check out:

Patient Handbook:
http://www.ic-network.com/handbook/

IC Diet foods list:
http://www.ic-network.com/handbook/diet.html

So, try to keep your chin up and know it won't always be this bad, once you find your med/med combo -- there will be brighter days ahead!!

Hugs!!
:)

[hoping4acure]

just want to add my :welcome:

these ladies have pretty much covered everything.

Keep reading...remember we have all been there. This is a great site, and full of information.


Keep your chin up and keep the faith


:grouphug:

[ChrissySunshine]

Thank you all for your welcome & responses. This site has already been a wealth of information, I'm so glad I found it. It REALLY helps (as you all must know) to know that you're not alone. So, Thanx again everyone!

[Katrina]

:welcome::welcome::welcome: to all the new members at this thread!

http://www.ic-network.com/icchef/ online cookbook IC this and Julies book int he icn store are grat helps for the diet http://www.icnshop.com/

EVERYONE PLEASE FEEL FREE TO CONTACT ME IF YOU WANT TO. Welcome to the family.

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies

[aew91221]

Hi There!

I was also just recently diagnosed and will undergo the bladder distention and cystoscopy in Jan. I also suffer from anxiety disorder. I have been feeling very alone and very much in pain. How have you been coping? The pain is driving me mad.

[aew91221]

This is my first trip to this site also. I was diagnosed this week and after many tears, I just want someone to tell me that my life isn't always going to be like this. I had my first catheter put in today with Solu-Med and it hurt so bad I hit the floor of the doctors office.

Hi.

I am 25 years old and just diagnosed as well. I also suffer from chronic anxiety. I am undergoing a cystoscopy in Jan. I also had a catheter a couple weeks and I wanted to die. I think its the worst pain I have ever felt. Mine really flares up around my period. I am in so much pain. It has to get better, doesnt it?

Amy :)

[SusieQ045]

jen. i would like he documents that you have with the information, i tried to email you and it said htat you werent accepting emails. if you could send them to me it would be great. avonmommy045@aol.com
thanks :)