Newly diagnosed. Oh boy is this fun!!

[lilbluedevil82]

Hello my name is Jamie and I am 22 and it all started about 5 years ago....I kept getting what I thought were UTI's and sometimes were. Well after my 5000's UTI, I was at my GYN's office and was telling her about it and she recommended I go see a Urologist. THANK GOD FOR UROLOGISTS!! I have now been diagnosed with IC and have just started taking Elmiron. My doctor told me that if this didn't work that the next step would be a hydrodistention....any words of wisdom on that??? I am nervous and feel kinda alone. It is hard because it seems like no one understands....my poor boyfriend. I feel horrible because sex is the last thing that I want because it hurts so bad. It will be nice to talk to people that are in the same boat!!
HAppy New Year everyone!

[dyno]

Hi Jamie,
Welcome to the ICN. You are off to a good start in that you have a diagnosis now. I am going to give you the link for the ICN Handbook, http://www.ic-network.com/handbook/. Lots of helpful info in there and info about hydrodistention. Also info about the diet which is very helpful.

[Betsie]

Hi there.

A tender welcome to the ICN. It is a lot to wrap your head around, but there is soooooooo much info here, and everyone has a bit of different logic for you. For me getting familiar with the diet, the "bible" as I will always see it and getting an understanding of the fact that you can and likely will feel almost normal sometime in the future. Lots of patience is needed and knowledge is power in the IC world.

There are so many young women here the same age as you, some new and some very experienced with their treatments, I am sure they will drop a line to you.

When I was first dxd I thought I would never feel well again. I was dxd in April 2002/treatment kicked in about 4-6months later and i did pretty well for several months. I had my treatment plan tweaked a year ago in October of 2003 and except for a few minor flares, I am doing great. So, be hopefual while you are learning.

Here are my favorite links and I think others as well:

http://www.ic-network.com/

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

http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&pid=icsg- Dr Moldwin's book (a must read & my bible)

The first is the main network section in case you missed it, the second is the link to the favorite book on IC and the third is what is called the patient handbook.

There is enough info here alone to really inform you and there is a ton of stuff as well as you navigate the forum a bit.

You should be prepared to give the elmiron a good 6 months before you throw in the towel, assuming your uro told you this. the elmiron board is very helpful and if you have other treatments they are probably listed here as well.

Best wishes to you as you figure this all out. There is always a good listener around and great advice, so don't be afraid to ask questions, no matter how silly they are. We all have asked a few upon arriving. :) Welcome again!

[theclownster]

Hi there! I just want to add my warm welcome to the ICN. IC can be a scary thing when you first get diagnosed. This is a great place to get support. There's always someone here who can relate to what you are going through.

Hugs~
Jennifer

[Katrina]

:weclome:
http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies

I just want to let you know that there are ways to make sex less painful and more bearable. Both ICN and ICA http://www.ichelp.com

You are never alone!:grouphug:

[ICNDonna]

I'd like to add another :welcome: to the IC Network.

Elmiron can take up to six months or longer to become effective so you may want to consider other treatments in the meantime. Following the IC diet can be very helpful in getting your symptoms under control.

My IC was diagnosed thirty years ago. If there's any one thing I like to share with anyone with a new diagnosis, it's that there is life with IC --- it may take a while to find which treatment options work best for you and which foods and drinks are a problem, but most of us do get there --- and most of us feel good most of the time.

In my case, hydrodistention has been my saving grace. When my symptoms return and won't go away, I have another. For me they last anywhere from six months to almost two years. I also have monthly DMSO instillations, which I think help me go longer between hydrodistentions.

Sending warm healing thoughts,
Donna

[vm]

:welcome: It does feel good to finally know what is going on, huh?

Like Donna, I wondered if your doctor has you taking anything in addition to the Elmiron since it takes some time for the Elmiron to start working. Poke around the links you have been given so you get more familiar with what treatment options are out there. Then you could ask your doc about some others if your gut instinct is that something more may be needed.

It can be overwhelming at first - take the reading slowly -- and always, ALWAYS remember that most people with IC DO find treatments that help them feel MUCH better. :)

[lilbluedevil82]

Donna,
The doctor also put me on detrol LA....and macrobid at night....I am a pill store!! Is there anything that you would recommend that helps you when you are in pain??

[dyno]

Always discuss medications with your Dr. but recently I found that over the counter Uristat helpful when I am hurting from a flare. Everyone is so different and our pain is different too. Good luck.

[SharonA]

Hello Jamie and :welcome: ...

You have already received so much good advice. Please take the time to read the handbook and pay special attention to the IC Diet you find there. Many have found much relief by paying attention to what foods and drinks cause them problems.

You are not alone and there are people who do understand. :)

[Sarojini]

just wanted to :welcome: you to the ICN... you've gotten some good advice already and please keep posting. We're always here for you when you need support and love!!! :grouphug:

[traceann]

Hi and welcome also!! I am new too, been in "treatment", lol, since Sept of 2004. I was first started on Ditropan for urethral spasms (not diagnosed as IC at that time), then a UTI and a UTI imposter a month or so later, I was given Elmiron and an IC diagnosis. Then I added in the antihistamine Vistaril (hydroxyzine). I asked for the vistaril, after reading about it here on this site. I am sure it's helping along the elmiron and everything else I do, lol.

I follow the diet pretty strictly, and I am just now adding back in potential problematic foods, since I finally have my bladder calmed down enough to be able to tell when a food has been rejected by my bladder! LOL! I take Uristat or AZO Standard (OTC pyridiums) depending on what's stocked at the store when I go, :) . Usually I can get by on 800mg of Motrin when there's pain, and I use my heating pad either alone for pain or in conjunction with my Motrin. I have frozen filled water bottles in the freezer (and a cold pack) for when my urethra decides cold does the trick. And I also have a pretty good stash of Thermacare heat patches for menstrual cramps for when I have to go "wireless" like for travel, work, sleeping etc. Those things are great. If there's a burn/spasm going on I will also take either a tsp of baking soda in a big glass of water (I don't have health issues that might be aggrivated by that, such as high blood pressure, etc.) or a few Tums. Both work equally well for me.

The weekend was pretty good to me, my boyfriend finally got a reprieve from the "cut-off" club for the first time since early November, and I was fine, no pain. Just a bit of minor urethral/vulvar burn, (how you can feel sometimes from, uh, um..vigorous sex,), and I did use lubrication, so it was easily dealt with! Was I happy, well, heh heh, he was too, lmao! But that is only after a couple of months of diet, meds etc. I hope to keep on feeling better and better! When I was first diagnosed, I thought I would feel like that for the rest of my life, but it just wasn't true. Might take awhile and some adjusting of meds, but it is possible!!!!

These boards have made all my strides in feeling better possible, from all the food tips, sex tips, med tips, it's been a live-saver!!! So, again welcome to the clan!!

Hugs,
Tracey :)

[traceann]

Whoops, forgot to add that my pain/voiding diary has become indispensable for me, I keep track of all my meds, when I took them etc, and what I ate that day, plus all the potty trips and their pain rating. It's nice to look back through and see that I have gone from 25-30+ potty trips now to 15-17 trips a day! WOO HOO!! Nice to see your progression like that!

Hugs, again, lol
Tracey

[lilbluedevil82]

Tracey,
Did you have a hydrodistention? or how ever its spelled...He said that is next step...I am kinda worried about that..everyone seems to say that they are in a lot of pain after it! YIKES!!! I am in alot of pain right now...why do I need more?? :)

[traceann]

I haven't had that done, I was diagnosed based on my history, and such. I have read that it can feel bad for a few days after, and then it can improve things immensely. That's just my understanding, as I haven't had the experience yet. Heh, I can agree about the pain thing, yikes, sometimes it's hard to believe you gotta go through some pain to take care of pain...crazy sounding! I know a lot of the women here have had that done, and I think there is a board for that, you might want to specifically ask about it on one of these. I know someone will have some "experience" to share with you on the subject of it!!

I am currently being treated by my gyno, who is kinda learning as I go, so-to-speak. There is only one uro in like a 100 mile radius around me, so my doc warned me he's hard to get into, so I opted to try the route with my gyno, and then go to the uro should a need arise, like for hydro/DMSO etc, should I need it or want it. It works out ok, as my doc will call the uro and ask him questions, like when I wanted to add the vistaril to my regimen. Then he and I went over what we each had learned, and decided it couldn't hurt.

Sorry I couldn't be of much help in your question, but as I said, I know you will get answers/experience from one of the clan around here!!!

Hugs,
Tracey :)

[lilbluedevil82]

Thanks! I will try in the other thread!

[traceann]

No problem! I figured you might get a quicker response there, lol, since your odds are better in that someone there has the experience, :)

Again, sorry I couldn't help out on that one!!

Hugs,
Tracey :)