Just discovered IC Network yesterday.....

[bama_girl1979]

I haven't been brave enough to actually post yet, though, so here goes....

I am 26 yrs old, happily married with 2 daughters--ages 6 and 3. For the past several years (as long as I can remember really) I have had what I thought was "female problems". I went to see several different OBGYN's, who for some reason always made me feel like the problems were just in my head. I would type up detailed lists with all of my symptoms and questions, only for them to be ignored. Finally, one day last November, I was visiting yet another new OBGYN. He actually read my list and wanted to discuss my problems with me. Then he told me about IC, and he referred me to a urologist. I started researching IC and sure enough, it was 100% what I am experiencing. It took me a while to actually make an appointment because it was very scary. What if I have this and I have to live knowing there's no cure and it will only get worse? I wasn't really ready to have to face that. Eventually I got courage enough to call and make my appointment, taking the notes from my OBGYN with me and also another copy of my list. He immediately started testing me, the first of which was a journal (I forget what he called it) I had to keep for a week writing down how much I drank and what times/how much I used the bathroom. (Carrying that little measuring cup around in my purse was really embarrassing, too). The next test was a bladder ultrasound, and then urodynamics. My next test--a cystostomy--is scheduled for next Friday. My urologist has been great and I trust that he knows what he is doing. It just seems like there are so many tests, are they all really necessary? Should he know something by now, and if he does is that the reason for yet another test? I guess I just don't really know how this process works, so I would like to hear from others who have been diagnosed their experiences with these tests.

I also have a question about flare-ups. The first one I had I thought I was dying. It was the most painful thing I've ever experienced. But I have noticed that for me they happen more often after having sex. Does this happen to anyone else?

I am still new to all of this and every day I learn even more about this disease. It is very comforting to know that I am not the only person who is going through this, and reading all of your stories on this website has made me realize that this isn't something that is going to bring me down as long as I don't let it get the best of me.

I am looking forward to making some new friends here and having people who understand what is happening to me to help me on this journey. My husband is great, he is very caring and supportive, but he can't really understand everything that I am feeling because he hasn't been through it himself.

I also want to say a special thank you to a fellow Alabamian , csocain, for making me feel welcome here from the first moment I joined.

:) Christie :)

[vm]

Yep, sex is a big trigger for many of us. The good news is that most of us find ways to make it more comfortable and enjoyable with a little creativity and lots of luibricant. Certain positions are more aggravating to the bladder.

If you haven't already seen it, the ICN has a wonderful online Patient Handbook at this link: www.ic-network.com/handbook You'll find lots of self help tips, tips about diet (which is so very important with IC), treatments available, diagnostic methods, etc.

Anyway, :welcome: and don't hesitate to ask any questions, OK? :)

[ICNDonna]

:welcome:

It sounds like you have found a urologist who will be confirming a diagnosis for you soon. And once you have the diagnosis, get started on an IC diet and treatment, you should begin to feel better.

As you read posts on these boards, be sure to remember that for every individual posting here that they are in pain, there are literally hundreds out there with IC who aren't posting because they are feeling good and don't feel a need for the support of the boards.

It may take a while to find exactly which treatment options work best for you, but most of us do.

Warm hugs,
Donna

[traceann]

Hello and :welcome: Christie! You have come to the right place for support, info, coping ideas etc!

Yep, like VM said, sex is a trigger for many. And again like she said, the good news is it can be done and enjoyed! Lots of lubricant (whether you think needed or not, lol) and lots of communication and experimentation. And when bladder absolutely says "NO WAY" to intercourse, there are other activities to be had and enjoyed ;)

IC is pretty much a diagnosis made by making sure other causes are ruled out, so yeah, you if your doc wants the tests, I suggest going with the flow. Sounds like a good doc you have, covering all the bases! :woohoo:

Oh yes, I can not tell you what a lifesaver these boards are! I can complain, talk about pee and other bodily functions and save my poor hubby from all the gory details so when with him, it can just be "us". Not me, him and IC talk! :biglaugh:

Here's a link right directly to the IC diet foods list, I saved it cause I could never find the darn thing twice, lol. Diet for me is a huge tool I use to keep my bladder happy, although the longer I have been on my meds, the more tolerant my bladder has become towards foods. :)

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

Again, welcome to the gang, and look forward to seeing you around the boards!! Ask any questions you want, nothing here is too embarrassing at all, in fact we all kinda giggle at the stuff we end up discussing! Only at an IC site... :biglaugh:

Hugs!

[Katrina]

:welcome: to the ICN! I am glad you found us! I am 28, happily married, and am quite certian I have had IC since I was 13 or so.

Flare ups after sex...very common....there are more common flare triggers in the list in my link for from the oldies to the newbies. There is a lot of info on the sex board http://www.ic-network.com/forum/forumdisplay.php?f=38 about how to minimize the pain of sex....also there is a lot in the handbook.

I want to point out that although there is no cure for IC most people get a lot better with treatment and only a very small amount progress.


Good luck with your doctor and getting the best treatment for you! :grouphug:

[Sarojini]

:welcome: :)

Remember, only a tiny percentage of IC patients actually progress... so there's a great chance that the worst you will feel is what you experience now, and that your symptoms will only get BETTER with proper treatment. I know it seems like a lot of testing, but they need to rule out other things that could be causing the problem -- sounds like your uro is being very thourough and that is a good thing!

Good luck with your appointment and let us know how it goes... :grouphug:

[Amyinagony]

WELCOME, WELCOME, WELCOME!!
Best support!!! Lots of wonderful people here with so many comforting words and advise.
Wish you luck with all of your appts and cysto coming up. I agree, sounds like your URo is going in the right direction. Please let us know how that goes for you.
Take care.
IC Love,

[Dixiefireball]

:hi: and :welcome: to the ICN family. These ladies has already gaven you some great advice.
I must agree the IC diet has helped many of us some even control there IC by the diet alone.
a great site to check out is www.ic-network.com/handbook you will find the diet there and other helpful information.
Best wishes and plz let us know how your doing remember we are here for you and we do care and most importanty understand.

[VickiB]

Hi Christie, and welcome!

I just wanted to add another reassurement that IC isn't considered progressive, and most of us do find ways to manage the symptoms.
I'm at the point that I hardly know I have it anymore, -unless I eat something I shouldn't! So yep, another big "thumbs up" for the IC diet from me!

Vicki

[~*~Christine~*~]

:welcome:
Don't be afraid to post more often, we don’t bite ;)

[cass2376]

Hi Cristie, :welcome:
I don't need to add too much more cause all these lovely ladies covered a lot of what I would of said, way to go gals!! :) Anyway, your uro is doing a great job, it sounds like he knows what he is doing and he is just very thourough!! I'm so glad you found us, like mentioned before, it feels great to have somewhere to go to vent, get encouragement, info, joke around, give updates, and sooooooo much more!! As you look through all the posts you will notice that a lot of your questions may be answered w/out having to even post sometimes. But it's fun to post and my favorite thing to do is to encourage people and be there for someone when they really need it, its rewarding. Another thing that cracks me up is my spelling, it sucks!!, and I'm a mother of four awsome children, Joseph 9, Jenae 7, Victoria 5, and Janelle 4. Oh another child I forgot is my husband Joe 33, JK.!! :biglaugh: No, he is so great and I Love him more now than ever, he has been great through all my pain and flares and the many years of not Knowing what the heck was wrong w/ my bladder!! Our 10th anniv. is this Fri. I can't believe it!
Anyway, like always, I'm just yapping away!! Oh, one thing I could add thats not been mentioned yet is, after sex, I usually get a wet cold rag and sit on the toliet and hold it there, thats if you experiance burning, its like a cold sponge bath, (down there, you know) when the burning is real bad, I get a cup of cold water and slowly let it trickle where it burns and there is always a cold pack that feels great too! Sorry for being so frank but it does work!!
Hope to hear from you soon, and if you need anything Pm me or e-mail me at
macias2376@charter.net I try to answer back quickly but w/ four kids you never know! :loco: :) Well I should go now, I have taken up enough of all who reads this time!!
Take care, Welcome again, and God Bless, Cassandra :angel:

[Rosalie]

Christie
:welcome: Welcome welcome
You won't look back after getting on these boards.They have saved most of us at one time or another.
I also found them before a diagnosis, and got so much relief just following everyones' advice.
As someone else has already said, it's not just IC stuff. There are threads on all sorts of topics and the venting thread when you need to let off steam.
For me, at the moment I am looking for a quilting pattern...so ladies or gents I'm running out of time!
Good luck with your cysto, let us know how it goes. And yes, you will find friends here, from all over the world.
Rosalie

[bama_girl1979]

Just thought I'd post an update. I had my cystostomy today, and I have officially been diagnosed with IC. After the procedure, my uro went out into the hallway and wrote some notes and did whatever they do with the little tape recorder. He came back in and told me to get dressed, and asked me to go wait for him in the conference room. I was nervous, I mean....he already suspected IC, but I didn't know why he wanted to talk to me in the conference room. My husband was with me. When the dr came in he had tons of info and a list of websites that I should visit for info. the first one he mentioned was www.ic-network.com. I had to tell him that I was a step ahead of him on that, LOL.....

He wants to treat me with Elmiron. He wants me to come once a week for a treatment session and get Elmiron put directly into my bladder via a catheter. Is this a normal procedure? He said I should do this for about a month, and then come once a month and go from there.

Thank you all for being so supportive and for making this whole diagnosis process a little easier. It's nice to know that I will have a support system through this journey....

[bama_girl1979]

I forgot to ask this in my last post, sorry. He also checked my bladder capacity today and it was 200 cc's. I don't know what the bladder capacity of a "normal" bladder is, so I don't know if this is good or bad or what. Could someone please help me with that?

[missychan]

Ok, so I'm late on this... what's new? :bonk: Welcome! Glad you found us, and it sounds like you've got a good doc. At least he's taking some action for you, I hope it helps!

Sex is my biggest trigger, usually I'm ok "during", but for a few days after, I'm in agony. Someone may as well have hit me in the pelvis with a sledge hammer, tends to ruin the mood, huh?

I hope the instills work, keep us posted!

Missy

[sami4]

Welcome and glad you found the board. I am one of those who has a mild case of IC. I dont have any food allergies and unless I eat hot sauce usually dont notice bladder symptoms.
My main complaints were constant bladder pressure, overactive bladder especially during night when I got up 3-4 times. Crankly urethra and occasional red vulvar area. I thought most of my complaints were gynecology related, but I think I may have been small flares. What does set me off big time is not enough vaginal and systemic estrogen. Progesterone makes me flare immediately because it blocks estrogen in the system.
I take Enablex 7.5 mg, and the usual alternative remedies for IC: Algonots Cystoprotek, calcium citrate, Evian water, and occasionally marshmellow root.
I am able to control my symptoms with the above.
Before I started the Enablex I was peeing about 200 cc every couple of hours or every twenty minutes if I drank a lot. Now, after a month on Enablex and the above alternatives my bladder pees run around 500-600 cc about ever 3.5-4 hours. So, I have improved. The best part is that between times I dont feel that horrid pressure so your mind is forever worrying that you may need a bathroom. I drink about 36 ounces of Evian a cup an hour before 6:00 PM. I have cut down on one bathroom visit a night and now go twice a night about 500 cc a trip. For some weird reason now that I drink more water during the day, my bladder capacity improved and seems to empty better.
I read that the average bladder capacity to signal a sensation you might want to pee soon is 200 cc, average normal pee volume is around 300-500 cc, and average frequency of normal persons is 10 in 24 hours. I was feeling pressure and urge to go now at first at 200 CC or less before Enablex.
Good luck, you will do fine and IC usually dont get any worse.
Hugs,
Sammie

[Oxana]

:welcome: Christie!
I'm new too and already love the people here. You will finde many important, helpful information and great support on this board.