Hi, newbie

[Kaseye]

Hi, my name is Kasey. I was recently given a "probable dx" if IC. I have to go back on the 23rd for my potassium sensitivity test, but the OB I saw said that she absolutely expects it to be positive.
Initially I was happy, as I thought that the issues I had were due to the mild pelvic prolapse I have. Thankfully, that is even less than it was- but now that I have learned a little more about the IC, not feeling quite as happy.

I recently had a quite traumatizing pgcy. I had severe hyperemesis gravidarum, and due to the dehydration, ended up with kidney stones- and then would randomly pee blood whenever I wasn't hydrated enough, and that stopped about 6 days after birth. I thought that the pain issues I had in my bladder/urethra area were maybe particles from my kidneys causing discomfort- but I read on here the other day that you may have particles in your urine with IC.

So, here I am- trying to figure out as much about this as possible.

I have some questions :)

Is treatment an option- or will it get worse if I don't treat?

Anyone know of any homeopathic meds I can try for this? (That work with breastfeeding?)

Will IC cause kidney/flank pain? I still have it occasionally, and just wondering if maybe this causes it.

Is there a list somewhere of "safe" foods, and foods that always aggravate IC, or is it different for everyone?

Thanks so much for your answers, or for even reading through here. I am so glad I found this place.

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UPDATE: I went for my PST and it came back positive for IC. boo. I was momentarily hopeful when I didn't feel a horrible burning from the first solution (saline) I had thought in my head that they would do the potassium first, and then if that burned do the rescue as the second solution. So when all I felt was the urgency and discomfort I was thinking :woohoo: Then she did the potassium and I hollered OW! I think they heard me in the next room :oops: After I just cried. I had that momentary hope that this wasn't wrong with me, and it felt like such a huge letdown when I did react. Odd, because going in, I expected to be dx with it, but all it took was that three minutes of not burning from the saline that I thought was potassium to get my hopes way up there.

My dr prescribed elmiron 100mg three trimes daily for three months, then we re-evaluate to see if I can go down to two times a day. That is it for now (well, and the atarax as a prn, but I am avoiding that unless absolutely necessary) because I want to keep that meds I am on while breastfeeding to an absolute minimum.

[Kaseye]

Just found the ic diet, so I answered my own question,lol.

[statesboro]

I guess I will be the first one to chime in and welcome you. You can expect some others will do the same thing. Anyhow, none of us happen to be glad we have got IC. Of course, it is still good to be properly diagnosed and put a name to it. At least, you have found a place where people will be understanding. We all seem to find people that don't understand. I feel sure you will let us know if the OB turns out to be right. (if you really have IC) I did not read anything about frequency, but I would try to find a treatment. Yep! Oh! We are not all the same.(with frequency, pain, & meds) It may not get worse, but I don't think it usually gets better if we don't try some kind of treatment. Besides, I have been coming on here only a few months by now. I have been surprised at the amount of people that have been properly diagnosed and come on and talked about it since then. (and some being diagnosed that have never been on here)Ok, then. You have found out about the "IC Diet" by now. The newbies are always told about it. Of course, I can tolerate some things that you may not be able to. Let me get offline and get my tired self in bed. Ok, then. I have got much love for you as well.

[ICNDonna]

I'm sorry you may have IC, but at least you will know and can begin treatment. Some people with IC find that if they follow the diet they do very well --- and that's something you can do right now, even before you are diagnosed.

Be sure to let us know after your test.

Warm hugs,
Donna

[leelee88]

Hello and :welcome:

If you found the IC diet then you have probably came upon the patient handbook! There is a lot of resourceful info in there..Again Welcome and if you need anything please do not hesitate to ask!

[Kaseye]

I was prescribed atarax at my appt, until my for sure dx. But OB said she doesn't expect me to have much relief from it, and I haven't started it yet. I'd rather not take anythign until I know for sure, and I have been dealing with it this long...

[ellenjb]

Hi!

Wow, it's pretty scary how similar our stories are!! Before my first pregnancy, I was diagnosed with prolapse (only 27 at the time...no prior pregnancies, surgeries, etc), and my doctors thought that was why I was having a constant urge. Well, fast forward and here I am diagnosed with IC. Also similar to your story is the fact that when I was pregnant, I passed what we all thought were kidney stones about twice a week, except I always passed a lot of tissue at the same time...this went on literally for forty weeks straight, and stopped right after I had the baby. However, every single "stone" I had sampled never turned up to be a stone, but rather "cellular material". My bloodwork was always fine, and my kidneys upon ultrasound were always fine. So now my doctor believes that what I was actually passing was my bladder lining.

Anyways, just wanted to let you know that I know exactly how you feel (literally). I'm pregnant again, and not doing well, but i'm starting instillations soon and praying for remission in my second trimester, since I now know what I should not be eating and that I definitely cannot take vitamins like I did with my last pregnancy (which by the way, I think the vitamins are what kicked my IC into full gear). Thankfully with this pregnancy, I have yet to pass anymore material. I hope you find a treatment that works for you! Good luck with your potassium test.

[Kaseye]

statesboro- I didn't mean to say I expected people who were dx with IC to be happy about it- I meant that before I knew about it, it sounded easier to deal with than prolapse- something you can fix with a pill vs surgery, ykwim? Now that I knwo all the stuff that goes along with it, and that it isn't like ti is the kind of thing that you can "fix" forever with one round of a treatment, but a life-long issue. And I am still kind of glad it is probably this vs the prolapse, b/c then there is hope for my sex life! ;)

ellenjb- I sometimes have "floaties" (I am assuming tissue) too- not very often, more often just sediment-looking stuff floating in there. I definitely had something going on in my kidneys- during ultrasound, my left ureter was completely blocked, and I had zero output, and my kidney was jsut getting more and more swollen. It was the absolute worst pain I have ever felt in my life. So since then, I just thought that maybe my kidneys were still trying to make more grit in there or something.

I have urgency, and if I am drinking fluids like I should, frequency too. (It is hard for me to drink still sometimes after pgcy, it isn't unusual for me to only drink 12-20 oz, which I am trying to remedy.)

I also have this weird feeling that it is hard to describe, like I can feel my urethra- from the end to a couple inches up. It is sometimes painful, but just as often it is annoying and not really what I would consider painful.

My bladder itself is pretty sensitive. When I went to the OB and she was doing the pelvic exam seeing where the pain was, I almost jumped off of the table when she touched the top wall where your bladder rests against. She tells me, oh that is your bladder, and I am thinking, I don't CARE what it is, jsut stop!

For anyone who has had both the potassium sensitivity test and the cystoscopy- is the potassium one as bad as the scope? I had the scope when I was pg with my #2 (which was almost 6 yrs ago), due to hematuria. I was dx with hydronephrosis after a kidney u/s and with the scope he said that I had lots of sediment in there then coming from my kidneys which weren't emptying well b/c of the pressure of the baby against them.

[Kaseye]

updated first post