Newly Diagnosed...Here is My Story...

[Confuzzled]

Hi All. Let me first start by saying that I've gone through a lot of these message boards, and ya'll seem like a great group of people :)

My name is Heather. I'm 23 years old, just got married in July(the 29th) and got diagnosed w/ my IC yesterday(Nov. 2nd). Let me give you alil back story tho...

In January of this year, I was diagnosed with cervical cancer. My first oncologist wanted to treat the cancer very aggressively, and do a hysterectomy right away. I wasn't so happy with that plan, seeing as I was 22 at the time, getting ready to get married, and have yet to have children. So, my family and I saw it fit to go and find a different oncologist. Finally, I found one that we were happy with. After two LEEP procedures and 2 rounds of radiation(hooray for not losing my hair!), i was put into remission. :smile tee

I had previously been on birth-control, and once the radiation was done, that quickly came to a halt. My oncologist advised me to have a hysterectomy in about two years, so that I am at ease with the cancer....get rid of the problem, get rid of the cancer. So, i went off the birth-control, and we have been trying for a bouncing baby GIRL since then....this was in May.

Everything was going fine, when September hit. I didnt have a period in September, or October, and the pregnancy test came back negative. So, back the oncologist I went....fairly certain that the cancer was back. However, to my surprise, it's not. I was explaining to him that I was getting what felt like severe menstural cramps, but no period, and that I pee'd all the time. I had been the butt of many jokes between my family and friends, about how much I used the restroom. I learned to make light of the situation, and just laugh about it too. I thought maybe I had overactive bladder...or that I was just crazy.

So when no cancer showed up, my oncologist referred me to the uro. They did a bunch of tests, and ended with the KCL. OMG, if I never have to go through that again...I think I'd take radiation over that! It was also the first time I've ever had a cath....so, yea, not fun. So, needless to say, positive for IC. I have Elmiron 3 times a day for the next 6 months. The uro also perscribed me Urrelle for pain. Also, I have to go back to the uro once a week for the next 6 weeks to get instills of heprin, lidocain, and sodium bicarbonate. Then, I guess we go from there.

I'm really upset about all this...and I'm really not sure why. I know it's a big deal, but I don't think it really compares to my cancer. Maybe because I know I beat the cancer, and there really is no "beating" this, just managing it. I find myself wishing that it was my cancer back, because I know how to feel with that...the things to do, things of that nature. I started watching my food intake today...this number one thing I absolutely dread about all this. I'm a food junkie....food is my medicine, so the mere fact that I can't use it, is painfully enough for me. I was joking with the doctor telling her that diagnosing me with this was just a nice way of her telling me that I was fat and need to go on a diet.

All jokes aside, this is serious stuff, and I hate it. I don't know how this is going to effect my chances of conceiving, I didn't really get that far with the uro. I guess that's a question for next week when I go back....

Till next time, thanks for reading my story. I hope to get to know ya'll well :) Everyone have a great weekend.

[meme]

I'm so sorry you're feeling bad. IC is so confusing. How are you're flares? Are you still having one? Hopefully starting the diet will help you feel better soon. I've been on Elmiron for the past six months and it with the diet has really helped cut back on my flares. Hope you're feeling better soon!

[Confuzzled]

Yes, I'm still having a flare. It comes and goes...gets bad for a couple hours, then subsides. I tend to rub my pelvic area when I'm in pain, I guess it's just a reaction b/c thats what I do when I get cramps lol. I was supposed to go out with my husband and some friends tonite but decided to take the nite for me. Lounging around, in my PJ's, not doing anything. I think it's helping :)

[meme]

Sounds good. Have you tried a heating pad an your abdomen for the pain? I also rub and put pressure on my pelvis, it seems to help. Good luck.

[vivig14]

hi,

not familiar with the KCL test. a few thoughts...i have heard people that have had radiation tx can get radiation cystitis, though. i have always wondered if your bladder was irritated for that reason if ur pelvic floor muscles might get pulled into the equation the same way they do with IC. they get pulled up b/c they are trying to "turn off" the sensation of having to pee, but when the problem is gone the muscles are still screwed up. if that were true, your muscles would tense up (and possibly cause that pelvic pain you are feeling), and you could chronically feel like you have to pee(hence urgency and frequency). the best tx for this muscular dysfunction is physical therapy, and it is safe and works to correct the problem. you've got a ton to look forward to and the treatment for IC is so much better and well known than ten years ago, trust me! my advice check out the best uro or physical therapist (just like you did for your cancer MD), and then get a full assessment on the state of your pelvic floor and treatment options for that as well as your IC.

wishing you the best.

[Confuzzled]

Thanks so much for you advise! I can't begin to number the things I've read about the cancer, but never really thought about that being an option for why I feel like I do. Hmm...that's a definate MUST to look into. Thanks again! :)

[~*~Christine~*~]

:welcome:
I'm so sorry you have had to go through a cancer AND IC diagnoses, that's just mind boggling : (

In terms of IC affecting your chances of conceiving, nope, it does not. The only reason why it might affect your chances is if you find sex too painful, but that's it.
There is a section on this forum for those trying for pregnancy here http://www.ic-network.com/forum/forumdisplay.php?f=43

[ICNDonna]

I'm so sorry you've had so much to face with having both cancer and IC. It does sound like you have good doctors and that makes a huge difference.

Elmiron can take up to six months or longer to become effective, but usually it's taken as long as it's needed --- some who post regularly here have taken it for years.

I hope you feel better very soon.

Donna