New ICer wondering what next... - Interstitial Cystitis Network Support Forum

ICtampa · 11-24-2009, 05:12 AM

Hello everyone!http://www.ic-network.org/forum/images/smilies/help.gif

I have been reading this blog for about a month speculating that I have IC after multiple trips to the urologist. Since my last four cultures have shown no bacteria, just leukocytes and blood, my urologist is confident I have IC. I think I have had this for a few years and have been constantly treated with antibiotics for UTI's...ugh!

Anyways, I am very lucky that my urologist is also my next door nieghbor, an awesome guy who I have nannied for. He started me on Elmiron and Hydroxyzine a few days ago. I take the hydo once in the morning and once before bed and the Elimiron two in the morning and one before bed.

I also got married this past Friday, so my boyfriend of five years and I could stay together in the states instead of him being deported to canada. THANK GOD he is here for support right now

I guess I'm just frustrated because it seems I am in pain everyday. I know Elmiron takes time and I'm not giving up. But I am not a pill person and would love to learn about other treatments(PT for pelvic pain, pain treatments, instills..etc). I seem to have more pelvic issues than bladder issues from what I've been reading about the kind of pain I have...

I'm trying to be positive though that everything will work out

I'm going to try and get the recommended books on this site to read so I can really alter my diet(I love fruits and not eating any is killing me)...until I can successfully do that though..this is just a lot to digest.

I'm 23, newly married, newly diagnosed, trying to find a job while flaring everyday and wanting relief.

I know so many of you are going through this and I really really feel for everyong that feels this type of pain NO ONE UNDERSTANDS http://www.ic-network.org/forum/imag...s/rolleyes.gif

just needed to vent, xoxoxo from a fellow IC sufferer in Tampa

Diamic65 · 11-24-2009, 05:25 AM

First I want to CONGRATS on your wedding. I wish my URO lived next door to me. Its hard trying to remember to take your meds everyday. I was not a pill person when I first started to get sick with IC.. did not know what was going on. Just the thought of taking pills would make me gag

You can try the Instills and see if it works for you. As for taking your medication everyday you can get a pill reminder from your drug store. My husband bought me one when I was starting to become ill and it helped. I wish you lots of luck and this is the best place to be. Welcome to the ICN

DIAMIC65

dottiepark · 11-24-2009, 05:29 AM

Hi Tampa...it can take several months for the Elmiron to kick in but it works very well for me. I have also taken hydroxyzine and that helps, too, especially with sleeping. You might ask your uro for something like Urelle, a bladder analgesic. he diet helps, even though it is tough to follow. What I wouldn't give for a glass of ice-cold tomato juice or a cantaloupe filled with strawberries! Another thing you might want to do is check the pH of your water...bottled AND tap. PT is a godsend if you can get it.

ICtampa · 11-24-2009, 05:40 AM

Thanks for the quick replies!!

I do realize the Elmiron will help in a slow way, I'm just hoping it does actually help at some point!

I am going to give the diet a shot. I've been living with a heating pad on me for it least 5 or 6 hours a day just to get through it...I am sleeping at night, probably because of the hydro which I am really thankful for.

I forgot to mention I am taking Prosed three times a day. However, I don't think this has helped with the frequency or the pain. When I pee I feel pain when it starts and right when I'm ending and I BURN everywhere down there for about ten minutes after. Sometimes longer...I just don't know what to expect! I have constant cramping pain very low on my abdomen, almost like PMS pain but times 100.

It's hard waking up every morning wondering if you will feel okay or hurt so bad I can't walk. While researching online and reading what Jill has written on here I don't think I should have to live with that kind of intense pain. I just want to find a pain management program for myself...like ten days ago lol.

I'm just trying to take this a day at a time and be thankful I know what's actually wrong with me! Even if everyone else STILL tries to force cranberry juice on me NO THANKS! haha

thanks again, xoxox

maryla · 11-24-2009, 06:23 AM

Congrats on your marriage! I was married 2 months before my dreaded d'x of IC.

And I just want to say welcome. I'm sorry you have IC, but am so grateful you found a correct d'x and are getting a treatment protocol lined up!! OH you are soooooooo blessed to be living next door to your uro!!

You can look into pain med dr and maybe rescue instills.

hugs and blessings

amylynn75 · 11-24-2009, 08:00 PM

Hi ICTampa,

Yes, congrats on your marriage. I too am recently diagnosed and can relate to what you are going through. I also feel like a lot of my symptoms are from my pelvic floor and less from my bladder (although I get those as well). I found that when I was pushing to try to get the urine out I was causing my pelvic floor muscles to tense and spasm. I started physical therapy and after 5 visits I noticed a big improvement in my pfd. If your insurance covers PT I highly recommend it. And you must go to a PT that specializes in women's health and pelvic floor issues/IC. When I asked my PT how many womens she sees for female issues she said she has 14 appts every day and there are 6 therapist trained in this area. I was shocked! If you are going to go for PT you need to keep an open mind. Some of the treatments are external (external organ manipulation, biofeedback, etc) but some work is internal. That is hard for some people to get comfortable with. But for me it has made a big difference. I wish you all the best in your recovery and your new life with your husband.

ICtampa · 11-25-2009, 05:22 AM

Thank you mary and amylynn!

I am so happy to hear that your pain has gotten better through PT. I do think I am going to look into that sooner rather than later and see if doing that in unison with the elmiron and such will help! I have a VERY OPEN mind, I will do anything that will make this pain go away!!

My pain has recently mostly been lower abdominal cramping, tenderness, aching that flares around my sides to my lower back. It makes me feel like I injured my back but I haven't....is this somewhat similar to your pain? I use a heating pad but it isn't enough

I'm used to doing yoga 4 days a week but with this pain I can't go. I would love to get back into that though, I really think it would help!

thanks for your advice!!! I'll keep you posted if I start PT!

xo, best, kate

amylynn75 · 11-25-2009, 08:53 AM

Hi Kate,

I'm with you on the exercise thing. I would go to the gym 5 days a week and now I can't go. I hope it is temporary; i'm running out of clothes that fit! I was looking on this site under the ICN shop and came across a pilates video for people with IC. I was considering buying it. I need to do something to stay active, but it might be a bit too soon for that. I noticed during my physical therapy they would give me a few exercises and those would exacerbate my symptoms for a few days afterwards. That said I think there are some pilates/yoga type exercises you should be able to do once you get your symptoms under control.

Amy