New Here- Just Diagnosed

[IC SARAH-CPP]

Hi All,
My name is Sarah and I am a 23 year old female. After suffering from extreme pelvic pain for four years I have been recently given a "99% sure" diagnosis of IC. I am having a cystoscopy with hydrodistention done in 2 weeks but my uro said during me regular cysto I showed every sign of IC. I have been keeping a urinary diary for three months and I usually pee about 35-40 times a day. I only get up about 3 times at night now because I take Amitritiline at night that really zonks me out bad. I have had these problems for so long now, I cant even remember what it is like to be normal.
I am married and my hubby is so wonderful. He is very understanding about the IC, however, the thing he isn't understanding about is my need to take narcotics on a daily basis. I don't take alot but Ineed them to at least make it to work and not go crazy with the pain. He always tells me to "take them when I need them" like I take them for fun. Grr, makes me mad. Other than that he is great. We are able to still have intercourse, but it is really painful for me.
I am struggling to cope with this diagnosis and knowing there is no cure for what I have. How do you all manage?? How do you cope with the pain of IC?? And the judgment that others pass on you?? I am having a hard time with all of these things.
I look forward to getting to know you all better.
Love Sarah

[ICNDonna]

:welcome: I'm very glad you found us. It looks like you're on the right track in getting a definite diagnosis. Somehow, it's always easier to deal with a problem if we know what the problem is.

There are some things you can do that might help. I suggest you read the information in the Patient Handbook at http://www.ic-network.com/handbook and put yourself on an IC diet right now. Some find that single step helps a great deal with symptoms.

Hopefully you will be among those who benefit from hydrodistention. I am and it helps enough that I rarely need pain medications.

I have had diagnosed IC for thirty years now and I promise you that there is life with IC. It may take a while to find exactly which treatments work best and which foods and drinks are a problem, but most of us do --- and most of us feel good most of the time. As you read the boards, remember that for every individual posting here because they are in pain, there are literally hundreds out there with IC who are not posting because they feel good and do not need the support of the boards.

Sending warm healing thoughts,
Donna

[Dixiefireball]

Donna gave you some great advice some thing you might try is the i.c diet heating pad or ice one tsp of baking soda to an eight oz. glass of water. to calm down a flare.
I wish you the best please keep us updated on how you are.
your never alone.
Rhonda

[Queensweater]

Hi Sarah! :welcome:
I'm glad you found us. Everybody here is wonderful with great suggestions and even better support. :)
I also take Amitriptyline (75mg). Even though I still have constant pain, it has been my wonder drug. No pain killers worked for me, but with the Amitriptyline I've been able to get me out of bed and back to work on a limited schedule.
Good luck to you with your cystoscopy in a couple of weeks. We're all here for you!
Heather

[Sarojini]

I take narcotics on a daily basis just to be functional -- MS-Contin (extended release morphine) 3x a day, with Percocet 7.5 for "breakthrough" pain. I don't always need to take the Percocet, but I am glad it it is here for days when the pain is just crazy despite the MS-Contin. I didn't always need this; my IC began with extreme frequency and urgency and then slowly the pain was added to the mix as things seemed to get worse over a period of six months. However, at first my husband was very understanding, but lately he keeps wanting me off the narcotics; however, my urologist says I am not ready to be off my pain medication as I still have lots of inflammation and lots of pain and may well be developing a Hunner's ulcer in one place in my bladder.

I trust her very much, as she is part of a pain clinic in addition to a urology practice, and I know that when it is time, she will help me get off the narcotics in a safe and proper way -- until then, I simply have her explain to my husband what is going on and what my life would be like without these meds. He seems to trust and listen to her too, so it seems that talking to her occasionally calms his fears and gives him a forum to air all of HIS questions and concerns. I think sometimes we forget that husbands have questions and concerns too, so I think it's important for them to attend doctor appointments with us when possible, and to read literature about IC (books, articles printed from this site, and the like) to help soothe their fears and answer their questions.

Good luck with your cysto/hydro in a few weeks... may everything go smoothly for you!!

:grouphug:

[stacey79]

Hey, there and welcome! Everyone has such good advice for you. There really is hope with this stinky disease and it really will get better. Some of us even go years in a sort of remission, but at least most of us are able to get our symptoms under control enough to live regular lives. It will get better!

As far as your hubby goes, I would suggest having him read material like on this Web site. THough I've had bladder problems my whole life, my recent "official" IC diangosis came at age 23 (two years ago). My husband has been supportive, but I know he gets frustrated sometimes when I'm not feeling well. One of the best things in helping him understand me was having him do some of his own research and reading. I think men, especially, feel bad when they don't have a solution for problems. I know for my husband it has helped him in knowing what is going on with me and participating in my decisions for medicine as well as self-treatment stuff like diet.

Hang in there! It will get better and this Web site and these boards will be a tremendous help for you! We are always here! :grouphug: :grouphug: :grouphug:

[traceann]

I just wanted to add my :welcome: to the fray! Sure is a frustrating disease to deal with, that's for sure. I was just diagnosed about 2 months ago, and that was the worst, so much pain in the beginning. I went on the diet right then, and I was given Emiron, in addition the Ditropan I was already on for urethral spasms (sneaky little things were the first "pain" beginnings for me). Took a couple of weeks for my bladder to calm down, I know it was the diet that has been the biggest help, as the elmiron can take 3-6 months (if not longer) to feel the effectiveness of it. I also added in Vistaril (antihistamine generic name hydroxyzine), at my request after reading about it here on this site.

I have learned so many valuable tips on these boards for coping strategies, it's not even funny. The majority of my IC Toolkit, has been info I've gotten from everyone here. And they all help and work to keep me feeling pretty darned good 90% of the time. I am a 100% better than I was back in Nov, now granted that's not great, cause it was pretty awful, but I will take how I feel now over that anyday!

Here's some of the home remedies I use: (all learned here!)
Thermacare heat patches, when I need to be wireless, for sleep, travel etc.
My heating pad (I love my heating pad)
Uristat or AZO Standard (over the counter Pyridium-- make you pee orange, but numb the plumbing up!)
Frozen water bottles when my urethra wants cold (I keep a cold pack in the freezer too)
tsp of baking soda in water (for bladder/urethra burning)
a few Tums (for bladder/urethra burn)
I take 800mg Motrin (OTC) as needed for the pain everything else won't take care of ( I do have one Rx of Ultram for emergencies, but most times everything else works for me and I haven't had to reach for them, yet...)

I think that's it, you can see that in just a couple months I have found sooo much here to help!

Yeah, my boyfriend is normally Mr. Wonderful, but just recently he became Mr.Hyde (and on New Year's Eve too! ACK!!! :cussing: ), in frustration with IC. Thank goodness I am like a dog with a bone and wouldn't let him just clam up and be a big fat butthead to me. Like it's my fault!! I discovered he too was frustrated with all the "new" ways of living life right now with it. I reminded him that every day I seem to be a bit better and I am trying really hard to get my life back as close as to what it was before as I can. He needed to vent apparently (I only wish his venting would present that way instead of hurting my feelings in the beginning of his vent!!!). Then he was fine and back on board. Going overboard the next day to make sure I had what I needed for the football game gathering we were going to..men, they are amazing how then can go from "butthead" to "normal" in like mere moments!! LMAO!!!

Anyway, my hello turned into an essay, I apologize, it's just I can't say enough about this place and all I have learned, as I know you will too!!
Take Care and again, Welcome!!!!!!

Hugs, :grouphug:
Tracey

[hazellin31]

Hi, I just wanted to add my :welcome: to the others. I'm also a 23 year old and am relatively new to this. While I can't give you as much advice as the others, I just thought I would post this because we are the same age! I can tell you that this site has been amazing. Everytime I come here I feel a little better and although it is all very very overwhelming right now, it will get better. I'm just learning how many treatments there are for IC, ones that I never even know existed before this site. Like I'm doing, my advice would be to research, research, and research. Many of the doctors out there do not have a lot of experience in dealing with IC so educate yourself! That way you can take all the necessary steps to help yourself feel better. I went three years without seeing a doctor and just dealing with my symptoms because I had no idea what to do, where to start, or how to help myself. I'm now in the process of turning that all around. I'm glad you decided to post, I know it was the best decision I've ever made. Feel free to PM me any time if you want to talk!

Hugs!!! :grouphug: