finally labeled!!

[lhedrick]

Hello fellow IC survivors!

Finally an answer to all my symptoms! I was just diagnosed Wednesday the 28th. It has been a relief to know what the problem is and after viewing all the wonderful information - it all makes since! It's me, without a doubt! Now I'm getting depressed.... Without a cure or a quick fix it seems like a long haul of continual suffering and discomfort. My urologist is suggesting the "cocktail" or the "hydrodistension" I am not sure which one to do. I like the fact that the hydrodistension may offer more insight as to what kind of shape my bladder is in.

My story has been reaccurring uti's over the past 3 to 4 years. In 2001 I had a full hysterectomy due a cist that happened to be the mere size of a football. I am 5'8" and 150lbs.. I guess I carried it well and was not having any pain and normal periods! I was however, having contant uti's etc. I also had the onset of endemetrosis (spelling?) I was 39 then - so now at 41 another bomb - IC!!!! Last fall I really had some discomfort that kept me off work for a few days. I felt like my insides were dropping out due to the pressure down below. During that week I was driving my car on a country road and the drive put me in tears. Sex hurts, wine irritates and flares known as the IC symptoms, special diets etc.?!!!!!

[Sarojini]

:hi: and :welcome:

I'm glad you found us... also glad you found out what is wrong. Unfortunately, IC is definitely a "long haul" kind of thing. It's good that you have a doctor who seems to want to help you... that will be a big help in the coming months as you search for the treatments that work for you!

I know how annoying it is that wine irritates the bladder... my hubby and I used to love going to wineries and wine tastings, but we've really had to cut back on that whole thing since my diagnosis...

Anyway, you've found a great group of people... you'll get lots of support here!!

:) :)

[SharonA]

Hello and :welcome:

I am so glad you found us. You will find a lot of caring and supportive people here.

Yes, I know how upsetting the dx can be. I just want you to know that there is life with IC. I live a pretty normal life because I found treatments that work for me. It took some time but, I am here to tell you that there is hope. :thumbsup:

[Katrina]

:welcome: :welcome: :welcome:

I should definatly not comment on labels....I have gained so many ....and I know it sucks...I am sorry.

Anyway welcome to this great family....it can help you through anything.

:hi: Best Wishes

[grace 2]

HI:hi: and:welcome: I can relate to how you feel right now. I bet we all can:( I too had a hysterectomy, mine was because of endometriosis. I was diagnosed with IC in Jan. this year. I did the cysto/hydro and am now doing instillations. I'm on elmeron too. Been trying different anti-hystamines, but they all have side effects that don't agree with me. It is a long road for a lot of us. My symptoms started with the pressure you mentioned. That has gone away for now. Some of my symptoms are better, but I am a long way from back to my old self. The biggest thing that has helped me through , besides God and the support of others, is to take this one day at a time. Thinking of the big picture and all the unknowns can get the anxiety going. I read somewhere that 50% of IC sufferers go into remission(of varying lenghths of time) for no apparent reason.:) You never know what tomorrow will bring! I pray for a quick road to recovery for you! Grace

[ICNDonna]

I think my worst time with IC was before I was diagnosed. Once I knew what I was dealing with, I could begin treatments.

It may take a while to find which treatment options work best for you and which foods and drinks to avoid, but most of us do get there --- and most of us feel good most of the time.

If you haven't already, you'll want to read the information in the Patient Handbook at http://www.ic-network.com/handbook/

Warm hugs,
Donna

[lhedrick]

Thank you so much for all the support. I have never been involved with any time of chat rooms etc. As I read the replies I almost wanted to cry...

So tell me about the hydro treatment vs. instillations and what has worked for you guys. I guess it is ok to try one and go to the next.
I have noticed my stomach seems to really have bulged over the last month or so. I measured a 34" on March 8th on my waistline vs. 36" to 37" (give or take assumming I'm measuring as I did last time) is this normal? I have also had alot of stomach pain or aching yesterday and today. I really haven't had much of this before - maybe it's just nerves or something.
I do go see my urologist Monday for some pain relieve - any suggestions would be great!
Thank you!! Lisa

[vm]

Have you discussed oral treatments at all or are you more comfortable with instills? I know some people do oral meds AND instills until the oral meds kick in.

[Dixiefireball]

Hi and welcome to the icn. I'm sorry you have had such a hard time but the good thing is you know what your dealing with now and can get treatments I hope you find one that works best for you soon.
it took me a while to find something that would help me but I have found something Now that helps which is the dmso.
please keep us updated on how you are remember we do care and we are here for you. We do understand.
:grouphug:
sending you hugs and prayers
Rhonda:kiss: