I don't know what to do....

[Jinny Jean]

Ok so I have not been officially diagnosed yet but I am pretty postitive that IC is what is going on.. I am though starting to get a little fed up with not knowing for absolute sure if I have an IC diagnosis. I have always wanted to steer clear of having a hydro and I am SO SCARED of having my bladder stretched. I dont want to make it worse....

I feel so guilty alot of the time thinking that somehow I could have prevented this from happening since it actually started with an STI... then a yeast infection from the antibiotics and now this. I never wanted to tell anyone that before about the STI, but I feel now that I can... Im just so tired .. and I just want my life back... I am sure it is the same way with others thinking god if only I didnt have that baldder infection or get in this accident or swim in this pool, I wouldnt have IC.. It makes me really sad that this happend to me. and I blame myself every day.. even though there is nothing I can do anymore.

I feel like some days its gonna be ok! This whole last week has been great! and then the hormones start to change and I ovulate and everything goes to hell after that... I am on elmiron and I want it to work,,, and sometimes I think it is but I can never really be sure... especially when I start to feel bad again.

My dr had ordered new tests... and he is sending me for a second opinion to another urologist who knows more about IC. I try and stay positive and I read all the success stories and tell myself ITS GONNA BE OK... but you know that feeling when your doing so good and then WHAM you feel like hell and there is nothing you can do.... :mad..

I did start to notice long before that my bladder was being weired before all this happend, I started to get pressure and a raw feeling down there...but never frequency. I keep thinking that if this didnt happen some other thing would have triggered it anyways, but I can never be sure... its all so embarressing. It makes me wonder if I really do have some of the bacteria from the infection still in my body or mycoplasma because of the infection or what....no one can find anything...

Anyways I just wanted to say thank you all for the support I get on here, it means so much to me. I think when I see the next uro I will have another cytoscopy maby he will make me feel comfortable enough to have the hydro I dont know.

Jenn

[ICNDonna]

I believe that there isn't anything either you or I could have done which would have prevented us from getting IC. I think mine would have eventually surfaced, but that a major abdominal surgery triggered the symptoms --- others have reported that they had an infection immediately prior to IC symptoms.

I hope you feel better very soon.

Warm hugs,
Donna

[Jinny Jean]

Hey, thanks Donna I have been feeling pretty well for the last few days! and I have been doing so much! I hate when I cant do things because I feel bad. I have been careful witht the diet so I am sure thats helping but I ate seafood chowder today... at a restaraunt and that may have contributed to the crapiness now... Just took some baking powder PH tabs and drank a TON of water... blended some carrots and a pear... and drank it. I hope I feel better tommrow because I have to work!! UGH.

I do think that the infection triggered it for me too.... something happend, and a normal bladder would have no problems dealing with antibiotics and an infection... a healthy bladder.... I think mine was just overloaded with yeast, and then the antibiotics and the infection on top just broke the straw that held it all together...

I ahve nothing else wrong.. no IBS no fibromyalgia, ... my symptoms are so varied...I guess I just need someone that really knows what is going on... Im curious as to what these urine tests will come back with something abnormal...

[wizbe]

Hi Jinny Jean:

I just wanted to re-iterate what Donna has already said - there isn't anything that either one of us could have done to prevent us from getting IC. It is not your fault. Our bodies just have sensitive bladders. I think my case of IC started with a physical trauma that happened to me. That's when the symptoms started - pain first, then frequency, then urgency for me.

I know it is hard to look ahead - I remember when I was first diagnosed, I never thought I would see the light at the end of the tunnel. Eventually it did come. I have done a lot of research, a lot of diet changing, a lot of changing medications, a lot of travelling to Vancouver for appointments and yes, it sometimes takes all of my energy to get through my day of work with chronic pain - but there is a light. You will find it!

About the hydro - I would really encourage you to do it. I was going to the washroom 40 times a day or more at my worse... and then I did bladder instillation after instillation - 30 or more in 3 months which made it go to about 25 times a day - then I had the hydro done (I know it does not work for everyone) and I remember about five weeks after driving in Vancouver and thinking to myself - I haven't peed in 3 hours - WOW! After the hydro my frequency went to about 15 times a day. Of course I have my bad days where it is in the 30s... but then I did the research of managing flares and have discovered some wonderful things to do.

I will tell you this my first hydro was not a success and I believe it was because my first urologist did not know about IC and instead of leaving the water in me to allow the bladder to continue stretching, the urologist drained it all out and I suffered from it... I was peeing every 20 minutes sometimes 8 times in an hour and a half. But the second hydro I did was successful - this doctor is an ic specialist. It has been so hopeful. He has helped me a lot. The embarrassment has subsided thankfully through his help. So I would really encourage you. I'm having my third one in a year and a half and I am very hopeful that it will help me get out of this debilitating flare that I am in now (I haven't worked in a week - except for 4 hours today). But I have also learned that when my bladder says OUCH - that I need to rest it because if I keep going - it will never stop and I will literally be a walking zombie and ineffective in my work here.

Just one more pointer of help for you -
One thing I learned was to drink water. When I was first diagnosed and going upward to 40x a day - I never hardly drank anything and that made everything worse. So drink water - it will help dilute your urine.

Know of my prayers for you - and I am so glad that you are feeling encouraged from this site. This site really helps me too. Now I'm going to read and hopefully, I will be able to sit down long enough to relax playing some piano.

Blessings,
Wizbe

[kadi]

Hi Jinny Jean,
I totally understand your worries about having a cysto/hydro done. Some patients though (I've seen stats up to 40%) find the stretching actually helps their bladder. I wasn't one of them (I was so disappointed!), but I'm still glad I had it done because the pictures of my bladder lining were good to have.

I'm really sensitive to onion powder, so most commercial soups I can't eat without a flare. At first it was a drag, but I've learned to make my own broth in a crockpot & make my own soup and I really like it now.

I hope you feel better tonight & tomorrow is a better day!
Kadi

PS - You look really pretty in your dress - just perfect for you!

[amy09]

Hey!
I'm close to your age (just turned 23) and this nightmare started in January for me so I understand the frustration. I'm still in the "trying to figure it all out" stage. I can totally relate to wishing you'd never gotten an infection or did this or that.. whatever you think caused your IC. Mine started after a UTI that I'm sure was due to sex.. so I think about that a lot.. like I should've just not done anything that night. But who knows, it may have happened eventually anyway from something else at some other time in my life. I just try really hard to stay positive and hope that like others on here say, that in time I'll find the right treatments and things will calm down. I know how hard it is to have this in your 20s. I feel like I can't be as vibrant and youthful as my friends. I'm also a military girlfriend (wife in a couple years) and that adds a ton of stress.. plus my mom just died last month. I know stress is a huge trigger for me. So anyway, if you ever want someone else to talk/relate to just send me a PM or let me know if you have facebook or whatever. Keep hangin in there!

P.S.- I love the graduation pic, very beautiful!

[Jinny Jean]

Hey!
I'm close to your age (just turned 23) and this nightmare started in January for me so I understand the frustration. I'm still in the "trying to figure it all out" stage. I can totally relate to wishing you'd never gotten an infection or did this or that.. whatever you think caused your IC. Mine started after a UTI that I'm sure was due to sex.. so I think about that a lot.. like I should've just not done anything that night. But who knows, it may have happened eventually anyway from something else at some other time in my life. I just try really hard to stay positive and hope that like others on here say, that in time I'll find the right treatments and things will calm down. I know how hard it is to have this in your 20s. I feel like I can't be as vibrant and youthful as my friends. I'm also a military girlfriend (wife in a couple years) and that adds a ton of stress.. plus my mom just died last month. I know stress is a huge trigger for me. So anyway, if you ever want someone else to talk/relate to just send me a PM or let me know if you have facebook or whatever. Keep hangin in there!

P.S.- I love the graduation pic, very beautiful!

Hey Thank you!

Im o glad I have people to talk to about this mess.... My parents have NO clue, although my bf does his best to understand, and latley he has been doing a really good job.

This morning and last night have been horrible. I cant stop peeing!!! I just took a pyridium and an antihistamine so I hope it helps.

I think about wheter or not I caused this alllll the time, and it kills me .. if there was only something I did different, would this have happend. I blame myself alot, although I know that wont help. Im trying to get passed that. I have an oppointment booked for Aug 23rd , just heard from the specialist today! So I am really hoping he can help me out.

I slept like 3 hours last night and I am soo tired. Trying to go back to bed but I get up every 20 min to pee right now. I tried to fix this dicharge thing I have going on lol and my dr told me to insert a boric acid capsul in to your vagina at night. UGH ...it didnt burn or anything! but I just havent been able to stop peeing. I tried douching it all out too which helped a little but not enough.

Anyways, I appreciate your messege, I do have face book and your welcome to add me! Just look for Jennifer Ann Blenkarn and I live in British Columbia Canada

Jenn