Scared

[Jinny Jean]

Hi everyone, I have not officially been diagnosed yet, but I am pretty sure that I do have IC. In my heart I never wanted to believe it, and I have been trying out everything to make this discomfort go away. I was given too many anti biotics for an infection, and this was the result afterwards.... I think the antibiotics must have just stripped everything that was good in my body and now I am suffering. I had to come home from University about a week after the UTI symptoms started (no pain) because I could not handle it anymore.

I was beginning to retain urine and I couldnt pee on my own. After going over and over tot he dr and ER where my university was, (having EVERY test under the sun, all negative) I was given an anti depressent ( needless to say I was offended for sure, but I know now that they can help with nerve pain etc).. I took the first dose of thi anti depressent and BOOM couldnt pe AT ALL... Anyways my parents flew me home and I was admitted as soon as I landed to the hospital in my area because I could NOT physically pee on my own. TERRIFYING. No one could do ANYTHING for me, and I even had a uro look in my bladder (cytoscope) but without the distention, he also told me he dint think I had IC (which I had researched previously before this prodedure).... Everyone told me that I would be fine, just give it time... so I believed them, but I also started to do research....

What I did first was took anti fungals and went on the anti candida diet to see if it might just be yeast affecting my bladder. This DID help, but I was still having trouble with frequency and pressure etc. So Next I thougt, ok maby I will go off of my pill as I was noticing that everytime I would start a new pack my bladder would HATE me for about 7 days, and then, just like that the discomfort would subside (not completley but managable) on the week and a half before my period. My periods were also fine as well. I noticed that when I got off my pill I actually felt really good for about a week, and then ( not sure what I was thinking) but I took a CRANBERRY suppliment, thinking in some way it might help. HUGE mistake, I was in a "flare" for 3 days and I am slowly coming out of it now. I have NO real pain. I have some twingy discomfort sometimes and it always feels like I have to go when I don't. Sometims I do get releife though ( I was having reliefe before this cranberry pill incident)...where I am able to pee and then feel normal for about 40 min to an hour before I have to go again. I am terrified that I will eventually have pain, and I am so scared for my future right now, I am only 24!!!! I have a prescription for Elmiron, and I have taken three pills.... and stopped... I am still leery about this med because I dont want to lose my hair... I would rather do everything naturally if I can, and diet has seemed to help the most....I will try Elmron again if I cant get my symptoms under control with diet...

Right now I have to pee and I just went about 15 min ago.... mind you I have been drinking alot. Usually when I DO go and im not having discomfort I can hold 300 to 400 ml in my bladder before I go.............I measure it everytime. Latley I have been taking these bicarbinate pills that help rebalance the PH. I try and keep my urine alkaline, but right now it is VERY acidic.... probably why I am having discomfort...

I really want to be a mom, and I am scared that I will never be able to feel better, or have a family.....

I am scared of a diagnosis because that really means this is real.... I am also scared that a hydro will make me worse than I am.


Please help...

[Engtch29]

So many other things...

Are you being tested in other ways?

Gynecological tests, ultrasounds, etc., uro-dynamics...

A doctor told me after performing the uro-dynamics test that she was sure I didn't have Overactive Bladder and she didn't think IC, but after feeling my vaginal muscles, she thinks I may have Pelvic Floor Dysfunction; I'm going for an evaluation this week. I'm hoping that this is what I have. I also still need to get a bladder biopsy if the therapy doesn't help, hoping this will diagnose IC or not!

Hang in there! I'm trying. BTW, I'm 29.

[Jinny Jean]

Yes, I have I have ultrasounds all gynecolgical testing CT scans etc. I have a uro dynamics teting in May, but really the last thing I want is someone poking around in my sore bladder... The Dr. felt around in my vagina but said there was nothing out of the ordinary that he could feel. I have no pain in my vagina either. I would like to check out Pelvic floor therapy and its on my list... Right now I am trying really hard to stick with diet alone. I want to take the elmiron, and I have been off and on, but not enough to see any results. I am having a hard time making up my mind though, I go back and forth all the time because I am i so much discomfort. I think I will try and stop taking the elmiron and jut focus on eliminating foods. I found ***** *******s website and I will be following her diet that is in stages. Initially when I found out all this I tried something similar and it seemed to help alot, and I think that is what got me to the place I was before I started to eat sugar again and things that I wasnt supposed to....

My mom really want me to focus on the diet alone, she is scared of the side affects that go along with Elmiron, I dont blame her... I have a drs appt on the 19 of April and I wil ask for a referral to a PT therapist then... What are your symptoms? Have you gone on the IC diet? The worst one I have has got to be a mild burning sensation as my blader fills.. sometimes I have pain twinges when i empty it, but not to bad, and the frequency, well that is just horrid.

SPeaking of wich I have to pee now... lol

[Jinny Jean]

Decision

Ok so I have decided that I AM going to stick with Elmiron for awhile to see how I react. and I am also going to follow a yeast free IC diet.. so NO SUGAR... ugh.

I figure I have nothing to lose, oh except my hair... bahaha.. thats not really that funny.

For people who have been on Elmiron or on it, can you please share your experiences?? I would love to have others input because I am TERRIFIED at this moment and really unsure. I would love to get to a managable level and be able to work again!

Thanks!

[ICNDonna]

First of all, only a very tiny percentage of people taking elmiron lose any hair. It can take six months or longer to become effective so giving it a short term trial probably won't help.

It's good that you are following an IC diet --- you'll find the latest food list at the link in my signature below.

Sending warm healing thoughts,
Donna

[meResque]

My experience with Elmiron: I can eat a whole lot more foods than I could 6 months ago, and... that's it. I have had no side effects. My hair is fine.

I am 29, and feel a million times better than I did at diagnosis. No, seriously... a million.

[nekura]

You could also try quercetin. You can order it online or get it at a supplement store. It supposedly works like Elmiron and is more herbal, but I'd stick with the Elmiron and do both.

[migdy]

Hi I am new here..today is my appt with my uro. After 6 years finally I will know!!! It will have a name !!! Last week had a cysto/hydro? and in serious pain now..he found ulcers and polyps. Also had my urethra opened up a bit as it was constricted. I still can't sit up straight. Before procedures he told me he was almost sure it was IC...I am scared, in constant pain, this burning and I fell like someone is cutting me with a knife!. Urinating every hour. I NEED help for my pain. I think he's against prescribing pain meds...I wonder if he really understnds the pain involved. Sorry, I just wanted to vent..I've been on this site reading all I can preparing for my appt. If someone is reading can you tell me if I have a right to ask for pain meds? I feel embarrassed about this...THanks to all that I read I feel a connection to you..someone understands!

[earthlady]

migdy- If you're in pain you have every right to ask for pain meds. I kept waiting for my drs. to offer me something for pain but a lot of them won't unless you bring it up. So now I just say "I need something for the pain." I don't take any pain meds right now because the bladder med I take does trick but with this condition it is always good to have something on hand.

[migdy]

Finally!! A diagnosis!!!

Hi! Thanks for getting back to me...Got back from the Uro and it' official. I was diagnosed with IC...gave me Elmiron, atarax and a newish pain med Nucynta (to take as needed). I am reading all about the diet and anxious to get started on my healing process. I understand the elmiron takes some time to work, but I feel better just knowing the uro understands me and after 6 long years I finally have a diagnosis! It's good to know that your treatment is working. and Again thank you so much for answering!! By the way I did exactly that....just asked and it was no big deal for him to prescribe the pain meds!

[Engtch29]

I have tried the diet and noticed that it doesn't really help or hinder me, so I try and watch, but I'm not dedicated to it.

My symptoms have been having the sensation that my bladder is never empty, and after about 2 hours, I can't take it anymore because the pressure and discomfort is so bad.

I've started taking Cystoprotek and I've been applying heat to my back and belly whenever I can, which seems to be helping some. I started my PT yesterday and am a bit sore today. My PT showed me that my legs were uneven, but after she worked the muscle right inside my pelvis, they became equal again--weird!

I think I may have some really tense and messed up muscles there from back problems...I don't know, so we'll see!

Are you feeling any better? I hope.

[migdy]

First day of treatment!

Hi Maria...sorry to know the diet does not do much for you. I just started it as of this morning along with the first doses of Elmiron. It takes quite a bit of time to kick in my uro says so I still feel terrible. The pain pill I got worked great and I was able to sit and watch "dancing with the stars". But of course they are for really bad days only so today I haven't taken any. The heat patches seem like a great idea. I'm heading out to buy some. I hope you are able to keep the PT sessions that's always a good thing. Hope you feel better today!