Living with Interstitial Cystitis

Hey Everyone, My name is Marie. I am a 26-year-old living with Interstitial Cystitis or IC I was diagnosed with IC 7 years ago but I had already been suffering from Urinary tract Infections or UTI’s, bladder pain and urgency since I was at least 14 years old. In the first stages of my treatment, I was still feeling the IC and could not live with the pain. It has taken a lot of time and pain to figure out something that works for me and maybe I may be of some help to others. This is my story and some things that my doctor and I have found works best for me. Therefore, I suggest you speak to your doctor first before you try anything you hear in my story because it may not be the best for you. This may only be of help to IC cases that have similar UTI additional problems as I do. If that is you I know how you are feeling and I hope my story well be of some help to you.

When my doctor diagnosed me with having IC, right away my doctor started me on a drug called Elmiron. They explained that this is a drug that is similar to what they give for ulcers to coats the stomach, except it coats the bladder instead. At first this helped but did not fully protect my bladder from everyday pains that were being caused by foods, drinks etc. In addition, the Elmiron could not prevent or help me with my frequent UTI’s. Once one of those bad boys got started, I knew I was in for a whorl of pain. In addition, it seemed as if the IC and UTI’s were connected in some way. Since I had the IC, when I would get a UTI it would seem to be worse than it normally was. In addition, over time the pain from the UTI’S were becoming more unbearable and starting faster then my doctors and I thought was possible.

Normally it takes hours to days for a UTI to develop major symptoms. From when it first starts to feel a little uncomfortable, to when it becomes full blown, “I’m going to hurt someone if you don’t make the pain stop!” pain. One time one of my UTI’s got to the point where it skipped the little discomfort and went straight to the full blown “I’m going to hurt someone!” pain in a matter of minutes!!!(And the ER’s have the nerve to say UTI’s are not an emergency! Don’t get me wrong I understand if its life threatening they need to see those patients first, but after that, their “order to be seen” needs to be updated. Because when you are almost screaming from the pain and you have to wait for everyone in the waiting room to be seen before you, I as well as every person that has IC and has ever had a UTI on top of it, beg to differ!… I am just saying…) Anyways to get back to my story. After these extremely unpleasant UTI’S were getting unbearably worse and more frequent, I went to see my doctor because I had had it. I could not take another UTI or I was going to insist I have a bladder transplant… if they were even possible. Unfortunately but come to find out later fortunately my doctor was not in that day. Let me explain.

My doctor is a great doctor and I still go to them till this day but the doctor filling in had an addition to my doctor’s treatment my doctor had not thought of that they said had worked for other women with frequent UTI problems. The doctor asked if these UTI’s seem to happen after I have intercourse. I shyly replied “yes, and that I have already been through the “How not to get a UTI after intercourse” speeches the doctors tell you, a thousand times already. And although others may have benefited from them, I have religiously done all those things after intercourse and they just do not work for me. Then the doctor understood I was not a rookie at the whole UTI thing and that I was probably one of those few women who cannot prevent UTI’s on their own. I was going to need modern medicines to help pick up the slack of my good for nothing, prone to infections bladder. So they told me to take a mild dose Antibiotic after intercourse. They assured me this mild dose would be strong enough to keep the infection in my bladder from starting but low enough that I could take it when needed and it would not be bad for my body.

So, after years of having UTI’s almost every three months I am happy to say it has been at least 2 years and I have had only one or two. In addition, as a bonus my IC symptoms improved dramatically. It turns out the IC and UTI’s were rather connected. As far as I know, one did not initially cause the other. Although, I was already aware that when I would have a UTI my IC would make the pain ten times worse. Nevertheless, I found out that because I was getting so many UTI’s it was causing major aggravation to my IC. Even though I saw improvements from taking the Elmiron, I was not getting the full results I should have been getting if I did not have the frequent UTI’s. My IC would never have enough time to heal in between the infections. Therefore, it was unable to get the full benefits from the Elmiron, as if it was always playing ketch up. Now, along with the success of not having the frequent UTI problems, I still have IC but rarely ever feel like I do. Occasionally my IC will flare up especially if I am without Meds for a while. However, as long as I stay on top of my Meds, Elmiron (taken three times a day) and a mild Antibiotic (after intercourse for the prevention of UTI’s) I am living with IC but not feeling the pain. I am pain free with IC.

I hope my story helped you.If you have IC and UTI problems don’t give up hope talk to your doctor about my story and if what I did might work for you. Good Luck AND God Bless

I Am Pain Free with IC,
~Marie~