Living with Interstitial Cystitis

So I am 25 and was diagnosed with IC in March I have had these symptoms for three years my gyno thought for the last three years that it was my cervix hanging low because I had three children. Well that was not the case, I had the surgery in March to determine whether or not I did in fact have IC and low and behold I did.

I have gone through the rollercoaster of emotions, at first when I found out what the hell it was I was extremely depressed, Then I tried to take a head on and try to control it (i have an extreme High Tolerance for pain) with this it does not matter you could have the highest tolerance in the world and this will knock you on your a**.

so anyway I went back to the doctor a couple weeks after the surgery and he put me on elmiron hydroxine and amytriptilne, for awhile I was doing fantastic from the middle of April until the end of august, and then out of the clear blue EVERYTHING came back all of my symptoms except they came back even worse I rarely got up in the middle of the night now I am getting up twice maybe three times a night I am in pain all the time.

Between the bathroom and the bed that is my Life, So I went back to the doctor earlier than I was scheduled and he was pushing the direct incerstion of the meds, which I have no problem doing but my insurance wants me to pay a copay every time which would add up to 120 a week ( I just can not do it) So he upped my meds I have to continue with the other ones regularly and the amytriptilne I have to take 100mg of, But he also prescribed me Perks.

When I had seen my doctor I looked him right in the eye and cried and told him that I wished that I did have cancer, at least this way when I tell people what I have they would know what I am talking about but instead I get looks like I am a friggen alien because not many people know what I am talking about.

What comforted me was when the doctor told my husband that it is not all in my head that these symptoms are in fact real, but it so hard. Some days I just want them to remove my bladder just give me a bag, All summer we really could not do anything because I had to make frequent trips to the bathroom, and to make matters worse I have a huge fear of public restrooms so this is def. a disease I should not have been diagnosed with, so

I very rarely leave my house. Yesterday Morning I told my husband that I give up this is one fight I can not win, I also told him that some mornings I wake up and before I get out of bed I pray that I am going to be ok, and some days I am but most I am not. It feels Like I am in a nightmare and I cannot wake up from it. I keep asking myself Why? Why did this happen to me why can’t I just be normal? or why can’t I have a disease that they at least know what it is.

I have three children who are fantastic, but it dawns on me that their life is effected just as much as mine 95% of the time I am stuck in the house with them because I am in to much pain to drive anywhere so they have to wait until there father gets home and then they get to go out. The Biggest mistake I make is on the days that I am doing good I overdue it and try to get everything done in one day and then I pay for it.

I am only 25 and I have so many more years to go and I don’t want to I honestly want to give up I have to take 9 pills a day what a freaking life and I have to do this for the rest of my life or until they find a cure. I don’t know anymore.

I appreciate anyone that read this I guess I just needed to vent to people who can actually understand and relate I tend to feel alone you know because nobody around can really understand what I am going through and how I really feel.

So thank you to anyone that takes the time to listen to me vent