New and frustrated

[alycat]

Hi, I'm Alyssa, I'm 18 and was diagnosed with IC in June of 07, though my symptoms began in Nov. of 06. A cysto was done to diagnose, and I was placed on Elmiron. At that point I was also on Detrol LA and Birth Control (4 periods a year). The year before I had severe moodswings associated with my cycle that also irritated my symptoms making me bedridden for a few days a month. After the cysto I got a lot better, and was even able to start a job.

In September I became really sick again. I ended up quitting my job and am struggling as a college fresmen at WSU Vancouver. My urologist put me on amytriptalene due to pain, though I have recently stopped the drug because it wasn't helping and I am currently also dealing with depression. I was then put on a probiotic as when my symptoms first began (When they thought it was just a bladder infection) I had responded well to antibiotics. The probiotics did nothing but make it worse, so I've gone off of them as well. Now I am on only the elmiron, which has lost its ability to keep me from being in pain, so I am considering having my dr switch me to something else. I also am taking pyridium daily just to be able to survive. These have started to make me nauseas when I take them, even if I take them with food. I cannot take meds on an empty stomach as I get very ill.

I have several appointments coming up, DMSO treatments begin the week before xmas, I'm meeting with a therapist as I have started to have suicidal episodes, I also am meeting with the Urologist again as I have concerns about possible back problems and am looking for another treatment to try.

This has become a very frustrating time in my life, as my friends and family try to understand my condition, they still inadvertantly tend to make it worse. My friends try to help by offering me foods that make me sick, saying 'just a little won't hurt'. I know better. My parents are very supportive, my mom taking a lot of time off of work to go with me to my appointments. However, I have a hard time explaining what the pain feels like and can tell that its taking its toll on my family. My doctors right now keep telling me that I'll 'grow out of this'(One ER doctor even had the nerve to put it in my notes of the visit!), but I know that this is something I'll probably deal with for the rest of my life. Right now I'm looking for something else to try to get this under control.

[leelee88]

I am very sorry that you are going through this. In the beginning IC is such a roller coaster ride.. There are many differant treatments finding the right one can be a long and painful process.
I truly believe that finding the right Dr. who knows alot about IC and is will to treat all aspects of this disease is the key to getting some relief. I hope you find something that works for you..:angel:

[Claredale]

I hope you find a doctor as well. It is so important to find a doctor that really understands all the symptoms and treatments of IC.

I see that Pyridium makes me sick as well. I get very sick on it. See if you can try Urelle or Prosed DS. I am assuming you are in Canada, so I don't know what's available. I take Proced DS and it has made a huge difference in my spasms and my pain. It turns your urine blue instead of orange. I am very sensitive to meds and their side effects. I am grateful everyday that I finally have a medicine that has been working this well.

Welcome to the ICN!

Tracey

[SharonA]

Allyssa...Hello and :welcome: to the ICN.

I am very glad that you are seeking treatment for everything that you are going through. :):):)

[Smokey]

Hi Allyssa & welcome to the boards:welcome:

You have come to the right place for information and support. At first IC seems so overwelming and you feel you are on an emotional roller coast ride. It does get better, its a matter of finding the right medications. Having a supportive family helps also.

Have you tried desert harvest aloe vera? It has saved me.

It will get better, try to stay positive.

Lorena

[GriffsMommy]

:welcome: Alyssa. I'm sorry you're having such a rough time. I have some trouble with pryidium making me sick as well. One of my co-workers suggested that I try ginger caps and they have really helped. I did check with my dr and he said this was fine. I find if I take 2 ginger caps with my pyridium then usually it stops me from feeling sick.
Ronda is right, there really are so many treatments out there to try and it does take some time to find the right combo for you before you start feeling better. Hang in there. :grouphug:

[alycat]

Thanks, I've got an appointment soon and am going to ask if if it's okay for me to take the aloe vera with my meds.

Found out tonight that I've got a bladder infection on top of everything, which may explain why I've felt so sick lately. Going on Bacterim for a few days to hopefully clear it up and make me able to finish my finals next week.

Thank you all for the kind words. I'm glad I found a place to come and find all of this information, reading some of the stuff on this site I've come up with a list of questions for my urologist to ask at my next appointment.

[Dreamlove15]

Dear allycat,

I am so sorry you are dealing with this IC as well. I just tured 23 and unexplainably became ill in August and now I have IC 4 months later. I can definitely relate to what your going through. Its not easy and especially when your friends dont understand how to treat you. Not being to eat junk food, hang out, drink etc. Trust me, im going through the same thing. Im a college student, had to quit my job because I was so sick. Now im just struggling to cope with the fact that im sick and mostly trying to get better, so maybe I can get back into to finding a job. I just know that surrounding myself with caring people has been the best thing for me and helps alot. There is no need to be around unwanted stress and just try to cut it out of your life because IC does not cope well with stress. I was just diagnosed with IC on Nov. 14th and quickly afterwards got even sicker because of a UTI from the surgery. I was in the hospital over a course of a week...I have definitely lost some friends along the way and its so hard not to have support when you need it the most. Its going to be a tough road im not going to lie, but just know you are NOT alone. If you ever need to talk just message me alright. Take care and get better. :angel: