Recently Diagnosed

[tuvaralm]

Hello my name is Tuvara. I am 27 years old. I was just diagnosed with IC about a week ago. For the last few years I have been having severe pelvic pain. No one knew what it was or why it was happening until recently. A couple weeks ago I went and seen my family doctor, who did a pap, and pelvic exam. everything came back fine, but the exam put me in so much pain it was horrible. So they did blood work and all of that on me. He told me to go home and rest. I ended up back in the office just a couple days later , cause I was still in so much pain. He did another mini pelvic exam, and pushed on the bladder and I came up off the table cause it hurt so bad. So he sent me to a urologist. Well I went and seen him and he said I had IC before we even ran any tests. He set the tests up for the end of last week. Last Thursday I had the potassium test done (that was horrible!!!) and then on Friday I had the scope done with sedation. It came back that yes I did have IC. I am supposed to start on Elmiron this week, along with Vicodin for the pain, plus he is putting me on an antidepressant(cant remember the name), he said the antidepressant is to help with the pain. My urologist is great. He is hoping that the meds will work for me and make me feel better soon. His plan is after the first 90 days of the Elmiron to slowly start to taper the amount down, I will start at 2 times a day 2 pills at a time, total of 4 a day, down to taking a pill or two a day the rest of my life. Im really not looking forward to being on medication forever, but if it helps then I guess it will be worth it. I really just want to feel better, Im so tired of hurting so much all the time. It affects everything I do from my job, my husband and I's intimate relationship, the fun I can have with my kids and everything.
I guess right now I am just pretty bummed about it all. But I still keep going everyday through the pain, because I have to. My doctor said I am tough as nails by how much I force myself to do through the pain, but like I told him, what choice do I have, I have kids and they are little and need their mommy. Now there are plenty of days it is almost impossible for me to do anything, but on those days I take extra pain meds and keep trying.
Sorry about such a long post, especially being my first one, but i think I needed to vent a little. thanks ahead for any responses.

Tuvara

[meandmybladder]

Nothing to be sorry about Tuvara. It's good to vent. Most everyone here has been through the agonies of this affliction and understand.

It sounds like you have a wonderful Uro. That's a true blessing. You might also want to start the IC diet. It's been an enormous help for me. Within 2 days I could see a difference in my pain.

Hang in there sweetie. I know it's hard. I'm new here myself and the information,support and kindness here has made things sooo much easier.

By the way...http://i43.photobucket.com/albums/e354/tkubi7/Welcome/we.gif

[Sarojini]

:welcome:

I'm glad you've found out what you are dealing with and have a urologist who is willing to help you and work with you to find adequate treatment.

Just a note... Elmiron can take up to six months to become fully effective, so you should keep that in mind. I am glad your doctor prescribed Vicodin and your antidepressant (it may be something like Elavil) -- both of these are very common IC treatments.

:grouphug:

[KristiV]

I too am 27 years old and was diagnosed with IC in March. It does take a toll on your sex life, but keep hanging in there. My husband and I weren't even having sex except maybe once every two or three weeks. Now, we are trying to make a baby. You might want to try some lubricant and see if that helps. Also, you might want to try putting a heating pad on afterwards. My symptoms have improved greatly since being put on meds in March. I was put on Elmiron in March and had to quit it last week because I am trying to conceive, but I believe the IC diet is one of the main reasons I feel better. I bought the Cookbook by Bev and also Confident Choices from the ICN shop to help me with meals. I also take Prelief if I eat out. I hope you start feeling better.

[tuvaralm]

Thank you for your support. I am looking into the Prelief. I am trying to watch my diet, but that is really hard. Everything that I eat is on the "not allowed" list my doctor gave me. So trying to get it figured out. Unfortuanetly I am a smoker, and am trying to figure out a way to quit that. plus I LOVE my coffee, but have been trying to cut that out as well.
Also, does anyone else constantly hurt from this? My pain has been there everyday for about 3 or 4 years. It never goes away. Somedays it isnt horrible, but then there are days that i cant hardly move. My Vicodin helps some, but on the really bad days it really doesnt seem to do very much? I have tried the heating pad, but that usually doesnt help to much? any other suggestions?

[jubejube]

Hi Tuvura,
I am 26 and was diagnosed in May. I totally understand where you are coming from. But despite everything you are going through, please know that this support forum has taught me a lot about IC and about how to deal with everything as positiveley as possible.
I am still having issues in the 'sex department' but i think it is more fear of the pain than anything else, that keeps me from trying. However this site is full of lots of great tips, including the lube and heating pad right after, so i am willing to give them a try. I very much understand where you are coming from, and how you are feeling.
Currently I am not on any medications. I was on Macrobid (antibiotic) for some inflammation that my doctor found, but I have stopped that. The IC diet has been the most helpful for me so far. I have been testing a lot of foods to see how i would react. While I have heard Elmiron takes a long time to show any effects, possibly it might be worth trying the IC diet to see if it helps with your pain right away.
If ever you need to talk, please PM me... im always here to talk!

[tuvaralm]

Well tomorrow is the official day of starting the Elmiron. I know it can take quite awhile to show any kinds of change, just hope it helps and there are not to many side effects! I started the antidepressant tonight, Tophrenil (think thats how it is spelled), well so far I do not like it! Im really dizzy and lightheaded, my heart keeps going from beating to fast to beating normal to beating slow, and it feels like there is something crawling all over my skin, even though there is nothing actually there. My husband, who is a nurse, told me to give it a few days and see how the side effects are doing, and that my body needed to try and adjust to it. I told him, I can deal with the lightheadedness and dizziness if I have to, but not sure how long I can tolerate it feeling like there is something crawling all over me. That just feels creepy!!!!! Anyone else been on that antidepressant and had any reactions?
I said I would give it a week unless it gets worse and then I am calling the doctor.

[jackiew75]

I too smoke and LOVEEEEEEEEEE coffee. :tsk: I have small ones at home and work second shift, so the thought of giving up my eye opener, makes me cringe.

On the other hand though, the thought of living with this pain makes me cringe even more... I am obviously going to give these things up... I know that I have to.

I think the hardest thing right now for me, is the first day, when I was diagnosed, I almost felt relieved..... I wasnt crazy after all! The next day, the anger began to set in and I started doubting what the Uro dx'd me with. I am just sad now at the prospect of having this forever... I am 32 and feel like I am 82. One day though, I will come to terms with it and deal with it head on!