need tips

[ksmith83]

Hi, I'm Kim and recently diagnosed with IC. I am 21 and a senior in college. I have had severe endometriosis since I was 16. Last semester, I had to drop all my classes because I was in so much pain (from endometriosis and the IC i didn't know I had.) I had a radical surgery this summer to remove my appendix and endometrium, and my endometriosis is hopefully gone for good. I have had UTI'S nonstop so I had a great urologist in Utah who put me on a Elmiron, Enablex, Phenazopyrid, Hydroxyz Pam and Imipram. I also had a cystoscopy. I am now in West Virginia for school and have to wait a month to see a urologist.
I have been in so much pain, I just stay in bed all day and cry. Its hard to study, and I hang out with my friends less than I want to. I am watching my diet and running every day (even when it hurts). I miss chocolate, fruit and wine. For pain relief, I take baths, get massages, exercise or in severe cases take vicodin. Does anybody have any pain relief tips??? It would be greatly appreciated :smile tee

[KarenAnne]

Can you get a urine culture done at the school clinic to check for an infection? Also, IC affects everyone's pelvic floor muscles & you don't want to do exercises that agravate this muscle group when you are flaring like this. Can you get a script from your old dr. to get PT? The office can send you the prescription in the mail. Can you also ease off from running till things calm down?

Chronic pain can be very depressing. Talk therapy helped me in the beginning. Let us know how you are doing.

[ksmith83]

Yeah I can get a culture test. I have already called my urologist in utah and they gave me pain medication, but I will ask if they can do anything else. Should I do the elliptical instead of running? Thanks for all your advice, I really appreciate it. My mom is across the country, and I just feel so alone. My friends help me out, but I don't want to depend on them. How long have you had IC for?

[KarenAnne]

I'm not sure about the elliptical, hopefully someone else will chime in about that. I am sure that walking is ok.

I've had IC since Aug. 08. This website is a good place for support & information. There are several college students on here that can offer advice about college life w/ IC, check the older posts under "search" in the blue ribbon. I hope you are feeling better soon.

[Sue10]

Hi Kim,

I know first hand how difficult living with the pain of IC can be. I hope I can send some encouragement and strength your way with my post.

I was in the exact same position as you are in 2 years ago. I lived with so much pain from IC that it felt like there would never be an end in site!
Even on treatment I felt great despair because I wasn't feeling results quick enough. I was in bed every night by 7:00p, for months because I couldn't function with the pain I had. My only relief was lying in bed still and trying to sleep.
My doctor started me on Elmiron combined with the IC diet. It took several months before I noticed any improvement but there was improvement very gradually. It seemed each month got a little better with time. It took about 6 months on Elmiron to really say wow I feel really good.

Now, 2 years later most days I feel almost completely normal. You say you miss chocolate and wine, etc... I can now have these things back in my diet in moderation of course. Life is so much better and trust me I felt the way you do. I cried myself to sleep every night wondering what my future would hold.

Give the elmiron a chance to work as it can take several months. Once the pain got better all my other symptoms improved as well. Don't get me wrong, I still get flares once in awhile as this disease is chronic. I probably have about 4 bad days a month now....which to me is heaven compared to what my life was like.

Please stay strong and believe that you will get better. Give your treatment a chance to work. Keep us posted on your progress. If you want to PM me I would be happy to talk to you.

[Reannin]

Hi Kim. I don't know if I'm one to give you advice, being that my symptoms came on back in July and I was officially diagnosed with IC in the middle of this month, but, what I can tell you is from what I've been reading and researching on this forum as well as things I've noticed with myself. I, too, feel your pain.....LITERALLY. I'm a young woman, like you, who JUST graduated college this May. I felt I was on top of the world and my life was falling into place until...BAM...this hit me. I, too, am always just feeling so miserable with pain and discomfort and depressed wondering if I will ever feel completely normal again. I can barely live day to day, it's so excrutiating. I, too, try to go to sleep early because that means once I'm asleep, I won't feel the pain and discomfot anymore. This IC thing has TOTALLY thrown my life off of its tracks. I have gone TWO MONTHS solid of not even the SLIGHTEST bit of relief except for about 4days ago.

I agree with KarenAnn. It is probably best to not run while your symptoms are so strong. I used to be an avid runner and a workout-aholic before this IC hit me. When I tried to go running, it would spike my symptoms some more. Jill is the IC manager on this board, and after reading tons of her posts, watched tons of her videos, read tons of her articles, I have basically learned from her that your bladder is basically injured, and you need to treat it like a real injury (being that it is practically an injury). You wouldn't go running on a broken leg that's trying to heal up would you? You would basically just be re-injuring it. As far as the eliptical, I've read that you should do that instead of running if you have IC; however, even I'm still iffy about it because you technically add a little bounce in every stride. I think if you ease up on the running for a while, you will notice some difference in your pain, but I can guarantee it won't be overnight. It will slowly have to calm down because it's already in a frazzled state. Hey...every little thing helps. When it comes down to it, you're giving your poor injured bladder time to heal up like you would a broken leg. You might just be bothering it a little more from after you run because you're jarring your already injured bladder up and down. I'm not a doctor, and this is only just a guess because I noticed with me that if I walk really fast with too much bounce, or try to slowly jog to hurry and get the phone or something, I flare myself up a little more. I can feel it. I'm going CRAZY not being able to work out like I used to, but I know that I need to take it easy so my bladder can heal up and give my meds a chance to make a difference. So, please, do take it easy on yourself so you can get better....faster.

For another pain management strategy I use, I use an electrical heating pad. I usually have pain either slightly right above my pubic area, right in middle of my pubic area, or around my crotch/buttocks area. I stick the heating pad where there's pain, and it sure does take the edge off. I am also on Amitriptyline (Elavil) the lowest dose (but I'm only 110 lbs so this might be all I need). Maybe you could inquire about Elavil when you can get in to see a uro??? Research it a little just to give you some idea about the medicine. I just started last week, and BOY has it made a difference in my pain level. Granted, I still feel a mild to moderate pain, but NOTHING like I was feeling before. Then, I could barely WALK I was in so much pain. Not kidding! Every step was excrutiating, and I would have to fight back tears so I wouldn't cry in front of my students (I'm a teacher)<---How i do this job with the severe side of my IC, I have NO clue. I'm hoping the Amitriptyline will continue to become more effective with time just like the Elmiron. Also, I don't know what's going on, or what meds or combo of meds I'm on, but I've been on Elmiron a little over a month and have felt a slight difference, so please do give it time. I'm a FULL believer that this medicine works. You just have to take some time for yourself, do some self care things (no running), and take your prescribed medications ALONG with the Elmiron. I'm a believer that other things need to be done in order for Elmiron to do it's job. Again, treat your bladder as though you have an injury. That is the way I look at it day to day. I'm SO SO SO sorry it will be another month until you can get in to see a doctor. That's horrible! This IC thing is so tough to just be sitting around waiting. Until then, keep doing what you're already doing, and maybe invest in a heating pad if you don't have one already. I would stay away from any exercise that will be too jolting or jarring on the bladder until you can get things under control. I pray for both of us that Elmiron will be our wonder drug, and we'll be pain and discomfort free forever. I certainly hope this somewhat helped. I'm so sorry if it wasn't much of help since, I too, am a new ICer.

P.S. It's great you have friends that are helping you out. What great support! :)

[ksmith83]

Thanks for all your help guys! I feel so much better after reading what you guys said...I don't feel alone anymore. I have tried walking the past couple days, but that even hurts. I am on a really strict diet but I'm still just holding back tears all day because I'm in so much pain. I'm trying to focus on school work but it is so tough. I hope you all are having a good week :)