Pain, Pain Go Away

[shinana]

:smile fai
Lately if I am awaked from sleep and I do go to the bathroom the pain comes back 10 fold. It is almost as if my pelvis and vag area is pulsating. Also, after not being intimate with my husband for a while and biting the bullet and having sex, the pain for the next few days is awful.
I am so frustrated. I am a nurse and have a great job, but I am unable to work at this time due to the pain and the potty runs.
This IC is taking away daily living and in exchange given me daily pain!!!
Diana

[lindy lou]

Diana,
Same here and it wasn't until I started on elavil that I could sleepmore than a couple of hours at a time. Now, with the elavil, if I have a night time run I can at least get back to sleep.
Linda

[shinana]

So, you have the pain as well after you get up and go. I mean I have a hard time getting back to sleep because the pain is so bad. In fact last night I had to take a pain pill.
Diana

[Babs RN]

Diana,
Hello from a fellow nurse. I have been diagnosed for about 18 months--finally gave up my love ER nursing this summer to the IC. Hard to step out of a code and say--hey stop for a sec, I gotta pee again. Plus prolonged standing was causing horrific pain for me as well as my drive to work(driving hurts too) which was 75 miles. I can empathize with the sense of loss of control that this disorder brings. I miss going to work. While I am having a great time with my 4 year old since she has been in daycare since she was 6 weeks old--and being a mom is the best job and I am BLESSED by Lindsey, I love taking care of people even when I feel yucky. If you need to talk, vent, scream or talk shop, please e-mail me or PM me anytime.


Hugs,
Barb :welcome:

[shinana]

Barb, I am or should say was a surgical oncology nurse at the University of Michigan.
I have been off work for about 6 weeks and am not sure when I will be able to return, if ever. The others always teased me because during a surgical case I would poke my head out and say help I need to pee. Then one day in August while doubled over with pain and not knowing what was going on, I was sent home and have not been back since. I miss work so very much. The socializing with my friends and yes the surgeons as well. There are days I think I feel well enough to work and then up all night with pain, or spending the next day tied to the potty and unable to get out of bed. I am not ready to give up a career I love, but may have no choice.
We are silently choosen to participate with IC and must join no questions asked or answered at the beginning.
My goal is to return to nursing and continue giving instead of being taken from. I love my patients and hate being one.
I am getting a DMSO treatment in the weeks to come and am seeing another specialist at the mighty U.
I am hanging in there and Have just started my FIGHT!!!!!!

[kadi]

I also take Elavil & Ditropan at night & that takes care of most of the nighttime IC symptoms. A few times, it has happened though, so I used an ice pack. That helped. And I have a CD called "Healthful Sleep" by Belleruth Naparstek- it's a guided imagery tape to put you to sleep. Works like a charm... (In fact, I've used it for several months now & never heard it all the way through. zzzzzzzzzzzzz) Got it on amazon.com

[Imustpee]

I always get relief after I pee, for a little while anyways..

[shinana]

Kadi, this pain after urinations just started about a week ago. It seems each week brings with it something new. There are so many questions and it seems the Dr's are as much in the dark as the IC pts.
Also, just found out last week that I have two cousins with IC.

[lindy lou]

Diana,
You should read and read more. That way you can be a partner in your treatment. Hopefully, your doc is knowledgeable or at least willing to learn with you. I would think that you have some of the best at UM and the rest is just trying different treatments to see what works for you. We are all so different and what works for some of us may not work for you. Patience is in order. Good luck and God's blessings to you. Linda

[Imustpee]

I agree! Read and be informed!! Here are some links I just sent to my parents who still don't understand I have a disease...

http://www.interstitialcystitis.co.uk/IC2/InterstitialCystitis2.htm

http://www.hmc.psu.edu/healthinfo/i/interstitialcystitis.htm

http://www.urologyhealth.org/adult/index.cfm?cat=03&topic=210

[green_the_fish]

I liked the articles, I Must Pee, but one of them said:
"While there is no cure, interstitial cystitis is usually easily treated..."
I wish :yikes:
Hope you get some relief soon, Diana. IC is just :cussing:awful!

[shinana]

I Am Sitting Here Going Threw The Aritcles, And See So Many Of The Symptoms I Have At Present. I Have Good And Bad Days, But Do Feel In General Things Are Progressing Towards An Increase In Symptoms: Urinary Frequency, Pain Almost All The Time, Back Pain And Vaginal Pain. It Is Funning But The Urologist I Am Seeing, When I Told Him I Have Back, Vag And Leg Pain, Just Looked At Me And Said "those Are Not Common Symptoms" Letting Me Believe Gee What Else Is Going On. I Believe Not One Individual Dr Has All The Answers. Like Miss Clinton Stated, "it Takes A Village". I Now Know It Is Going To Take Many Different Articles, Message Boards Threads, And Dr's To Get All We Need To Know To Satisfiy My Curious Mind.

[Stella1609]

I find that if I go right away it relieves my pain, but if I hold it, like when I've been asleep or if we're on a drive and there's nowhere to go, then my stomach will hurt for a while afterwards. It's only been so bad that I have trouble going back to sleep since the cysto, though.

Laura

[shinana]

Laura, I Am So Glad You Can Relate.....i Get Awful Pain After Being Awakened And Peeing, Many Nights I Lay Awake, Or Make My Way Into The Living Area And Just Sit There. You Feel Your Symptoms Are Now Worse After You Cysto? How Did Your Bladder Look And Was The Cysto Done Under Anes?

[shinana]

Are Any Of You Able To Work? I Have Not Been Able To Work For A While And Miss It Terribly. Some How I Feel I Would Be More In The Way Because I Am Not Able To Pull My Wait, Due Running To The Bathroom And Feeling So Bad Most Of The Time. I Hope I Will Get My Busy Life Back And Soon. I Can Deal With This If I Can Have Some Sort Of Life Back.

[Stella1609]

Diana, I had a cystoscope done under anaesthesia with a dilatation but no hydrodistension. The urologist said it looked normal, but this was my old doctor who may not even know what IC looks like (he certainly couldn't give me a correct diagnosis).

I've been working, but I actually wish we could afford for me to stay home. I've had coworkers complain to my boss about my frequency (someone actually counted how many times I went to the bathroom on a certain day), so I had to bring in a note from my doctor.

Laura

[Cricketmk3]

Shinana, You describe your pain exactly the way I feel mine. When I go to the bathroom while in a flare (day or night), there is a pulsating pain for several seconds afterwards. I assume it's a bladder spasm. Then I have terrible pain for a while afterwards. Can't even think about lying down if it's during the night.

[XoChelsey03Xo]

I tell you what I hate....I get up in the middle of the night and go to the bathroom. I go and get back into bed and get all setteled down and guess what????????????? I gotta go pee again!!!!!!!!!! I go to the bathroom and then I don't got to go anymore!!! IC is soooooooooooooooooooooooo annoying!!! Chelsey

[Babs RN]

Diana,
I have the night time issue too. My biggest problem is morning though because all the meds I took the night before have worn off and my bladder is absolutely ticked off. If you ever want to talk, please PM your number(I have unlimited long distance)and you can unload on me. I'm a pretty decent listener.

Hugs,
Barb :love:

[lindy lou]

Being able to work depends on many things. Everyone has different symptoms and level of pain so my experience may not be anyone else's. My dx was in late July so I had about 3 weeks to try to get it together before I started back to teaching school. My classroom is fairly close to the BR and my class is really flexible in that I can step out at any time. I am able to hold it for 45 minutes or an hour and even though it feels like I have to go every 10 minutes, I know nothing is there. Once I started on Elavil, I was able to get more sleep and wasn't such a zombie during the day. Sure I am uncomfortable bordering on pain, but fortunately I am able to work. I am exhausted when I get home and rarely get any house stuff done, but I would really miss my work. Linda

[shinana]

Thanks To All The Responded To My Thread. At Present I Am In Constant Pain And Hope To Get Some Relief From A New Urologist. I Am New With My Dx And Have Not Found The Magic Bullet Yet. I Am Very Opptumistic And Hope I Can Return To Nursing Soon.

[Miki]

In general, when I am not in a flare, I can pee and then have relief, I will actually hold my urine for hours, and have trained myself to ignore the pain at 2-3 levels.
(1(haven't had that since I got this disease -10...screaming go to er)
I am now in a flare that is very odd for me. I pee and stop and pee and stop, I can take 15 mins. just to try to get it all out, without straining. I still feel raw and spasms after going. All my old tricks are just not working any longer.
I had a whole ritual that would give me relief, and now, it seems the break through pain is just constant.
I will be calling my pain clinic on Mon. I have an appt in 2 weeks, I am not sure I can manage that far.
This is the worst pain flare I have had, since the last time about 4 yrs ago when the oxycontin stopped working.
They put me on the patch, and after getting adjusted, it worked really well, with lortab, zanaflex, and valium as flare meds.

Now I take these flare meds, and I wonder if I have taken anything at all!
I can't seem to sit comfortably, I feel a little better if I am upright, but not for long, I am basically in bed most of the time, right now, with this flare.

Very angry, and very depressed.
I don't have a Uro. seem so many of them. I might try to see a person recommended to me, but I don't know what they can put me on, that might help. I have been dealing with this for at least 22 yrs.

I think I might know more than the doctors at this point.

Miki