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what does interstitial cystitis feel like? what does interstitial cystitis feel like?

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Unread 12-30-2004, 03:32 PM
what does interstitial cystitis feel like?

Someone suggested that maybe I have interstitial cystitis causing cramps. I had a bladder suspension along with my hyster, and I have felt very crampy despite my hopes that my uterus would take all my pain with it. My urinalyses have been normal up until now, and I am having frequency and urgency, as well as some pain on urination, and the terrible cramps are coming back that I'd hoped would have resolved.

My question is, does interstitial cystitis cause pain? I don't know anything about it!!! What is the treatment for it???
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Unread 12-30-2004, 04:16 PM
what does interstitial cystitis feel like?

What you have described are the textbook symtpoms of IC...google it to get more information, however it can also be adhesions, those are tricky little suckers.
You know you need to go to the doc and get it checked out happy, I know how bad you don't want to go.
Unread 12-30-2004, 06:22 PM
what does interstitial cystitis feel like?

Thanks for the info. No, I don't want to go to the doctor any more particularly, and Marian, you're the probably only one who understands why!! I am so tired of not being believed when I tell someone I'm in pain. I'm starting to doubt it myself and wonder if I need my head examined. I will look into IC and see if it fits with my symptoms. Thank you so much for responding!
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Unread 12-30-2004, 07:25 PM
what does interstitial cystitis feel like?

I, too, have been wondering if I have IC, and whether I had it before causing the symptoms that lead me to have the surgery, and now its just full blown. When I did the research about it, it seems that it is often not diagnosed, and you need doctors who are specialists to treat it. You can also check in the bladder matters section of this site - some of the women talk about it there.
Unread 12-30-2004, 11:22 PM
what does interstitial cystitis feel like?

Hello Happy, I am an IC sufferer, allthouh I have never noticed pain in the past, I have aways asumed the pain was soley due to the pelvic congestion, now I am noticing a little bit of discomfort during urination, I hope this is due to the catheter, but I am 4 weeks post op. I do experience urgency and freqent urination, though it has been less since surgery. There is no cure for IC but I did find that controling my diet and elmiron therapy did help. could it be possible that you could have a bladder infection ?
Unread 12-30-2004, 11:40 PM
what does interstitial cystitis feel like?

I have a cousin that has I.C. and she has severe symptom's, lot's of bladder spasm's and frequent urinary tract infection's along with urgency. It got to where she couldn't even get up and walk without leaking, she just got a stint and it seem's to have helped. Although she is supposed to stay on a special diet , she has problem's there so that doesn't help matter's any (smoke's, coffee, pop) among other things, but yes she does have a lot of pain.
Unread 12-31-2004, 05:49 AM
what does interstitial cystitis feel like?

I used to suffer from cystitis and it used to get so bad so quickly I'd end up in hospital with kidney infections. It lasted for 4 years on and off and all the was through pregnancy. Not surprisingly when I had my hysterectomy 2 weeks ago I had really bad adhesions, makes me wonder if it was due to the cystitises or the c-section....

Anyway all this to say that cystitis is very painful (in my case). I had cramps in front and back, the impossibility to go to the bathroom, sometimes a fever. The uricultures always showed infection and bleeding. The bright side was that 24 hours of antibiotics and the pain subsided.

Hope you have none of the above.

One thing I did notice is that after this surgery I thought I was getting another cystitis (even though it's been years). It was exactly the same sensation...... but no it wasn't (thank goodness)

2 words of advice if you are prone to cystitis:
-stay away from caffeine
-drink cranberry juice, or eat cranberry jelly or craisins
-keep your feet warm

Caffeine makes cystitis worse and craneberries are a natural disinfectant of the bladder.

smiles & dreams
Unread 12-31-2004, 09:12 AM
what does interstitial cystitis feel like?

I get the cranberries (I take mine in capsules because the juice upsets my stomach) and the no caffeine, as it is irritating to the bladder. But keeping your feet warm? That's a new one to me. Also very interesting because I have horrid circulation and my feet are always cold!!! Let me know how that works, okay?

For you who have reported that you get bladder infections, I've had bladder infections all my life, since puberty anyway. It came to the point where I was taking a prophylactic antibiotic dose every day for a couple of years. I never had any during my pregnancies though, thank heavens. Now, after my hyster, I have had only one positive urinalysis, along with three negative ones, although I felt like I had raging bladder infections, and I do know what they feel like having had them all my life. I quit running a fever with them a long time ago, though, so that is a poor indicator of infection for me. Can you have IC without having a bacterial infection on UA?

Right now, I'm on pyridium at least twice a day. My toilets are stained, but otherwise it seems to do a decent job with the urgency and most of the pain on urination. However, it doesn't take away the cramping, and some of the dysuria symptoms are still there. Would this rule out the IC? I mean, if the pyridium takes away some of the symptoms but not others? I had a bladder suspension at the time of my surgery, so my doctor said six weeks ago (the last time I saw him) that perhaps it was still healing and there was some spasm. I had one dose of Norco reserved for myself in case I was ready to jump off a cliff, and at a point I was ready to, and the pain medication helped with the cramping, but likewise did nothing for the dysuria...that pain was only taken care of by the pyridium. I am out of pain meds and scared to ask for more (at three months, I can understand their hesitancy to prescribe more controlled medicines).

Thank you for answering my questions for me. This is really uncharted territory for me. You ladies are a real blessing to me!
Unread 12-31-2004, 09:36 AM
what does interstitial cystitis feel like?

This thread is perfect timing for me.
Happy, I know how you feel.

This morning I went to the bathroom before time to get up and at the end of the stream there were knife like stabs. This has happened before and I have been to the doctor about it. 2 weeks ago she put me on a 2 week supply of tolterodine tartrate. Its usually for someone with overactive bladder. I got some relief, but still have occasions like this morning. After I returned to bed it hurt to the point of tears. My sweet husband got me some advil and I was able to get back to sleep.

Like you, Happy, I am worried about returning to the doctor. I am worried that I'll be put thru more uncomfortable tests. And like you I am asking can some of this be in my head? Its been 6 weeks since my LAVH. I sure dont want to find out that I have a new issue that will require more surgery, like a fistula.

I wonder about adhesions. I'll check that out after this. I was hoping that these were simply spasms from the effect of surgery and would calm down.

I wish the best for you.
Unread 12-31-2004, 09:41 AM
what does interstitial cystitis feel like?

Again I'm only telling you this from what I've heard my cousin say. Even on the med's she still has lot's of problem's although it does help some symptom's, stress also play's a factor in how bad the I.C. is as well as diet (acidic fruit's and the like) caffeine, smoking, she also told me her dr. said that Fibromyalgia goes along with it too. Also certain food dye's make's it worse. She said that by the time she put's everything out of her diet, she would starve! Although I love my dc I'm not really sure she has tried that hard.

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