Interstitial Cystitus???

Posted , 6 users are following.

Hi all,

I've been battling regular UTI's over the last two years.

It started with one every few months, then to one every two months, then to one a month... And now... I feel like I have a permanent UTI.

Antibiotics no longer work...

I always have discomfort now. Every morning when I wake up and urinate it burns for quite some time then goes away. And this discomfort comes and goes through the day. Some days I have it on and off, other days it burns all day. My bladder always feels weak and tender.

Just that feeling that the whole urinary system is wonky or damaged.

And there's nothing I can do to help it other than mask the symptoms with alkalisers.

I also take lots of d-mannose everyday just incase there is any e-coli laying around but the last few urine cultures I've taken have come back negative.

I have to be very careful with intercourse as sometimes it triggers the symptoms and sometimes it doesn't... Which sucks as my husband and I are trying for a baby.

I can no longer drink most alcohols or any soft drinks or even eat much sugary or spicy products as these cause a flare up. And if I get dehydrated or have a night out the pain the next day is excruciating. And sometimes it's just excruciating for no reason.

I have to wait a huge length of time to see my urologist and doctors keep whacking me on antibiotics.

I am very concerned that what I'm describing has now become the dreaded Interstitial Cystitis... A permanent and difficult-to-treat condition.

Does this sound right?

And if so, what tests do I need to do? The dreaded cystoscope? (I've already had an ultra sound which shows no abnormalities.)

If anyone has any advice... I'm all ears... This making me miserable =(

0 likes, 6 replies

6 Replies

  • Posted

    While you're waiting to see the urologist, live as if you KNOW you have IC.  Drink nothing but water, cut out as much sugar as possible (also artificial sweeteners - I use Stevia or nothing at all).  No spicy, greasy, acidic foods (sometimes, after a period of treading lightly, the IC will go into remission and you might be able to add back in some of your most favorite foods).  Stay away from "processed" foods such as pre-packaged sandwich meats/cheeses, boxed dinners like Hamburger Helper, no fresh onions or garlic, no sugary cereals (I prepare nearly all of our foods from scratch so I can control the ingredients, using dehydrated onions and garlic which doesn't change the flavor at all when compared to fresh) and chocolate since it contains both sugar *and* caffeine.

    Give your body this amount of time.  If your condition doesn't change, it's unlikely you have IC.  If your condition improves, that gives you a great deal of information for the urologist.

    IC is miserable but it doesn't have to define your life.  It can be controlled with lifestyle changes (which, to me, was a small price to pay in order to be pain-free).  Also try to make your life as stress and anxiety-free as possible (easy to say, hard to do...I know; however, stress can greatly exacerbate IC).

    • Posted

      Why do you cut out garlic? Garlic is a natural antibiotic which has the added benefit of encouraging the good gut bacteria. It is probably the destruction of these which create imbalances throughout the body leading to conditions such as IC.
    • Posted

      Because garlic and onion, in their fresh forms, are very irritating to the bladder in cases of Interstitial Cystitis.  

      If you completely read what I posted, I specifically stated "while you wait to see the urologist live as if you KNOW you have IC".

      If one has *already* developed IC, then a lifestyle change is a must.

  • Posted

    Sounds a lot like my situation only it's only been about 3 -4 months. I've tried Bactrim and Cipro. Then I was still having burning so I just started taking Cystex OTC (it has a small antibacterial medicine in it), cranberry pills, and started wiping after I pee every time with an antibacterial wipe, and so far it seems to be helping. I also use MSM lotion on my urethra opening if it's really burning. These things have helped and the burning is less but I now have s little vibration or spasm off and on of my bladder, which is odd but at least it's not painful. Good luck to you!

  • Posted

    Hi Emma

    Sorry to hear your problem but don't get stressed over the cystoscopy. It really is ok to have done. I had minor discomfort afterwards but it only lasted a few hours. I was more concerned about the results but mine was clear.

  • Posted

    Hi Emma the best way to relax ur bladder is water I can't tell u how much has helped me myself and not just sips of water try drinking it continuously throughout the day its like drink and urinate then drink and urinate frequently until your urine color becomes transparent like water second is to take probiotics it relaxes the bowel and helps grow the healthy bacteria also one of the things that helped me is parcley water I take a whole cup of boiled water put fresh parcley in it leave it for 30 min then drink it it's a natural diuretic it'll release all the residues and irritants sitting in the bladder 

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