Does anyone know about interstitial cystitis please?

tillytop
tillytop Member Posts: 3,460
edited 28. Nov 2012, 05:24 in Living with Arthritis archive
Hello peeps

I know this is not arthritis related but since, between us, we have a lot of "weird and wonderful" conditions :roll: I thought someone might be able to help me.

I have always suspected that my ongoing stomach problems and nausea were caused by more than one thing, given the nature, location and varying severity of the pain. The meds I am taking for a suspected stomach ulcer are definitely helping with the upper abdominal pain, so I am fairly sure that will resolve in due course.

However, it was another episode of very bad pelvic pain which sent me to A & E the other weekend and, once infection had been ruled out by urine and blood tests, I was referred to gynae. The gynae tests revealed nothing so I came away, still in pain, with no further answers.

In advance of my GP appointment on Weds, I did something I don't normally do and googled pelvic/bladder pain and came up with several references to interstitial cystitis which I had never heard of. The symptoms described were my symptoms pretty much exactly. The information also said that people often go back time and time to the GP with pelvic pain but that the condition often goes undiagnosed. This is largely because the symptoms are very similar to those of bladder/urine infection and when the standard tests fail to show infection, the GPs say "there's no infection so nothing to be done". That too mirrors my experiences with this pain over the past few years. It seems that interstitial cystitis is thought by some doctors to be an autoimmune condition and, since I have other non-joint manifestations of RA, that too seems to fit with my situation.

I think I need to mention this to the GP as a possibility when I go on Wednesday, but just wondered if anyone has any personal experience of this condition which they are happy to share (either on main forum or by PM). Any information would be much appreciated.

Thanks again peeps for all your support recently.

Tilly xxx

Comments

  • frogmorton
    frogmorton Member Posts: 28,050
    edited 30. Nov -1, 00:00
    Hi Tilly

    No experience sorry....

    BUT it would be great to find out what it was and is there treatment available for it???

    Will you have the confidence to admit your 'googling escapades' :wink:

    Hope you do get some replies from those more useful than me.

    Love and hugs

    Toni xxx
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    First of all, I know nothing about it. I've done the bog-standard cystitis three times in my life and would prefer not to do it a fourth. In fact, I had to google 'Interstitial cystits' as I'd never heard of it. It seems it's a chronic form without the bacterial infection to start it off. I do hope you don't have it, Tilly.

    A spot more googling produced 'some of the foods that the Interstitial Cystitis Association says may cause bladder irritation.'

    •Aged cheeses

    •Alcohol

    •Artificial sweeteners

    •Chocolate

    •Citrus juices

    •Coffee

    •Cranberry juice (Note: Although cranberry juice is often recommended for urinary tract infections, it can make IC symptoms worse.)

    •Fava and lima beans

    •Meats that are cured, processed, smoked, canned, aged, or that contain nitrites

    •Most fruits except blueberries, honeydew melon, and pears

    •Nuts except almonds, cashews, and pine nuts

    •Onions

    •Rye bread

    •Seasonings that contain MSG

    •Sour cream

    •Sourdough bread

    •Soy

    •Tea

    •Tofu

    •Tomatoes

    •Yogurt

    Experts suggest that you do not stop eating all of these foods at one time. Instead, try eliminating one at a time to see if that helps relieve your symptoms.

    In your situation I think I'd be hoping for an alternative diagnosis :roll: I wish you luck, Tilly.
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Tilly,

    Sorry, I've no experience of this either! But I may have found something useful for you from NIDDK, which I'll PM.

    Best wishes,
    Phoebe
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    I have heard of this before, it is often suffered by lupus patients. I will try and get some more info and PM you.
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Oh Tilly sorry I cant help, you poor thing that sounds so painful, like SW I have the bog slandered one and that is bad enough, I will be interested to see what treatments there are.
    And I do hope you get some relief very soon xx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Thanks peeps for all your messages.

    Will reply properly a bit later on, but really do appreciate you taking the time to post.

    Love Tilly xxx

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