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3 months ago I started with symptoms of cystitis but all the tests are negative. Yesterday the gynecologist just touching me told me I have interstitial cystitis. What should I do? Thank you.

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  • Posted

    Hi Rosa, sorry to hear that you've been told you have IC. I'm

    afraid there's no easy way to treat this and hopefully your gynaecologist has given you some useful advice. There is a lot of help on the IC Network website, including an app you can download to

    your mobile phone which is very helpful when you're out and about. There are lots of different medications you can try on prescription, so best to be guided by your doctor with that, but often the best thing you can do is by diet. Everyone is different but the main culprits for causing bladder inflammation are citrus items (esp oranges), alcohol, chocolate, caffeine, fizzy drinks, cranberries and artificial sweeteners. even decaf drinks have some caffeine in so naturally caffeine free drinks like redbush tea are best. You can buy tablets called 'prerelief' that neutralise acidic foods on the occasion where you might eat the wrong things, also 'quercetin' is a natural anti-inflammatory if you get the ester-C one. (both available on Amazon) Drink plenty of water or milk to calm bladder down and make the urine less concentrated - i know that doesn't seem like what you feel like doing but it really does work - start slowly by sipping more during the day, not gulping down loads so that your always rushing to the loo! We should all aim for light straw coloured pee! As i say, there is lots of help out there - just got to take care its from reputable sites. i hope you have a caring gynaecologist who will support you as its a horrible condition to have to cope with. Finally, it can often be caused by low estrogen levels (mine was) in which case HRT, either systemically or by vagifem pessaries would probably make a huge improvement in your symptoms, as low estrogen makes the bladder wall thin and more liable to inflammation and irritation. Hope this helps!

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  • Posted

    The very first thing I did was read everything I could get my hands on. Second get a list of the foods and drinks that you can have and stay away from the ones you can't. It will be a long process but totally worth it.

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  • Posted

    Hi I've been going back and forth to my urologist because they don't know what's wrong with me. they now saying I might not have IC but a long standing bacterial issue. I've been sent to to gycnologist to get checked. waiting on a appointment in November. d mannose really helps me it attracts e coli bacteria and seems to help with the burn.

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  • Posted

    Hi Rosa

    Sorry to hear you are going through this.

    I went through the same thing for a long time until I too was diagnosed with IC.

    For me I have been put on amitriptyline.

    However what has been the best move was controlling the symptoms with my diet.

    Anything acidic will trigger the pain. I used this website

    http://www.iurologist.co.uk/wp-content/themes/ypo-theme/pdf/ic-diet-sheet.pdf

    I also find sleeping on my tummy helps to relieve the pain in the night.

    I hope you get some relief

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  • Posted

    Hi Rosa, I had problems for ages before I sussed out that it was IC. I know what you are going through as the pain is terrible and no one seems to realise what you are putting up with.

    Then 7 years ago I started taking Pukka Aloe Vera and Serrapeptase and have been free from pain since (NO I am not an Agent for these products ha ha)

    Try taking Serrapeptase tablets for inflammation - wonderful to clear up bladder inflammation (whether its cystitis or any other problem). When I had a flare up I took 2 tablets every 2 hours during the day.

    Pukka Aloe Vera tablets are very good but not the ordinary Aloe Vera - must be freeze dried and only the inner leaves used - Pukka are perfect. If you buy them from USA they cost over 100$ but they are available online from Naturisimo for about 15 pounds a bottle with free postage.

    You must stop taking anything with Cranberry in and never use Green Tea proucts as they irritate the bladder - these are ok for ordinary cystitis.

    Good Luck

    Jean

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  • Posted

    Hi Rosa, I had problems for ages before I sussed out that it was IC. I know what you are going through as the pain is terrible and no one seems to realise what you are putting up with.

    Then 7 years ago I started taking Pukka Aloe Vera and Serrapeptase and have been free from pain since (NO I am not an Agent for these products ha ha)

    Try taking Serrapeptase tablets for inflammation - wonderful to clear up bladder inflammation (whether its cystitis or any other problem). When I had a flare up I took 2 tablets every 2 hours during the day.

    Pukka Aloe Vera tablets are very good but not the ordinary Aloe Vera - must be freeze dried and only the inner leaves used - Pukka are perfect. If you buy them from USA they cost over 100$ but they are available online from Naturisimo for about 15 pounds a bottle with free postage.

    You must stop taking anything with Cranberry in and never use Green Tea proucts as they irritate the bladder - these are ok for ordinary cystitis.

    Good Luck

    Jean

    Report Reply
  • Posted

    Hi Rosa, I had problems for ages before I sussed out that it was IC. I know what you are going through as the pain is terrible and no one seems to realise what you are putting up with.

    Then 7 years ago I started taking Pukka Aloe Vera and Serrapeptase and have been free from pain since (NO I am not an Agent for these products ha ha)

    Try taking Serrapeptase tablets for inflammation - wonderful to clear up bladder inflammation (whether its cystitis or any other problem). When I had a flare up I took 2 tablets every 2 hours during the day.

    Pukka Aloe Vera tablets are very good but not the ordinary Aloe Vera - must be freeze dried and only the inner leaves used - Pukka are perfect.

    You must stop taking anything with Cranberry in and never use Green Tea proucts as they irritate the bladder - these are ok for ordinary cystitis.

    Good Luck

    Jean

    Report Reply
  • Posted

    After my previous diagnosis I did another urine test (the laboratory did not want to do it! why???). I went to the doctor with the results - the bacterial presence is negative (less than 1000). When I mentioned ic the doctor laughed saying that no one can make a ic diagnose without a specific examination. he said me that bacteria are hidden (????????). I do not understand what it means and has not proposed anything except antibiotic (4 months with 1 Monuril a week). Today I think to contact a urologist to make an appointment and in the meantime I do not know whether or not to do this therapy. Currently I do not have more burning but I always want to urinate (two drops). I have the impression that the bladder empties well and I can sleep at least 6 hours per night without peeing. Suggestions? Tips? Do you know urologists in London?

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