Interstitial Cystitis

[Disney89]

Hi everyone.

Has anyone else with endo also been diagnosed with interstitial cystitis.

Had specialist appointment with the gynecologist yesterday and my laparoscopy is a 12 month wait list so they are looking into the possibility of also having I C

He’s suggested I try D Mannose. Has anyone tried this and had a positive experience?

[Whoisthis]

Watching with interest as I have this.

[Disney89 in reply to Whoisthis]

How long have you had this for?

[bellah2020]

I have both, and have now got my IC under quite good control. I had bladder installations which line the bladder to prevent any acids etc harming it, and now take 'prelief' before consuming alcohol or spicy foods

[Disney89 in reply to bellah2020]

Did you have any side effects with D Mannose at all? I have ibs and seems to be after one tablet it’s causing me issues 😔

[Blobby20 in reply to bellah2020]

Hi. I also have IC and am currently trying Amitriptyline 25mg which I don't think is helping, I've been on it 5 weeks now. It makes me so sleepy and constipated! My specialist has mentioned that the next step is instillations, how often did/do you have them and did you find them effective straight away? x

[Disney89 in reply to Blobby20]

I am already on Amitriptyline for the pain and have been on it for a while. Found it hasn’t helped. I haven’t had the confidence to try the D Mannose again because of the issues it caused with my IBS. At the moment I can cope with the pain at work but with my ibs I can’t be out of the house. So I am a little bit stuck

[CandleCat in reply to bellah2020]

Hello, did you get the bladder installations and prelief on the nhs or private?

I’ve been trying to get my diagnosis for over 1 year but appointments all delayed due to covid . They think I have both IC and endo though.

[lemon_mint]

Hey, Disney89 I have read quite a bit on the topic as I currently have symptoms that I am not sure are purely endo-related and resemble cystitis in terms of pain but not in terms of urgency and the need to go to the loo and nothing is showing in the dipstick or culture urine test. I got a referral to see a specialist but that's a few months down the line (waiting list). What I have is a constant dull pain that feels as if it's in the bladder area and does not fully clear. Sometimes it feels "tender" when I urinate, sometime it is ok.

3 things I've learnt based on the info I could find on the Internet were:

- a healthy bladder is not sterile as it was thought before and there all all kinds of bacteria living there, some of which do not show on culture and more advanced pcr tests can detect bacteria that were not identified in the "previous generation" tests (I found a company in the US that does UTI urine testing by post but have not ordered it - see the next point)

- not all bacteria that can be identified by PCR is "harmful" / causes cystitis so that test I mentioned above may not give you the right answer what's causing the symptoms

- an "old school" urine test (fresh urine micrsocopy) where they take a fresh urine sample and examine it under microscope is apparently a good way to establish if there is an infection.

In my case I am unsure if it's a UTI or endo so I am keen to explore it futher.

liveutifree.com/uti-test/

another article I found which does not seem to be on the website any longer - but found its cached version webcache.googleusercontent....

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