Endometriosis UK

Cystoscopy to diagnose IC 🤔

Hey ladies,

I had a cystoscopy and I was told I definitely don’t have IC even though I have all the symptoms. I’m still convinced I have it and I’ve been misdiagnosed.

After a bit of research and contacting the IC association in America, I’ve found that many people say IC can’t be diagnosed with a cystoscopy and there’s other means of diagnosis that are better.

Has anybody else been told that a cystoscopy can’t diagnose IC? If so, what are the best ways to diagnose IC? I’m going to my GP tonight to discuss it and ask to be referred for a second opinion at another hospital so any advice would be great 🙂 thank you! xx

4 Replies
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Hi,

I was told when I had my cystoscopy that I didn't have interstitial cystitis but it needed to be investigated more before they could give me a diagnosis.

I had to go on a special diet to identify it there were certain foods that made my symptoms worse. ( which there were) After this they then put me on special tablets to prevent me needed to urinate as frequently as I was. I had urodynamic tests done after this and they then put me in bladder instills. I asked what the diagnosis was but they gave me a vague one and said I’d only get an IC diagnosis if they took biopsies of the tissue inside my bladder, which they didn’t want to do as it would make the symptoms worse. I’m still waiting on a diagnosis for my issues but they keep finding other complications with me. I’ve asked for a second opinion now from a female urologist to see if she knows more than my current one. This is how it’s been for me, I’m based in England so I’m not sure how it works in different countries.

Are you based in America?

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Hi 🙂

I’m in England too. I can’t believe how difficult and frustrating it is! My doctors are passing me onto Bowel specialists because that’s what the surgeon suggested but I’m convinced it’s IC or at least Gynae/urology related.

I’m starting to worry that maybe I have some serious like cancer that’s going untreated because they’re not doing anything to help me find the problem anymore 😞

Hopefully I’ll be able to get more tests done to see if it’s IC or not.

Thank you for sharing your story xx

Reply

Hey,

It’s incredibly frustrating. I can understand some of the steps that they need to do before a diagnosis but at the same time they seem to avoid doing anything more to get it.

Don’t think like that, stress can make bladder issues worse. If it was something like cancer they should of been able to identify it when they did your cystoscopy. It’s easy to fall into the trap of what if it’s this or that, I’m guilty of that too. I just try and keep my mind of it now as much as I can. My doctors have prescribed antidepressants to try and keep my mood up and not get too depressed about it. Have you considered doing that?

Have you seen a bowel specialist previously?

X x

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When my endo/ bladder symptoms were getting really bad I paid to see a private consultant. I looked online and found one who had a good working knowledge of women’s health with urology. After being completely messed about by the NHS her knowledge was such a relief and during my first lap she also carried out a cystoscopy, biopsy and bladder distension and I was given my IC diagnosis. Years prior to this I had another flexible cystoscopy where they didn’t diagnose a thing/ didn’t understand why I had my symptoms.

I guess my point is that perhaps it is worthwhile to pay to see someone privately who has a much greater expertise (they could even refer you back into the NHS to carry out any procedures though this is not always guaranteed). As opposed to putting you through the discomfort of all those tests again and not to get your diagnosis from it?

Best of luck xxx

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