Anyone else been diagnosed with cystitis cystica? Many years of suffering.....

[25clai]

I've suffered with a bladder prone to infection since I was approx 7. Symptoms have varied as has intensity of the years of the pain in my bladder. Many cystoscopies, urethral dilatations later, I am still looking for ways to help me to manage symptoms. I am now post menopausal. Menopause was not a walk in the park for me and intensified problems. Last diagnosis from Kings specialists was cystitis cystica. My symptoms are similar to interstitial cystitis. I have adapted my diet to be less acidic which has limited success. d mannose made me ill. Any ideas, anyone?

[icrelief]

If you are able, I recommend you see Miss Claudine Domoney at Parkside Hospital. As for management, if it's similar to interstitial cystitis, ask your healthcare provider about taking an antihistamine like Atarax, Lyrica may help with pain and physical therapy can help ease your symptoms. A great physiotherapist in London is Maria Elliott. I've also used a hypnotist to help me with the diet, her name is Fiona Nicolson.

Best wishes!

[Hidden]

Have they ever isolated a bacteria. If so is it always the same bacteria they find. Perhaps it is worth seeing a gynaecologist for their opinion.

[25clai in reply to Hidden]

I've never had a certain bacteria identified. I spent many years on profylactic anti biotic so, when the symptoms flared up, cultures never identified the bacteria. I have similar symptons to IC. I have been told the lining of my bladder is prone to 'cysts' which make it easier for bacteria to settle. I have seen many urologists and gynae urologist who have been unable to give me more insight. I have tried all sorts of treatment, cystitat in fills, which didn't work for me . Thank you for your ideas and comments

[Alaine1 Administrator]

Hello

I have IC which as you say is similar to your condition and also get UTIs frequently so can fully sympathise especially with the pain. I also know how frustrating it can be. I have come close a few times to asking to have my bladder removed! Have you ever had any improvement in your symptoms and pain? Is there anything that helps with the pain? TENS, heat patches etc? Is it worth keeping a detailed pain and symptom diary?That way you can highlight any possible triggers which hadn't been obvious. I still keep one after the specialist suggested it and I also take it to my appts to refer to if necessary as it can also be useful for the specialists treating you. I'm just wondering if you've tried elmiron which is a medication used for IC. It isn't routinely prescribed as its used mainly for refractory cases in the UK and has to be prescribed by a urologist. It is expensive for the nhs to prescribe but maybe worth a try? Have you tried other bladder instillations? I'm on my second one after Gepan didn't work and have Hyacyst monthly - it might have to be changed again but will see. Have you been to a pain clinic, they may also be able to help especially with the pain side.

As Icrelief has mentioned I also see a women's physio as my pelvic floor muscles have become overly tight due to the pain from IC, endo and adenomyosis. I can definitely feel the difference in how my pelvic floor feels. I also use a combination of approaches for these conditions including seeing a physio, dietician, urologist, endo specialist and their specialist nurses. The physio I see privately in London but she's fantastic and it's worth every penny. I also use the headspace app for mindfulness with Andy Pudicombe (sp?) which I find useful especially when stressed and was recommended to me by the endo specialist who uses it herself

I'm sure someone else will be able to suggest other things that might help you

Alaine