Follicular cystitis... Can anyone help?

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Hiya, can anyone help? I was recently diagnosed with follicular cystitis, I have had water infection symptoms since I was a child, but as I have got older these symptoms have got worse. I am now 26. The hospital are baffled and I am waiting to be referred to a specialist. I the meantime I am in so much discomfort and pain, and can't find anything that seems to ease. I've even downloaded a bladder friendly diet to see if that shall helpband bought manuka honey to see of shall help, nothing is working yet... does anyone know anything about this or what I can do to try and ease symptoms?

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  • Posted

    Hi Claire, all I know about follicular cystitis is that it’s caused by long term infections.  Have you or are you taking antibiotics? Have you been given a corticosteroid like prednisone? You need to be seen again by a specialist but as the problem is bladder inflammation the IC diet should help you.  It certainly won’t do any harm. You can download an app from the IC Network which is really helpful regarding foods to avoid etc 

    I’m sorry you’re having such a rough time.  It’s a rare condition but I understand it can be treated so try to be positive (hard I know because any bladder problems are totally miserable and mind consuming!) look it up on reliable sites and gather all the info you can and don’t give up until you get some real help.  Wishing you well.

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    • Posted

      Hi, thank you for responding, I have not been given anything yet, the doctors I have seen are shocked at the severity of my follicular cystitis and have referred me to to a specialist. They say there is nothing they can recommend to give me at the moment so I just got to wait. Antibiotics for infections do not seem to help me anymore. I feel like running out of options and waiting to be referred could take months.. it does get me down but thank you I'll try and stay positive and keep researching. smile

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    • Posted

      Hi Claire.  I’m sorry this is awful for you! They should have done an urgent  referral or at least asked them how they should treat you in the mean time! I know urology have a longer waiting list time than some other departments but you are an urgent case.  As soon as they discovered the problem you should have been given treatment which is usually strong antibiotics and a corticosteroid - if you are given this, the pain should subside quite quickly I would think.  Keep phoning the hospital dept you’ve been referred to and ask them if they have a date for you yet - they may be able to make the appointment while you’re on the phone so at least you’d know how long you have to wait - my hospital is happy to help in this way.  If it’s too long to wait, go back to your GP and ask them if they’ll request an urgent referral as you can’t cope with the pain a second longer!  I broke down in tears once with my IC pain in the surgery - I was in hospital that same afternoon! They need to know how bad this is for you - I hope you find a sympathetic ear! 
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    • Posted

      Thank you, I shall keep pestering, i think this is my only way forward. I know the feeling, I have cried so many times, especially when have flare up and have no idea how to manage other than just wait for it to ease off. Ill try this manuka honey in the meantime
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  • Posted

    Hi Claire sorry you've been having this pain. What's the pain like. Do you feel daily background pain which flares up time to time? Have you been refèred to a urologist yet? I've been experiencing pain for 2 years. Doctors are unsure what the issue is and all results come back normal with an odd minor infection. Have you googled symptoms of painful bladder syndrome or I C

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    • Posted

      Hi sandy, i am sorry you've been feeling pain too, it's not nice and affects daily life. my pain feels similar to a water infection but I have pelvic pain daily, severe pain when my bladder has urine in it and frequency to wee quite alot. I have been referred to a specialist but am waiting at the moment. I have exhausted every link for IC and thought could manage it but when my biopsy come back and they diagnosed me with follicular cystitis I cant seem to find much about it, and the doctors seem baffled too. So feel a little lost as to what to do to try and ease my symptoms. Nothing seems to be working for me at the moment.

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    • Posted

      Hi Claire have you tried D Mannose. I normally take 3 tablets a day. If the flare is bad I take a tablet every 3 hours. You can buy it from Amazon. Are you taking probiotics? I take one every morning which helps with gut bacteria.
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  • Posted

    Hi Claire, I don't have your condition but do have IC. as well as following the IC diet I take 2 over the counter medicines which really help the bladder pain.  Firstly Prelief with every meal which helps every day secondly AZO Max Strength which helps when pain is bad.  It is also used for UTI pain.  You can buy both on Amazon.

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    • Posted

      Hi, thank you. I shall have a look into those and give a try. I'm willing to try anything at the moment that shall ease my symptoms. I didn't even know foods could affect my bladder before but I'm figuring out foods that make me bad and keeping away from them with the IC diet. Drinks I struggle with as even water agrovates my bladder.

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    • Posted

      Hi Claire. Don't drink tap water. I only drink filtered of bottled water. You need to stay away from all acidic foods. Even some veg like onion and tomatoes. Some milk and cheese also. Drink loads of chamomile tea...it helps.

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  • Posted

    Hi Claire I was diagnosed with severe follicular cystitis this week after biopsies done during a cystoscopy. I am on long term antibiotics and starting a cycle of weekly bladder treatments infusion of something I’m not sure about. They  fill your bladder and you have to hold it for an hour 😧

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    • Posted

      Hi Janet, you are the first person I have come across who has this. Funny enough I an on antibiotics now until I get to see the specialist, I have finally has a date of October 2018. I have heard of the chemicals that the object into the bladder, but was told there was a lack of funding for it here. I have cysts in my bladder too and have been told by cutting these out it really helps with the symptoms. I shall see what they say. I'd really appreciate you letting me know how you get on. I'm finding it so hard to find anyone who has the same and seeing what treatment they have. I hope they can help. smile

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