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My First Bladder Installation for Interstitial Cystitis

Interstitial Cystitis

I started my first treatment for Interstitial Cystitis today. I had my first of many bladder installations and although I’ve had mild tummy pain since, it was nowhere near as bad as I’d imagined it would be.

They put a thin catheter into my bladder and then filled my bladder with a special concoction of medicines. These medicines will gradually form a new protective barrier in my bladder as my natural barrier has worn away due to all the inflammation and constant UTI’s since having pelvic surgery in 2015.

Feeling out of control

I must admit, when I saw the huge syringe of medicine coming towards me my heart skipped a beat! The thought of having a medicine put inside you feels very different to swallowing a pill or medicine. You are completely out of control and at the nurses mercy. 

My nurse specialist was so lovely though and really put my mind at ease. The Urology team are fantastic and some of the most supportive and understanding specialists and nurses I’ve come across. I suppose they have to be, nobody is happy about getting their bits out for all to see! It takes an amazingly compassionate and empathic team to help patients feel at ease with these sometimes awfully embarrassing treatments.

Cooling and soothing

Once the medicine was going in it didn’t burn or feel like acid like I’d been panicking about, it felt really cool and soothing. I’m not sure if mine had a bit of anaesthetic in but I couldn’t feel it in there after that and held onto it for a good hour! I felt a bit sick afterwards and apparently this can happen. They kept me in clinic for 40 mins after the procedure to check I wasn’t reacting and then let me go.

I’ve got to go back every week for four weeks and then go for maintenance installations every month. It’s a bit of a commitment but if it works and gets rid of the awful tummy pains then it will be worth it! 

Worth it

If you’ve been offered this treatment and are a bit scared like I was, please don’t worry as it’s absolutely fine. Yes it’s uncomfortable and slightly undignified but if it helps, it’s worth it!

Have you had this treatment before? How did you get on and did it help? I’d love to hear from fellow IC sufferers.

Jen

xxx

3 Replies to “My First Bladder Installation for Interstitial Cystitis”

  • I’m curious as to what they used. DMSO is kind of on its way out, but it’s still very helpful for some. Heparin with lipocaine is often used and can even be taught for you to do it at home. I hope this will help you. I find they help me. I typically have them under anesthesia when they are “stretching” my bladder as well. I do have Hunners ulcers. I hope you continue to find these treatments successful! I have. Wishing you my very best!! ❤️

    • Thank you, I’m sorry you suffer with this too. I had the new version, they said it’s hyloronic acid? I was going to have Cystistat but they did the new one. I can’t remember what it’s called as I’ve only managed one so far! Unfortunately I’ve had two bladder infections since and horrid pain. It could be connected as one of risks but now being treated for IBS and having a Celiac test in two weeks! The pains been worse than normal which has scared me off a bit! I’m supposed to be going back next week to finally have the second dose but not sure I can face it!! Hope they can helps you keep pain free and well too. xx

  • I’m curious as to what they used. DMSO is kind of on its way out, but it’s still very helpful for some. Heparin with lipocaine is often used and can even be taught for you to do it at home. I hope this will help you. I find they help me. I typically have them under anesthesia when they are “stretching” my bladder as well. I do have Hunners ulcers. I hope you continue to find these treatments successful! I have. Wishing you my very best!! ❤️

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