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Bladder Health UK
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Cytoscopy findings

Hi everyone

Just looking for a bit of advice. I have suffered with pelvic and lower back pain for 6 years, amongst some other symptoms. For years doctors thought I had endometriosis or just thought it was all in my head especially after 2 laproscopy surgeries found nothing. My latest consultant asked me to write down all my symptoms and when he saw how many were urinary related he asked to do a cytoscopy during my next laproscopy. These procedures were done 3 weeks ago and they found bleeding in my bladder when it was in flatted, suggesting intisitial cystitis.

I know a little about this condition but the idea that my bladder is behind everything is a new one and I'm not sure what to expect. My consultation is in 10 days to discuss the findings but I was just wondering if anyone had been through something similar or had any idea what the docs might do as a next step?

I have no life at the moment as can't work due to pain and the symptoms and am stuck at home a lot so I am desperate to get back on my feet. My gp has me on gabapentin and a&e visits for pain management which isn't ideal. Sorry for the long story but I'm finding it difficult getting my friends or family to understand how I'm feeling and I'm anxious as to what to do next.

Thanks in advance.

3 Replies
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hi,

i suffered with lower back pain and other symptoms for over 10 years. i always knew it was something to do with my bladder, but i was ignored each time i visited the GP with varying symptoms, frequent trips to the loo at night , severe pain in lower back if i had to hold my bladder. also when ever i had to do a urine test it always showed traces of blood and like yourself it was due to my bladder wall bleeding when full. i was finally diagnosed with interstitial cystitis in 2011 and have been having a instill every month since,. it has really helped with the majority of symptoms. i went to the urology ward to have the treatment .but i know self treat at home. it is a bit of a faff each month, i had to learn to catheterize myself then insert the instill. i appreciate how hard this illness is to explain to other people. i have actually been bent over double in so much pain in the past. but i feel i now manage quite well. hopefully you will have good treatment from your urologist, now that you have been diagnosed. they may try you on different type tablets, but they were now good for me and the instill is a lot more natural treatment. Hyacyst 120mg/50ml. let me know how you get on and if i can be any help please just ask..

gill

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Thank you. I'm sorry to hear how you have suffered and it took a long time to get diagnosed. It is really hard getting people to understand and I often feel really lonely. Any tips on getting the people around me to understand what this is all like? I don't get as much support now as they are saying I'm always sick so I just have to get on with it. But they don't seem to see that sometimes you still want support or someone to listen and it gets pretty scary when the pain is full on. I've spent nights rolling on the bathroom floor sobbing and my partner just goes to sleep.

GP's have been really difficult getting help from because they kept telling me it was in my head or I was addicted to pain killers. What is an instil please if you don't mind me asking? I'm glad it helps you though. Fingers crossed my doctor will be able to help me too. I'm finally hopeful for the first time in a long time as I'm desperate to get back to university and finish my degree.

Thank you for replying and sorry for the rant. This has all just been a long and frustrating experience and I don't know what will happen next so it's all got me a little anxious.

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morning, don't worry about ranting it's good to release your frustrations. Especially when you feel No one is listening or understands. When I look back I had problems since I had my daughter and that is over 28yrs ago. I ended up just thinking it was me, something I would have to live with. So I am still glad of the diagnosis it makes such a difference when you can put a name to It and then you can tell people what you have. Maybe get some leaflets and let your loved ones read them. A instill is were you have a catheter put in to drain your bladder. Then a syringe of the instill is then put into your bladder. I always thinking of it as having the walls of my bladder lined to help protect me and the pain is managed better. They say the toxins in your bladder leak into your body and this is why it is so painful in your lower Back, pelvic area, top of legs etc. The instill coats the bladder lining, sort of waterproofs it for the month. If it is offered to you. It is done usually 6 doses over the 6 weeks and if you have any relief it is then offered as a monthly treatment. Bear with it, and give it time. I always now when I am due as the pains return each month. But the relief the rest of the month is great.

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