Ascites advice

[Swimbuddy]

I am currently waiting to have my abdomen drained but it is taking sometime to get the appointment. In the meantime I am in a lot of discomfort and my legs and feet have swollen so I can't walk too much. Plus I get terrible cramps at night. Have you any tips to help alleviate the pain? Thank you lovely ladies xx

[SuffolkJen]

Hi Swimbuddy

I can’t help as I’ve never had ascites but it sounds awful how it’s affecting you 😩 I just wanted to send a virtual hug and hope your appointment comes through ASAP xx Jen

[Swimbuddy in reply to SuffolkJen]

Thanks Jen xx

[Gonewith]

Hi, when did it statred? Mine statred with a stomach ache and then my stmach got bigger and bigger within two month before I had the drainge done. I felt like Im going to burst, got big as like six month pergnant. Then 7kg was drained. Couldnt eat.

[Swimbuddy in reply to Gonewith]

That sounds very like my situation. I feel like I am six months pregnant and about to burst. Just wish my appointment would come

[Morini]

I had ascites and 5 or 6 drains. I was advised to go to A&E if I was struggling and pre-booked appointments were taking too long.

[Swimbuddy in reply to Morini]

I really don't want to go to A&E. Last time I had to wait 17 hours on a chair in a corridor but that might end up being an option

[mrstadpole]

I have a 24/7 phone number for oncology.I phoned up and was admitted straight away for a drain.It is too painful to wait for an appointment x

[Swimbuddy in reply to mrstadpole]

I hadn't thought of ringing the Oncology line. You're right, it's too painful to wait for an appointment x

[candyapplegrey in reply to Swimbuddy]

Good idea to call them. Let us know how you get on. Fingers crossed.🤞🤞

[candyapplegrey in reply to candyapplegrey]

Actually, I know my team would just say go to A&E - not acceptable really. Good luck! xx

[Swimbuddy in reply to candyapplegrey]

That's what I was told but that will definitely be a last resort as the last time I had to go I had to wait 17 hours in a chair in a corridor!

[SopSinger]

They shouldn't just leave you with ascites, it needs draining. Ring the oncology hotline or go to A&E (and yes, I appreciate that A&E is not a nice place to be, but you really need to be seen).

[Swimbuddy in reply to SopSinger]

I have chased up my CNS and will continue to do so this week as loathe to go to A&E as previous experience not good

[Cinemalover]

Hi, I'm a bit late replying, but as the other ladies said you shouldn't be waiting for an appointment if at all possible, I had ascites also but the minute they started draining I felt instant relief and my appetite came back. I hope you have made some progress and I wish you all the best xx

[Swimbuddy in reply to Cinemalover]

Thank you x

[Towergirl]

I was just like you. Appetite disappearing as did energy. A week later Gp did bloods and on CA125 being over 1000, referred me to hospital.

3 weeks later I had a biopsy and drained 7 + litres of ascites at the same time., what a relief .

They made me wait for biopsy, while I bloated to pregnancy size of twins, this made the biopsy easier for them to do.

Try your GP. Mine did manage to speed up my biopsy by a week. Or your specialist nurse, anything to speed up scan’s or drainage etc. otherwise you’re treated as an outpatient. Xx

wishing you all the best xx

[Swimbuddy in reply to Towergirl]

Thank you. I have chased up today but still no luck. Will keep on at them this week. I am not at twin size but definitely six months pregnant!

[candyapplegrey in reply to Swimbuddy]

Any luck yet? xx