Cyst pain

[LunaAbby]

Hoping to see if anyone else has experienced this. I have pain just below my right rib. Started 2 weeks ago. It feels like a stitch. It bursts to breath in, yawn etc.

After a few days I went to hospital while on holiday. Was told bloods etc clear & take pain killers

last Saturday I spent the night at my local A&E. Was given morphine & Buscopan

Bloods again ok

Ultra sound showed I had multiple cysts. 2 of which are 8 & 9cm in diameter. The doctor said he would talk to a surgeon and contact me if they would do anything

I called them - to be told nothing to be done

The pain was not as acute but still there when taking deep breaths

Tonight it's worse again & hurts when I move. I'm in agony with v sharp stabbing pains.

Can cyst pain fluctuate like this? How hard should I push to get this fixed?

Thank you all!

[DerekField]

Hi there. I am having mine deroofed on Thursday next week. Overnight stay and keyhole. Similar to you, pain. No longer able to sleep on my right side and feels like I have an object obstructing my breathing, back ache, shoulder ache and very tired. My liver is functioning correctly. I have not had the pain you have experienced but I feel sick and bloated and my stomach is much larger than it should be. I would keep asking what they can do to help. There is the option of the cysts being drained but I was told mine had to come out. Go back to your GP., explain how bad things are and see if you are successful. Good luck x

[Researchfreak]

hi lunaabby. I have large cysts on my liver have had them for many years. They give me pain , take pain relief as required. Had private meeting with top liver/transplant surgeon from Freeman hospital Newcastle. He said try to live with them as removal could open Pandora box. They don’t like touching liver unless it’s really necessary. If you want treatment I would suggest you find the best liver person where you live and they should be able to advise. Good luck.

[Babygoaf]

Hi LunaAbby

I have a 19cm cyst but no pain, the consultant in Edinburgh is reluctant to operate despite extended stomach area. He said he would defenestrate it if it starts causing pain. He too said it could create more problems than it solves but after reading various medical papers online 90% of operations are successful 🤷‍♀️ good luck x

[clairey27]

Hi LunaAbby,I have polycystic liver disease and get lots of pain. The pain I get can vary and I'm on lots of strong medication to keep it at bay.

I had a laparoscopic deroofing about 8y ago and it took 6months to recover and for the pain to have improved. I then had xray guided drainage of the cysts, which really helped reduce the pain for a couple of years.

I have asked to have this done again but the radiologists have refused due to the liver tissue being very thin and the risk of a bile leak.

Unfortunately this means that my only other option is to go on the transplant list and I'm going to make that decision next year.

I would recommend that you get reviewed by your local liver team and also see if you can increase your pain-killers.

I hope you get the pain sorted soon.

[Archie1962]

hi, I had surgery for removal of 3 cysts. Largest was 20cm. I had same intermittent pain you describe but they only operated due to size of cysts and don’t generally unless really causing a problem.

I would say ask for 2nd opinion but try and avoid surgery unless needed. Took me a good six months to feel reasonably normal and have scars now too even though was key hole.

I also had recent scan that showed I still have more cysts albeit not growing any bigger.

My pain was uncomfortable but bearable. Only had surgery as was considered necessary due to size.

I would avoid taking too many painkillers as equally toxic to liver. Drink plenty of water, eat healthy, try and keep weight down, exercise and hopefully will improve

[TR1954]

I have a 24cm x24cm x 18cm and have been on waiting list for 3 years. I've been seen physically once and 2 MRI's. It grew 6cm all round in 2 years. Causes distress, get no relief. My abdomen is huge, I rely on laxatives and my breathing is now affected. They want to try Scleropathy as too near vital arteries ? To operate. It's horrible so I feel for you.

[LunaAbby in reply to TR1954]

I'm so sorry to hear this.

I walked to the train station yesterday & was so out of breath.

Everyone is telling me to 'get it sorted' but it's just not as easy as telling the surgeon to fix it!

I really hope you get sorted soon

[TR1954]

Exactly! All my lot are saying chase it up. GP won't tell a surgeon to get a move on! I feel so huge it's a bloody misery!

[LunaAbby in reply to TR1954]

It's so frustrating. I've only had this for a few weeks! I'll just have to tell family it's not hurting otherwise they'll never stop!

[TR1954]

Trouble is it IS hurting. I've been going to my GP about every 3 months just to say it's bigger, my quality of life has completely deteriorated. I was very active, gym, volunteering etc (retired 4 years ago but I didn't feel or look old) and it was 2021 I first went to GP. Small bump then. Got a shock when the Consultant phoned me with results of MRI to say it was the biggest hepatic cyst he'd ever seen. Got my first pre-op assessment in 2022 and fully expected to have a deroofing procedure very soon. Nothing. A year later - no contact - another pre-op assessment and again no op. I finally met the Consultant in early 2024 and he never even examined me! Just said he'd put me on the list! Since then it's got worse as all the other organs are being squished! Very annoyingly it was picked up on a scan when I had a womb cyst removed 7 years ago! Nobody told me and it was 12cm then. I phoned the Secretary to the Consultant about 3 months ago as my GP suggested and she told me that if I get really poorly phone NHS24 or get an ambulance to take me to Aberdeen (32 miles away). Crazy. You have pain and that is bad. I just have intense discomfort, can't sit or sleep properly but little pain. A twinge now and again. Bloody awful waiting lists.