Polycystic Liver Disease

This is my first time here as my GP has given me a guarded diagnosis if PLD. I have lots of cysts on quite a few of my organs. My kidneys, Liver and Spleen mainly. I have only one functioning Kidney and have lots of problems with my urinary tract, a lot of stomach issues but recently 2 of my liver function tests have been high. Had an ultrasound and they found the cysts have grown and my liver has become enlarged. I often get a constant pain on my right hand side like a stitch and occasionaly turns into excuciating stabbing pain for a short period of time almost like a kidney stone moving. I am being referred to a gastroenterologist to see what treatment is available. If anybody suffers the same condition I could do with some support as GP is not really able to understand what Im describing and just tells me to take paracetamol for the pain. I also get full very quickly and have constant indigestion. Is this all linked? Is the kidney problem problem linked too?

Sorty so long just many questions not being answered and very scared at the moment

[GrandmaDylan]

Have you asked at the hospital how long the waiting list is? I was told the waiting list was 22 weeks to see a gastroenterologist and was frantic with worry. I paid privately to see the consultant I would see at the nhs hospital and saw him the the same day. It cost me £180 but he put me on his nhs list and arranged bloods, scans, gastroscopy and colonoscopy and various other scans. It was the best £180 I have ever spent. Hope you get some help soon. Deb

[Hidden in reply to GrandmaDylan]

I live in a rural area but tried to make an appointment today through the booking system and had no luck. I suffer from autoimmune disorders; RA, sjogren's syndrome and also have kidney problems so am unable to work and therefore can’t afford to go private although if push comes to shove I could borrow the money from my brother. I've had lots of blood tests and an ultrasound done by my GP. If you think going private would be worthwhile l might well do that as I suffer from agrophobia due partly to having Ménière’s disease so could be less stress ful too

Thank you for replying I feel quite frightened about the diagnosis, it is causing ame a lot of discomfort and pain so at least I know the probable reason that is the only relief gained. I hope you get some help and the treatment isn’t too heavy on your system as I read you also suffer from MS which I am aware is a real daily struggle to live with as you never quite know how you are going to be from day to day. Something people who haven’t the experience never will understand the relentless cruelty of autoimmune conditions.

[GrandmaDylan in reply to Hidden]

I know it's a lot of money but I certainly got a jump on various tests long before I would have done waiting for an nhs appointment. I have a very limited medical cover with simply health. I get money for dentistry, glasses, physio and 75% paid for a consultation up to the value of about £120. It's quite reasonable and if you got cover you can make a claim quite soon after taking out the plan. Google it and see what you think. I get new glasses every year. Take care. Deb

[clairey27]

Hi there,

I have polycystic liver disease too and have had lots of pain in the past.

Sorry for not replying sooner, but I have only found posts today from other people who have polycystic liver disease.

I see the liver team at Kings and also saw the chronic pain team for a while.

Before I had surgery to deroof and drain 10 of my 100+ cysts I was on paracetamol, gabapentin and tramadol.

I also had the stabbing pains in my back but my kidneys are totally fine and trigger point steroid injections stopped this pain.

After recovering from surgery, which took a while I was able to stop taking the tramadol completely and now I take paracetamol and gabapentin once a day unless I have a flare up.

Good luck with getting the help you need. There is no way that paracetamol is enough analgesia, so I would definitely recommend being referred to a pain clinic.

Claire

[Ian57 in reply to clairey27]

Hi claire i see that you were able to get your cysts deroofed like yourself i have loads unsure how many, my surgeon did do a laporscopy but unfortunately wasn't able to do a deroof for fear of causing further damage,

[clairey27 in reply to Ian57]

Hi Ian,

I had the deroofing done laparascopically. The cysts do refill again after a while but it gave me some relief for a few months.

Claire

[Hidden in reply to clairey27]

Hi Claire

They are thinking of deroofing some of my cysts, can you explain what the procedure was and how long it took to recover. My liver has become very enlarged because of the cysts and I get some quite a bit of pain in my side like a continual stitch. Do you have any complex cysts or ate they simple ones. Also have any of your other family got the condition - my Mum has but have not had any problem except pain. Sorry for all the questions, i have been in contact with anybody else except Ian and my consultant-has no experience.

[clairey27 in reply to Hidden]

Hi there,

I had the deroofing done laparascopically at Kings. They cut open 10 of my larger cysts and drained off around 1litre of fluid. It took about 6months to see an improvement and then that only lasted 6months or so. However, I have managed to reduce the painkillers I need significantly unless I have a flare up.

The cysts have since refilled and my doctors have told me the only option left is to have a transplant, but I'm not wanting that just yet.

My mum also has the condition but does not have any symptoms .

I hope that helps.

Claire

[Ian57 in reply to Hidden]

Just reading your post regarding family ive had all my family done sons daughters their kids brother and sister cousins so far my first cousin is the only one eho has the cysts and only a few at that