Has anyone been diagnosed with endometriosis in the liver?

[VEMS17]

I have severe endometriosis that affects several organs. Following a recent laparoscopy (have had several over the years), my consultant has found something on my liver that could also be endometriosis. I understand endometriosis in the liver is rare and wanted to find out if anyone else in the UK has been diagnosed. Many thanks

[nikkimatt2019]

Hi I'm not sure with your comment about livker they havent got that far with me im just constantly being left I've been recently diagnosed with 2 double thick longing of endometriosis as well as polyps back also. I've been suffering with pains for many years this was going on when I was around 18/19 years old. I kept going to gp because I was in so much pain and bleeding and massive clots it took so long for them to diagnose me, back in 2018 I was told I had cancer at time before I had my partner and friend and adoptive nana I shut of and thought this cluldnt be real then I finally went back and then I was told and diagnosed with 6 massive polyps size as golf balls if it was back in 2019 with my partner saving my life I would been dead and had cancer spread through my body and that was what a gp told me and my partner anyway had operation to have them removed when I was discharged from hospital they said I was ment to have a check up after 2 weeks they never even done that. Anyway I was ok for a while then I had pains again and this time stronger went for more scans was told I had polyps again. Then went for more scans was told all of sudden they came out. At these times I was still suffering server pains and bleeding, had more scans again they said I had polyps back nothing was done I was left and just constantly giving tablets. And so goes on with scans after scans. Then all of a sudden I was having more stronger pains I didnt know what the hell was going on so they reffered me to mri scan 2022 was told I have 2 double thick lining of endometriosis and was ment to go for next stage including an operation and nothing has been done I've been chasing up and nothing no response. So today I've rang gp chasing up now I have to ring doctors tomarrow to book telephone call for thos to be chased up for my next stage. I've looked up on nhs sights and it's a possibility if it dosent get treated theres possibility I could end up with cancer also as it's a high risk I have. No body has heard of this my polish friend she had endometriosis but wasnt the one I have we are all scared and confused. My moods are sky high it makes you feel like crap specially with the bleeding and suffering with the pain constantly I think personally they should do more research and make this more awareness of this as alot of us is suffering and alot of us is ending up with more damage while we are left till it's to late. I'm sorry but if alot of us women has this taken serious and hospitals done there job properly and gave us the treatment this could of avoided alot of damage and stopped this going further.

[VEMS17 in reply to nikkimatt2019]

So sorry to hear all that you are going through. I know a lot of us have experienced similar delays. I count myself fortunate that I have had a good gp and endometriosis specialist but not everyone has been so lucky. All I can advise is to keep pushing to be seen and ideally get a referral to a BSGE centre, where they specialise in dealing with endometriosis. There are also really good support groups available (depending on where you live) - I know there is the Facebook group for Hertfordshire and Bedfordshire. Good luck with your journey and I hope that you are able to get some relief soon.

[nikkimatt2019 in reply to VEMS17]

Thank u its nerve wrecking and frustrated I was diagnosed at young age with everything and now this I'm only turning 26 this march and still going through it all I've been constantly chasing up I've never been lucky with doctors or hospitals they have just neglected me so many times or just wiped me under the carpet like I'm nothing. I dont bother with family or have nothing to do with them but this has ran through family and they all ended up with cancer and died. It's not fair with a hell lot of us women going through this and being left to the point more damage I done to are bodys they need to make this more aware and they need to do more research do are treatments instead leaving us till it's to late. Its horrible being young as well goibg through all this worrying specially when ur on ur own. I only have my partner and 3 friends that's about it my adoptive nana is in carehome and she was in state when she found out as well she used to be a nurse. I'm just more frightened as it feels like it's got worst and they still ain't going anything.

[VEMS17 in reply to nikkimatt2019]

And covid hasn't helped, it's caused a number of delays. Not sure if you have been seem at a BSGE centre but I would certainly be asking for a referral. There is then a process you have to go through, so they can assess the best way to manage/treat the condition - the time delays can be frustrating but are all part of the process. I have found the support groups useful, even just to know you are not on your own.

[nikkimatt2019 in reply to VEMS17]

I'm still waiting for next stage. It's very frightening I've been waiting for a long time I was told what would be the next step but been waiting still. I've got to ring gp back tomarrow so they can call me for us to sort this out and go for the next stage reading everyone's comments at the moment seems like alot women had suffered more damage for being left. But because I'm high risk of cancer also I'm really scared where they have left longer and feels like more things is going on inside so may have spread or got worst. We are keeping eyes on signs of cancer at the moment but I scared just incase I may not make it out alive. I've always been unlucky I have bipolar and other mental health problems also with alot going on as well my heads just in a pickle and feels like I have bo one or no one cares at all so I'll die alone.

[Mavis88 in reply to nikkimatt2019]

Hi Nikki, my heart breaks for you I completely know how you feel. I have been in a very similar situation. I was going to the doctors for roughly 5 years after my son was born with pain, irregular bleeding ect they just keep fobbing me off too. Then end of 2019 finally a doctor that listened sent me for a smear they picked up cin 2 and cin 3 pre cancer as it could only been done while I was asleep due to pain and area being too bad they picked up cancer I was told while I was alone coming round from my op which I then bled out and was rushed to another hospital . Long story short I am clear for now although high risk for next 10 years. I knew things still wasn't right and continued to push and had a laparoscopy op in may to be told I have endometriosis in 5 different areas/organs they only managed to remove a tiny bit from my womb. I have been left since chasing and chasing. Yesterday after waiting since july I managed to speak to a bgse consultant who has advised me I will need another op and he will be going in blind as the previous doc doing the first lap didn't take any photographss or anything only written discription of what was found but he does sound like he knows abit more. Definitely ask your doctor to be referred to a bgse centre and get them to do it as urgent. If you ever need to talk just drop me a message. Good luck 🤞 they really need to improve on care xx

[nikkimatt2019 in reply to Mavis88]

Hi I'm so sorry about that I hope you can get yours sorted and I've been chasing them up not had good experience with gp or hospitals it's been frustrating as bleeding loads in hell lot pain on both sides and travels under my ribcage also. Thank u I will keep in touch with u. Xx

[Mavis88 in reply to nikkimatt2019]

It's a nightmare Nikki, so bad we all get left to suffer with terrible care. The specialist I spoke to yesterday was basically telling me no quick fix and a future of operations. He said they are really behind to with back log. Keep pushing Hun ino it's hard you have all us to talk to remember your not alone even when you feel it xx

[nikkimatt2019 in reply to Mavis88]

I've tried ringing today they just giving diffrent stories and apparently I have to wait 4 months now because they got back logs

[VEMS17]

I know it can be frightening, especially when you have to wait but you are not alone. People do care and it sounds like things are in motion, it might just take a bit of time. Hopefully you won't have to wait too much longer.