Hi, I wouldn't worry, I work in the NHS and belive you me doctors cannot give you a diagnosis and then say there looking for something eles,what doctors do normally is do all the tests then if there 100%sure that's when they do more tests, my results come back with in 2 days and yea I was panniking and I asked every question going, my consultant told me not to worry unless anything changes I'm being scanned every 8 months ultrasound and I've also demanded a ct x

Hi there I recently went to the one-stop clinic after having a haematuria, had it before when it was really bad and they couldn’t find anything wrong then. Now they found this what they call a birthmark or collection of blood vessels on my left kidney, now I read the letter that has been sent to the doctor and it is  a AML After having a pituitary tumour Removed just two months ago,I panicked and started looking on here. However I see it is benign and from what I read as long as it doesn’t grow too big it’s not to be worried about, however does explain the pain I get sometimes on my left side. They never did explain  why I had had a bleed so I guess it is the AM L. Certainly wasn’t an infection, It does say on the letter to the doctor they should make sure it’s followed up in a year. Knowing how the doctors usually forget I am going to make sure it’s in my diary for next year, experience of showing me these things can alter. I was think. Of the old saying God helps those who help themselves, Doctors are always busy, recent experience has shown me to make sure I get heard ,  I also think that it is natural to Google and I am glad that I do otherwise I wouldn’t find these helpful pages. Good luck to everybody. 

Hi Coco

I am interested in following all the comments on here abiut AML'S.  I was diagnosed in 2009 with one on the left kidney, and told they are rare and that nothing would be done until they reach 4 cms.  I had an ultrasound every six months and it was growing in size,  then ultrasounds went to annually.  In 2016 I was diagnosed with another AML on the right kidney, though much smaller in size.  The ultrasounds have now gone to bi-annually and goalposts have been moved in that nothing will be done until AML's reach 5 cms.  Everything I have read says treatment should be offered when they get to 4 cms as they become less predictable and can bleed.  I have been ok healthwise but am due to go again for bi-annual check in November when I will ask many more questions.  The only symptom I have is that most days now my legs and ankles are quite swollen (old ladies legs and I hate them!) differing by as much as 1" around the ankle towards the end of the day.  I take a diuretic but will be discussing this when I go because it looks like I am holding a lot of water so need to find out if AML's are possibly causing this.  I will report on here the outcome of my checkup in a few weeks.

Hi all,

I was diagnosed with an AML 2017 after a scan for something unrelated.  It was on left kidney and measured at 4cm.  However, I am now experiencing occassional UTI symptoms - stinging when urinating - but also pain in my left side and ribs.  Has anyone else with an AML experienced this sort of pain?  Also I have not been scanned since May 2018, do you think I should push for a follow-up just to check size? Thanks for any advice :)

Hi everyone,

Found this thread when googling AML. Hope you don't mind me joining in.

I have recently had embolisation on a 13cm AML on my right kidney, starting everolimus next week when I see my specialist. I also have two more AML on my left kidney measuring 5+7cm. AML were discovered when I had a scan on my gall bladder  a couple of years ago.

im wondering if anyone struggles to sleep because of their AML. I am only able to sleep a few hours before I'm woke with crushing pain on my right side, and have to sit up for a good hour before I can go back to bed. 

Hi MummyPetal,

Welcome to our forum.

I am not a doctor and do not have AML.I am a breast cancer lady.

If you have not been scanned since May, 2018 and are still having symptoms, I would certainly push for a follow up. In fact, I am surprised that you haven't been given an annual follow-up. Ask whether or not this is necessary at your next appointment.

Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Kind regards,

Jolamine xx

Hi  A few months after I give birth at the age of 35 I had a renal colic and went to A&E. I was told I had kidney stones which I ignored. In 2017 I had a CT scan following a recurrent UTI  and some back pain. I found out it wasn’t stons It was a different kidney problem, right side 5.4 cm AML and left side  11 mm AML. Neither has changed in size since 2013. This was confirmed when I had my scan in 2019. I have had my kidney function monitored regularly and this year I was offered a  treatment (embolisation). However, as I wasn’t in pain and the procedure has risks the consultant decided not to perform the procedure. He has told me to come back if it becomes painful again. Otherwise, he intends to see me again in 2 years. I am now thinking about 
percutaneous radiofrequency ablation as I started getting  back pain again. This procedure seems to have less risks for the kidney. 
I must to admit that I have always been slim and had a unhealthy diet, although I have always exercised eg. lifting weights, running. I have managed this even after I found out about my AML in  2017 

Hiya,

I was told I had a hernia for almost 2 years. Pain was coming and going but it has become more consistent so I took myself off to the GP again in late October - early November. I met with another GP who done full bloods (they were fine), but also referred me for an ultrasound. 

The ulstrasound results came back "possible stones'.....I was further sent for a CT contrast scan and have recently received a letter to say it is most likely an angiomyolipoma. The tumour measures 29mm, The MDT will look at my scans and then I will see the consultant after that. 

It is all so worrying. But, yes, I have pain from under my ribs on my left to lower left abdomen. 

Hope you feel better soon. 

Megs

Hi

I am a 31 female and I was diagnosed with a 1.8cm AML in November as I went to A&E as they suspected kidney stones. No stones but an AML. 

I have been experiencing left back pain for 2 years and then since October I starting getting abdominal pain. The pain is mainly dull but it is also sharp at times. I have seen a consultant but waiting for a CT with contrast to see what to do next. The consultant said he is surprised that an AML of that size would cause as much pain as it is but there's no other explanation for this pain. I'm hoping to get it embolized or removed to help with this pain.