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adrenal cyst

Posted , 12 users are following.

boogagirl41
boogagirl41

Following an mri which confirmed a cyst in my left upper abdomen, I am due to have ct scan to determine its origin. My consultant think it's likely from the adrenal gland.

Has anyone had an adrenal cyst? Mine measures roughly 7cm by 5cm. I feel pain in rib , flank and now back .

Very scared and looking for some information

Thank you 💗

1 like, 61 replies

61 Replies

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  • ginger22
    ginger22 boogagirl41

    Posted

    My adrenal benign cyst was discovered about ten years ago.  I had a CT scan for another reason and the cyst was found at that time. I was told that it was no problem. It was smaller than yours but I had some symptoms.  I went for consultation for my hypertension and found that its cause is hyperaldosteronism.  This is a extra excretion of cortisol (adrenal gland hormone) which causes my body not to remove sodium.  The result is that I retained so much fluid that my blood pressure rose to dangerous levels if I ate more than about 500 mg. or 1000 mg. of sodium in a day.  There are medications to control this but I could not tolerate them.  Three years ago I was referred to a specialist surgeon who removed the left adrenal gland with a laparoscope.  It has helped a lot but I still must watch my sodium intake.  I was told that I might have recovered from the aldosteronism if I had had the surgery earlier in life (I am 74).  This is a relatively rare condition but more cases are being identified in the last few years.  Try a specialist at a university hospital near you.  If you reply to me I can tell you who I know to find out more.  You can call and they can direct you. I don't know what your symptoms are but you can search "hyperaldosteronism" and "adrenal gland disorder" on the internet. 
  • ginger22
    ginger22 boogagirl41

    Posted

    I meant to tell you that the condition is called Conn's syndrome or Conn's disease.  It was only discovered in 1954 and I went years with a lot of GP's and other kinds of specialists telling me not to be concerned about my symptoms.  I am in the US and I know there are blogs and discussion groups about this condition on websites here.  It was good to find the discussion groups but I wish I had gotten that support before I was diagnosed by a specialist (finally!!!).
    • boogagirl41
      boogagirl41 ginger22

      Posted

      Hi Ginger22, I don't think I have Conn's as I don't have the symptoms.  My sypmtoms were mainly just pain around the ribcage area.  I now have pins and needles in hands and feet and burning sensations in my limbs.  I will be scanned in December as my consultant is happy to watch it.  It's not a pheo and he says he's not concerned by it.  Hope you are well now.
    • Merryl
      Merryl boogagirl41

      Posted

      Hi, just an update. I had a letter to say I am having an MRI scan on both adrenals next month. This came out of the blue, I had no idea I was having this done. I haven't had the results of the 48hr urine test yet. When I had the urine test they also did a blood test that had to be sent straight to the lab, the nurse said she haven't done this test before. It is probably for people with this condition and isn't done very often. How are you feeling now?    
  • jasmin2629
    jasmin2629 boogagirl41

    Posted

    Hi. I was diagnosed last 2008 w/ pheochromocytoma,both of my adrenal gland have a tumor, then May 2009, i undergo for laparascopic adrenalectomy, as of now, I enjoy my life, although my left adrenal still here w/ me smile but thanks God, my bp now is not that high like before, but still sometimes, i feel pain on my lower back, and also muscle pain, but its tolerable, And only taking 1 maintenance.. 
  • ginger22
    ginger22 boogagirl41

    Posted

    I see you and some others are just finding out about your adrenal cysts.  Although it is in the United States, NIH (National Institutes of Health) is currently recruiting for a study on benign adrenal cysts.  It is my understanding that all expenses related to this study will be paid.  This may not include transportation.  If surgery is recommended, I think you can be referred to another study.  Usually these studies at NIH are recruiting worldwide.  Anyway, it might be something to check out.  The information is below. It would be good to read all the information after the Protocol listing.

    https://clinicaltrials.gov/ct2/show/NCT00005927

    Emis Moderator comment: I have removed the article that was pasted in full here. Please do not paste whole articles in posts. You can add a link to it and this will be approved as long as it complies with rules for posting links. If it doesn't then links can be exchanged via the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • ginger22
      ginger22

      Posted

      Okay.  Thanks for explaining the policy.

      Clicking on the  link will bring the reader to all of the information I was trying to post. Copy and paste works too.

      I hope this will help someone.

      Washington D.C. is a beautiful city to visit and, having been a consultant there on ethical issues, I can tell you that study participants are treated very well.

  • pinky00
    pinky00 boogagirl41

    Posted

    Hi know this convo is a little old but ive got similar symptoms to you, pain under left rib, fatigue, lightheaded and sweaty in the morning.

    Ive suffered for 18 months with no diagnosis. My pain seems to be brought on by eating. Coincidentally i am also from swansea!

    Did you have pain after eating? At the moment they have me down for a colonoscopy and im seeing the gastro consultant in november!

  • lisa1659
    lisa1659 boogagirl41

    Posted

    boogairl, I am having pain in my back. Had a CT Scan, and along with arthritis, a !!
    • lisa1659
      lisa1659

      Posted

      Don't know what happened to my post but, as I was saying, a small cyst was found on my adrenal gland too. I did some research and found I demonstrate the symptoms of Cushing's Disease. I am nervous but I refuse to be scared! God has US and we're gonna fight this together! I've got your bacK! I'm new to this forum but I will get any postings by you and others that are suffering.....BE STRONG! 

  • leighton70607
    leighton70607 boogagirl41

    Posted

    Dear Boogagirl41. I had an adrenal cyst anout the same size THAT yours is. I had to have an adrenalnectomy...(i.e) have one of my adrenal glands removed. As it was causing me a whole lot of Pain. And i was told that anything cyst over 6 cm needed to be removed. That was about 4 years ago. The surgery was very Painless. I had an non-evasive surgery. Adrenal cyst are more common tjan you may think. But over time, they can cause a lot of medical problems. I would suggest you find a good Surgeon and have the cyst removed. Dont be Scared. You'll be ok...

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