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Update

Posted , 6 users are following.

Ace0310
Ace0310

Evening everyone,

Its me again, writing this late at night to update you all and try and get a little bit of advise as once again the internet has very little to offer.

I saw my surgeon last week who went through the whole procedure and said i should be having surgery thjs month (thank god), expected hospital stay for min a week and then explained further treatments, complications etc which im sure you are all aware of. I have also been given some medication to take to reduce the cortisol in the meantime.

The advise i am looking for is whether or not the stomach issues i am having is related to the cushing disease caused by the large tumor in the pitutaity gland or not. Ive explained my stomach problems before but now they are that extreme to the point i have contemplated several times going to my A&E.

Firstly i wake up and i have no issues, then gradually throughout the day i start getting cramps and pains by the time it gets to the night i can barely eat although i am hungry and in sever pain. The lower part of my stomach has the typical Cushing weight gain whereas my upper stomach is flat and i can see my ribcage, it hurts to lie on my side and even bend over i feel like ive done a 1000 sit ups. Im now also getting red stretch marks which i never had before. The cramps are so bad i take strong painkillers go to sleep and wake up to repeat the whole process again. Has anyone else experienced this? Im scared it's something else causing it.

I have an app with the hospital wednesday to discuss the tablets he put me on so im going to bring it up then, i dont want to go a&e etc if it is cushing related but if not it needs solving as its becoming a massive problem that's being going on for months now! Alongside all the other rubbish symtoms.

Any advise would be greatly appreciated.

Thank you

Stacey

1 like, 12 replies

12 Replies

  • camilla123
    camilla123 Ace0310

    Posted

    Hey Stacey, 

    Really sorry you’re getting these pains. I can’t say I’ve experienced any of these symptoms, I do however have the stretch marks but no pain...? Definitely bring it up!! 

    I hope you start feeling better! 

    Xxx

  • camilla123
    camilla123 Ace0310

    Posted

    Also, 

    Can I ask...are you based in the UK? Which city are you having your surgery? I’m having my IPSS on Weds/Thurs (they’re keeping me in overnight) I’m London based and it seems that it takes a lot longer here and the disorganisation is unbelievable!! 

    • Ace0310
      Ace0310 camilla123

      Posted

      Hello

      I am UK based in im from Birmingham. I had the IPSS test but was a day case i didnt stay jn overnight.

      Good luck with the test isnt as bad as it sounds just very boring lying on your back for 2/3 hours after!

  • courtnay26
    courtnay26 Ace0310

    Posted

    I found out today that high cortisol can

    be related to fatty liver disease

    with me I got gallbladder issues.

    Gallbladder attacks are usually because

    of hign fat foods.

    you could try avoiding high fat foods like steak, cheese

    etc...

    also you could check with the doctor if it is your gallbladder

  • courtnay26
    courtnay26 Ace0310

    Posted

    It sounds to me like you could be having gallbladder attacks and I've had to go to the hospital

    where they give you morphine

    the thing is you don't want to have any other surgery

    before you get your cushing's tumor removed

    if it is from a tumor

  • patty44596
    patty44596 Ace0310

    Posted

    Prior to my surgery I had very bad acid reflux.  Anything I would eat would irritate it.  I would have very bad pains and  felt nauseous (not wanting to eat).  After surgery this all went away.  I gained 70 pounds prior to surgery and I felt like my chest was so full.  My ribs hurt too.  Bending over to tie my shoe was impossible.  After surgery I noticed immediate relief.  I think because all the fluid reduced in my chest.  You should talk about gallbladder too because it is very common with this disease to have stones.  The striae(stretch marks) is a very common symptom of Cushings.  We can share our experiences but you should always speak to your doctor about what is going on.  Good luck with your upcoming surgery.  Keep us posted as to how you are feeling.
  • vicky61456
    vicky61456 Ace0310

    Posted

    Hi I am a bit surprised that you can see you rib cage as cushings usually makes you look 8 months pregnant and starts from under the bust.  Apart from that I did have all the same pains as you and eventually had my gall bladder out after several trips to A & E.  There is no scientific proof that this is related to Cushings but it wouldnt surprise me at all.  Bring it up asap as it may be something that needs dealing with prior to your op.  Let us know how you get on and take care.  The stretch marks are very common but they will fade.  Some of us use Bio-Oil but always check it is suitable for you first.  Gall Bladder pain is excrutiating, you have my sympathy!

     

    • Ace0310
      Ace0310 vicky61456

      Posted

      It is really strange my lower stomach is full of stretch marks and i do look pregnant but the upper part of my stomach is flat and you can see my ribs.

      I am going to enquire tomorrow morning about gallbladder, i just want some resolution to it all and i dont want to go a&e for them to say its cushing.

      Thanks for your reply!

  • camilla123
    camilla123 Ace0310

    Posted

    I hope they can sort it and good luck with it all! I’m going tomorrow night overnight to have my IPSSon Thursday morning...SO SCARED!! Xx
    • vicky61456
      vicky61456 camilla123

      Posted

      Don't be scared, it will soon be over!  We are all thinking of youx

    • courtnay26
      courtnay26 camilla123

      Posted

      maybe you could ask the doctor for an ultrasound

      of your gallbladder , liver

      fatty liver is associated with Cushing's

      I would stay well hydrated and stay away from fats

      and you should be able to eat properly

      best of luck

  • courtnay26
    courtnay26 Ace0310

    Posted

    hi Stacey

    I just thought of this

    but it would be worth having a scan of your adrenals too

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