Hi there - copied this from main forum into here to say hello and introduce myself.
I’m new here! I did used to belong to the pituitary foundation forum but it seems to have been inactive for a few years so hoping I can find help and support here (and offer some to others if needed!)
I was diagnosed with Acromegaly in my early 20s and had two lots of surgery but have had residual tumour plus symptoms since. Now in my early 40s they’ve realised tumour has been steadily growing (explains why the drugs aren’t really helping) and that I’m still quite symptomatic.
I’ve a new endocrinologist who is amazing, especially as my previous one dismissed a lot of my symptoms and didn’t notice the growth (don’t get me started on his approach!).
I’m now in the process of awaiting more surgery which may be in next few months. I’m strangely much more scared of the surgery this time round, not least because the risks are higher due to them having to navigate scar tissue from previous surgery. But I don’t feel I can share these anxieties with my family as they’re already scared enough so I’m trying to be the brave one!! So hoping there may be some people on here who I can share these worries with.
I also have various symptoms which I find hugely embarrassing which again I’m hoping for some support with as I feel quite alone and emotional!
Anyway, thanks for letting me join!
Hi Acromegaly Patient and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm not a member of this group but I'm sure those that are will be happy to answer any questions you might have and to share their experiences with you. Responding to you will 'bump' your post back to the top of the discussion list where it'll be more easily seen.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
