Already three years. Time seems to fly by yet at the same time recovery goes so slowly. I drew the ropes in Cushing’s colours to symbolise my expected feelings now I’m in remission, very much the same daily, in contrast to how remission actually is. Some days you’re way up, some days you’re way down.

Life after Cushing’s is not easy, mentally or physically. If you have a good medical team you’ll have been warned before surgery that it isn’t just fixed as soon as surgery is done. There’s the cortisol withdrawal which is likened to heroin withdrawal and then your body has to heal all the damage that’s been done. As most people have had Cushing’s for years before surgery, this damage is immense and takes years to heal. On top of that some things just don’t seem reversible, or at least not fully. There are studies that show muscle weakness often improves for the first two years of remission but then will actually get worse again, though perhaps not to the same extent.

Recovery is made difficult by two things. One is that everyone thinks “Oh the tumour is out, you’re cured!” and this is unfortunately not the case. You feel pressured to be back to ‘normal’ very quickly and may push yourself to act like it even though you’re in pain. Combining that with the pressure of having to remember to updose your replacement steroids if you are doing something to stress your body and it’s hard to feel normal. The other is the sheer uncertainty of everything.

The lowering of your cortisol can unmask aches and pains that just didn’t seem to be there with active Cushing’s. Cortisol is a steroid and as such can have an anti-inflammatory effect so whilst it’s causing damage it can also hide that very same damage. However it’s also very possible to have other issues that are not related to Cushing’s and so we often end up wondering what has been caused by what and will it ever improve. I’m going through it myself as my hips and knees were incredibly painful following my pituitary surgery and although they’re mostly improved I still get crippling pain in my left hip. I’m undergoing physio and scans to check for numerous possible issues and try to strengthen the surrounding muscles but nothing seems to be helping so far. One possible issue they’re looking at can be caused by overuse of steroids (which Cushing’s Disease is similar to in a way, just caused by a tumour rather than me ‘using’ steroids), too many lipids (fats) in the blood stream causing circulation issues (again, a possibility with Cushing’s) or loss of bloody supply due to a blood clot. My DVT was in my left leg so this may have caused it, if it is this issue. It’s difficult to know if this is something that we should continue to investigate or if it’s simply one of these leftover symptoms that will never fully heal.

The other part of uncertainty is worse for those of us who had a pituitary tumour. Cushing’s caused by an adrenal tumour rarely returns as the surgeon will remove the entire gland so it usually only comes back if you’re really unlucky and get another tumour on the other gland. Pituitary however is a different story as it’s still the same gland left in our heads and therefore still has a chance to regrow a tumour, especially if the surgeon has missed a couple of cells when removing it. Cushing’s Disease has a thirty percent reoccurance rate. This often makes us quite paranoid when in remission. The instant I gain any weight I panic and think it may be back. I’ve been in this state for over a year actually as my weight was completely stable for ten months yet has been steadily climbing again for the last fourteen months. My tests are still showing low cortisol but when Cushing’s Disease returns it is often cyclical so I simply worry that they’ve done my tests when I’m in a low cycle and not high.

Sadly I’ve had to put in a complaint as my concerns are being completely ignored. I’ve spoken to the Pituitary Foundation and they have recommended my thyroid, growth hormone and sex hormones be checked, along with doing a 24 hour urine cortisol test but my endocrinologist just keeps doing SSTs. I will keep pushing for answers.