Being faced with a pituitary condition, with possible life-long implications can be puzzling. It is neither universal nor predictable.
Many people with a pituitary condition have a relatively normal life post-diagnosis but many will struggle for a variety of reasons. Even if hormone levels are restored to ‘normal’ levels with adequate suppression or replacement regimes, there may not be a parallel feeling of being fit and well again.
“I wish I could carry on with my life as normal.”
“I had my tumour removed two years ago, have not had radiotherapy and am not on drugs. I am ‘cured’ but still get extreme fatigue on any exertion. I have just returned from holiday and am exhausted. I wonder if it is a thing I will have all my life… it is an uphill struggle.”
Newly diagnosed patients
Being diagnosed with a pituitary condition can sometimes take months or even years, causing suffering physically and emotionally.
Although rarer, there are some people who might be diagnosed suddenly due to a much more rapid and dramatic onset of symptoms. A sudden diagnosis (and possible emergency treatment) can of course cause shock and trauma.
Often, the word ‘tumour’ will be used when you are diagnosed - this term can be a great shock, unless it is explained to you properly. Hearing the words ‘brain surgery’ or perhaps ‘neurosurgeon’ may be very frightening for you. Add to all of this, learning that you will have a long-term (or life-long) condition, which may mean you having to take medication for the rest of your life, this could all very well have an immense impact emotionally on you and your family.
Clinicians may not always understand, nor recognise, the possible trauma experienced by a patient who they have recently diagnosed. They may simply not have the time within the clinic to address your fears, or perhaps because they are familiar with pituitary disease, they do not think of a diagnosis as being something that anyone should be unusually traumatised about. However, feeling shocked, frightened or anxious are common experiences which many others felt when they were newly diagnosed. You even might be feeling so shocked that you just want to get out of the clinic, without attempting to ask any questions.
We recommend that you read our booklet Psychological impact of a pituitary condition: diagnosis and treatment which aims to offer strategies to deal with these emotional issues.
For patients facing surgery
The mere thought of having to have surgery in their brain can of course be concerning for many patients. From what we hear from other patients, who have had their surgery, is that generally the operation and the experience surrounding it, was not anywhere near as awful as they had anticipated.
A specialist pituitary surgeon will be operating on you (a surgeon who is used to carrying out pituitary surgery) plus a team of nursing staff, who are expertly trained, to care for you before and after your surgery. If you have any questions about your operation, the surgeon or nurses will answer these. Please see our booklet called Surgery and radiotherapy too.
Some patients mentioned that following their surgery, a few things which concerned them were:
- Fear of damage to the head (banging it or dropping something on it).
- Questions such as, can you get water up your nose (in the bath, or shower); can you swim, and how soon; can you fly abroad; can you resume your usual sports?
- Fears that any headache, even a twinge, may be a sign of regrowth of tumour.
- Reaction of others to you (knowing that you’ve had a ‘brain operation’) - are you ‘all there’; will you look or act differently?
- There may be problems within your relationship, due to one or more issues (e.g. loss of libido, lack of energy, physical changes).
You can contact The Pituitary Foundation for help at every stage of your journey. We have a list of trained peer support volunteers who are patients (or carers) themselves and so have direct, personal experience of your particular condition. Some patients find it helpful to attend a Local Support Group meeting so they can talk to fellow patients who also have personal experience.