Living With a Pituitary Condition

What are you looking for?

Work and School

Employment

Having a long-term conditions may impact your ability to work, however employers should be able to provide relative adjustments to support you.

School and College

Living with a pituitary condition can sometimes be challenging with regard to going to school, homework, exams and going on outings.

Medical

Advice for Hospital Stays

You may have to have some short stays in hospital, so we provide some useful tips on how to prepare and what to take with you.

Infertility

Some pituitary conditions can cause problems with fertility and conceiving.

Male Hormones and Fertility

If the pituitary gland does not product enough or any gonadotrophin hormones, this can affect fertility in men.

Prescription Charges

Free NHS prescriptions are available to people who have a number of medical conditions, including some pituitary conditions.

Health and Wellbeing

Coping Emotionally

Being faced with a pituitary condition, with possible life-long implications can be puzzling. We provide support to help you navigate this.

Relationships and Communication

With the onset of a long-term condition, relationships can change because of the demands the condition imposes on you and your family.

Relationships, Sex and Fertility

Living with a pituitary condition does not have to be a problem when it comes to relationships.

Relaxation

Relaxation and recovery is an important aspect of living with a chronic condition, and you may find that you need to do this more than others. We provide some tips to help you relax.

Sport and Physical Activity

There are many benefits to exercising, including improvement to physical and mental health.

Weight Control and Nutrition

Weight can be a common issue for people with pituitary conditions, causing distress and frustration, even though you may be eating a healthy diet.

Clothing and accessories

Identification emblems

In the event of a medical emergency or an accident, identification emblems can provide essential information about hidden medical conditions.

Large Size Clothing

Some pituitary conditions, such as Acromegaly, can lead to body changes and some patients struggle to find clothing and shoes to fit.

Useful Products

When living with a pituitary condition there may be some items that are useful to you. This page outlines some of these.

Finance and planning

Benefits and Rights

Anyone on low income or living with a disability may be entitled to benefits to support their living costs.

Planning for the Future

Planning for the future is always important, but when you have an underlying illness its especially important to be prepared.

Caring for someone with a pituitary condition

Caring for a child with a Pituitary condition

If your child has a pituitary condition, you need to know how to live with giving them additional care day to day. Here is some information and resources to help.

Caring for an adult with a Pituitary condition

Some adults may need additional support from someone they live with. We can provide support for people caring for others with a pituitary condition.

Travelling

Driving Restrictions

Many people with pituitary conditions may have no driving restrictions, however the DVLA should be notified of any condition you have over 3 months that could impact your ability to drive.

Travel Information

When travelling with a long term health condition there are some additional ways that you need to prepare.

Travel Insurance

When travelling abroad you should always ensure that you have travel insurance, this protects you if you need medical treatment abroad.

Patient Stories

Sam’s story: waiting years for an acromegaly diagnosis

Sam share's his experience of living with acromegaly, after going to doctors for years with unexplained symptoms.

Trevor’s story- Successfully removing a pituitary tumour

After ready Amy’s story- a 10 hour operation, I felt inspired to share my own story, which started off very similar. In 2022 4 weeks after a violent altercation, I awoke with a severe headache. Having abstained from alcohol since the January of 2022, I had drunk a glass of wine the previous evening and […]

Jhori’s story- My prolactinoma journey

My name is Jhori Morris, and I would like to share my Prolactinoma (Pituitary Adenoma) journey in hopes that it may help someone else who may be experiencing some of the things I experienced. I stopped taking oral contraceptives around November of 2022, and that’s when some of the symptoms started to arise, but I […]

Risa’s story: Living life to its fullest with Acromegaly

My name is Risa and I have Acromegaly. It was October of 2018, as I nervously awaited the results of my brain MRI. I remember utter disbelief washing over me as my Endocrinologist informed me that I had a large tumour on my Pituitary Gland and furthermore, it was causing a rare disease with a […]

Mark’s story: Life after undergoing a craniotomy at 14

Mark shares his experience of undergoing surgery as a child after discovering a pituitary tumour and how this has impacted his life.

Edy’s story: Seeing clearly again after a non-functioning adenoma

It felt like I was wearing sunglasses, all the time. Whether I was inside, outside, raining, sunny, everything was very dark. And I remember being outside and lifting my glasses, thinking they were sunglasses, because everything was dim.

Steven’ story: A Cushing’s diagnosis after unexplained weight gain

Steven shares his experience with Cushing's after having unexplained weight gain.

Serena’s story: Surgery for prolactinoma

My name is Serena I am currently 23 years old. My story is quite peculiar and not typical story for those diagnosed with Prolactinoma. This is a benign tumour in the pituitary gland it is non-cancerous. On the 5th of May 2020 at 19 years old, I was diagnosed with Prolactinoma. I remember this day […]

Amy’s story: The first person with Type 1 Diabetes and AVP-Deficiency to hike Mt. Kilimanjaro

Hiking to the peak of Mt. Kilimanjaro has been a dream of mine for many years and on Sunday 25th February 2024, at 7:15am, my dream became a reality. This makes me the first person with Type 1 Diabetes and AVP-Deficiency to stand at the summit, but hopefully not the last! I was diagnosed with […]

Aurora and Jenna’s Story

Aurora's journey started at just 6-years-old

Ann-Marie’s Story: Prolactinoma and Fertility

September marks 16 years since I had my operation to remove my Prolactinoma, and I thought now would be a good time to share my story. In 2007, having been trying for a baby for over a year, I was sent to have tests for infertility. Everything came back fine with the exception of my […]

Isobel’s Story: Hamish the Helper Dog

I was diagnosed with Adrenal Insufficiency in 2014 after repeatedly ending up in A&E with what appeared to be an unusual asthma attack and by complete chance after a 2-week asthma ward admission, a consultant ran a Synacthen test and diagnosed me with Secondary Adrenal Insufficiency. Because the treatment for asthma attacks is the use […]

Ian’s story: Recovering from Apoplexy

I suffered a pituitary apoplexy. This sudden bleed into the pituitary gland fundamentally changed my way of being.

Teagan’s Story: Prolactinoma and University

Teagan was diagnosed with Prolactinoma in October 2021, at just 19. She was alone in her university room, 250 miles away from home. Teagan is a student at the University of Exeter. She noticed her migraines getting more and more painful. She originally put it down to majority of her studies being online due to […]

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