“I Thought I Was Going Mad”
Kate’s Pituitary Tumour and Acromegaly Story:
Kate Below put her symptoms down to lack of sleep, turning 30 and having a young child. But when her body started changing and her periods stopped, she was eventually told she had a pituitary tumour.
Kate’s story began with symptoms that were easy to explain away.
She was tired. Her body ached. Her feet were swollen. Her rings felt tight. She had a young daughter, she was sleep-deprived, and life was busy.
At first, nothing seemed dramatic enough to suggest something serious was happening.
“I put a lot of my symptoms down to lack of sleep, turning 30, and having a baby.”
But then Kate and her husband started thinking about having another baby. Kate came off the pill, but her period did not return.
After six months, she went back to her GP and was referred to hospital. What followed was a whirlwind of appointments, tests and being passed between departments.
Then, at the one appointment Kate attended alone, she was told:
“You’ve got a pituitary tumour.”
Kate does not remember much after that.
“I heard them say tumour. I heard them say it was in my head. And at that point, everything disconnected.”
Listen to Kate tell her story in full in the Aunty M Brain Tumours Talk Show interview below, or keep reading for the written version
In this interview, Kate talks about being diagnosed with a pituitary tumour and acromegaly, the symptoms she had before diagnosis, surgery through the nose, recovery, motherhood, writing things down, gratitude, and how she now helps others through writing therapy and positive mindset work.
When Symptoms Are Easy to Explain Away
Before diagnosis, Kate had noticed changes in her body.
Her feet had grown from a size 7 to a men’s size 10 or 11. She could no longer easily buy women’s shoes. Her rings no longer fitted properly. Her body felt swollen and uncomfortable.
She also noticed something strange one day when she went to rest her head in her hand.
“I put my head into my hand and realised I hadn’t opened my hand wide enough for my head to fit in.”
It sounds small, but for Kate it was one of the moments that made her realise her body did not feel like her own anymore.
Later, she learned that acromegaly can cause changes to the jaw, forehead, brow bones, nose, hands and feet.
“I just thought I was going mad.”
When her consultant explained that these changes were part of the condition, Kate felt relief.
Not relief at having a tumour — but relief that there was finally a reason.
“At least there’s a reason for it then.”
Being Diagnosed With Acromegaly
Kate was diagnosed with acromegaly in April 2007.
Acromegaly is a hormonal condition most commonly caused by a tumour on the pituitary gland. The pituitary gland is small, but it controls many important hormones in the body.
In Kate’s case, the tumour was causing her body to produce too much growth hormone.
Because Kate was already an adult, her bones could not grow longer in the way they might in a child or teenager. Instead, some bones and tissues thickened. This explained the changes in her hands, feet, face and joints.
Kate is nearly six feet tall, but she explains that her height is genetic. Her acromegaly affected her body after she had already stopped growing.
Pituitary Surgery Through the Nose
Kate was diagnosed in April and had surgery in November.
She was told that treatment before surgery could toughen the tumour and make it harder to remove, so she did not have medication or steroids beforehand.
Kate was referred to Birmingham, where she was treated by a leading pituitary surgeon.
Because the tumour was at the front, surgeons were able to remove it through her nose rather than through the skull.
Kate woke up with only a small swab under her nose.
“I literally just had a swab under my nose. It blew my mind.”
After surgery, her surgeon told her that while they were not allowed to say it had been “successful,” it could not have gone any better.
Within 12 hours, Kate could feel aching in her body. She was told this was fluid draining from her muscles and tissues.
Then something extraordinary happened.
“I literally watched my face change shape in the mirror the week I was in hospital.”
Recovery and Becoming a Mum Again
After surgery, Kate spent a few weeks recovering at her parents’ home in Leeds.
Because the surgery had gone through her nose and it was winter, she had to be careful about infection. A cold, sneeze or complication could have been dangerous while she was healing.
By the time she was ready to go home, her clothes were falling off and she needed new shoes that fitted.
Kate had been told she probably would not be able to have more children without IVF.
But before she had completed all her follow-up appointments, she conceived her son naturally.
Her son was born in January 2009.
“I was told all the way through my diagnosis that I wouldn’t be able to have any more children.”
Kate says the pregnancy worried her medical team, but she went on to breastfeed her son for 12 months.
For Kate, this became part of her message: there are no hard and fast rules.
“We’re all different and we all react differently to everything we go through.”
Life After a Pituitary Tumour
Kate has continued to have long-term treatment and monitoring.
After her son was born, she had the MRI scans and follow-up appointments that had been delayed. She was then started on injections, which she still has every 12 weeks.
The injections help keep things under control. Kate can tell when she is due for one because her fingers become puffy.
Although Kate tries not to dwell on what happened, her life has changed.
“I’ve modified my entire life so that I feel like I’m normal.”
She still has energy restrictions and joint pain. She also has regular check-ups, MRIs, colonoscopies and the ongoing reality of living with a condition that still needs monitoring.
Kate tries to focus on gratitude, but that does not mean pretending everything is easy.
She describes herself as naturally positive, but she also recognises that brain tumours and hormonal conditions can affect physical life, emotional life, temper, energy, memory and identity.
“I try to be grateful for the life that I’ve got.”
Why Writing Things Down Helped
One of the most important things Kate recommends is writing things down.
During her time in hospital, she kept a diary. Looking back, she knows there are many things she would not remember if she had not written them down.
“I wasn’t remembering things as well.”
Kate is now a qualified journal therapist and believes strongly in the power of writing therapy. For people with brain tumours or neurological conditions, writing can help with memory, emotional processing and making sense of what has happened.
She wrote down statistics, numbers, information from appointments and emotional moments — including how pleased she was when her daughter came to visit.
For Kate, writing gave her a record of the facts when everything felt overwhelming.
“Writing things down helps us remember the facts and reality of the situation.”
Recovery Can Feel Like Slow Motion
Kate and Claire also spoke about the strange feeling of life after surgery.
Kate remembers going to a supermarket after her operation to buy shoes to travel home in. Everything felt too fast, too noisy and too much.
“It felt like everybody was walking too quickly. It was too noisy.”
Claire described it as feeling like you are in a bubble, sensitive to everything around you.
Kate agrees. After surgery, life can feel slowed down. The world keeps moving, but your brain and body may not be ready to move at the same speed.
This is why Kate believes it is so important to look back and see how far you have come.
“To be 16 plus years out the other side, I would never have dreamt I would be where I am now.”
Focus on What You Can Do
Kate is honest about the things she can no longer do easily.
Since her diagnosis, she has struggled with sewing and needlecraft. Even something small, like putting on a button or fixing a hem, became difficult because of pain and problems with her fingers.
At first, this was hard to accept, especially when she compared herself to her mum, who could still do those things.
But Kate made a conscious choice to focus on what she could still do.
She could sit on the floor and play with her children. She had her son. She could help other people. She could use her experience to relate to others who were going through difficult things.
“I focus on the things I can do, not the things I can’t.”
Kate’s Advice to Others
Kate’s advice to someone newly diagnosed with a brain tumour, pituitary tumour or life-changing condition is gentle but practical.
She recommends trying to focus on the positives, even when that feels difficult.
She believes in affirmations, positive thoughts, and reminding yourself that things can be okay.
But she also says it is normal to have dark times.
“They’re not all positive thoughts, and that’s okay.”
For Kate, writing things down helps separate fact from fear. It helps stop the mind from telling a worst-case-scenario story that may not be true.
Her advice is:
- Write things down after appointments.
- Keep a record of medical information.
- Write how you feel, not just what happened.
- Notice the small positives.
- Focus on what you can still do.
- Let yourself process the difficult emotions too.
Finding Support After Diagnosis
Kate describes a gap that many brain tumour patients recognise.
She was told she had a pituitary tumour and then sent away without enough explanation, strategies or signposting.
“Nobody explained anything to me. Nobody elaborated, and nobody gave me any strategies.”
Kate later found an online forum for people with pituitary tumours and acromegaly. Speaking to others helped her, but it was also frightening at times because some stories were scary.
She learned that support matters — but so does choosing the right kind of support for where you are emotionally.
Sometimes you need information. Sometimes you need community. Sometimes you need to step away from other people’s stories and protect your own peace.
Why Positive Stories Matter
Kate wanted to share her story because positive stories matter too.
When people recover enough to get on with life, they may stop talking about what happened. But for someone newly diagnosed, hearing from someone many years later can be powerful.
Kate is now more than 16 years on from diagnosis.
She has lived through the fear, the surgery, recovery, motherhood, treatment and long-term changes. She has also built a life where she helps others.
“I do feel that it’s important that people hear the positive stories as well.”
Thank You
Kate is grateful to her family, especially her husband, children, sister and parents, who supported her through diagnosis, surgery and recovery.
Her sister stepped in when childcare was needed, taking pressure off Kate and her husband.
Kate also thanks Dr Johnson, the surgeon who operated on her.
When she went back for a check-up, she was so grateful that she gave him a hug.
“I think I scared him, but I was just so grateful.”
About Kate’s Tumour: Pituitary Tumour and Acromegaly
Kate was diagnosed with a pituitary tumour that caused acromegaly.
The pituitary gland is a small gland at the base of the brain. It controls many hormones in the body. Some pituitary tumours can produce hormones, and a growth hormone-secreting pituitary tumour can lead to acromegaly.
Acromegaly happens when the body produces too much growth hormone. In adults, this can cause changes such as enlarged hands and feet, changes to facial features, joint pain, tiredness, swelling and other symptoms.
Kate’s symptoms included:
- Swollen feet
- Tight rings
- Tiredness and aching
- Periods stopping
- Feet increasing in size
- Changes to her face and body
- Joint pain
- Ongoing energy restrictions
Treatment for acromegaly may include surgery to remove the tumour, medication to reduce growth hormone levels, radiotherapy, or a combination of treatments. Kate had surgery through her nose and now has injections every 12 weeks to help keep her condition controlled.
Pituitary tumours are often benign, meaning they are not cancerous, but they can still have a major impact because of where they are and how they affect hormones.
Support for People With Pituitary Tumours and Acromegaly
If you have been diagnosed with a pituitary tumour or acromegaly, it can feel confusing and isolating at first. Kate’s story shows how important it is to have clear information, follow-up care and people who understand what you are going through.
The Pituitary Foundation is a UK charity supporting people affected by pituitary conditions. They offer information, support groups, helplines and resources for people living with pituitary tumours, acromegaly and other pituitary conditions.
Macmillan’s Online Community: A support group for people with a pituitary tumour & their loved ones. Pituitary gland tumours are a type of brain tumour and are usually benign (not cancerous). Join the group to share experiences & emotional support
Kate’s Message
Kate’s story is about symptoms that were easy to dismiss, a diagnosis that came as a shock, and a condition that changed her life in ways people could not always see.
But it is also about motherhood, gratitude, writing things down, focusing on what is still possible, and using lived experience to help others.
Her story is a reminder that not every brain tumour story looks the same.
Some are quieter.
Some are hormonal.
Some are hidden in changes people explain away for months.
And some, like Kate’s, show why listening to your body matters.
Connect with Kate Beddow here on social media:
FOLLOW KATE ON INSTAGRAM
View this post on Instagram
FOLLOW KATE ON FACEBOOK PAGE
