I was 25 when my periods started to become very irregular. Many male doctors told me I should feel ‘lucky’ I didn’t have to deal with a monthly menstrual cycle, and offered me the pill to artificially stimulate them. This didn’t make any sense to me as it wasn’t investigating the underlying issue. An ultrasound of my womb revealed some small cysts on the ovaries, so then the doctors were confident my lack of periods were because of Polycystic Ovary Syndrome and I was offered the pill again. From my own reading I understood that cysts naturally and rapidly come and go, so declined the pill again.
When I was 26, I started studying for my master’s in Chiropractic. They had regular ultrasound training days on campus and asked for us students to practice on. I jumped at the chance to see if my ovaries were still cystic. By this point I was also suffering from carpal tunnel syndrome. This scan confirmed my ovaries were cyst free and my womb looked very healthy. Thankfully they advised me to see an endocrinologist to get to the bottom of my lack of periods. The endocrinologist ordered bloods and an MRI; acromegaly was shortly confirmed and I was offered surgery straight away on my 1.5cm tumour.
Outside of University I was seeing a private Chiropractor for regular treatment. When she found out my diagnosis, she told me about her friend called Matt in Wales who had acromegaly too! I was scared and upset by the recent bombshell diagnosis and so jumped at the chance to speak to someone going through the same thing. We met and hit it off as friends straight away. We had loads in common aside from the tumour. We are both outdoorsy, lovers of nature, the sea, healthy lifestyles and Chiropractic! We supported each other through our first operations and our friendship grew into a relationship. Seven years later, we are still going strong.
My first operation didn’t go so well and within a few months it was clear that the surgery hadn’t removed all of the tumour. The surgeon in Southampton wanted to re-operate again, this time going through the cranium above the eyebrow instead of trans-sphenoidal. This is far more invasive, risky and would mean I couldn’t drive for a year. I declined as I was focused on finishing my degree and my instincts told me not to do it. For the next three years I had monthly Octreotide injections, but they didn’t manage to supress the rising GH levels.
After graduating, I moved to South Wales and went to see Matt’s surgeon in Cardiff. She was fantastic, and confident that she could remove the remaining tumour via trans-sphenoidal again. I was thrilled and had the 2nd op in 2015. I have been in remission since, though the pituitary gland never recovered fully from the tumour and first operation. I have been taking thyroxine for years and recently began Hormone Replacement Therapy (HRT) for oestrogen protection and to have a regular cycle. It feels great to have a monthly cycle again, even though it is artificially stimulated. I gave my body a good time to heal naturally post-operation and explored many alternatives before going on HRT. Because of the changes in my appearance and the lack of natural cycles and fertility, I do feel a loss of femininity. I often wonder if I would want to have children if the circumstances were different.
Matt’s first operation in 2012 was a great success and he’s enjoyed being tumour and side- effect free since. Thankfully, his pituitary gland remained fully functioning, so he doesn’t have to take any medication. He does get regular headaches and bouts of extreme fatigue though. His growth hormone levels have crept into the abnormal range over the past few years and his last MRI showed the tumour was potentially re-growing. At this early stage though we are adopting a watch and wait approach whilst keeping everything crossed so he doesn’t have to go through another operation soon.
As soon as I finished my degree, I moved to Wales to live and work with Matt at his Chiropractic Centre. We enjoy serving the community with Chiropractic care and being self-employed means we can set our own hours. I can manage energetically part-time hours. Being in nature really rejuvenates our energy and so we prioritise getting outside. We adopted a little rescue dog called Emma three years ago and she ensures we get out every day too, no matter what the Welsh weather dishes out! We live in a stunning area and we make the most of it, surfing in the sea and walking on the land.
Acromegaly doesn’t just go away, it’s something we live with and manage. When I first got diagnosed, I remember thinking the operation would cure me and I’ll go back to normal afterwards…. wrong! Yearly checks and medication to support my hormonal/pituitary health for life!
On the plus side, Matt and I met and fell in love because of our tumours! We make an amazing team and have plenty of fun adventures along the way. Being self-employed helps us manage our energy and balance work/life. We prioritise following our dreams and looking after our bodies, minimising stress. We have tried so many different diets, supplements and alternative treatments along the way. What works for me is predominantly a vegan diet, monthly massage and acupuncture treatments. Daily Yoga and meditation have helped us both enormously and I get a lot out of journaling. Spending time outdoors in the ocean and on the land is extremely healing. The support from our friends and family has made a huge difference.
Overall, I’ve learnt so much about myself, the good and the bad! I value the important things in life – relationships, love and adventure! We have great jobs where we can help others but not in a way that drains us completely. I feel very blessed and thankful for meeting Matt and sharing this journey of life with him.