My Journey with Acromegaly and Motherhood

Written by Anis Mohd Nor

I first became a mother in 2017. The pregnancy was a bumpy one – while I felt blessed to be pregnant after several years of trying to conceive, being pregnant also coincided with the start of a very difficult time for my health. It started with swelling in my hands, feet, and face, extreme fatigue, severe cold intolerance, aches and pains in my bones and joints, insulin resistance, and many hormonal issues which  peaked with me being hospitalized with menorrhagia and having to undergo a D&C (dilation and curettage) procedure 6 months after having my baby. At the time, it seemed like all my symptoms were triggered or related to my pregnancy, and everyone told me that this was a temporary phase and would go away once I had the baby. Throughout all this, I was given a diagnosis for PCOS (polycystic ovarian syndrome) and post pregnancy anxiety, but even long after the pregnancy my health issues worsened and although I didn’t want to admit it, deep down I knew that there was something more serious going on with my body.

2017: The start of my motherhood and my acromegaly journey (though I didn’t know it at the time)

 

Fast forward to 2 years later, and most of the symptoms had worsened. A turning point was also when my gynecologist, who I was seeing for PCOS and other related issues, noticed that I had stopped wearing my wedding ring because my fingers were so swollen. She was very puzzled that I wasn’t responding to the various medications she had prescribed. She suggested some non-typical and very thorough blood tests and after many tests and seeing various doctors (including a few endocrinologists and neurosurgeons) it was confirmed that I had acromegaly, a condition where the body is disrupted by abnormally high levels of growth hormone, secreted by a tumor in my pituitary gland (which is located at the base of the brain).

My ‘uniform’ throughout 2018 and 2019, as I underwent various medical tests.

 

The first time the doctor told me I had acromegaly, all I heard were the words ‘brain tumor’ and the rest was a blur. Although I was relieved to finally know what was causing my health issues, the diagnosis was not what I expected (I was convinced I had some sort of extreme gynecological issue) and I was completely terrified when they told me it had something to do with the brain. It didn’t help that I had never heard of the condition before, and a quick search on the internet predominantly came back with images of gigantism.

Getting access to the best medical advice and treatment was challenging. Acromegaly is a rare disease, and although there were many good neurosurgeons in Malaysia where I lived, there were no acromegaly specialists or experts. The first few months after getting my diagnosis were tough and an emotional roller coaster for me. On a daily basis I would fluctuate between living in denial and pretending everything was okay and throwing myself into endless hours of research about what the right course of action was, such as life long medication, surgery, or laser treatments. During this difficult time, my child was one of the things that gave me strength to persevere. I knew if I wanted to be the best mother I could be to her then I would need to do whatever is best for my health, no matter how daunting it seemed.

Walking to the hospital with my mother and daughter on the morning of my surgery.

 

After months of research and consulting with different doctors, my family and I chose to travel to the UK to have my tumor removed by a neurosurgeon specializing in the pituitary gland. It was a really tough decision to be so far from home and my comfort zone but I knew that I had to prioritize getting the best treatment for my condition. Despite the risks, the procedure went smoothly and was considered a success due to the bulk of the tumor being removed. 3 months post operation, the doctors confirmed that my hormone levels had started to normalize, but cautioned me that I would need to continuously monitor my bloodwork as recovery would be a long process and recurrence is always a possibility.

Recovering post-operation. I was lucky to have my family with me during recovery.

 

Fast forward to today, and it’s been almost 2 years since I had the procedure. The recovery process has been a gradual and not straight forward, involving many ups and downs, side effects, and countless follow ups and tests, both here in Malaysia and in the UK. With any recovery, sometimes it involves 1 step forward and 2 steps back and I do get frustrated. I always remind myself that progress is what is most important, and it’s important to celebrate any ‘wins’ you can get during this journey.

Discharged from the hospital 1 week post-operation and slowly starting to feel like myself again.

 

My daughter and I were very happy to receive the good news that my hormones were normalizing at my 3 month post-op check up.

 

One of the unexpected ‘wins’  was that I also conceived my 2nd child 8 months after the procedure (I had struggled with fertility issues since the start of my diagnosis), and although this was unplanned, my doctors concur that this is the biggest sign that my body is starting to get back to optimal health. Due to the global COVID pandemic, I have not been able to travel back to the UK for my post 1 year check-up, but luckily have been in the good care of a great endocrinologist in Malaysia. This endocrinologist has been working with me on my follow up throughout my pregnancy, and has had some remote consultations with my doctors in the UK. I know that my condition is something that I will probably have to monitor and manage throughout my life. While that does frustrate me at times, I am forever thankful that I was finally able to find the cause of my health issues and was blessed with the opportunities and resources to access good medical treatment both here in Malaysia and abroad.

Celebratory lunch with my husband after getting some good medical test results.

As I think about my journey, I feel thankful that my acromegaly ‘journey’ has also coincided with another journey that I have been going on – motherhood. Dealing with long term health issues can be very demoralizing and exhausting, and during my low points it is the thought of my children which has given me the strength to soldier on.

I know that my health will not just affect me but the little humans who are dependent on me. It is important to me that my health issues not affect their childhood and that I be the best mother possible to them. In this special way motherhood has not only blessed me with two beautiful children, but also the strength and perseverance to see me through my acromegaly journey.

Back in the hospital in 2021 but for happier reasons: welcoming the birth of my sons

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