I’m Nicole and you know me as @ancientegyptblog and the girl that can read hieroglyphs! What most people do not know is that I’ve been suffering with horrible abdominal pain for over 15 years caused by MALS, an anatomical abnormality I was born with and is caused by a genetic condition that I have.
MALS (also known as Celiac Artery Compression Syndrome) is a rare vascular compression disorder that affects about 1 in 100,000 people. It is so rare that most doctors do not know about it, and as a result, do not investigate it as a cause for abdominal pain.
The pain I experience daily is horrific. I can only describe my pain as “feeling like someone’s fingernails are scratching the insides of my digestive system,” “hot lava in my intestines,” and “rocks in my abdomen.” I feel this pain all day every day and no medication/diet/treatment has offered any kind of relief from the pain. The pain that MALS causes is the EQUIVALENT of the pain experienced by end stage pancreatic cancer patients. The pain with MALS is caused by the diaphragm rubbing against the celiac nerves and the compression of the celiac artery.
This may be TMI for some, but I’m not going to sugar coat my experience; my suffering needs to be known so maybe others experiencing similar issues can be helped faster than I was.
My main symptoms with MALS are horrible abdominal pain triggered by eating, but it can also be triggered by drinking too much, standing or walking for too long, exercise, deep breathing, and long car rides. I also suffer with other bowel issues such as extreme bloating, malabsorption, nausea, and constipation so bad I have to drink a colonoscopy prep every single night and take prescription laxative pills each morning. I am also malnourished due to the pain I experience when eating. I basically have to choose: do I eat or stay hydrated because both eating and drinking enough is impossible.
The only treatment for MALS is major abdominal surgery that involved the resection of the diaphragm/median arcuate ligament and a neurectomy of the celiac ganglion nerves. I will be undergoing this surgery on 10/18 (at the time this post is posted, I will have undergone the surgery already), which has a 90% chance of completely relieving me of my abdominal pain and hopefully restoring me of my ability to eat.
The suffering I have faced is unimaginable. And most people don’t take me seriously because I “don’t look sick” and I hide my immense pain really well…until I can’t. MALS is also incredibly isolating because NO ONE believes the pain is real and it can take an incredibly long time to get an accurate diagnosis.
This is my personal photograph and original text. DO NOT repost.
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