Sheila’s Story

History of masto and me: Odd pink freckles appeared on my thighs in my early thirties, no other symptoms. In my late forties I mentioned it to my GP as they had multiplied significantly. By now I was also getting hives/nettle rash when stressed (I had quite a stressy job). He referred me to the hospital – they did a biopsy and confirmed urticaria pigmentosa, cutaneous mastocytosis. The consultant told me I had 1 in 10 chance of it turning systemic and 1 in 100 chance of bone marrow leukaemia. He told me to look out for flushing for the first, and bone pain for the second. When I laughed and commented about a 48 year old woman looking out for flushing, he muttered something about HRT…….. I am in the middle of moving house, so I have an appointment with a dermatologist to get an update and to make sure I can explain things to my new GP.

My position today is that the spots continue to multiply and I still get hives when stressed, but have given up stressy job (hurray). I am in the throes of the menopause and am flushing at the drop of a hat with aches and pains aplenty, but nothing serious enough to warrant further investigation / HRT at present. I am a bit scared about what might develop but not so that it gets in the way.

[urticaria pigmentosa, UP, skin spots, skin rash, flushing, adult]