Meet Humaira: The long journey to Lichen Sclerosus

Meet Humaira, a 23 year old from Bangladesh now living in London, who suffers with Lichen Sclerosus, IBS and difficulties with mental health:

“I was about 2 or 3 years old and I had no idea what was going on..why was this medicine put on me every day? The sudocrem would tingle ‘down there’ a lot.

Mum and Dad took me everywhere to get the treatment I needed, and all the while I was completely unaware of what exactly was happening. I grew up living in a confused bubble. As a child I was taken to the hospital and the GP quite a lot, and was told to strip off completely ‘down there’. I was clueless, raised up thinking the patches on my vulva and the pain were just normal. The checkups were ‘normal’. I didn’t understand why I was the only one who went to the hospital the most out of my brother and sister. I used to change the name to my sister’s name or someone else’s name sometimes, so I could try to avoid the appointment, but that didn’t work. I was continuously meeting different doctors and angry about not knowing why I had to always be checked!

As time went on, around the age of 12-14 years old, I remained confused but started confronting doctors that ‘I don’t want to be checked like this anymore, I don’t even know what is wrong with me, so why check my body every time?’ A doctor was fairly annoyed with the reaction and there was one appointment where I actually didn’t turn up at all since I never got told anything informative, I’d given up. I just assumed that being itchy, having scarring and having some kind of bleed around the skin was ‘normal’ but to my parents, they knew something was wrong but just couldn’t find a way to convey this to professionals, or to myself.

I guess it is what it is… I fell into depression and developed anxiety around the age of 19-21 and was prescribed antidepressants due to a separate trigger. I also started developing symptoms of IBS at the age of 19, yet I still have no clue what triggered that and yet again thought it was normal! It took until 2019 (where I was 22) that I collected my medical record one day to give to my university, and I saw something called ‘Lichen Sclerosus’ on the notes. Straight away I went and looked on the internet, and was very shocked and upset when I started to research what this looked like in the female anatomy. Google showed me images that made me uncomfortable, hurt and upset me, because it was confirmation that I have the exact same skin as what I saw in these photos.. It made sense why I was taken to go to the doctors so many times for my skin ‘down there’ as a child. I was very much at a suicidal point due to the uncertainty of my unknown abnormality, and then slowly it made a lot of sense that my skin ‘down there’ wasn’t in fact ‘normal’ at all.

This whole time, 22 years, I had been suffering with Lichen Sclerosus. I then soon after got diagnosed officially with IBS around the Christmas holidays, by a doctor I regularly meet for my mental health. Time passed, and around Feb 2020 until today, I realised I started to get some nasty pains ‘down there’ and constantly smelled like fish. I was told to do a swab test and I booked it with the nurse, who noticed that there were patches, and white/pinkish/red marks around my skin. Luckily my doctor was available and prescribed dermovate ointment for my skin and both the nurse and the doctor confirmed to me it was definitely Lichen Sclerosus. I was referred to a gynaecologist and now I’m waiting for my appointment so that I can find out more about what’s going on.. and waiting for lockdown restrictions to be finished so I can be examined by my GP! I’m hoping I see the same doctor regularly the same way I do for my mental health so that it makes my journey that slight bit easier!”

You can connect with Humaira on Instagram at @humairayasmin_18

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