Nerves are beginning to kick in. And since I’m the first and youngest person in my family to have a biopsy, you can’t really relate to anyone. So only one thing calls for this… Storytime.
So, my post prior to this one uploaded a few months ago, was all about my alopecia and the current treatment at that time. I’ll do a little recap. I’m 20 years old now, so about 10+ years ago, I first discovered a bald patch. I mentioned it to the doctor a few times upon the arrival, and he gave me a small cream for it. I didn’t really see any hair growth or any difference to the patch. My mother says she remember’s the smallest difference, but I can’t recall. I see dermatologists for all my life, but they don’t really do anything about it or investigate.
So fast-forward to the beginning of last year, I have two bald patches – along with hair thinning at the sides of my head, so much so a lot of the time if I style my hair up, it’s very visible. The most recent bald patch arrives about a year before I see a Dr about it. I reluctantly tried the GP first but the Dr just took one look at it and assumed it was eczema and gave me a scalp medication for that. I didn’t even bother picking it up from the pharmacy if I remember, as it was the same sort of weak scalp application liquid I’ve used before (for eczema only). A month or two after, I see a dermatologist, she measures the patches and she prescribes me a highly potent cream.
A few days into trying it, my mother says my patches are looking more obvious and that I should stop using it. I’m like I need to give it more of a try before I just throw the towel in, I try to be hopeful, and hide what I really feel inside. As honestly, I can’t imagine a miracle happening. But I use it for a week or two and keep looking at my scalp getting worse and worse. The patches getting slightly larger and larger. I show my mum for a second opinion and she agrees so I stop that treatment at that point.
I read online that there are injections called INTRALESIONAL CORTICOSTEROID INJECTIONS, that seem to be fairly effective for people with alopecia areata. How this may work for these patches, is that it’s supposed to aggravate the skin, causing a slight allergic reaction, to get the hair follicles working again-unless the follicles are dead, then there’s virtually no way of getting that hair back. Now, no-one including dermatologists knows what I have and cannot formally diagnose it. So, first of all they treat it as alopecia areata and if it doesn’t seem to be improving with treatments, then they look into scarring alopecia. My dermatologist, hears my story and how long it’s been there for, and suggests maybe having a biopsy as she thinks it may be scarred alopecia, since my smooth patches have been there for so long (one of them) and hasn’t grown back. But the downsides are that it leaves scars and sometimes doesn’t give a final diagnosis.
I’m not very keen on the sound of that, so I ask about injections and want to exhaust every avenue before I have quite invasive procedures like that. So she agrees to give me injections in my scalp, and I have three batches of those administered over around 3 months. But she admits she’s not hopeful of hair growth from the main bald patch that’s been there for over a decade. She’s quite hopeful of hair growth from the small more recent bald spot.
Let me tell you, these aren’t for the faint hearted! My mum was there each time I had them done and kept saying I don’t know how you do it, I couldn’t (she’s had 8 kids mind haha). As each time I have them administered, I had around 4 injections each patch. So give or take about 8 each visit. Altogether around 20+ over 3 months. It does sting, but I’ve been through quite a few treatments+needles, so I’m tough in that sense.
After the first batch injections she wasn’t going to give me anymore if she couldn’t see any hairs beginning to grow, even fine colourless ones, she’d expect to see some. I think it was after the first or second batch, she looks in my scalp and see’s no signs of life! I say, when I look at home, I’ve seen a couple small fine ones. She takes a look again and says, “ohh yes I see them”, and agree’s to administer another batch.
At the end of this all, I don’t see her for months after. And those very few, minute (probably not even 1mm), thin, colourless hairs have gone. Fallen out. And the one smidge of hope I had, vanished as those hairs had.
I know deep down this isn’t normal to have had this for so long, since a child. And I’ve known for a while, even before the dermatologist said it, that I probably have scarred alopecia, which is simply more of a permanent term of alopecia. Nine times out of ten the hairs wont grow back in that case, whereas alopecia areata, there’s about 80% chance of full hair regrowth within the first year. Without any treatment.
Months later, I go back to the dermatologist. Say the injections haven’t worked, if anything they caused acne! She looks into my scalp with one of those dermatoscopes I think they’re called. And confirms what I said. She recommends that I have the biopsy done, as she cannot formally diagnose that I have scarring alopecia unless I undergo that procedure. And cannot make any attempt to save my hair from anymore hair loss if she doesn’t know what she’s treating, if it can be treated at all. The choice is out of my hands, I agree to it reluctantly. Sign the paperwork and ask questions like, will it leave a hole in my head?
They can diagnose all sorts of diseases including auto immune conditions like lupus, but also conditions like fungal infections or seboherric dermatitis. The chances of me getting a final diagnosis that tells me the reason for this hair loss is quite slim. Which doesn’t help my reluctancy going into this. Also they say the person carrying out the procedure is very important as it’s crucial where they get the biopsy from. As if they’re a mm out or something, I can get a false negative result.
My biopsy is for Wednesday 8.30am (tomorrow). I wish it was so much later! I only got a couple of weeks to mentally prepare. I wish I had a couple months so I could think do I want it? Don’t I? And just prepare for it mentally more. But hey, who complains when they get a very near appointment? Not many, I never do.
But on this occasion, I would’ve liked to have stewed in my own nervous juices haha! I just hope at the end of all of this, I get a final diagnosis. As if I do, they might be able to stop the alopecia from accelerating and hopefully me being able to keep the majority of my hair. My fingers are crossed!
Have you ever had a punch biopsy? Have you ever had any procedures in or near your scalp? Do you suffer from hair loss or any of the conditions raised above? Do you know someone who has? Comment below!