So if you’re not aware, this is part two to my alopecia story. If you’ve missed the first post it may be helpful having a quick read through it first, so this one makes more sense.
Shortly after I had the biopsy done the receptionist said I’d receive an appointment letter in the post for the results. So I receive that letter around a day after, asking me to come in a week after, which I thought was pretty speedy as I overheard that it usually takes around 6 weeks to get the results. So I think hmm okay, I wonder that is. I’m extremely nervous up until the morning of the appointment when I was sitting outside the consultants office, preparing myself like it must be good news, I bet they didn’t find anything, and if they did it would be something that I already know I have like “eczema” or “sebherric dermatitis”, quite menial conditions in the grand scheme of things, as I know scalp biopsy’s usually aren’t the final piece of the hair loss puzzle.
My name is called, I walk in her office trying not to show my nerves. And the Dr asks me why I’m here. I say, “I received an appointment, so I assume it’s for the biopsy results?”. She playfully says, “The results wouldn’t have come back so soon, it takes over a month to get them back,”. You should’ve seen my face, it was like this
So I just said, “Oh right, well the receptionists sent out the appointment, I didn’t request it or whatnot.” So the Dr apologises and basically tells me to sling my hook. So now I had to wait around 6-8 more WEEKS for the results, after I built myself up for this one.
So finally, the endless weeks pass as the anticipation grew. At this point honestly the nerves left me, I didn’t know what or how to feel. It’s already been an emotional rollercoaster and I felt like I was just exhausted at that point and just wanted to hear the results good or bad, I felt drained and almost lifeless inside. Close ones around me were assuming, ‘oh you must be so nervous but it’s going to be okay’ and I was just like ‘I’m fine’, I just want this suspense to be over and hopefully have the right treatment if they do find something. I’ve been waiting over a decade for some sort of help/diagnosis regarding this, and with the first appointment mishap, I genuinely wouldn’t have minded being sent the results in the post!
After having to wait agonisingly for about 2 months, the day comes. After such a long road to get to this point, I wake up not in the best mood; I’m unsure as to why, I think I mentally had enough. And for the few years since I’ve had this certain dermatologist, there has been many discrepancies and just nowhere near as efficient as how I was treated in Paediatrics, up until the age of 18. The care as been immensely lacking and I’ve had to really push for most of my the dermatological care since she’s been my named consultant.
But I put those thoughts to the back of my mind and make my way to the hospital, it was another early morning appointment so the place was almost like a ghost town, especially as the coronavirus pandemic was and is currently happening, I was even surprised they were having outpatient appointments. I find myself sitting outside her office again, contemplating all the things it could be, but repeatedly telling myself, “they’re probably not gonna find anything which is going to be infuriating and a waste of time and energy!”.
I walk in, take my seat – my mum is there too. The consultant says “your results for the biopsy are here and it confirms that you have scarring alopecia”. I can’t begin to describe how I felt. Not good but I’m glad it found what we thought it was. I knew deep down I had that, but I don’t have a lot of faith in doctors or even tests which are sometimes flawed. So she continues to say, “we couldn’t find the exact reason as to why you have this form of alopecia, so we can’t rule anything out”. I see her lips moving and heard, “your hair will never grow back and there’s nothing we can do”. I ask, “what do you mean there’s nothing?” She says “we can’t begin treatment if we don’t know what we’re treating.”
Then she begins to ask, “How old are you?” I say “21”, and she says “Oh okay, because it may be female pattern baldness..”, and I just had jump to say, “Hold on, I’ve had this since I was 8 years old. How are you trying to put it down as that by asking my age now like I’ve only been suffering from this now?”. “It literally cannot be that condition as I’ve had it since a very young age, over a decade now, this isn’t a recent thing.” Then she stutters, “Oh right then if you’ve had it since that age, it wouldn’t be that condition”, but I’m thinking to myself, you’re supposed to be aware of all of this? I’ve told you in multiple appointments, and also, doesn’t she look back at the notes? I remember her writing things down whenever I used to explain x, y and z about this and the history of it. It’s truly exhausting and infuriating to think, I had such an intrusive thing like a biopsy done, which a consultant who to be frank, really doesn’t show much interest. And if all else fails tries to label me with something like the balding has just happened a week or year ago, when theres completely no evidence or symptoms for it to be that condition; virtually impossible considering the age this all began.
Before this disarray, she said, “If I have the biopsy and it confirms something, like scarring alopecia or alopecia areata, there might be some treatments we can try so more hair doesn’t fall out”. And I also read online there’d be some avenues I could go down to help. But now, nothing. At the drop of a hat, there’s nothing they can do for me and basically, my hair will continue to fall out and there’s nothing they can do about it. So I was just diagnosed with scarring alopecia with alopecia areata and in essence, the doors on your way out.
The most unbelievable thing was in that same appointment, she tried to put me on an immunosuppressant, not even to help my hair! In this covid-19 pandemic, what makes you think I’d want to suppress my immune system? Especially in times like these. It’s like you wouldn’t want my body to try and fight the virus if I was unfortunate enough to get it.
The thing I regret about this whole thing is that I had it done under such an unknowledgeable and in a way under-qualified consultant. I kept reading online that you should have a scalp specialist, and this doctor for sure isn’t that, it even surprises me that she’s a general dermatologist. But my mum kept saying, “It’s worth having the biopsy done”. If I had the chance again, I’d go somewhere like a London hospital and get a scalp specialist to take my case on. As now that tissue is gone from my scalp forever, in a way it has been wasted, and I had a heavy feeling that would happen.
Scarring alopecia is a rare form of alopecia that only affects up to 3% of the worldwide population suffering from hair loss. I’m still oblivious to the type of scarring alopecia I have.
If anyone reading this is going through a similar issue, my advice would be, do your research into the best doctor specialised in the issue you’re suffering from. Because sometimes the doctor sounds alright at first, but once they’ve taken something from your body that you can never get back, that’s when you get unbelievably upset especially if they’re inefficient. You don’t really want a general consultant if there are specialised doctors in areas of the country you live in.
Have you ever had a not too pleasant encounter with a doctor? Would you like to hear about my experience on immunosuppressants in another post? Do you know anyone with scarring alopecia or alopecia areata? Did you enjoy reading this post? Comment below!