Hi all, has anyone ever considered a lip augmentation (ie not lip fillers!) at the Royal free? The process takes fat from one part of your body and deposits it into your lips and is a more permanent (and natural) solution. On my last annual consultation, the Dr mentioned this was an option, as I've been feeling pretty down about my appearance. My lips have thinned dramatically and gotten quite dark. It's safe to say that body Confidence is probably at an all time low. I can't look at pictures of myself and feel very self conscious about my smile. I'd like to be able to take pictures looking head on with my wee one and my family, but have somehow found a new "relaxed" pose which captures my side profile. Lol!
For reference, I'm 38. 36 on diagnosis, 34 when progression Began. Diagnosed with diffuse cutaneous systemic sclerosis - thankfully no fibrosis. I don't have any skin tightening yet, thankfully as on mycophenolate 2g and that has reversed the skin involvement I had on my hands.
Wondering whether I should wait for the worst to be over with my skin/ face, but how long is that really? Would be interested in your experiences please. (Hugs)
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Hi, I am currently on a waiting list to have this procedure. When I read about it the feedback is very mixed. It seems to be quite an invasive procedure with short term results. Quite scared to have it but at the same time feel I would regret it if I didn’t go for it. My mouth area has changed a lot. Hoping to hear some positive experiences.
I had this procedure at the Royal Free a few years ago, mainly because my upper lip thinning and receding meant there was less support for my upper teeth and so my front teeth were becoming very bucked and slightly loose (my dentist was concerned about this).
The procedure was absolutely fine - done as a day case and home the same day, and the staff were fab. They extracted some fat from my stomach (I did suggest they could take more - lol!), processed it and then injected it into various places in and around my lips. The wounds healed really quickly and weren't really painful, that I remember, and I've just got a tiny scar left at the top of my belly button. I did find the anaesthetic really wiped me out and made me feel quite low and emotional for a while, and it took me a good month or so to feel back to normal from that perspective.
The procedure definitely gave me plumper lips initially, but as I was warned, most (maybe all) of this has been reabsorbed over time. However, one effect that did remain was that my mouth opening was noticeably improved. They say this is to do with the stem cells in the fat regenerating the tissue. My mouth opening isn't back to normal, but is noticeably improved from how it was before the procedure, and this has helped make dental treatment and dental hygiene easier.
My understanding is that people tend to need multiple treatments and may gradually retain a little more of the fat each time. So it may be that one treatment might not have much effect (as in my case). I haven't had any further treatments - nobody's mentioned it since and I'm unsure whether I'd have it again, so haven't pushed for it.
I'm not sure about when is the best time to have it - whether you're best to wait until the disease is less active, so it would be worth chatting to your consultant about that.
I totally get the self-confidence issue. I'm only 4 years older than you. I used to have quite plump lips, and the change was pretty quick for me, so it's taken a long time for it to feel like it's me in the mirror. I also don't like looking at photos of myself - I can just see the scleroderma in my face. And seeing photos of the old me makes me feel sad for what I've lost. But most of the time I just try not to think about it, or remind myself that there are people dealing with worse than me. I'm not at all trivialising how you feel (it's totally valid, I get it, and it must be even more difficult when you're wanting to capture all these memories with your little one) - it's just how I manage my emotions around it and cope with my 'new normal'. At times it gets me down more than others, but over time I have got more used to my new face.
The other thing I'd say is that you're probably a lot more self-conscious of your smile because you know how it 'should' look, but most other people wouldn't notice this about you and would just see a happy smiling face. I think we tend to be hyper-critical of ourselves in a way that others wouldn't be.
If you have any other questions, I'm always happy to share my experience/what I know. At the end of the day, whether you have the procedure or not is a personal choice and there's no right or wrong decision - just what feels right for you at the time. I'm glad I had it done, but I'm not sure if I'd do it again now. I hope that helps! All the best!
I always enjoy reading your responses Lily, so In depth, considered and balanced. Ironically, I was at the Royal free today and saw Dr Denton who recommended a referral to Dr Butler's clinic who do the procedure, but was advised "there is a waitlist" - in true Denton style. Which means, it's not going to be soon. Lol He also said that I should wait until the active stage is done and to see how/whether my body could cope with a reduced dose of MMF. That said, he did say that by that time, I should be closer to the top of the waiting list. Lol he has a way of totally setting expectations!!
Sigh... you're right about "seeing the scleroderma in your face". I understand that and it's hard to unsee it. Perspective helps - but that in itself is a challenge. It's an emotional process and you do mourn the life you thought you would have had... I'm only 2 years post diagnosis of a very active disease, so still going through it... hanging on to little glimmers of hope. I could go on! On reflection, It really has been so comforting to find solace in this group; everyone trying to navigate the ups and downs of what this life brings.
Thanks for sharing your experience. I'll look into it more and see whether it makes sense to pursue and the process.
On a hopefully helpful note, as I recall we had conversations re sun protection and raynauds before. I stumbled upon two lovely brands recently:
1. Solbari; Aussie brand which provides high spf clothing. I wore their swim leggings and long sleeve swim suit on holiday recently! Looked incredible, flattering and stylish. Nice patterns and colours. Nice to have a little pick me up. Paired with various of their sun hats. These are an absolute winner! I have several styles. Mind you, my raynauds prevents me from ACTUALLY going into even a heated pool, at least I felt i looked nice shade- bathing!
2. Icebreaker: merino wool gloves and everything merino wool. I'm hoping to try a few of their items. My raynauds have gotten so bad now, I've asked to be medicated!
I’ve only just seen this post and it really intrigued me. I’m 34 myself and have been diagnosed 4 years now. I’m very conscious of the way my face is changing my lips have become very thin and dark also. I was unaware of this procedure and have been considering fillers for a while now. Do you have any experience & is it worth trying ?
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