Hi, I'm new to this forum and just wanted to write a post about my experience with Rosacea . . . . . I was diagnosed about 18 months ago following a chronic bout of Covid (I already had an autoimmune disease and I believe Covid sent my immune system into overdrive). For me, the condition presented as chronic burning and redness, which went from zero to 100 in a matter of a weeks. I've also developed very unsightly lumps and bumps, mainly on my chin, which have been described as a granulomatous form of rosacea. I've tried all the usual topical treatments and had a 3-month course of antibiotics. Sadly none of these appear to have had any positive affect. I have been offered Isotretinoin in respect of the lumps and bumps on my chin (which appear to be permanent and progressive, they are not spots). However, my dermatologist is mindful that the side effects of this drug could adversely impact my longer term autoimmune disease, and I have therefore declined this treatment. I believe Isotretinoin can also cause longterm psychological effects, which is another worry when you're already struggling with the psychological effects of a visible skin condition. And, of course, there is no guarantee that this treatment will be effective.
I am beginning to manage the burning with the use of fans, including fans attached to my headboard as being horizontal induces more burning! I've also found supplements and moisturisers that appear to be helping, but it's really the progressive lumps and bumps on my chin that are causing me the most grief. Like many on this forum, I am unable to leave the house without a full face of make-up as my skin has been so badly affected. The discolouration and redness can be disguised, to an extent, but the lumps and bumps are impossible to camouflage. I wonder if anyone else on this forum can relate to this type of rosacea (described as a granulomatous form of rosacea by my dermatologist)? Any advice would be gratefully received, to say the least!
It is an incredibly difficult condition to manage and to accept. I no longer recognise my face and I wholeheartedly relate to anyone struggling with rosacea. It is a massive challenge, mentally, physically and emotionally. And the feeling of isolation is massive. I don't know anyone with this condition and my social circle is diminishing by the day - my fault, as I just don't have the confidence to mix with people anymore. My home is my sanctuary! x
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I feel your pain I really do! I also have a rare form of Rosacea (please read my bio), which has affected the appearance of my nose significantly. The psychological impact is horrendous isn't it. I truly believe, as a skin disorder, Rosacea should be taken so much more seriously. The full impact of covid is still to be realised too I think. I have a couple of friends struggling with some health concerns since having it.
So, I was also originally given umpteen course of antibiotics and topical cream, which did nothing at all. I was mis and undiagnosed for years. So, on a positive note, it's at least useful that you have a diagnosis, albeit not one you would choose I know.
I also had the burning/flushing variety, but mistakenly put this down to my age. Through a period of research as well as trial and error, I did manage to track down some personal triggers, which has helped considerably. For example, I worked out that mine were: caffeine, giving this up dropped flushing considerably. Sun also is a trigger. So I stay in the shade, use factor 50 daily, and wear a brimmed hat in bright weather. This has also helped. Wine, which I only drink occasionally, sets off flushing too. Stress, flushing is my body's response to stress, and when in place, I burn 'hot' for the period. I'm a natural internaliser, so don't shout or slam doors, I keep it all inside, a bit like the swan on water analogy, it's all going on beneath the suface! We've been trying to move for over a year, stumped by the economic climate mainly, so it's become a daily stress due to many ups and downs. But, understanding my triggers has meant flushing/burning has been much less. You may have different triggers of course. I've also invested in some facial ice globes, which are kept in the fridge, but help to cool the skin
I also changed all of my facial products. I have a seriously oily T zone skin (over active oil glands can increase the risk factor for Rhinophyma. Cetaphil and Cerave have a range of products that are free of oil, fragrances, and other skin irritants and very suitable for sensitive skin of all types. Not too pricey either! Likewise shampoo and hair products, I changed to fragrance, silicone, paraben free, as shampoo can make contact with facial skin also.
You could also ask your doctor if he thinks you're suitable for 'soolantra' (ivermectin) cream too. It's expensive, so GP's can be reluctant to prescribe it. But, it works on the demodex mites that live on our skin, believed to be overly active in Rosacea patients, and one possible underlying cause.
On the subject of isotretionin (accutane) I've just finished a ten month course, with quite a bit of success. It hasn't reversed the existing damage (nothing will in my particular case), but it has improved my skin considerably, and importantly prevented further progression. Eg: it's dried up the oil, reduced inflammation, closed up unsightly open pores. There can be psychological side effects in some cases, I didn't experience any personally. I was advised by a dermatology consultant that for Rosacea, a low dose is used over a longer period of time, as opposed to how it is used to treat acne, which is more of a high dose hit, so risking greater side effects. You have understandable concerns over balancing that with another auto immune condition, but it could possibly be worth another chat with your Dr to dig a bit deeper into any possible contraindications.
I hope that the above is helpful to you, take care for now, keep chatting. x
Thank you so much for your comprehensive response. I'm so sorry to hear that you've been suffering with this condition for so long. I feel as though my face has been annihilated - I really don't recognise myself and knowing that the condition is longterm and, in my case, progressive is almost impossible to accept. I believe that I too have phymatous rosacea as it can cause excess tissue resulting in lumps and bumps on the ears, chin and cheeks etc. I can literally feel when it is active and progressing to new areas. I feel so helpless.
I'm petrified of the potential side effects of Isotretinoin, especially as it is likely to heighten the symptoms of my longer term autoimmune disease. However, as it is the only treatment now being offered to me, maybe I need to give it more thought? Thank you so much for sharing your experience with me - it's really encouraging to know that you've had success. I'm guessing, like you, I wouldn't see any improvement in the current lumps and bumps on my chin (which are significant) but slowing down or halting the progression would be something. I just wonder what the longterm efficacy of this treatment would be, ie. would progression begin again after the course of treatment? Have you had any surgeries? I sometimes kid myself that I'll have some kind of surgery at some point and all will be good - but I know it won't. The build up of tissue and distortion of my chin is significant and I'm not sure if there is any type of surgery that could improve this. It's pretty soul destroying.
And the feeling of isolation is massive. I'm quickly becoming a recluse. I wonder how it has affected your social / family life? Have you been able to connect with anyone in a similar situation to you? I'd love to just be myself around people who share and understand my struggles. Self confidence and self esteem is at an all time low. I'm so pleased I had the courage to join this forum, it's a great start.
Thank you once again for your lengthy and really kind response - hope to hear from you again when you have the time x😘x
Your distress and feelings of isolation comes through and I'm so sorry to read that, but do get how you're feeling 100%!
If your rosacea is phymatous, then there's a chance you may be suitable for laser treatment, which can be successful for many patients. So, do bother your Dr over that too. Or even consider seeking a second opinion, which I wish I had done years back over a lack of clear diagnosis!
The sole reason I couldn't have laser surgery is that after years of misdiagnosis, by the time I got to a laser centre in 2021, my condition was beyond laser surgery, as it had progressed from sebaceous to fibrous. This means it carries too high a risk of scarring.
I had a skin shave to the side of the nose in 2017 at my local hospital, to take away the lumpy diseased skin, which it did. Nobody prepared me that it would leave scarring, which just added to my woes at the time. I had to pay privately for this as no NHS treatment is available locally. Previously in 2016, I had also had a biopsy in case of BCC, which also left scarring, so altogether my nose has taken a bashing!
But, for over a year I've been under the care of Guys & St Thomas Dermatology Centre in London, where I've had the best treatment. They are very knowledgeable over Rosacea.
I have to say that I was also told this is progressive, and so went on to fear the worst of course. But, with all the steps I've taken, and the meds (soolantra & isotretinoin) I've had, there hasn't been any further progression so far, either to my nose or anywhere else thankfully.
Here's a link to a credible dermatology web site for info:
Sorry, I also meant to add, that isotretinoin wouldn’t reverse my problems either, as too far down the line due to late diagnosis, same as laser surgery options. X
Thank you so much for taking the time to respond to me again x
Interestingly I was referred to Guys and St Thomas Hospital in London back in October 2022. My dermatologist was hoping I'd be seen within a month or two. Having contacted his Secretary a few weeks ago, it seems they have yet to hear back too. Apparently they are going to chase for me - I do hope so. I wonder if it's worth me chasing myself, I guess I have nothing to lose. I may also make another appointment with my dermatologist but it's very expensive (private).
I'm guessing my lumps and bumps on my chin are fibrous as they are so pronounced. My dermatologist said that no-one would consider laser treatment, even if they believed it would be effective, with such an active skin condition. I can understand that but desperation can override logic. I find it hard that no-one can definitively pinpoint the cause of this and offer short term, and longer term treatments to manage the shocking symptoms. I feel as though I've been written off now that I've declined Isotretinoin :o( Sadly Soolantra didn't work for me. In fact anything I put on my chin, including moisturisers, seems to activate it. I don't put anything on my chin now except for concealers and foundation, which are a MUST if only to disguise the discoloration.
Do you wear make-up to disguise your scarring? Is it now discolouration as opposed to irregular contouring? I worry that my progression is aggressive (just 18 months since diagnosis) and with an already over active immune system I believe Covid has driven the downward spiral of my health since beg 2020. The past few years have been a complete struggle with this most recent diagnosis feeling like the final straw.
I'm so pleased you now appear to have turned a corner with your phymatous rosacea. Well done to you for being so persistent. It is exhausting isn't it? Distraction is my best friend, but it's short lived as I can never truly get over the fears and anxieties that this condition has brought on.
Please forgive me for the outpouring. I think you said you're an internaliser, snap, I have spent my entire life supporting other people and taking on their stresses and strains. I haven't shared my fears with anyone in my life, other than my partner (thank the Lord for him) I've just gone into hiding. I fear I may never come out. The change in my appearance has been immense and I just can't face people who knew me before.
I really can't thank you enough for your time, I appreciate it beyond words x
I'd chase up Guys too, I had to a few times transferring from the laser centre to dermatology! It took from being referred in November 21 to being seen July 2022, waiting lists are long since the pandemic, such a back log. If you call them, they will look on the appointment system for you there & then.
Based on my own experience, Guys will fully assess & diagnose your skin problems for themselves, and they do seem to have good knowledge. My skin became fibrous due to the many years I'd had the problem in an undiagnosed way, you can't necessarily know from the appearance of your skin alone. Do bear in mind, it may not be possible to determine the cause of your Rosacea, which reflects my own situation. I'm suspicious that middle aged hormones played a part, I never had any skin issues prior to my early 50's.
I don't wear make up at home, but use light oil free make up if I go out. I started off trying to conceal the scarring, but I guess I'm further down the line now, so more at peace with it all. So, I just use normal make up these days.
It has been exhausting with lots of emotional lows, but I feel more in control as I now understand my Rosacea, and the steps I've taken seem to have prevented any further progression for the last few years.
It's reassuring to read you have such a supportive partner, mine found Guys and sorted an initial private referral for me. I'm truly grateful.
Please don't apologise at all, this has always been a safe place to chat. Try and hold on to hope. x
I may see my dermatologist prior to chasing Guys (last appointment Oct 2022) as the referral was to a consultant at Guys & St Thomas in respect of allergy testing. I have a history of allergies and believe I have also developed a histamine intolerance since contracting Covid. We questioned whether the histamine intolerance, or allergies (I was having quite severe related symptoms) could have been a trigger for the Rosacea. BUT my priority and REAL fears are associated with the rapid progression of my granulomatous lumps and bumps on my chin. As you say, we may never unlock the route cause of my Rosacea but targeted treatment (if it's even available!) is the holy grail, so seeing the right person is paramount.
Btw I was booked for a biopsy of my chin at the same time as a biopsy of my lip in March 2022 (I've also developed OFG Orofacial Granulomatosis since Covid). However, I had a meltdown on the operating table - I literally couldn't control my emotions so we decided not to do the biopsy on my chin. I think that was the pivotal moment for me to really acknowledge the devastating effect this has had on my mental health. Since then, and my last appointment with my dermatologist, I've really tried to work on my mental health. I'm now taking anti-depressants and I'm undergoing an online course of CBT. It's helpful, when I engage, but so often I just want someone to take away this condition. I feel that any level of mental health support won't change the devastating effect this has had on my appearance, but emotional and mental health are connected and must be addressed. If only to offer a different perspective or give you the tools to manage the most overwhelming and difficult moments. I would urge anyone reading this, whose condition is impacting their mental health to consider support. I am on the lowest dose of anti-depressants but the positive effects are huge - I've even started to sing along to songs on the radio again!! Not every day, but those days are precious and a reminder of the old me.
Back to your care at Guys - would you be happy to tell me who your Consultant is? I'm guessing you would recommend them? And is your care private or NHS? Now that your course of Isotretinoin has finished, will you be reviewed by them? So may questions, apologies! And I don't even know how to private message on this forum - maybe I should do that?
Your time is hugely appreciated, as always - I'm really touched by your desire to help others in your situation. Thank you xXx
I'm so sorry to read everything that you're going through, it sounds like such a tough time. Good that you have some professional support and meds to help at the mo'.
My treatment at Guys has been nhs. I saw a consultant privately just once, literally just a discussion about my condition and the possibility of laser surgery. He redirected me to the NHS pathway. I honestly can't remember his name, I'll try and look it up. At the NHS dermatology clinic I've seen a few different Dr's under the same clinic. They've all been lovely, and seem knowledgeable.
The isotretinoin, I started off on 10mg a day, with a view to increasing to 20mg, but I didn't ever as 10mg was helping. For the last few months I reduced to 5mg a day then to every other day until finally stopping late last month. The only side effects I had were dry lips and nasal passages, both were straightforward to ease.
Ah, lovely to hear from you again and so helpful, I can't thank you enough x
Fyi my longer term auto immune disease is Sjogren's Syndrome which targets moisture producing glands. Sadly my saliva and tear glands have been severely damaged. I am on immuno suppressant eye drops and gels, and I use lots of saliva replacement products. So you can understand that dryness, throughout the body, is a challenge for me. And since my OFG diagnosis my lips can be tricky to manage - swelling, dryness and cracking can still occur despite dietary changes. So the drying side effects of Isotretinoin are a huge concern for me. Catch 22 springs to mind!
I will let you know if and when I have another dermatology appointment and whether I manage to get to Guys, if only!
Please keep in touch, you've really helped and I will be forever grateful for your time x
Hi guys, I have been reading your posts and what you are both going through seems so bad. One thing I picked up on is the facial globes have not heard about them, but will definately be getting some, think it will help with my rosacea which is not as severe as yours, seems worse with the colder months and then going into hot rooms. I seem to be controlling mine with azaelic acid at moment. I'm not able to give you any help really just morale support, and hope that you find the help you need. I wish you all the best.
Thank you for the recommendation and support - I tried Azaelic Acid but my entire face reacted, super super red, sore and it peeled. No make-up and condemned to the house for several days!! I have thought about trying it again but just a touch, however, as you can imagine I'm afraid of triggering worsening symptoms :o( x
Not nearly as much, since I worked on my triggers, I'd say flushing has dropped 90%. It's only if I'm stressed or over tired now I tend to get a 'bit' of flushing only. I hope that's helpful to you 👍🙂
i've just spotted one of your posts that I must have missed saying that you don't believe Isotretinoin or laser surgery will reverse your issues due to late diagnosis. Do you believe you will potentially need further courses of Isotretinoin and/or surgery? How is your rhinophyma now?
One of my major concerns is that all of these treatments may have the potential to be effective in the short term but do any of them actually resolve the cause of our condition, as they are really only targeting the effect? x
Hi there, do bear in mind, those two comments refer specifically to my own situation, which is late diagnosis rhinophyma, and the area of my nose mainly affected had progressed from sebaceous to fibrous skin change, so at high risk of scarring from laser treatment. The course of Isotretionin was to help prevent further progression and reduce inflammation only, not prescribed as a cure. The initial cause of rosacea is usually unknown, I'm suspicious, for me, that the menopause played some part in it, as beforehand I didn't have any problems, but I've no scientific evidence to support that theory.
Hello, Thank you so much, as always, for your support and invaluable advice x
It's interesting that you believe your Rosacea may be related to the menopause. Although I believe mine was likely associated with my aggressive immune system, I'm only a few years into the menopause myself so it's possible that hormones could have played a part too. Have you had your hormone levels checked? I'm guessing you're not on HRT?
I've been on HRT for about 4 years now due to hot flushes and night sweats and I can't imagine coming off as these symptoms would likely fuel the burning of Rosacea!
Oh my, I so wish I'd had HRT, I experienced an awful peri & menopause, but was stuck in the era when HRT was thought to be too risky! I will certainly be supporting my own daughter with all of that when her time comes! I'm a bit beyond needing hormone testing these day, aged 67 ☺️ (young at heart though ... mindset of that every day is worth living and we will next get today back again so make the most of it)
I'm guessing that there's many causes of Rosacea. I've just been unlucky with the set of circumstances that have led to my rare form. And doubly unlucky with years of mis or non diagnosis.
Looking back, I wish I'd been more confident to question dr's, and push for second opinions. Research into my condition has been most helpful, even at this late stage, knowledge is definitely strength. I go to every appointment now armed with facts and related questions, it helps to frame the consultation in a mutually respectful way. x
Apologies for delayed response, I've had a very challenging week and sadly I let it get the better of me :o(
I'm so sorry to hear that you had such an awful experience with peri and menopause. There are options, other than HRT, that could have been explored. It's very disappointing that you didn't receive the help and advice you so clearly deserved. I hope you are at least beyond those symptoms now? I LOVE your attitude - young at heart and your mindset that every day is for living, especially given our challenges. Life certainly is a gift and we can't rewind time. But it's tough when our emotions are so strong, and logic goes out the window. As you said previously, you're further along your journey than me - diagnosed almost 2 years ago now and still working on those very destructive and unhelpful thoughts and feelings. I'm pleased to hear that you have a daughter and you clearly love her dearly. Another gift that will help you on your journey.
Fyi my referral to Guys last October, chased twice, has finally received a response - Consultant no longer carrying out patch testing!! Can you believe it? I've now been referred to a private Clinic in London in respect of allergy testing but fear that I won't be able to cover the costs. It has given me the impetus to make another appointment with my Dermatologist and to push for a referral to Guys Dermatology Unit (please let me know if you have the name of your original Consultant) to investigate the rare form of rosacea that I appear to have, as opposed to allergy testing alone.
Thank you, as ever, keep smiling . . . . . . :o) x
I'm so sorry to read that you've had such a bad time, there's a lot going on for you. The unhelpful thoughts and feelings are very intrusive and difficult to manage at times. I absolutely remember logic leaving the building many times. It's my understanding that you have the right via your GP to 'choose and book' whichever hospital you wish to be seen at. So many people seem to be opting for private referrals these days, our NHS is sadly in a bit of a sorry state.
As you rightly say, I'm probably bit further down the line in acceptance these days, but that has taken time, and included many ups and downs along the journey.
I'm past the menopause these days, it was just the era of 20years ago, when HRT was believed to increase the risk of breast cancer. There is so much more available these days, and some has moved to over the counter too, which is great.
Do take care, I've messaged privately about the route I took at Guys. x
I've had a short period of respite recently but sadly the flushing has been building again over the last few days. I wonder if mine is connected more with my overall health and what's going on on the inside, as opposed to external triggers. My health is certainly very complicated :o(
I'm so sorry to read that your overall health is complicated, but your rosacea diagnosis is definitely worth more investigation, do ask those questions of your doctors and seek a second opinion if you're not completely happy 🙏
Just reading this thread after another sleepless night struggling with anxiety. So many things you said have struck a cord with me NoPreconceptions. I feel like my life is over. I can’t cope with thoughts of the future and how my appearance will change with the inevitable progression of my rhinopehyma. The constant burning reminds me of the changing nature of my skin every single moment of the day. I’m currently off work sick due to the psychological impact and honestly, if I had the choice I would never leave the house again. That’s not an option for me as I’m a single parent with a full time job. Without work I couldn’t support my family financially. I’m currently on a year long NHS waiting list to see a dermatologist in the North East of England. My GP has just made a referral to a private derm and I’m hoping to get an appointment soon. I also have my first counselling session this morning. The antidepressants I’ve been prescribed are helping a little but I think there’s only so much they can do to alleviate the anxiety over a progressive condition that causes a visible difference. I feel like the life I had before rhinopehyma and the life after are worlds apart. I’m in some kind of mourning and just desperately want to rewind time.
How are you doing with it all?
Hope you’re well MaveB? You really are a beacon of hope.
I'm so sorry to read how much anxiety is affecting you. It's a vicious cycle isn't it, as a lack of sleep seriously impacts our resilience to get through the day. Very timely that you have a counselling session this morning, you're clearly feeling incredibly low about your diagnosis. I've been there, I honestly do get it. I'm so hoping that you find it helpful 🤞
Three things that chimed with my own experience from reading your post: You feel like you're in mourning, and for me, reflecting back, I felt exactly that. I still have moments of grieving my nose pre rhinophyma. I found that time and knowledge helped me to come to terms with things more. Eg: getting to an effective dermatology dept and self-management helped me to feel more in control. If you've had a private referral, seeing a Dr should come soon for you. Do try and think through (easier said than done I know) any personal triggers, what are the situations when flushing occurs, is there anything you can change that might help prevent? Caffeine was a real devil for me, I couldn't believe how much that affected flushing, until I gave it up. Also, you're very concerned about progression, I get that 100%, I was consumed with it for a time. In my own case, it's never happened. I have rhinophyma to a point, but the extreme images you have poss' seen on line hasn't happened. I haven't had any progression for years now. I think handling the underlying Rosacea has helped to tame the beast. Also, I'm through all of the hormonal changes (if they are a factor for me, I'm suspicious, but have no real proof). My own coping tool is to try and stay in the moment. (Again, easier said than done I know) I haven't had an emotional melt down for 2-3 years now, which is real progress.
Hope that the above isn't just a lot of gobbledygook. Take care for now, keep chatting x
My first counselling session went well. I feel washed out like a dishcloth now but I guess the emotion of it all is better out than in? The session ended with a breathing meditation which was wonderful. I’ll definitely be practicing that daily.
I wanted to chat about triggers. There are so many! Obviously the weather, sun, exercise, emotion - all of which make life pretty difficult to negotiate. I’ve been trying to eliminate food triggers but it’s a minefield! There’s so much conflicting advice on the internet. I’ve cut out caffeine, alcohol, dairy and nightshade vegetables/ high histamine foods. Do you follow a rosacea diet? Are any particular foods a trigger for you?
Oh, my poor love. I so feel for you, and can empathise with your feelings of wanting to hide away. Ordinary rosacea is bad enough, but it's devastating when you start developing the lumps. I wish I could give you some helpful advice, and wish even more that I had a magic wand and could make it go away.
It sounds as though you are doing what you can, what with medical advice and the full makeup. Is it special cover-up makeup?
One thing I am thinking is that people don't see you as closely as you see yourself so, unless they were very close to you, they might not notice the bumps.
As someone who is paranoid about my facial flaws I have several mirrors, including a x20 magnifying one. Of course I see every open pore, blackhead etc which, to be fair, most people wouldn't notice!
Although my mental health is so much better than it was, I still hide away in my flat and am scared to go out because I feel vulnerable.
What I am trying to do (and it's so hard) is to think positively and try and change the negative thoughts in my mind.
I do hope you have supportive, understanding people in your life - that can help so much.
We are so lucky to have this website, where we can be in contact with people like us. It really helps to share, doesn't it, especially when you know no-one will be dismissive of you.
Bless you - I'll be thinking of you and supporting you remotely.
By the way, this may not help, but it's worth saying. It's better to be a beautiful person on the inside than outside. Just know what a lovely person you
are - people will like you more than someone who is beautiful, but not a nice person!!!
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