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skin AND ocular rosacea at 27, tried so much, nothing works

PostPosted: Sat Jan 28, 2012 4:53 pm
by stuffandstuff
Hi everyone,

First of all I apologize for making this my first post. I used to be such a positive, upbeat person, but now I feel ashamed to say I'm exactly the opposite. I am a 27-year-old female. Over the course of the last 5 years I have been diagnosed with PCOS, endometriosis, and numerous bouts of dermatitis. I have had severe acne since age 10, and was diagnosed with hypothyroidism at age 18, and bipolar disorder at age 20. I have lost most of my scalp hair due to the PCOS and am like a yeti elsewhere (sounds hilarious doesn't it lol; I just wish I could see the funny side).

I have not been diagnosed with rosacea because my doctors don't listen. They have this outdated notion that to have rosacea one must have rhinophyma. I've been suffering from debilitating constant redness for over a month now. I saw the doctor yet again last week and he said it would go away in a few days, but it hasn't. It began around a year ago as general flushing but now it's constantly bright ruddy red irrespective of what i do and don't do. The only time it's slightly lesser is when i wake up in the morning, but within an hour it's back to beetroot-tomato colour again. I am mixed race with an olive complexion so this is NOT natural. I cannot wear makeup because it only exaccerbated my acne. The ocular rosacea has been in both eyes for over a week now, with no signs of dissappearing.

Nothing I've been doing for a year seems to make any different; not omega 3, not zinc picolinate, not reducing gluten soy alcohol or dairy (I will admit however I have only reduced them, not removed them entirely), not flax seed, not dairy-free probiotics, not manuka honey nor aloe vera nor oatmeal. I tried an oatmeal and live yogurt mask the othet day and it just made me worse. I am at a loss.

At 27 when I should be climbing the career ladder and living life to the full, I do the opposite. I have alienated myself from my friends, and I even resigned from my job a few weeks ago, I'm ashamed to say. I just don't feel like I can face the world anymore and if it wasn't for my pets then I would be contemplating suicide. I'm sorry for the extreme negativity of this post, but I just don't know what to do any more. Existing with these ailments is proving to be too much for me. I never used to be a 'weak' person but I feel I have become one. I don't even recognize myself any more.

Sorry for the novella too.

Re: skin AND ocular rosacea at 27, tried so much, nothing works

PostPosted: Sun Jan 29, 2012 2:48 am
by LoisAnne
(shocked) That is me, being shocked at how your doctors have treated you! Have you seen an actual dermatologist yet? If so, and that derm is so out of date in his/her thinking, then you need to find another one! There are treatments out there that can help with the redness and you should be counseled on what to do. I would think beginning with an antibiotic would help. There is Oracea to consider, which is a low dose, long term use antibiotic or doxycyline or minocycline are good antibiotics to use in the beginning to get your rosacea under control. I am sure if you have been browsing this site that you have learned about being gentle to your skin, using cetaphil or ceraVe cleansers and moisturizers, for example.

I know it is hard to face the world when you are feeling so down and not looking your best but friends and family can be very supportive and helpful at this time. I can understand the comfort of your pets because they are not judgmental, they give us unconditional love. Many times I have thought to myself, "my dog and cat don't care if my face is all broken out" and that is true, of course. But, you need to be around people too, especially when you are depressed. They really care about you, not your face.

It sounds like you have had more than your share of medical problems and I am sorry about that. You really do need a dermatologist who is knowledgeable about rosacea and who cares about your welfare. One is out there, keep looking. (hug2)

Re: skin AND ocular rosacea at 27, tried so much, nothing works

PostPosted: Sun Jan 29, 2012 1:54 pm
by fanny
Hi and welcome
You have certainly been through the wringer and for that I am so sorry. Lois Anne is correct, you must see another dermatologist. Doctors provide a service just like a car mechanic, you would not stay with a mechanic who could not fix your car, would you?
I do understand not wanting to face people, however you do mention you have thought about suicide, that cannot be ignored. Please see someone you are comfortable with ie therapist, priest, rabbi, spiritual advisor or counsellor to talk about this. Talk to your regular doctor, there are medications for depression. Please seek help, keep on knocking on that door until you get the right help.
Take care

Re: skin AND ocular rosacea at 27, tried so much, nothing works

PostPosted: Wed Feb 01, 2012 9:31 pm
by littlemermaid
(hug2) Stuffandstuff, You need an ophthalmologist too, sweetheart, to assess the ocular rosacea ongoing and help you look after the meibomian glands with eg warm or cold compresses, and any dry eye (if you need eyedrops make sure they're preservative-free). Another good reason for looking at low-dose oral antibiotics like doxycycline with either a dermatologist or ophthalmologist. More advice on dryeyezone.

Re: skin AND ocular rosacea at 27, tried so much, nothing works

PostPosted: Tue Feb 07, 2012 8:46 pm
by stuffandstuff
Thank you very much for the kind replies (hug2) and sorry for the lateness in mine. You're too sweet (bigkiss)

Yeah, I've never had a good relationship with doctors. I've been to so many over the years due to my various health problems, testing for years trying to find out what's wrong with me, which they look upon as hypochondria despite my ailments being proved.

Since my original post I paid extra to see a derm who didn't require a referal, and she diagnosed rosacea types I, II and IV. She prescribed me Metrogel and Metronidazole, however I have reservations about taking antibiotics...

Until yesterday I had gone an entire week on the paleo diet, with no lactose, gluten, grains, soy or alcohol, and low carb high protein... The ruddiness decreased by the day, and was virtually gone. The flushes in response to hot foods + drinks lessened slightly, but the ones regarding indoor heat continued as bad as ever. But I was grateful if only for the general skin tone gradually returning to normal. Then unfortunately yesterday I made the ridiculous mistake of getting cups of tea mixed up and drank one with lactose milk (my friend got the one with rice milk). No major blushing though. Today, however, I made an even stupider mistake of eating a bread roll which i thought was gluten free but turned out not to be - and what is more, it contained not only gluten but dairy and soya too. Within several hours my cheeks and chin turned tomato-red, and they've stayed that way. (vangry) Indeed, my pets don't care, but mirrors are my enemy right now.

Re: skin AND ocular rosacea at 27, tried so much, nothing works

PostPosted: Tue Feb 07, 2012 9:28 pm
by LoisAnne
Well, the up side of those mistakes is that you are learning what your triggers are, for sure! Sounds like you were making steady progress with the careful diet and I admire you for sticking to it. We all make mistakes but if you learn from them, that is a good thing.
I would not be afraid of a short term treatment of antibiotics. I took minocycline for a few months and it brought the papules more under control. I know that Oracea is supposedly low dose enough to not have an antibiotic affect but rather just act as an anti-inflammatory. An interesting aside, I used to have (and still do have at times) some sort of scalp problem where it would break out in tiny bumps. It may have been seb-derm or some kind of folliculitis. Anyway, I always noticed if I had to take minocycline for an infection (usually for an ear infection, I did not have Rosacea at that time) my scalp would clear up. When I mentioned this to the dermatologist she finally agreed to give me a prescription for it to take as needed. (for whenever my scalp broke out). But, I could see she did not see any relationship between the antibiotic and my scalp getting better. However, the medical student who was there told me (after the derm was out of the room) that antibiotics have anti-inflammatory properties and that was probably what was helping. Now anti-biotics are common treatment for rosacea and maybe seb-derm as well.

Re: skin AND ocular rosacea at 27, tried so much, nothing works

PostPosted: Thu Jul 19, 2012 9:07 pm
by JP1
Hi, I read about experiment with the paleo diet, how has it been going this year? I am 18 months into rosacea and aware of how certain foods make things worse. Would like to discuss this further.

Re: skin AND ocular rosacea at 27, tried so much, nothing works

PostPosted: Tue Sep 25, 2012 8:36 pm
by stuffandstuff
Hi again everyone (wave)

I've been away for so long, sorry.

In that time, I tried numerous approaches to alleviate my rosacea; paleo diet, avoiding triggers, sulfur (the most recent one), aloe, water spritzing, drinking approx 3 litres a day of ice cold water, reducing my thyoid meds, trying Metformin (jujst made me gain weight, and haven't lost it since coming off it), herbal supplements (as in my first post but now with olive leaf, probiotics, vit c ester, vit e, b vits (occasionally, because of the niacin flush) washing once a day instead of twice and with gentle home made cleanser, trying to be happy... Sadly, despite sticking to them for months on end, none of them worked and I feel like I'm back to quare one, with rosacea worse than ever. I react to sunlight, heat, any form of exercise no matter how lesiurely (anything above walking is impossible for me now or I'll be beet red for DAYS; i'm not kidding), alcohol, spicy food, acidic food, lactose...and now I seem to flush of my own accord irrespective of triggers. I am permanently red, very frequently burning, and often have p&ps. My occular rosacea comes and goes.

I don't know what to do at all now. In only 9 months the condition is just getting worse. (tears)

I'm sorry to be such a depressive little whiner but I am at the end of my tether now. This condition is ruining my life and nothing I do seems to make a blind bit of difference except exaccerbate things in the long run. I'm desperate and have nowhere to turn.

Re: skin AND ocular rosacea at 27, tried so much, nothing works

PostPosted: Tue Sep 25, 2012 11:28 pm
by LoisAnne
I am so sorry to hear that you are getting worse. :-( Have you been back to the dermatologist recently? It sounds like it is time to get a reassessment. Did you try the antibiotics? (sorry, I cannot recall if you mentioned that). If not, I really would give them a try. Either doxy or minocycline. I hope that someone can help you. Always feel free to vent on here! (kisser)

Re: skin AND ocular rosacea at 27, tried so much, nothing works

PostPosted: Sat Mar 23, 2013 3:41 am
by RosaceaKaren
Hi, sorry you are having a rough time! (I thought I had it bad. I got diagnosed last week - I'm 34 but had it for a few years- and my doctor prescribed me Metrogel and I changed my diet around completely, avoid sun, heat and changing temperatures including wind as much as possible. The Metrogel is like a miracle for my face, but maybe the combination is helping a lot). I seem to have ocular rosacea too. I've used resetting drops mostly and OTC allergy eye drops and it's helped some with the bloodshot and wet looking eyes, but the sensitivity to light is always there. My doctors for years misdiagnosed me, likely because I am Chinese (and not Scandinavian, Irish or English). I was tested for food allergies and diagnosed with just general allergies causing all those eye infections. When food allergies were negative, they said if avoiding certain foods help anyway, then do it.) I definitely know what you mean, I've not wanted to go to parties or get-togethers and hate people taking any pictures with me in it.

At some point I'm going to see the eye doctor and a dermatologist soon too (once I get the nerve to go). I got tired of appointments and possibly wasting time, but a friend inspired me to go to the doctor again (went to a different one; appointment specifically for "I think I have Rosacea" and I mentioned all the symptoms; after finding out what Rosacea is and that I have like 9 out of 10 symptoms). Good luck! I hope you will have more luck with the doctors!

(I had PCOS at 27...still have it, but when I finally was able to conceive and had a baby, it didn't matter so much. I would say when I was on the Dukan Diet last year, for that time, my skin didn't break out at all...just the flushing after my usual hot shower back then).