Most awful NHS appointment ever

[SharonS]

Hi Gemma,

Thanks for your reply. Yes, it is the most challenging thing I've ever had to go through and everyday I feel like I can't believe this has happened to me. Do you have a diagnosis? I recently went to see a brilliant doctor who suspects ocular rosacea and possible hormonal imbalance due to 2.5 years with progesterone implant. Possible immune dysfunction but he suspects hormonal imbalance more strongly. I have been prescribed FML, chloramphenicol and cyclosporine. Struggling to get access to the latter at the moment. I am in a lot pain but by far and away it is the redness that causes me the most misery. It is getting worse and I'm so embarrassed, i keep looking at people's eyes (old and young) and my eyes are just awful compared to theirs. I used to have such nice eyes ahhh and they are very big so these red veins are so obvious, I wish I could just shrink them somehow. I feel truly miserable and can only hope for improvement someday. Xx

[Gemma90]

I understand your frustration and anger, esp about being only young and going through this! Im 24 aswell. And even if I have a 'good eye day' there isn't a moment in that day where I think about what has happened to me. I look at other people my age and wish I could be like them again.

My experiences with the NHS have overall been similar.... one consultant even said, I quote 'You read the internet too much'! Well of course I do! I want to fix this.

Personally, I think my dry eye may have been caused by something hormonal. I have read before about eyes having hormone receptors, and I seem to think my eyes get better around mid cycle.

[unicorn]

SharonS it is very interesting that you say your eyes got drier after you stopped wearing your lenses. I wore soft contacts for 19 years with no problems or symptoms of dryness whatsoever- it was only when I went from full time lens wear to part time that my eyes began to get dry and then when I became allergic to my lens solution, my eyes spiralled out of control. It is interesting that my ophth thinks my lenses were actually ******g my symptoms prior to this. He is now suggesting I look into mini sclerals which I was happy to discover my local optometrist is now able to fit.

[SharonS]

Can you get CLIDE from just 3/4 years of soft contact lens wear? I have been querying this at my appointments but I've been told it's unlikely... It would explain something though. I noticed that my dry eyes got even more dry after I stopped wearing lens full time between August last year and January.

[SharonS]

Hi Cathy, no it was just regular first line blood testing at my GP practice.

[cathy8889]

Hi Sharon, did ou have these tests done with a rheumatologist? X

[littlemermaid]

Unicorn, I don't think it's a very thorough article. There are certainly other meds x

[unicorn]

Very interesting, Littlemermaid, thanks for this. Not great news for those of us with an inflamed dry eye surface that can't use steroids though

[littlemermaid]

Tear film environment disrupted by introduction of a contact lens. A practitioner describes the signs, symptoms and treatments for contact lens-induced dry eye.
Ocular Surgery News U.S. Edition, July 1, 2007. Amar Agarwal, MS, FRCS, FRCOphth http://www.healio.com/ophthalmology/...a-contact-lens Thank you to the kind doctor who put this article in his newsfeed for us. Interesting - 'If the patient presents symptomatically and objectively as a dry eye patient but has a “white” noninflamed conjunctiva, the use of goblet cell-mucin enhancers in the conjunctiva with lacrimal gland stimulus, ie. cyclosporine, would be considered appropriate. If the patient appears with a “red” inflamed dry eye, then intervention with steroids would be deemed more appropriate.'

[SharonS]

Hi Lizlou, thanks for your message and support. Never been to a rheumatologist but just had my first blood test today since this all started. I asked what was being tested and she said it was basically the full works, thyroid liver kidney, looking for inflammation, b12 and some other things. I feel glad to have got that done, even if it produces no results. I would like to PM you if that's OK, to ask about your experiences with doctors and any treatments you have had. Xx

[lizlou29]

Good luck SharonS, I've run the gauntlet of useless ophthalmologists but have now found one I can work with. Not sure all clinics are the same but when I go to my appointments (every 2 months) I often get called in by some random ophth and now I just say I'm there to see the same ophth I've seen before so he can monitor my progress. Took me ages to learn to stand up for myself but there are only so many times you can hear "goodness you've tried everything", "your eyes are very dry aren't they, you need more drops and warm compresses" etc etc.
Have you seen a Rheumatologist? I know you don't have a dry mouth,I dint either but they still suspect Sjogrens despite negative blood tests and an inconclusive lip biopsy. I have ocular rosacea so i feel that's my main problem. I've had dry eyes since my early 20s, I'm now 31 so I know how much it sucks going through this at a relatively young age.
Glad Unicorn could help. I'm always here if you want to vent through PM.

[SharonS]

Also thank you to everyone else you commented for your kind words and support. I could just cry when I read some posts because of how supportive everyone is on this site to each other. Take care.

[SharonS]

Hi unicorn,

I am going to send a private message for some more information if that's OK. I'm struggling to come to terms with this disease, even though it is worsening with time, I still sometimes think I will wake up normal and that it's not really happening to me. This site is 100% without a doubt the only place where I have been able to source any real information about dry eye and treatments. So thank you for your information and support.

[unicorn]

Hi, so glad it was useful info for you and that it's handy to get to. I'm actually seeing Peter tomorrow for a check up so I'll mention that you'll be seeing him!
As for going to London... That's a difficult call. As far as I know Peter Ivins doesn't offer IPL so if you want to get that you'd have to travel.
Have you seen a good ophthalmolgist? I am currently having to go to London for this (and pay privately) - imho it has been money well spent, but I like to have good local optometrist back up.

[SharonS]

Hi Unicorn,

Thank you so much for that recommendation. I had no clue that was available do nearby to me. I'm originally from glasgow and moving back there next month so it's very handy. I've made an appointment next week with Peter ivans. I also currently have an appointment with the dry eye centre in London next Thursday primarily to see if I'm suitable for IPL. I wonder if I should reschedule this until after seen peter ivans?

Thanks again