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  • Don't know where to start - worrying and worrying.

    Hi everyone,

    Firstly, I'm sorry if my post gets too long or rambling. I can't see properly at the moment and it's hard to think straight (partly because of the eye problems and partly because of stressing and getting into a bit of a state).

    I've been trying to read through this forum for a few months. I'm so glad I found it and am very grateful to people for all the helpful advice. I think I'd be in an even worse position right now if it hadn't been for this.

    I've wanted to post and ask for advice for a while but don't know where to start. I hope someone can help and advise.

    I feel like at the moment I'm being left to rot - and it doesn't matter (to the opthalmologist/GP) that I need to be able to see properly and not have near-constant pain and discomfort in my eye in order to be able to work.

    Also the pain is only really in one eye (right eye). Although the past month or so, my left eye has started to get more sore. It's actually getting worse since I've stopped wearing contact lenses. Is this normal?

    The background: I've got a fairly strong eye-sight prescription (high myopia and astigmatism) that is over -10 in one eye. I qualify for free sight tests here in the UK because of my prescription.

    I'm in my late 30s (female) and have worn rigid gas permeable contacts for nearly 25 years. I used to wear these daily until the eye problems started a few years ago, and I've always had glasses for back-up (and to rest my eyes evenings and weekends).

    I don't know if it's related or just coincidence but about 8 years ago I had a scratched cornea. I saw an optician and was told it would heal on it's own and to just not wear contacts for a week.

    Over the next 3 or 4 years, I got another 2 or 3 scratched corneas, and each time the optician told me it would heal by itself and to not wear contacts for a week.

    A few weeks after the first scratched cornea, I had to get new contacts (can't remember if it was a changed prescription or I'd lost a contact). As soon as I put the new ones in, my right eye was uncomfortable. I went back 3 or 4 times over the next few weeks and each time the optician brushed it off and told me they fitted fine, nothing was wrong, and to just use eye-drops a few times a day. Nothing was said about dry eyes or anything. They just said it was normal to use eye-drops whilst wearing lenses.

    Because my prescription is fairly high, I've always felt more confident in contact lenses. Psychologically and because glasses are fairly uncomfortable (even with the expensive high-index lenses). But I was prepared to wear glasses more if I had to. I asked the optician if there was any need and they said no, and I was fine with my lenses.

    Over the past 4 years things got much worse. Still just my right eye. Everytime I put the right lens in, the eye felt uncomfortable. I used to solve this by taking it out, re-cleaning it, then putting it back in.

    Then, it started getting uncomfortable and a bit painful after an hour or so. I stupidly ignored this for a year or so (partly because I couldn't face another brush off from the optician).

    Then I was made redundant. I hated the job and the people were really unpleasant there - so I saw this as an opportunity for a new direction. I had a pay-off and wanted to take time out and then study so I could make a career change.

    I knew I had to sort my eyes out first. I went to the optician again as I'd decided to rest my eyes more from my contacts and I needed new glasses (my old glasses are from 2000 so the prescription is out of date and they're very, very scratched).

    The new glasses were instantly unwearable. I couldn't see out of them properly and felt dizzy all the time. The optician tried to tell me it needed more time to get used to them - but they eventually checked and admitted the assistant hadn't fitted them! I got a refund but had now lost faith in that optician. I didn't know where to go for a new optician. All the advice was "find a good one" but I didn't know which one was good. So I put it off.

    I sunk into a rut. I wasn't working and had some savings so lost the urgency of getting my eyes sorted. I think I got a bit depressed too - I was stuck indoors mostly and didn't feel "with it" in my old scratched glasses (and my contacts hurt too much - in the right eye - to wear much).

    Eventually I realised I had to sort things out. And my right eye was now starting to hurt even when I wasn't wearing my contacts. Which was most of the time. I was staying in the house most days, only going very occasionally to see friends (and leaving after an hour or so because of my eyes), and once or twice a week to the local shops for food, etc.

    I went to a new optician. They finally found some reason for the right eye problem. They said I had MGD. They told me to buy an eye-bag and also to bathe (both) eyes with either baby shampoo or bicarb of soda. Also to use eye-drops (no specific drop was suggested).

    Two months later this wasn't helping so I went back. The optician is very well-meaning but doesn't seem to know much more. He said he couldn't refer me to an opthalmologist because he couldn't see anything wrong (despite seeing the MGD and now he said it was blepharitis).

    He told me either go to the A&E of Moorfields (I live in London and not that far from Moorfields) or try my GP.

    I felt wrong to go to the A&E because although my eye (still only the right eye) was painful (and had the gritty, something-in-eye) feeling, it wasn't agony. So I went to my GP. She couldn't see anything and didn't seem to know much about MGD or blepharitis but I begged for a referral and she agreed.

    I was referred to an opthalmologist who visits the GP surgery regularly. This is where my problems really escalated. He was so rude. I could cope with not knowing anything about the problem more than this. I was the last person left in the surgery waiting room. The appointment was one hour behind schedule and the surgery was starting to close. I understand waiting because I know the NHS is so busy. But his rudeness was something else. The patient before me was sat right outside the consulting room (instead of in the surgery waiting room) so perhaps the opthalmologist wanted to get rid of me quickly to return to the other patient? Anyway, I started telling him my symptoms but before I could finish, he interrupted and told me he needed to examine me. He then said "I'm not going to prescribe you antibiotics. At that stage, I didn't know antibiotics were of any use for dry eye/blep/MGD. So I was taken aback. I hadn't mentioned antibiotics. He barely glanced at my eye, said everything was fine (because I was okay with the vision test - I never thought I had a problem there) and told me to take celluvisc.

    He then started asking me irrelevent questions. I'm only a few years off 40 (and he asked my age) but he started asking if I lived with my parents, did they help me financially, did I share a bedroom with my boyfriend (once I said I didn't live with my parents). I was again a bit taken aback. He then tried to recommend laser eye surgery. Despite telling me my eyes were a bit dry! And my age (I understand that by 40, it's not really worth having the surgery).

    The rest of the time was taken up with him trying to convince me I had OCD. I asked once to wash my hands - before touching my eye. I'd suffered for so long with eye problems (and had it drummed into me since starting to wear contact lenses) that it was important to wash hands before touching eyes/contacts.

    I gave him a chance and tried the celluvisc and kept up the eyebag and batheing my eye. It didn't help so I returned to the GP and asked for a referral to Moorfields.

    I pinned my hopes on the appointment, which was 2 months away. I can't describe how horrified I was to hear the name of the opthalmologist. It was the same awful man I'd seen at the GP surgery! I didn't realise until just before I was called to be seen. I'd waited an hour in the hospital waiting room and heard the receptionist mention this man's name. I immediately asked the receptionist if I could see something else and told them I'd had a bad experience with him. They refused to do anything and said if I didn't see him, I'd have to wait for a new appointment (and that would be another 2 months). By then, I was tired (I always find GP and hospital waiting rooms hot) and didn't want to keep waiting another few months. My eye was hurting as well (I had to wear my contacts because my old glasses were too scratched to see out of properly).

    I thought I might as see this man. Big mistake. He was as rude and unpleasant as last time. And again didn't examine my eye properly. He was going to send me away with no help - so I desperately insisted that something had to be done. He said he'd refer me to a specialist at this hopsital (Moorfields). I recognised the name from this forum so was relieved that even if I had to wait a few more months, I would finally see someone who could help. I don't know if I can give the name or not?

    I then panicked again because a few weeks later I received a copy of the rude opthalmologist's referral letter to the specialist. He outright lied - said I was able to tolerate contact lenses. I couldn't believe it as I'd emphasised that the main motivation in seeking help (more than the pain and discomfort) was not being able to tolerate my lenses! So I worried that this downplayed my condition and the specialist wouldn't take me seriously.

    I felt like crying - not because of his behaviour. I've dealt with difficult people before and know to just forget it. But because I was not only no closer to any help for the eye, but he had made it worse. He downplayed my symptoms and now the GP would think there was nothing wrong - and how could I get help then?

    I finally called PALs at the hospital. They were very nice but were overwhelmed. It took 3 weeks for them to get back to me. They assured me they'd updated my notes and also arranged for me to see an optician at Moorfields the same day as the specialist appointment. As I was mostly housebound until I could get new glasses (because I couldn't wear the contacts).

    I had my appointment a week ago. Maybe it was a mistake seeing the optician and the specialist the same day. Btw, in case it's relevant, I didn't actually see the specialist (whose name has been recomended here). I saw someone working under him in his clinic. My original appointment with the specialist was 9am but I'd been squeezed in to see the optician at that time so was told I'd then see the specialist at the end of the morning surgery. By the time I saw this new opthalmologist, I was tired and my eyes really hurt. So it was harder to be with-it. I had tried to prepare notes - what to say, listing my symptoms, history, how it affected me. But the opthalmologist I saw was obviously rushed (not his fault - it was obviously a busy day). He started to examine my eyes before I finished detailing things.

    Part of the problem is that I was so keen to ensure he realised the extent of the pain and discomfort, I felt he had to realise that the first opthalomologist wasn't correct when he said I could tolerate lenses. Now it seems the new opthalmologist thinks my problems are solely/mostly related to contact lens wear. Despite me almost never wearing lenses anymore. For around 3 years, I go most of the week not wearing lenses and only wear them once or twice a week (for one hour at most) just to get essential shopping done. I have also got several weeks with no contact lens wear at all.

    I accept I mustn't wear contact lenses for the time being. But I need the GP, opthalmologists, and anyone else relevant to realise the problem isn't solely a case of stop wearing lenses and it's all fine. Or I won't get treatment and things won't get better.

    And the pain and discomfort is there all the time. So now, I have a new report from the second opthalmologist. Saying I have dry eyes because of contact lenses and he's recommended not wearing lenses for a few months.

    The pain is still there and is actually sometimes worse when I wear glasses (sometimes it's a bit better when I don't wear any glasses and just sit in the house not seeing properly).

    So I scared I'm not getting the correct treatment and I need to start something because it might not work overnight - and I've now been trying to get help for nearly a year. I can't afford to keep not only not working - but not even trying to work. I also wanted to start part-time study this September to retrain. But I can't even look into courses let alone apply.

    In the immediate term, I have little money left. So I asked my GP for a sick note. I thought I just needed a few weeks until I saw the opthalmologist and got the new glasses. I guess I just thought (hoped?) once I had the specialist appointment, I'd be starting some sort of treatment and would be okay to start applying for jobs and study. Also I hoped I get the new glasses the same day.

    I have to wait a few weeks for the new glasses so can't see properly in the meantime. And I've just been given yet more eye-drops to try. Which don't really seem to be helping much. I have also been given doxycycline. I asked for that because I'd read about people gaining help from it on here. But I didn't demand it - I asked if he thought it might help. But I realise even if it helps, it might take a few months at least to help. I'm so upset that the original opthalmologist didn't start me on this because I saw him in November.

    I just don't know what to do and whether I should try and speak to the clinic receptionist (for the 2nd opthalmologist who I saw last week) and try and get my notes updated (to be more accurate) or speak to PALs again or what.

    I also don't know what to say to my GP. I have an appointment tomorrow and I'm going to ask for a longer sick note - still just for a month or two - just to cover me until I am sorted with my new glasses. Because until then, I can't see properly so can't try and work or study (or watch TV or use a computer or read for any length of time). But now, they might think it's just a case of not wearing contacts and I'll be fine. I'm hoping I can explain the exact situation and it will be okay. I'm probably panicking because of everything.

    I'm mostly concerned (aside from the immediate money issues) of just being left not properly diagnosed and not properly examined and therefore not starting appropriate treatment. Which I'm now aware (from reading this forum) might take months to start working. I don't want to let my life slip by just doing nothing because my eyes hurt too much. I'm just getting scared and feel helpless because I'm being brushed off my the GP and opthalmologists.

    If I could turn back time, I'd have gone private for an initial consultation and diagnosis. But now, it's nearly a year since I first tried to get proper help - and I haven't much money left. I could probably just about do it (but it would leave me pretty short). Would it be worth it to get a proper diagnosis? Or shall I start the doxycycline despite not knowing what sort of dry eye I have - and then see how things go? My follow-up appointment (NHS) is in 3 months. But I can't afford to not work for another 3 months. I'm hoping the doxy will help enough that the pain is okay to ignore so I can start working. Also with new glasses, at least I will be able to see!

    Finally, in case it helps for people who might want to advise me... the eyedrops I've tried so far are: various OTC including blink and refresh (until a few months ago I didn't realise I shouldn't use ones with preservatives - it was only from reading this forum that I learnt I shouldn't). I then tried the celluvisc, then I was prescribed hydromoor and hylotears. They didn't really help (and I was using around 2 or 3 drops at a time). I've now been prescribed Hyloforte. I'm still getting pain and "something in my eye" feeling (especially the right eye) but it seems the best I've tried so far. I was also prescribed vita-pos for night. I've only tried it 3 times and I'm not sure about it. My eye still hurt lots when I woke up in the morning (I forgot to mention earlier - my eye hurts much more when I wake up). But my friend told me my eye looks brighter and I don't have dark circles under my eyes after using it. But I found it kept my eye smeary all day (even after washing my face and batheing the eyes with bicarb of soda). So it was smearing my glasses (which are bad enough as it is - due to the scratches!).

    Sorry, this post is too long!
    Last edited by CharlieGreenEyes; 01-May-2014, 09:50.

  • #2
    Hi there and welcome. Sorry you hadn't had any responses - sometimes it's a bit hit and miss depending who's on the forum at the time.

    Painful story. I'm really sorry you have not had the skilled and compassionate kind of care we all strive for. When something is affecting your life so much, it's hard to get the brush-off.

    Was there ever any discussion about RCE (recurrent corneal erosion) in that eye? Just curious as the history of scratches would make something like that more likely. I would definitely not ever want to wear a gas permeable lens on an eye in that condition.

    Sorry if I'm asking you to repeat things but I can't remember it all and it is a long post, makes things a bit hard to sort through.

    Can you clarify whether the lenses that you occasionally wear now are still the gas perms or are soft lenses?

    Do you ever get a sharp pain in that eye or sudden blurring?

    Have you had any more specific diagnoses than "dryness"?
    Rebecca Petris
    The Dry Eye Foundation
    dryeyefoundation.org
    800-484-0244

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    • #3
      Thank you so much for replying. I haven't been on here for a while - I got a bit down about things and didn't want to deal with it.

      I still haven't got my new glasses, which I know is stupid and know I need to get it sorted. It's a bit of a vicious circle because I have such distorted vision in my old glasses (they're not only out-of-date prescription-wise but also were badly fitted) that I don't feel with-it enough to get on with things.

      I also feel a bit lost because the opthalmologist seems to have dismissed the issues as simply giving up contacts and wearing glasses (with eye-drops) - but the problems with dryness and pain are still there.

      I wear rigid gas permeable contacts (have done for about 20 years). For the past year, I've not really worn them because of the problems - but until I get new glasses, I have to wear contacts when leaving the house (can't see well enough in my old glasses). I don't go out much at all now (really just the shops to get food, etc).

      But strangely, the pain and dryness is often worse when I wear my glasses.

      I did ask about trying soft contacts. I have a complex prescription with quite strong astigmatism so can't wear dailies. The optician gave me some to try but said they weren't toric to correct the astigmatism. He said just try them to see if the comfort was better. But because they weren't toric, I couldn't see properly in them so it wasn't easy to trial. I only tried them twice and the comfort was slightly better but the right eye still felt funny. I also found them extremely hard to get out. They totally dried up in my eye.

      The problem is still only my right eye. I get dryness in the left eye (and the opthalmologist said my left eye was more dry) but the pain and gritty feeling is in my right eye. Maybe the MGD is worse there? I do get sharp pains sometimes (right eye only) but the pain varies. Sometimes it's more of a gritty "something-in-the-eye" feeling and sometimes an achy burning pain.

      I wondered if it was a badly fitted contact lens but this has been dismissed by my optician. But thinking about it the problem did start around the time I was given a new contact lens (about 5 years ago). The optician (a different one from my current one) told me he was trying a different brand. He never told me what brand and he's since closed down.

      I don't really get blurring. But can't be sure because my glasses are so out-of-date I can't see properly with them anyway.

      I did wonder about RCE but the first opthalmologist I saw (the rude dismissive one) instantly dismissed the idea. He didn't seem to listen to my background at all and wanted to send me off with just eye-drops (and no follow-up appointment). I had to insist on a referral to a corneal specialist (I said I'd been using various eye-drops for several years now and nothing had improved).

      The specialist prescribed hylo-forte eye-drops (they seem better than the others I've tried but the problem is still there). I was told to use them every hour. They temporarily help but not for long. I was also prescribed doxycycline. It hasn't done anything yet but maybe I haven't taken it for long enough (it's been about 2 months).

      I'm a vegetarian and don't eat much dairy so am taking flaxseed oil. It hasn't changed anything. I also wonder if it could be linked to iron-deficiency and/or thyroid problems. I have other symptoms (including eyebrows almost totally gone, tiredness, thinning hair). My GP tested for anaemia but not iron-deficiency (ferritin). I also had a thyroid test but have been taking iodine supplements for that might have affected the results.

      I was tested for vitamin D and was told I am deficient. I'm now taking a supplement.

      I hope this reply isn't too long. I know my original post was ridiculously long and rambling.

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