Corneal erosion is driving me insane.

[blooshboon]

Posting for traffic, I’ll take you back to the beginning.

Feb 18 - woke up during the middle of the night and went to rub my eye. Instead poked myself directly in the centre of my eyeball, it watered it hurt a little but was fine by the morning.

a week later, went to opticians to pick up new glasses and told them I was having some watering from the eyes, only thing that had happened was the eye poke. Was told “ it usually take a week or two to heal, leave it alone “

March 16 end up at the eye hospital, as watering was uncontrollable, and was hurting so much, I’ve never experienced pain like it. Was told I had RCE and was given Hylo night and sodium chloride.

april 16 I’m back at eye hospital because th is episode is far worse and vision is now becoming affected. Had one incident where I couldn’t open my eye and the light sensitivity was insane. Was then given Hylo forte and chloremphanicol.

01 May - restarts getting again, I’m still using Hylo forte and Hylo night as advised. I double down on the doses as advised by pharmacy, until I find myself in ER on the 7th, as eye pain was unbearable, vision is affected 60% more than last time, I can’t sleep because I’m up every few hours with eye watering, swelling, and painful. they once again give me chloremphanicol, am told if it doesn’t heal I need to head back to eye hospital.

get there today, they check eye pressure, say they can’t see any active erosions, but can see scarring which is in an area it shouldn’t be affecting my vision. They give me levofloxicin ( antibiotic ( drops and chloremphanicol again.

At this point I’m exhausted, I can’t sleep for more than an hour before I’m forced awake with excruciating pain, my eye is now clenching when I’m asleep which I’m sure is down to stress and sleep deprivation. They keep giving me cocktails of ointments and drops, none of which are working and they are NOT listening, I’ve spoke to cues, who are only advising to go back to the eye hospital, of which is 50 miles away and it costing me £70 in a taxi each time I go.

and it’s not like I’m getting any helpful answers as I’m waiting 6-7 hours to be seen and they just want to rush you out so they can see the others waiting.

in at my wits end, I can’t blink, I can’t sleep, I can’t cry, I’m physically and mentally exhausted. I’ve read about bandage lenses? But these haven’t been mentioned to me, and now there’s scarring on my eye! Which I feel could’ve been avoided had I actually had more helpful treatment.

has nobody got any experience with this awful injury? Any tips for sleeping? Any tips at all would be great. I’m using cotton pads and ice water to help with the swelling, but it isn’t doing much now.

What eye hospital are you at? A friend had something similar and it ended up being parasitic keratitis and her pain level was awful

BMEC - Birmingham midland eye centre.

If it is causing that much pain could you get to Moorfields - you can also go private they are amazing

Yup agree with last poster. You possibly don't have the correct diagnosis. Time to act

We dont live anywhere near London unfortunately.

How though? what would you do if you were me? go back to the eye hospital?

I'd go to a specialist eye hospital like Moorfields. They have one in London and other cities, I would google it. It sounds like you need to see an external eye disease corneal fellow. Good luck.

It sounds like the OP is already at an eye centre. So suggesting Moorfields isn’t going to help. OP I would ask for a second opinion at the hospital you are already at.

They’re all based around London. And there is no way I can get to London without spending hundreds. That isn’t an option for me to go to that particular hospital.

Can you go to a private eye doctor? If you have a Polish/Eastern European clinic that has an eye doctor anywhere near you I’d probably try going there. I’ve found that their treatments tend to be far more extensive than the NHS (which is sometimes unnecessary but in your case seems very necessary!). Alternatively try any other private eye doctor. When my son scratched my cornea (if that’s what you really have!) I got a special corneal gel to put on every few hours and a strict routine of lubricating drops. But the gel was key to recovery (wouldn’t get it from the NHS).

I had RCE and didn’t get on with ointments and knock on effect of not wearing my contact lenses. In the end optician said maybe wear contact lenses they could work like a bandage lens.

I was just using visco tears morning and night and nurofen to manage the pain.

one thing that helped me was wearing a silk eye patch at night. Then in the morning rub your eye gently whilst still closed, before taking the eye patch off. otherwise every morning you’re causing new damage.

I haven’t had a flare up for years. I do sometimes get pain in that eye if I’ve been on planes and/or dehydrated.

I intend to send this to the GP and
hopefully get a Referral for a corneal specialist.

I am requesting an urgent referral to a corneal specialist for recurrent corneal erosion (RCE), which began after a direct eye trauma in February 2025 and has since become significantly worse, despite repeated A&E and hospital visits.

I have now had multiple severe erosions, increasing in frequency and intensity. The condition is affecting my vision, causing extreme pain, photophobia, and sleep deprivation due to eye spasms and nightly erosions.

I have been prescribed various topical treatments (Hylo Night, Hylo Forte, Chloramphenicol, Levofloxacin), but these have not prevented further episodes or progression of symptoms. Most recently, I have been told there is corneal scarring, yet no effective long-term treatment plan has been provided.

I am deeply concerned about the ongoing damage to my eye, and the toll this has taken on my physical and mental health. I am unable to function normally, and I cannot continue travelling to emergency departments where I receive inconsistent and inadequate care.

Please could I be urgently referred to a named corneal specialist at “ name of local specialists “ for evaluation and management?

I am particularly hoping to discuss options like bandage contact lenses, autologous serum drops, or other interventions used in treatment-resistant RCE.

Thank you very much for your help with this — I truly appreciate it.

To help, this is the swelling on the bad days.

I really feel for you OP - I suffered from RCE on and off for over 2 years, and people really can’t understand the level of pain until they’ve experienced it.

I ended up in the same situation you are, where the scar tissue built up on the cornea makes the erosions more frequent and it was awful. I got a referral to a specialist ophthalmologist and had a Superficial Keratectomy done, where they take the whole surface of the cornea off and scrape away the scar tissue, then had a bandage contact lens in for a week to allow it to heal.

It was a rough couple of weeks recovering and took about 6 months for my vision to completely go back to normal, but was totally worth it. I’m now coming up on 2 years without an erosion. I still have to use hylo night every night & sleep with a protective eye mask on as a preventative measure, but the fear of sleeping has gone away now!

I would push and push for a referral to a specialist if I was you. My consultant was based at Stoke Mandeville hospital in Buckinghamshire, if that’s easier for you to get to from Birmingham rather than going into London?

I had a similar injury some years ago now and still remember how awful it was and it took months to feel more normal/less sore again and I’d say years to feel completely back to normal. Really regular use of hydrating/soothing eyedrops wasn’t enough for me and when I went back they prescribed me “simple eye ointment” (it’s basically like Vaseline for eyes) to use at nighttime as well and the combination made a huge difference to my comfort levels. I’d definitely try that if you haven’t already, it was like a miracle for me and massively improved things.

I would push for a second opinion from an Opthalmologist who specialises in corneal surgery. I’m in the East Midlands and I’ve had 2 corneal transplants locally but there is often only one surgeon in the department who does corneal transplants as it’s quite specialised

Did you have corneal transplants for corneal erosion or something else?

OP @blooshboon I would get a swab done on your eye just to check for any bacteria or virus. good luck.

@wavingfuriously sadly I have an inherited condition called Fuchs (functional endothelial corneal dystrophy) our cornea’s fail in our 50’s leaving your eye like a fogged up window, the only treatment is Corneal replacement and unfortunately my first transplant was a complete failure leaving me functionally blind requiring a second transplant.

I also need a transplant in my other eye which my surgeon should list me for this month but the wait is usually at least a year to 18 months although I had to wait 3 years for my first thanks to COVID as they had to discard all of the tissue bank because of it

oh I'm so sorry 😞
I've had to more or less live at Moorfields in recent years due to intractable shingles in one eye which did a lot of damage so understand a little of what you've gone through.. 🌷

They had to discard all the tissue bank?!! that is terrible, am thinking too of all the deceased people who donated in good faith..😔

be sure to let us know when your transplant is...are you at Moorfields?

@blooshboon, I’m wondering if you are allergic to the preservative in the eye drops - DC1 is and has to have the preservative free single-dose drops.

I have had this, my 9 months old at the time scratched an s shape into my eye. Ended up in a&e as the pain was so bad. Protocol was not followed and I should have been sent to the emergency eye clinic but wasn't - sent home with drops and it will heal.

It didn't, every morning it would tear in waking leaving me in agony. A&E again where I begged them to take away the pain, gp and finally emergency eye clinic.

The consultant looked at it and said the scar tissue was the problem and it was sticking to my eye lid and opening wvrytime i woke up. He excised the scar tissue on the spot while I was awake (!!!!) and then I had a big plastic contact lens put in , some hefty pain killers and regular reviews. When the Contact was taken out and it was healed, I was given Strict instructions to put hylofort in every night for life - 11 years later I still do as I never want to ever go back to the level of pain it caused. I've not had any problems since. I hope you find a way forward.

You see this is what I want at this point. The surgery and then a lens because I can’t cop anymore

The loss of the tissue bank supplies broke my heart for the families who made the donations. Prior to early health retirement I worked on the other side in theatres and have been involved in organ retrieval, my own surgery was performed by my friends and colleagues from those days

please ask for a second opinion urgently, excision and bandage lenses do sound like a good plan going forward. Transplants should only be a last resort situation as they can and do go wrong, in my case both corneas from my donor failed and both recipients had to be redone for no obvious reason

Just incase anyone reads this at a later point I will also mention that I was a private patient, for transplants there is no queue jumping you wait just as long and are usually done in an NHS hospital due to equipment need. The NHS benefits from surgical costs which is a bonus for me as an ex employee

I would get myself to the eye hospital in Windsor if I were you
Your eyes are to important to mess with
Find the money for the train tickets
Good luck