Dry eyes and Recurrent corneal erosion in... - Endometriosis UK

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Dry eyes and Recurrent corneal erosion in menopause - should I take HRT?

SallyBowles profile image
5 Replies

So I'm in menopause due to my last endo surgery two years ago and I've had a terrible five month period with dry and painful eyes. I have recently been diagnosed with Recurrent Corneal Erosion. This basically means you get a scratch or something in your eye and it looks as if it heals but the top layer of the healed bit doesn't bond properly with the top layer of the eye and keeps detatching, sometimes weeks later. It's been going on since before Xmas and has taken several trips to the Eye Hospital A&E to get diagnosed. First I was treated like a time waster because there was nothing to see, but after several visits it became clear what was happening and they've told me it can take up to a year to clear up and is due to me being in menopause and having dry eyes. I'm doing absolutely everything they've suggested but it's started up again for the fourth time this weekend and I'm feeling bloody miserable about it.

The nurse who saw me said the menopausal dry eyes is what keeps it flaring up, and has suggested I get my GP to refer me to a corneal surgeon for possible laser surgery but I'm wondering if anyone has had this problem and if so, did HRT solve it? I'm obviously scared about endo flaring up again, I'm already getting pain from adhesions and am seeing my consultant in August to discuss a recent MRI scan. However I am in such agony with this painful eye condition and nothing I take makes any difference.

Any experiences really appreciated.

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SallyBowles
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5 Replies
Barnclown profile image
Barnclown

Have your doctors raised the possibility that you may have a condition called Sicca Syndrome or Sjogrens? If you're noticing that your dryness is also affecting other systems of your body (mouth, throat, vagina) it may be due to these autoimmune conditions. My dryness is. And I'm on an NHS eye clinic regime to help the glands & ducts in my eyes protect them from ulceration - this regime includes nightime gels & daytime drops + special meibomian gland treatments & massage.

An anti inflammation diet & supplements (high dose bit D + omegas etc) can help to some extent. Before my Sicca/sjogrens was diagnosed 4 years ago, my GP & gyn tried me on HRT (oral & topical) but this didn't help, in fact the topicals gave me dreadful rashes. I have systemic lupus so am on various prescription systemic meds thanks to my rheumatologist, which probably also help damp my Sicca/sjogrens down a bit, but more helpful are the treatment plans my ophthalmologist, periodontist & dentist, gyn & dermatologist have got me onto....all of which involve close monitoring in clinic + daily routines using various emollients, topicals etc (some OTC & some prescription). Sicca/sjogrens is often mistaken by hasty Drs as 'just normal menopause'. Am vvv much feeling for you & wishing you the best

SallyBowles profile image
SallyBowles in reply to Barnclown

Thanks for your reply. A friend on another forum mentioned Sjogrens to me but i think the fact I had exactly the same dry eye problems on Prostap points to the menopause for me. I also have Lupus in my family, but have been tested negative, but I agree that endo and other auto immune problems seem to go hand in hand so I'll definitely keep in mind when I see the eye specialist. I'm going to reply more comprehensively below but wanted to respond. Take care xx

Nicole124 profile image
Nicole124

Hello,

I thought I was alone with the eye condition among other issues, Endo, Hysterectomy, chronic cervical neck condition...It's a relief to read other testimonies. My eye, dry, scratchy, hurting it was now symptoms R dry was told by Doc use (Systane) drops 1 is for night other for day and when feeling dry to squint firmly 2x's do this through out the day, but I noticed after taking HRT for 11/2 year, I had the scratchy once or twice & they R not as dry anymore feel much better!! it was driving me CRAZY. I hope this helps u cause yr post sure did! Thx God bless.

SallyBowles profile image
SallyBowles

Thanks for all your replies.

I had another massive flare up today and I've finally been given the definitive reason for the corneal erosion and I need to get referred by my GP to a corneal specialist. I have a large concretion (lump) very high up on my inner eyelid which seems to be the troublemaker and is in the right spot for grazing my eye. It's been missed on each visit to the A&E but my optician found it today, it was quite horrible to go through as he had to really pull my eyelid to see it but I'm glad I went. I left the consulting room in tears as I'm so bloody fed up with it. I also burst into tears on my boss but she was lovely and very supportive in my getting it seen to.

The dry eyes are obviously exacerbating the whole thing however so I'm still giving serious thought to HRT even though it might flare up my endo. I can cope with endo pain via painkillers but with the eye problem I can do nothing and feel wretched.

So, some answers but now it's a waiting game to see a corneal specialist and get this lump removed, then I'll speak to the Endo specialist in August about whether HRT would be a good option to combat the dry eyes.

Thanks again for the responses I really do appreciate them. Take care all xx

SallyBowles profile image
SallyBowles

Just thought I'd report back on this. It's been an interesting few months! The corneal specialist said the lump was not causing the abrasion on my eyes and that I should wait and see how I got on in the next few months as in terms of corneal erosion it was 'early days'.

I was recommended a supplement by the eye hospital nurse called Omega 7 which is sea buckthorn and I've been on it just under three months now and it has massively helped with the dry eye condition generally. I would recommend it for general dryness as I've gone from needing to use viscotears hourly to maybe 4-5 times a day which is a great improvement for me. It does take time to see an improvement but I dread to think what shape I'd be in without it now.

On the HRT side, my endo specialist has recommended I don't go on it unless the eye condition becomes unbearable. I'm at the end of the line treatment wise because of adhesion damage and he thought the risk of flaring up old endo lesions left behind was too great.

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