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My Daily Battle with Giant Papillary Conjunctivitis

I don’t normally write personal posts. This blog is my creative outlet where I share all things DIY and home. That being said, I felt the need to share my daily battle with this chronic eye problem to possibly help someone else who is struggling with it. Also, I’ve dealt with Giant Papillary Conjunctivitis for a good 13 years now, so I’ve researched the heck out it. To my surprise, I haven’t found a lot of useful information from other personal experiences. That’s when I decided it was time to share my own.

my daily battle with giant papillary conjunctivitis

I told you I’ve been battling GPC for 13 years now. That’s not entirely correct. I’ve battled it off and on all my life, but it’s been a more consistent and permanent battle for the last 13. I noticed a major change right after I moved from mid to south Alabama. I used to be a daily contact wearer. You wouldn’t find me in glasses unless it was late at night and I was getting ready for bed. When we moved it all seemed to change.

I know what you’re thinking…must be allergies. That’s what I thought too. We will revisit that thought soon.

So what was the problem with my eyes?

The best way I can explain it is the constant sensation of “grit” beneath my lids. My eyes itch all the time and many mornings I wake up with swollen eyelids. The only way to really relieve the irritation is to lay down, close my eyes and lay a cool compress on them. I do have dry eye too, but this is different. On bad days when it’s really flared up, my eyes will produce a white film. So what did I do?

Shortly after we moved I started seeing an optometrist for this issue. Long story short, after trying many different types of contact lens trials (and the Dr. accusing me of complaining to get free trials, GRRRR), I said to heck with contacts (and that Dr.) and I decided to wear my glasses for a while.

Fast forward about six months later; the problem was a little better and I had not been wearing my contacts. I thought my days of contact lens wearing were over.

For most people that would be ok, but I HATE wearing my glasses. I feel like I don’t see as well in them and I certainly don’t see as well at night. Not only that, but I tend to get headaches when I wear my glasses for a long period of time.

That’s when I decided it was time for corrective eye surgery.

I searched for a good Lasik Dr. and spoke with many people about recommendations. The best solution I could find was an eye Dr. in New Orleans who partnered with an Optometrist near my home town to do the initial consult.

I went to see the Optometrist for the initial consult to make sure I was a candidate for the surgery. After a few test it looked like I was a good candidate and we set up a surgery date in New Orleans.

I was so excited to not have to worry about wearing glasses anymore! I figured the longer I could go without wearing my contacts the better my chances were of getting rid of the eye irritation that bothered me daily.

When the surgery day finally came I was excited and nervous. I felt like getting rid of glasses and eventually getting rid of the eye irritation was too good to be true….and I was right about that.

When I arrived at the Lasik center in New Orleans they looked over my paperwork and said everything was a go, but they needed to do one test that the Optometrist did not do on the initial evaluation.

The test that the Optometrist failed to do (maybe he didn’t have the equipment to do it) was the test that showed your corneal thickness.

As I sat in a corner in the Lasik office I knew something was wrong. I saw the Dr. come toward me with a baffled look on his face.

He came over and said, “I’m so sorry you’ve traveled a few hours to see me, but your corneal thickness is way to thin for this surgery. For most patients with thin corneas I would suggest another procedure called PRK, but you are even too thin for that. Also, if any Dr. tells you otherwise they are not looking out for your best interest. Again, I’m so sorry.”

My heart sank from disappointment.

I hate that we traveled a few hours to be turned away, but I was also thankful for a Dr. who was looking out for my best interest and not his pocket book.

Fast forward about a year.

After switching back and forth between my contact lens’ and glasses I decided something was still wrong (even though two Optometrists said everything was fine). I decided to see an Ophthalmologist.

This is when I was diagnosed with Giant Papillary Conjunctivitis (GPC).

After about eight months of using different eye drops and staying away from my contacts, my poor eyes still were not healed.

That’s when he said it must be allergies.

You probably know what came next; the allergy testing.

After almost two hours with the allergy Dr. and lots of pin pricks, I had NO signs of any allergies. Not even an allergy to dust!

The Allergy Dr. was baffled. That’s when he said something that changed everything.

“You know, I’m a believer that hormones control everything when it comes to women. I bet this is a hormone issue.”

Say whaaat? That seemed crazy to me. He then proceeded to ask if my husband and I had kids. At the time the answer was no. He then shared about their fertility journey and how I needed to look into this “just in case.”

My husband and I did want kids, but weren’t actively trying. Nevertheless, I wanted to make sure I was able to. I saw my OBGYN and asked about this. He gave me one round of fertility meds (clomid).

You won’t believe what happened next….(nope, not a baby).

Halfway through my cycle with clomid, I woke up one morning and the itchy irritation was gone! What the heck! I thought it was a fluke.

A few weeks later and my eyes still felt great! I tried to wear my contacts and I could!

I went back to the eye Dr. for a follow up and after he looked at my eyes he said, “well Mrs. Manning, you’re eyes are almost healed. Let me guess, allergy shots?”

I chuckled and said, “No, fertility pills.”

His eyes got real big and he laughed a little. “Ok, really, no allergy shots?”

“Nope, just one round of fertility meds and my eyes feel millions of times better!”

Long story short, the irritation was gone temporarily but it did come back.

Side note: we did have some issues conceiving but after a Lap surgery we found out that I had pretty severe endometriosis. The surgery was a success because I was pregnant with my first born one month later.

My eye irritation did come back, but interestingly enough, was almost healed throughout both of my pregnancies.

I guess the Allergy Dr. was right when he said it could be a hormonal issue.

So now the question is, is the issue caused by a hormonal imbalance or a little dry eye or maybe a bad combination of both?

Either way, this issue is still an off and on battle with me and I’m still yet to resolve it.

From my experience I do know a few things;

  • My hormone fluctuations do affect this
  • Steroid and allergy eye drops do not help it
  • It is worse when my eyes are more dry

So there it is. I wish I had an answer or a solution to my daily battle with giant papillary conjunctivitis, but I don’t.

Maybe it’s like with Paul’s “thorn in the flesh.” We all deal with something right? Maybe this is the “thorn in my flesh.” Either way it stinks.

Now my question is to you. If you are reading this then you probably have some sort of experience with it. If you have any insight or thoughts on this please let me know!

my daily battle with giant papillary conjunctivitis

If you’re still reading, thanks for listening to my battles with this terrible eye issue otherwise known as GPC.

Lindsey**

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  1. Jenna says:

    Hello! I have been dealing with GPC for almost 7 years, it’s getting very bad at this point. I never have a break, every single blink feels like my eyes are being scratched my plastic/sand. My eye doctor (I’ve seen many) said it’ll eventually go away without wearing contacts, well I’m on 1.5 years of zero contact wear and I’m still having issues, allergy drops and steroids do not help either. I just don’t understand how it’s not going away when I’m not wearing contacts anymore. Curious if you have found a solution yet? I just had a baby and during my pregnancy and after it’s still been the same.

    • Maria says:

      Are you still able to wear contact lenses sometimes?

    • Hey Jenna, I’m so sorry to hear you’ve been struggling with this too. After years and years of this I’ve come to the conclusion that it will be an off and on battle for me that won’t ever fully go away. That being said, I’ve learned to manage it and one thing that has truly helped (more than anything else) with the management is treating the dry eye that comes along with it. I do feel that when I get tired or my eyes are dry it gets immeasurably worse. The dry eye gel that you apply at night has helped me a lot. Especially when I feel like I’m about to go through a “spell” I start using the gel at night and although it doesn’t go away, it does help it. I hope you find a manageable solution soon!

  2. Corinne says:

    My GPC started after I had my first child, I’ve always sworn it’s hormonal (or I’m allergic to kids!).
    I’ve tried everything, haven’t worn contacts in over 5 years and my eyes are no better.

    • Melanie says:

      @Corinne,
      I suffered with GPC for years on end, and it what was most discouraging that even NOT wearing contact lenses did not help. My eyes felt as dry as sandpaper and very painful, and I was miserable. I had very poor vision vision, and had to wear heavy eyeglasses to see. I eventually got cataract surgery, and I am on eye drops for dry eye. The situation has finally gotten better. Not perfect, but a lot better. Eye doctors didn’t seem to take it seriously for years, but it does affect quality of life. My eyes always felt dry and tired. I wish you all the best. Find a good eye doctor that will take this seriously and try to alleviate the pain.

    • I feel your pain. I’m so sorry you are dealing with this! I hope in time your hormones will settle and you will be able to wear contacts again.

  3. Steph says:

    Hey Lindsey! Sorry you’ve been dealing with that. I was just treated for GPC but still have the same irritation and foreign body feeling in my left eye as always, so I’m in a similar boat. I also have Ehlers Danlos Syndrome, so that doesn’t help! I did just find a journal article that talks about a correlation between abnormal hormone levels and a corneal disease called keratoconus. I found it super interesting. I wonder if it’s all also related to GPC?

    • Oh interesting! I went to get lasik surgery years ago and they told me I would never be a candidate due to my thin corneas. They said if I did have the surgery I would be at very high risk for Keratoconus. It probably is all related. Thanks for stopping by.

  4. Summer says:

    Lordy I no longer feel like I’m crazy anymore…reading comments and realizing that my issue seems to be GPC. However, I have a twist–I don’t wear contacts? And I haven’t since I was like 12 (I’m 32 now) so I am boggled. My Doc keeps giving me steroid drops, but the previous ones actually GAVE MY EYE AN INFECTION…this all happened after he popped a cyst in my eye that held an odd, unknow, near-clear ball (like those little things they put into stuff to keep them dry? I forget the name of it, but they’re usually un a baggy). I’ve been ‘feeling’ something in that one eye since June of 2021 and I was hopeful it would be fixed by now (February of 2022) but it’s only getting worse. It feels like a scab is in my eye and it’s dropping bits and pieces every so often. But I never get anything out of my eye, so I assume it’s the bumps rubbing against my eyeball?

    I’m at my wit’s end, but your post has helped me write down a few things to tell the Doc…if he continues to just try steroids I’m pretty sure I’ll seek out another doctor. He seems frustrated that it hasn’t healed AT ALL (in fact it’s now in my other eye, just not as bad as my right eye) and I think it’s getting worse. Today he peeked in my eye for literally 2 seconds then wrote me off with another steroid drops. It’s wild.

    I have read that it is caused by trauma (usually contact lenses?) but I have a few chronic diseases (such as fibromyalgia, which he said MIGHT impact this as well) and I’m wondering if it’s stemming from there?

    Anyway, thank you for your post, and seeing my rambles. I’ll have to bring up the hormone stuff just to see.

    • Summer, I’m so sorry you are dealing with this. I feel your pain. One thing to note; if you have an autoimmune disease like fibromyalgia I am a FIRM believer that it will affect your entire system…including the tissue in your eyes. I would put money on the fact that it’s all related. Eye dr’s just look at the eyes and sometimes don’t see the entire picture.The steroid drops did nothing for my GPC other than give me sinus infections (weird, I know). I would bet that if your other health issues got better then your eyes would too. Good luck. Hugs

  5. Emma says:

    Thankyou for this post! I’ve had GPC for two years, i have stopped wearing contact lenses for a year now and I still have GPC, I hate it , it makes my eyelids droopy. I’m confused because GPC is suppose to be caused from wearing lenses so I don’t know why it persists for some people like me, even though I’ve stopped wearing lenses completely. I did see that sometimes GPC can be misidogosed for other similar eye allergies like VKC and AKC. Very interesting point you made about hormonal problems that can cause it. Do you have too much Estrogen? Supplements like DIM can help lower estrogen levels.

    • Hey Emma,
      I’m sorry you’ve been dealing with this too! I do believe my GPC is regulated by hormone imbalance as it comes and goes each month. The cause GPC seems to be a mystery for so many of us. I hope you can find a solution soon and if you do let us know!

  6. Colleen says:

    Lindsey, our stories are so similar.I’ve suffered with some degree of gpc for 2 years. The one other problem that popped up for me is that my eye pressure became borderline high. I wondered if it was from the drops, so I quit. I’m now seeing a functional medicine doctor, that uncovered toxins and imbalances in my body that my regular doctors would never have found. Yesterday at the eye doctor my pressure dropped 2 points and gpc is extremely small. Not sure if it’s a coincidence but I will continue my journey to get my self to good health. Just FYI, the tests my functional dr did were all about checking for toxins and imbalances in my body. I was shocked what they test for and can find. Thanks for posting and Good luck in your journey.

    • Carolyn says:

      @Colleen,
      Hi Colleen! I’ve been struggling with GPC for awhile now and would love to hear more about your experience with the functional medicine doctor. To me it doesn’t make sense for my eye lids to just permanently turn on me with GCP haha. I feel like maybe there could be something else wrong!

    • Thank you for letting me know this! I agree with you that (at least in my case) the problem was 100% hormone or toxin imbalances.I hope you continue to get better! Good luck.

  7. Eleanor says:

    This is wild–thanks for posting! I had a uterine fibroid embolization last January, and by August I was having serious contact lens issues. It’s been almost a year of steroids, lubricating drops, glasses, visits to baffled eye doctors…and no answers. They usually tell me it’s dry eye or very mild papillary conjunctivitis. Now I’m wondering if it’s related to my surgery, which can sometimes damage your ovaries…

  8. Daniela says:

    Hi! Has anyone changed from soft contacts to hard contacts or scleral? I have read that this can help the condition. Like you guys, I have not been able to wear my contacts for a couple of months now and it’s terrible 🙁

  9. Kylie Hoedel says:

    Hi Lindsey, thank you so much for sharing. I’ve worn contacts almost all my life and have never had any issues, up until I turned 21. My ophthalmologist said that the mask-wearing has been affecting people’s allergies and dry-eye so that could be a reason why it’s been flaring up, but I have seen one eye doctor and another ophthalmologist and have been dealing with GPC for almost a year now. I love wearing makeup and I’m so used to wearing contacts, I hate that I can’t live my life how I used to. It feels like I’m in a “fishbowl” almost when I wear my glasses. However, it seems there is no alternative. The steroid eye drops help my GPC but after I run out they come back, and contacts simply are unbearable for longer than an hour or two. Thank you fir sharing your story and letting me know I’m not alone! My eye doc also gaslighted me (hmph) but I now know I’m not crazy.

  10. I couldn’t agree more! I’m not quite old enough to have cataract surgery, but I have looked into the ICL (same thing they insert with cataract surgery they just don’t remove a cataract) but they don’t make it in my prescription yet. YET! Here’s for hoping. So glad you have found some relief!

    • Melanie says:

      They are constantly making great medical strides in treating eye refraction errors, so there is great hope for all of my myopic friends. Cataract surgery has come very far and so has lasik. Modern eyeglasses are much thinner and lighter and stylish.
      Unless you are very nearsighted and dependent on glasses and/or contact lenses everyday, you cannot understand what it’s like having to deal with GPC and dry eyes and how much it affects your quality of life.
      Again, I urge doctors to FULLY educate new contact lens wearers of the possible problems that could develop. GPC needs to be addressed at an early stage!! Once it gets too advanced, it’s very hard to control.
      I wish everyone on this board great success in overcoming their eye issues!

  11. Kristen says:

    I’ve been suffering with the same eye issue for 5 years now. I HATE glasses but at this point it’s all I have. I do have allergies, dry eyes.. and my GPC will NOT go away no matter how many times I’ve been prescribed steroid drops and some ointment. My eyes were at the advanced stage of this and I wanted to itch my eyes out of my head they hurt so bad. I haven’t been able to be fit for contacts in 3 years bc the bumps under my lids just won’t go away. Can people just ask for fertility meds and see if it helps? Or is there anything else out there to help treat an eye issue hormonally? I’m not sure I can get LASIK either 🙁

    • I’m so sorry you are dealing with this. The fertility meds clearing the GPC only meant one thing; it was a hormonal issue.Dry eye definitely contributes to it. I wish I had a solution for you (and me!). Here’s to hoping that one day we will find a solution to this! Let me know if you do.

  12. teresa says:

    oh wow. i feel like i’m going through the exact same thing. my eyesight is so bad its at -13 and my contact script is -9.5. i just went for consult on lasik and they told me my sight was too bad for it. i was devastated and i’m still reeling. i started having issues with my contacts too. Ive worn for nearly 30 years. I go to see my reg optometrist in the morning. I’ve been having to wear old glasses for the past month and its horrible. they feel so foreign on me, and i cant enjoy things like i used to because its so hard to see. i paid more for these special lenses in my glasses to be thinner, but they are still so fish bowled it makes me nauseous all the time i wear them. but i think i have GPC in my left eye. i cant wear my contact in it anymore. And i cant have lasik, and the eye surgeon guy said i’m still too young for implants. so, i feel so lost right now. thanks for sharing your story. i know now i’m not alone

    • Terri says:

      I’m sorry you’re going through this, me too. Worn soft lenses for years with no issues then bam GPC and dry eyes. I’m -12 and -10 L/R but the GPC is just in R eye. Glasses for me and I hate wearing them. 😭

    • Teresa I’m so sorry you are going through this. I feel your pain and I know what you mean about feeling lost. Prayers that you can find an answer soon. For me, It’s just something I’ve learned to deal with and I have good days and then not so good. Thanks for sharing your story.

  13. Patricia says:

    I am currently battling GPC but only on my right eye. I have had problems with my right eye for the longest time since I started wearing contacts five years ago.

    I feel the same as you when it came to not wearing contacts. I have a high grade so my glasses are hella thick, besides that I have an oily face so it eventually slides down my nose and I also experience headaches when I wear them for too long. It has healed quite a bit with steroids though but I still have small bumps under my lid. I asked if I could wear my contacts and my doctor gave me a go signal. However I am still having a hard time wearing the right eye lens I can only wear them for about an hour. I might wait it out for another week or until my drops are completely used up.

    I do hope that I get to wear contacts again because it is just more convenient for me.

    Planning to get LASIK also next year but I hope I am fit for the surgery or else I would be devastated. Thanks for sharing your experience with us!

  14. Julie says:

    Thank you so much for sharing your story! I was recently diagnosed with GPC and am now using a steroid + mast cell inhibitor drops several times a day, not wearing contacts, and re-evaluating in a few weeks. My eye doctor has been wonderful, but all the information I find online about this insinuates I haven’t been taking proper care of my eyes (which definitely isn’t true). I’m glad I’m not the only one!

  15. Shaun Gannon says:

    Thank you soo much for posting this! I’ve tried every contact lens brand out there! Did the steroid drops and now your prescription allergy drops he has me on, I wear my contacts 1-2x a week and my eyes still freak out from
    GPC, even when I wear my glasses majority of the time! I’m so frustrated, there just has to be something we can do for this! 😡 I wonder if my pmdd makes my eyes more susceptible to this?!

    • If you have PMDD then I believe 100% that it does affect it. For me, it’s a hormone issue. I would bet that yours is too. I’m so sorry you are going through this! My best guess is that when I hit menopause it will get better. 🙁

  16. Marc owens says:

    This has been a relief to read. My eye doc gave me the “yeah there’s a couple of bumps there; here use this olapatadine”. No help. I’ve been dealing with this for 11 months and after searching finally found this. I think I’ll stop seeing my optometrist and find a good opthalmologist. Thank you for sharing your story

  17. Thank you so much for sharing this! I remember us discussing the dry eye issue a little back during our CHI days. I wonder if there is any relation to the leg / vascular thing you told me about??
    I was told I needed to be tested for Sjogren’s in light of the chronic fatigue and my dry eyes, plus a few other health related issues/symptoms. I have had basic autoimmune tests, but not for Sjogren’s specifically. While I still can’t wear contacts, I got punctal plugs which has helped a great deal with the dry eyes. Still working on the fatigue, but treatment for hypothyroid and adrenal fatigue has helped somewhat. Also, not practicing medicine / lowering stress!
    Again, so glad you shared. So much going on with people’s health and you never know who it may help or impact when you share!