My Daily Battle with Giant Papillary Conjunctivitis

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.

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.

If you enjoyed this post you might enjoy a few of my other “random ramblings or late night thoughts.”

Lindsey**

12 thoughts on “My Daily Battle with Giant Papillary Conjunctivitis

  1. 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!

  2. 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

  3. 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?!

    1. 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. 🙁

  4. 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!

  5. 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!

  6. 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

    1. 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.

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