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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**

Summer

Tuesday 22nd of February 2022

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.

[email protected]

Wednesday 23rd of February 2022

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

Emma

Thursday 20th of January 2022

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.

[email protected]

Thursday 20th of January 2022

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!

Colleen

Thursday 16th of September 2021

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

Saturday 16th of October 2021

@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!

[email protected]

Thursday 16th of September 2021

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.

Eleanor

Thursday 15th of July 2021

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...

[email protected]

Friday 16th of July 2021

I'm so sorry you are having issues. I'm almost 100% sure my issues are hormonal. I hope you can find a solution soon. Thanks for stopping by.

Daniela

Thursday 17th of June 2021

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 :(

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Friday 18th of June 2021

I tried them for a little bit. I couldn't get used to the hard (or gas permeable) lenses. It felt like they were scraping my eyelids.