Endometriosis & the Eyes

Potted barrel cactus with googly eyes

During my recent research regarding Endometriosis growing on the lungs and spine, I’ve also bumped into references to incredibly rare cases where it’s been found on the eyes, or the structures near the eyes.  THE EYES!  Ugh.  Makes my skin crawl.  So I figured I’d delve a bit into that today.

Most of all of the books and webpages I’ve read that talk about Endometriosis say it can grow on the eyes, but I’m having an extremely difficult time finding case studies or reports online about it.

In 2008 a case report was published of a 13-year-old girl would bleed from her tear duct during her menstrual cycle.  After imaging studies and other tests, it was suspected that she had Endometriosis inside her nasolacrimal canal (it houses the tear ducts); however, due to the location of the tissue, biopsies (and a confirmed diagnosis) were “impossible.”  For treatment, she was put on birth control.  If that didn’t control her symptoms, she would undergo hormone therapy.  I cannot find any follow-up studies on this poor girl (see photograph below).

Photo of young girl with blood coming out of tear duct, suspected due to Endometriosis
c/o The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc.; 2008; Vol. 24, No. 1, pp. 47-48

Although not a diagnosis of Endometriosis on the eye, an abstract presented at the 15th Meeting of the European Neurological Society discussed a young woman who had complaints of a chronically dilated pupil, which was later disclosed as “Adie Tonic Pupil,” a neurological condition, which may be caused due to inflammation which affects the autonomic nervous system (which deals with your eyes).  This 31-year-old woman underwent lab tests, which revealed elevated levels of Ca125 (a biomarker some believe may indicate the presence of Endometriosis), and abdominal CT scans, etc.  After a mass was found on her ovary, she had laparoscopic surgery and Endometriosis was then confirmed.  She underwent a regimen of hormone treatments and her Endometriosis symptoms receded…as did her Adie Tonic Pupil symptoms.  The link between her Endometriosis and her pupil problems is unknown; however, Adie Tonic Pupil has been linked to several other autoimmune deficiencies.  And several people believe that Endometriosis is an autoimmune deficiency.  Obviously, more research is required.

Another interesting study published in 2014 discusses the possibility that there is a link between the color of your eyes and the possibility of having deep-penetrating Endometriosis.  The study compared Endometriosis statistics in women with blue-gray eyes, hazel eyes, and brown eyes. Three categories were compared:  223 women with deep-penetrating Endometriosis, 247 women with ovarian endometriomas, and 301 women without a history of Endometriosis.   “A statistically significant excess” of women with deep-penetrating Endometriosis had blue eyes.  This may indicate that there is a link between the genes that determine eye color and Endometriosis.  Or some people with blue eyes have a sensitivity to the sun and may be exposed to it less, decreasing their amounts of Vitamin D.  Some studies suggest a possible link between Endometriosis development and Vitamin D deficiencies.  As usual: it’s all hypothetical and additional research and study is required.  But, it was an interesting study to read.

Have you heard of anyone having Endo on or near their eyes? I’d love to hear about it! Comment below 🙂

(Updated March 25, 2019)


15th Meeting of the European Neurological Society


U.S. National Library of Medicine


~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

31 thoughts on “Endometriosis & the Eyes

  1. OMG Thanks for this.. I have blue-grey eyes and deep penetrating endo.. and my right eye goes red all the time when i have my period, but not like bleeding from my tear ducts like that tho.. so interesting. I’m sure there’s a connection!!


    1. I suffer from endo and adie problems and I have blue eyes. If your worried speak to your gyne doctor about this Hayley. Don’t bother with GP as they won’t add the two together see your gyne first to discuss this.

      Liked by 1 person

    2. I don’t have blue eys because i am Asian but I do have severe endometriosis. Around 2-3 years ago I had it on my right shoulder which got controlled when I purposedly stopped my period with birthcontrol. Pills. My pain started always bad on the 1st day of my period and pain tapers away when my period goes away. That went on for 6 months but got controlled after. I believe my progesterone level got fixed. Thos time i have redness to my right eye everytime my period comes…then it tapers away too as my period goes away. First i thought it was allergies but i tested negative to everything with the allergen test. So who else has these symptoms?


  2. Hi my name is Donna I am stage 4 with endo its everywhere and had a partial hysterectomy I’m hoping for my ovaries to be removed soon. I suffer from adie left pupil is larger than the right pupil Doctor confirmed this in 2008!. Doctors didn’t put the two together but it makes sense. Its awful as I’m very light sensitive, have migraines, visual disturbance (black spears shooting around or shadows) from the moment I wake up to the moment I go to sleep. When my migraines are bad and my pupil enlarges so much I look like a freak of nature it feels like my eyes need to bleed to reduce the brain pressure in my head. My eyes have never bled before but it feels so intense it feels like it needs too. I will be talking to my Gyne Doctor about this in June as I feel so isolated. My deep tendon reflexes with knees are totally fine. My optician seen this very clearly and referred me to an eye hospital… everything was fine they said! when it was obvious by looking in my eyes I have one massive pupil and one small one. What is very odd it shows more in the evening due to darkness in room with sudden light etc. When I’m in the car and my partner is driving in the evening it gets so bad I have to wear sunglasses. I have to wear sunglasses in most shops due to lightning and have to wear tinted normal glasses to read as the pages are to white and blurry. Yet eye test says everything is normal. Endo is on the pouch of douglas, bladder, right kidney and was on front and back of womb and everywhere near this. I had hysterectomy three years ago they left ovaries and this hasn’t improved adie problems. I know endo is deep in the pouch of douglas and they didn’t remove this! I hope this helps! if you need any more info email me xxx

    Liked by 1 person

      1. Hi,

        I emailed you ages ago…my name is Donna and I suffer from Endo and Holmes Adie pupil syndrome, you published my story. Where my left pupil is bigger than the other one, is there a link to endo?

        UPDATE: The eye hospital never contacted my GP so my GP decided to contact the hospital and asked for my results. It turns out I have mild temporal pallor to the left pupil. Still having lots of visual disturbance every day my sweet GP has put me on migraine tablets each day and another tablet for attacks as I have them every week. My GP has referred me to a Neurologist and they are rushing me in to see them in August when the normal waiting list for a Neurologist is 17 weeks at least. My pre op is on the 1st August as Gyne Doctor wants to investigate on whats going on now since the removal of my womb but not ovaries thats been three years. I’m dreading it as Gyne Doctor has said she is going to see how deep the endo is on the pouch of douglas and remove disease yet again on other parts of my body and get another bowel surgeon to maybe operate after this up and coming operation. Gyne Doctor refused to take my ovaries as she said in my case its so bad I would have to go on HRT as I’m only 41 years old. Which in return will feed this dreaded disease. I’ve never cried so much. I have informed Gyne Doctor I’m now under a Neurologist and burst into tears. I’ve never seen a specialist in the endo field that looked so worried. What’s odd my Neurologist works at the same hospital when GP wanted me to go to another hospital.I feel my Gyne Doctor has been pulling strings maybe to get me to go to the same hospital as her!

        I shall keep you posted once I know what is going on.


        Donna x


        1. Hi Donna! I remember your email from ages ago! Thank you SO much for following up! Wishing you the best of luck for your upcoming surgery and I’m so glad that your GP followed-up on his/her own. And I’m so glad they facilitated a rush appointment with the neurologist. Please do keep us posted. And hang in there, woman. Things are movin’ and groovin’! ❤ ~Lisa


  3. Hi this is a follow up on what has been going on! To begin with my GP referred me to see a Neurologist who was very sweet and caring. He said I suffer from migraines but thought I may have demyelination and wants to rule this out as I have some of these symptoms and sent me for an MRI scan on my neck and brain yesterday. What is odd demyelination is an autoimmune disease and I have read endo could be an autoimmune disease!!!

    I’m not only experiencing seeing black spears shooting everywhere 24/7 on and off, I experience cold, burning spots and electric shocks down legs. My feet move uncontrollably and I had to get the guts up to tell my neurologist which I didn’t want to do as I told one of my GP’s years ago who didn’t take me seriously! I’m very clumsy and bang into things often. Then my pupil’s have nystagmus uncontrollable movement and I loose my balance.

    My operation is tomorrow to remove endo again. I have tried to be strong but behind my make up you can see all the stress and worry on my face. Should get results from operation after surgery and results from Neurologist if there isn’t a problem after ten days if there is a problem I would imagine I will get a phone call. Shall keep you posted. I’m telling you the symptoms so if others experience the same problem step forward and start pushing to see a Neurologist ASAP and tell them you suffer endo.

    Liked by 1 person

    1. Hi Donna. I don’t know if you are reading this anymore but maybe you culd try acupuncture. It has helped me with bad menstrual and eye problems (that’s how I found this conversation, trying to find information on what is going on in me).


  4. Hi , I’m suffering the same symptoms and I too have seen a neurologist who told me it was migraines, I’m awaiting a date for mri scans to come through , I would really love to know the outcome of this thread as I’m at my wits end trying to figure out what’s wrong with me , the symptoms mentioned I get regularly at random also other symptoms.


  5. Im speechless iv never put two and two together. My eye bled when i was 13 and i wemt blind in one eye. I gave blood spots on my pupil and floaters like a lava lamp (its all i can see – black floaters and everytjing else is dark ) there was no reason or cure for this. Iv had 7 operations n nothing helped. I got diagnosed woth endrometriosis in 2014 after years and years of problems
    I really think i have it behind my eye now!!


  6. Hmm, I have blue-grey eyes and stage 4 endometriosis….

    I also have some genetic variants that make it harder for my body to utilize certain nutrients/hormones/etc., including some for the Vitamin D receptor, for methylation, for drug metabolism, etc.

    Lisa, I’ve only read a small portion of your site, so you may have talked about this already — have you done 23andMe genetic testing?

    It is fascinating, and I learned a lot about my body when I did it about 5 years ago.

    I am still learning – there is so much to go through, and new genetic health discoveries are being made all the time.

    At the moment I’ve got 15 PubMed windows open in my browser 🙂 I was looking at research articles there when I got distracted about 4 hours ago by an Australian health blog, which led me to your site.

    (By the way, my email address that I give on websites that I am visiting for the first time does not actually work, so I can’t receive messages at the one that I entered on your site in order to leave comments tonight.)

    Liked by 1 person

    1. Blue-grey eyes are beautiful! Stormy seas!!! *swoon*

      I haven’t done 23andMe. I’ve thought about it, but then don’t want to end up in some database somewhere for God-knows-what to happen to my date 🙂 BUT I am still oh so curious!! Maybe one day I’ll drop my guard and go for it 🙂

      I’ve participated in the ROSE Study, where you supply a spit sample to help figure out genetics and Endo – so my info is already out there in the medical community haha. I should just do it, damn it. 🙂

      Iceland has a HUGE DNA database and they use it for lots and lots of research. It’s incredible!!

      Again, I’m so super grateful you found me. 🙂 I’m loving your comments this morning! I hope you had a good sleep from your late night up. ❤


  7. I recently got what seems to be a large floater in my left eye.. My eye dr. checked & my retina is fine & she can not figure out what is causing my left optical nerve to be inflammed (only my left).
    The day after I got the floater my period started.. I have had endometriosis for over 30years now & feel my flare ups have gotton worse as I become premenopausal.
    Whn I was diagnosed @16yo I was also having problems w/my lymph nodes becoming massed together. ( I now believe that was endometriosis)..
    Going back to the doctor today for more test but my doctor was looking into Endometriosis affecting my left eye..

    Liked by 1 person

  8. Hi. From age 18 to 23 or 24 I got a very bloodshot eye on the first day of my period. Always the left eye and on the inside – I mean the nose-side. Several doctors dismissed me when I said it was related to my menstrual cycle, except one in London – who diagnosed Endometriosis. This was 20 years ago in 1998. I’d never heard of it. He said I was ‘lucky’ to come to him as he had a particular interest in gynecology. Anyway. He said I’d make the medical journals as it was a very rare manifestation of Endo. Sadly I never made the appointment in Moorfields Eye hospital that he made for me. I went travelling. The bloodshot eyes stopped eventually but not the other effects – excruciating pains, constipation etc (age43 now). I still get sore in the eye most months but not the extreme red bloodshot eyes. It’s still there but not as noticeable. I remember I used to joke that I should stick a tampon in my eye 😬


  9. Hi!

    I live in Hungary, and endometriosis experts are quite rare here.. So I was diagnosed with rheumatoid arthritis, but I wasn’t satisfied with this bullshit, because the meds wasn’t working, and the doctors dismissed a lot of my symptoms. So I looked it up on the internet, I found out I probably have endometriosis. Then I had to play like 4 doctors over until finally I can get progesterone injection. It have been 2 months, and my joint pain is gone, but it’s not the most surprising thing. I had to wear glasses until like 5 days ago. My eyesight wasn’t the best even when I was 7 years old, but started to worsen in my teenage years. I had laser surgery, but after a year I already had to wear glasses again. Now I just wish the surgery wasn’t a way to fuck up my probably fine eyes. Anyway, I wasn’t expecting to have this blessing. But it is realllly great. I was suspected that the endo have to do something with it, but now I kind of know, thanks to this page. 🙂


  10. I have floaters in both of my eyes – which have never been treated/diagnosed – despite many apps with Moorfields, GPs, a neurologist and an MRI – doctors always say they can’t see them and don’t know why they are there.

    I have endo and was diagnosed at around the same time I started getting the floaters and I have grey / blue eyes!

    I went on birth control and most endo symptoms went away and floaters stopped worsening then too but had never connected the two until now! Floaters are still there 24/7 though.

    Would love any more info on this if anyone has if any


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