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).
An August 2019 study published in the American Journal of Dermatopathology was of a 41-year-old woman who complained of a growth on her upper right eyelid for six months. It did not present any symptoms. It was a small (1x4mm) reddish blotch. It was biopsied and she received a diagnosis of cutaneous endometriosis. Upon further questioning, she admitted to painful periods. The authors stress that cutaneous endometriosis can form anywhere and is not limited to the belly button. If you’d like to read more about Endometriosis on your skin, I keep an updated blog entry of accounts.
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 November 18, 2019)
Resources:
15th Meeting of the European Neurological Society
PubFacts
The American Journal of Dermatopathology – (Study, August 2019) – Endometriosis of the Eyelid, an Extraordinary Extra-abdominal Location Highlighting the Spectrum of Disease (Full Article)
Opthalmic Plastic and Reconstructive Surgery (Abstract, Jan. 2008) – Presumed Nasolacrimal Endometriosis
~ 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
Bloomin' Uterus 
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!!
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oh man now I’m extra curious!!!!
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Sadly I have this.
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My left eye randomly bleeds! The eye doctors as well as my regular family doctor, have no idea why this is happening to me. It started a few years ago while I was sleeping. I got out of bed to find blood filled up in my eye socket and running down my face. It has become so random now that I never know when it’s going to happen. It is NOT painful whatsoever and once it quits (bleeding) you’d never know that anything ever happened, meaning there’s no lasting residue. I’d love it if someone could tell me what it is!! Not going to lie, it’s beyond creepy looking when it happens. I have a video and several pictures I could share with you’d like or if it’d help.
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holy cow! I would love to see the video in the pictures. Have your positions done any type of MRI or CT scan of head my socket nasal cavities to click that? Does it come out of your tear duct or else? I’m so curious and enamored right now
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How should I send you my pictures and videos?
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email? lisa@bloominuterus.com 🙂
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Whats your pupils doing hon? are they equal or not, if they aren’t equal tell your gyne xxx
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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.
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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?
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I get the red eye too…on the right as well though my period pain seems worse with left ovary.
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I too have pale blue-grey eyes. The eye that goes red becomes sore and hot.
Nosebleeds are another symptom.
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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
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Oh man, Donna! I would LOVE it if you would like to share your story with our blog? I’ll post it here as well as share it on our Facebook page! You can reach countless women! https://bloominuterus.com/share-your-story/
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I have left a longer story on the link you kindly provided. If you need to ask any questions feel free to ask away xx
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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.
Love,
Donna x
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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
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It’s horrible hon as I have this.
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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.
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Thank you, Donna, for the update! Good luck tomorrow!!!!!!!! And it’s okay to be stressed and worried. It really is. Hoping your recovery is as painless as it can be… Sending you much love ~ Lisa
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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).
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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.
Thanks
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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!!
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Interesting! If anything, it gives you more questions to ask your doctor ❤
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Hi Mel, did you finally regain your vision? What did the doctors do? I’m so worried about going blind. I’m having similar problems, and they’re giving me corticosteroids, antibiotics and anti parasite medication, but my eye problems keep coming back, and each time it comes back my vision gets worse and worse. It’s 6/36 now, and I have a grey spot in my left eye obscuring my central vision..
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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.)
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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!!
https://bloominuterus.com/2016/07/11/iceland-endometriosis-care-support/
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. ❤
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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..
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Keep us posted, Jacque!
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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 😬
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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. 🙂
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I have endo, eye floaters and have grey blue eyes – would love to get any more info anyone has
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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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I talked to my doctor about my floaters; he said they’re completely normal. I’ve seen mine since I was a kid. You may want to talk to yours if you haven’t already. You may want to draw them…if they’re like mine, they look like little floating lines, sometimes connected by little joints. They move around when I move my eyeballs. https://coopervision.com/blog/eye-floaters-how-do-we-get-them
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I saw a patient whose vision reduced to 6/12 without any sign or symptom.she was referred to a general hospital for further checks and it was found that she had endometriosis.Fast forward to her recovery from endometriosis she came bk to check her eyes and obtain reading glasses.on checking her visual acuity her vision had returned to 6/6 which is the 100% reading line.Which means endometriosis affects or reduces vision too.
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I have recently been diagnosed with endometriosis in my eyes. After going to optometrist, opthalmologist, ENT, sleep study, GP, PA no one had an answer. I was told I had SLK, floppy eyelid syndrome from sleep apnea to probably having a scratch on my eye. Several attempts with iodine, eyes dilated, medicine like Vasoline to steroid drops. Nothing worked. I had autoimmune panels run by different physicians with no positive results. I had several thyroid test run and they were within normal range. 3 years prior it all began with anxiety attacks, break through bleeding. I then had fibroids the size of golf balls removed, everything that is symptoms of imbalanced hormones. In 2017 I began having pain in my abdominal wall up to my chest and pain when using the restroom. I took probiotics and it seemed to give some relief. Then one month my eye turned red. It took about a week and a half to go away. Then a couple months later same thing but different eye. As time went on it became a monthly issue. The white of one of my eyes turned red, painful and almost distorted that side of my face. I knew when it was coming because there would be almost a feeling of tearing in my eyes if I looked a certain direction. Then the red spot, the pain and tenderness to touch around the outside of my eye. So with no answers and lots of ibuprofen, I began calendaring my episodes. After 6 months I came to realize that it began as I began ovulating and would go away by the second or third day of my menstrual cycle. I set my appointment with my gynecologist and he was my answer. I brought my notes that I had been taking and made my appointment during the time my eye would be red. He listened and read my notes and said he had never really heard of such. He said if he couldn’t figure it out he would find someone who could. So I received a Lupron shot to “turn off” my hormones for 3 months. Had a small episode the first month then nothing the next 2 months including the abdominal pain. Could not afford another $2000 shot, so the first month off shot I had another full blown episode. I reached out again and he said let’s try this new medication, Orilissa. No red eye, no abdominal pain since September. In March he tried to put me on the maintenance prescription and eye started turning red and abdominal pain came back. Made an appointment and he said we now know you have endometriosis and it is in your eyes. I am able to be on this medication until menopause, then I will no longer have to deal with it. I have dark brown eyes and no floaters. Like you I had a hard time finding information on endometriosis. I did read something on menstrual red eye but nothing about endometriosis. I share this in hopes that it may help someone like me.
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Hi Cristina! Just checkin’ in on ya. How are you doing??
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Reading all the above makes me curious and gives me hope in the fact people are receiving support I’m personally feeling very lost and alone and have done for 18mth. I’m sorry for the following but I want to share in case anyone can help guide me in support I need to ask for.
I have not had a diagnosis and am really on the edge wellbeing wise. At the age of around 14 due to the pain. And high bloodloss which was making me anemic I was placed on the pill and mechanic acid. Fast forward to the age of 30 i came of the pill to get pregnant we had a miscarriage but then luckily concord at 32 we had our daughter when she was 6mth we conceived our son my periods had started back as she was weaned at 17weeks so breast feeding was minimal.
After our son I didn’t want to have the coil or pill as I didn’t want to mess with my hormones again as I can get quite depressive leading into a period. My periods from my son being born have progressively gotten worse (42 now) they are heavy and painful and I loose large clots most months some months just small clots.
In March 2019 i suffered so badly i was laid up in bed, a week after my period I had a non bleeding episode that scared my husband. I was doubled over with sever cramps. At this point I finally felt i needed help. I was referred to a gynacologist but told my option would be the coil. The gynacologist said my option would be the coil three times I asked if that would help with the pain they reluctantly agreed to completed an ultra sound before further discussions on the mirena coil. The ultra sound showed a polyp. So my gynacologist booked me a hysterocopy to insert the coil and remove the polyp at the same time they did a laparoscopy.
The polyp had disappeared the coil was inserted and the laparoscopy was clear. This was November 2019 in July 2020 i had the coil removed my pain hasn’t improved, in had bled since 23rd Nov to 9th July with on my 65 days not bleeding my fatigue was getting worse my lack of sleep due to pain not improving and I was steadily gaining wait despite doing 5-10k walks and 7k bike rides a minimum 3 times a week sometimes more and living an 80-20 split on food. My Well being was/is suffering greatly, my right side pain can travel round my back which has impacted me being able to run my right eye feels heavy and achy every day like I haven’t slept at all but my left doesn’t.
I have suffered with migraines but not regularly in August this year I had a sever migraine and noticed the following day my right pupil was slightly bigger than my left and has remained so. My optometrist has checked my sight. Dilation and general health of the eye and found no issues but concurs there is a slight difference.
In 2012 i had bells palsy which meant my left side froze and not my right the theory is the 7th cranial nerve is trapped due to either stress or viral infection neither was the case for me. I have mentioned this to the gynacologist and asked if anything is linked but have been dismissed I had a spinal and pelvic me I 4weeks ago and am still awaiting and appt to discuss my GP has chased and they said they can’t offer a date as yet.
My basic thyroid has been tested and said to be normal though I don’t know what normal is my hormones have never been tested and I am pushing to try and get them done as the gynacologist has said my only option is prostap? Or pain management(well currently I am on 1-2x 500mg naproxen daily with up to 8 paracetamol some days I take nothing and muddle through other days I’m on the max and feel it not touching the pain) so how effective will pain management be? I don’t want prostap as it basically puts you in an early menopause so messes with your hormones so without knowing what my hormones are at why mess with them. I tried that with the coil it amid matters worse and spiralled me into sever depression.
Unfortunately i struggle to talk to people I thought my friends as they can’t seem to accept I’m not laughing or smiling if when we had get together and that has intern stopped them waking me to be part of rhings, they say I shut them out but they don’t ask how I am. All this is massively impacting my life now.
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Are you able to search for a physician in you’re area that specializes in Endometriosis? It may be your surgeon just didn’t see it? Sometimes the lesions can be near invisible. Or discuss other causes of pelvic pain, like adenomyosis. Are you able to seek out pelvic floor therapy? Sometimes.a frozen pelvis can cause the pain too. I wish you luck, hun, in your journey for answers ❤
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These specialist really helped me with my endometriosis. https://innovativegyn.com/
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the gynecologists who did the laparoscopy didn’t wait around for me to come round, and left the ward gynecologists to mention nothing had been found and that they could put me forward for a pelvic pain incompetence study to which i agreed as I want answers I saw him in the December after going through my history and examining me he informed me the issue was gynecological and refered me back the not hearing anything by February I went back to the GP they refered me to another gynecologists at another hospital he listened and said there was no point in another laparoscopy if the 1st found nothing then a second would be the same, he suggested a pelvic and spinal MRI which I had at the begining of august and the habe the results but cant plan to see me yet. I have pushed my GP to do more than just the basic bloods and to check my hormone levels fingers crossed that is going ahead tomorrow. Whilst there I will ask about the things you mention above aswell as mention as my optometrist has told me too my slightly bigger right pupil xx
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In 2020 I was finally diagnosis with Endometriosis after laparoscopic surgery due to severe pain in my pelvic and inflammatory issues. I am 41 and I have brown eyes. I am very sensitive to the sun light. Prior my surgery, 7 years back I started going to doctors and specialist as my eyes get really red and they hurt a lot. The pain will give me horrible headaches that not even pain killers will helps. Just this month I learned from my gynecologist that endometriosis can be in the eyes as well. It is so painful that I can not work. I get blurry vision as well. I would like to get more information about this. I am very new with my diagnosis and I am currently trying Skyla. But I still have the issues of the pain. Prior I was on different birth-control pills but the side effects were too much. I experienced suicidal thoughts, insomnia, and severed mood swings. The gynecologist told me that I am very sensitive to estrogen. My doctor prescribed Oralissa. I have not taken it yet. I wanted to learn more about the medication. I am still learning about Endometriosis and I am still trying different treatments to see what works for me? Thanks to all the ladies that shared their stories. I helps a lot to know that I am not the only one with this complicated diagnosis.
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Good luck with your journey and diagnosis! If you haven’t already seen it, i have a blog entry re Orilissa. The decision is 110% yours to make ❤
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Yeah am endo patient since 2005 when I was diagnosed.
It hasn’t been fun at all.
I keep experiencing strange pains on different body part.
My eyes get so painful that I keep visiting the ophthalmologist bit it doest help at all. They get puffy face than when you look at my face i look that I have added weight and after a some days it clears.
Now I have sensation from my pelvis going down on my thigh area like ice cold water flowing and very painful that it makes me go numb and can’t do much for myself!
Kindly help
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I have endo, only diagnosed this year after 34 years (I’m almost 45). Next month I’m having a hysterectomy and removal of patches of endo and pelvic adhesions. One of my ovaries is tethered to the back of my vagina. I’m now in almost constant pain and very frequent severe nausea. Anyway, what I’m finding really interesting is the more I read about endo, the more I find it may explain numerous random symptoms that you might not think were anything to do with endo. My hip pain, occasional bouts of sciatica, my long history of migraines and bad headaches. There’s a connection to allergies, food intolerances, other inflammatory conditions and so on – does this explain me developing seasonal hay fever and occasional eczema a few years ago after never having either before? Is this connected to the worsening of my endo? Is there a connection to my history of very recurrent candida (vaginal thrush)?
And the eyes. A few months ago I developed a very red and uncomfortable eyeball. This was diagnosed as episcleritis, which looks quite like conjunctivitis but isn’t actually an infection. It took weeks to clear up, even with steroid eye drops, and I continue to battle dry eyes since and make sure to use Hycosan Extra eye drops frequently each day to stave off a return.
John’s Hopkins says episcleritis is an inflammatory condition affecting the episcleral tissue between the conjunctiva (the clear mucous membrane lining the inner eyelids and sclera) and the sclera (the white part of the eye) that occurs in the absence of an infection. There is no apparent cause, but it can be associated with an underlying systemic inflammatory or rheumatologic condition such as rosacea, lupus or rheumatoid arthritis.
So what I’m wondering, of course, is since endo is also an inflammatory disorder – is there a link to the episcleritis??
Much worse than my own situation, a friend with severe endo had it so bad that it even led to cysts at the back of her eyeballs that it was confirmed were caused by the endo. She had a hysterectomy with ovary removal a year ago and the cysts immediately stopped growing, but they were large enough by then to be causing pressure and discomfort so she had to have eye surgery to remove them. No return since then.
So I definitely believe there can be a link between endo and certain eye problems. Is there anything it doesn’t affect in us?!?!
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I was diagnosed with Endo a year ago after more than a decade of trying to get a diagnosis. I had an ablation and laparoscopy, and Mirena IUD placed. I was mostly OK for 6 months, then all the symptoms came back with a vengeance. Like everyone else, I have a constellation of symptoms that occur as soon as I am ovulating, and fades away as soon as my period is over. Bone pain, Reynaud’s syndrome, passing out, nausea, extreme fatigue, abdominal pain, pain near my liver and under my ribs…so many things. I also get cystic acne, infections that won’t heal, and infections around hair follicles. In the last couple years, I have experienced severe migraines that are so sharp that I feel like I am about to have an aneurism. I also get TMJ pain, and I feel like I can’t breath. My throat and lungs feel totally constricted, like I am being strangled or suffocated. In the last 4 years, after never needing glasses, I suddenly developed astigmatism. My doctor said my vision is actually 20/20, as it always has been, but the shape of my eye changed so much that I can’t see without glasses at all. So I went from no glasses to wearing them 24/7, or else I feel sick and get a painful migraine within minutes. Just this past year I started getting floaters and white flashes of light. Sometimes it feels like my corneas are ripping away. My eyesight keeps changing. And sometimes a fluid comes from my eyes that seems like it is mucus, like from my nasal passages. It is not bloody, but it is different from tears. I have heard a lot of the same garbage from doctors that I am just stressed, or I am too sensitive. I’ve had a fibromyalgia diagnosis within the last 5 years, but then a different doctor reversed that. And now I am having heart issues, where my heart is pounding and racing, tachycardia, severe vertigo, periods of becoming catatonic, tremors, and what feels like a seizure. I’m stuck in bed for weeks at a time, unable to walk or stand for more than a few minutes. I have problems with maintaining weight, body temperature, and strength. I tore my meniscus in my knee just before COVID, because I lost so much strength and stability after being in bed for so long. I am a mom to two special needs kids, and it really affects my whole family. My husband is an incredible support to me, and an amazing father, thank goodness for that. But I feel like I am falling apart. I turn 40 tomorrow. I feel like I am 80. And I feel like I have missed my kids growing up.
And yes, I have blue-gray eyes.
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Well, well….I was quite, what can I say,.. relieved to find other people talking about Endometriosis and the eyes. I Was eventually diagnosed with the dreaded disease in about 1986 when I was about 22. I had already been suffering unbelievable pain since I started my periods at 12 years old. I met my husband at 17…. Needless to say he was a gentleman until I reached 18 years old! But we had no sex life without the most unbelievable pain for me. It took until I was 22 and my husband sent me through private health insurance see a Professor in Gynaecology to tell me he detected, through a laparoscopy that it was Endometriosis but it was wide spread and until I went into surgery, he wouldn’t know to what extent.
I went through 7 hours of surgery. Of course back then, the disease was something of a mystery. I had a lot of my womb, but not all removed, parts of my bowel, a sacral neurectomy, I can’t remember all of it and I wasn’t given a report afterwards.. But the thing that I suffered and my husband noticed was my awful eye pain at a certain time .every month. Even after the op this went on for years. I was so extreme my husband used to have to take me down to the doctor from where we were remotely living to get a PETHIDINE injection to get rid of my pain and stop me bashing my head against the wall saying I want to die. This was a regular event for years, even after two operations.
Then it got slightly more manageable with very strong pain killers that I have been on for the last 30 years which I take every day, some days are worse than others. I have had several episodes of optic neuritis which I really don’t know if it has had anything to do with it. But many times I have mentioned could it be the fact that endometriosis got that far, and I seem to have been dismissed about the idea, even though I have been through many intense tests.
I am convinced it is this disease that has left me with the pains I have in my eyes.
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Thank you for sharing. Do you track your symptoms and timing, etc.?
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Hello. I’m ophthalmologist in Romania and I’ve seen today a 28 year old woman , stage 4 endometriosis , with subcapsular cataract both eyes and epimacular membrane both eyes.
Can all defects to be related ?
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they may be – My cataracts developed in both of my eyes after treating with Lupron Depot – there are numerous studies which have shown to cause cataracts ni men after using Lupron Depot for prostate cancer. You may inquire if she’s been on any medication for her Endometriosis?
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Vissane- dienogest was the treatement.
Now she is after the 3rd abdominal surgery for endometriosis and intestinal oclussion. One of her ovary was removed.
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I’m no doctor or expert…but WebMD shows cataracts as a rare side effect of hormones. https://www.webmd.com/drugs/2/drug-154305/estradiol-dienogest-oral/details/list-sideeffects
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I’m so sad to read all of the suffering all of the posters have gone through and hope things have improved for everyone. I’m currently in agony with period pains and am due for my first laproscopy in a couple of weeks. I have visited doctors and gynea specialists several times as i suspect the level of period pain im experiencing is not normal. A recent scan found two uterine polyps which seems to be the trigger for finally getting offered the laproscopy. I just worry that my symptoms are not bad enough to justify general anasthetic, time off work for recovery etc etc so stupidly didnt take ibuprofen before the pain started to see how bad it really is. (I usually dose myself up in advance, which helps a huge amount but now I’m getting an upset stomach from the ibuprofen too) Well I regret not taking the painkillers as the pain is excruciating and I’m bleeding far too much its also making me nautious. I had an MRI of my head and neck last week due to sudden eye flashes in my left eye that won’t go away, I hadn’t really put two and two together until now. I have had severe eye floaters for years with countless visits to eye doctors but have been told it is incurable. I like the previous analogy of vision looking like a lava lamp, my vision is similar to that, but now with the sensation someone is spinning a sparkler round in circles in my left eye too. I work in an office on the computer so this is not ideal! I’m finding it so hard to work for long periods of time and have to look away otherwise migraines are bad and I feel like I’ve been punched on the nose. With that in mind, I wanted to throw a totally wierd symptom in to the mix but it’s really gross. On a couple of occasions, I had the sensation of something being stuck behind my nose. For want of a better word, I honked up through my mouth what looked like part of my body, but I’m not sure what! A couple of doctors found it fascinating, but couldn’t explain it. The second time it happened they sent it off for testing but it was inconclusive. Perhaps it was endometrial tissue, but to me it looked more like tubing like part of an artery or something. One doctor suggested it could have been a clot, but it was grisselly in texture. It just thought I would mention it on here in case it is useful information somehow. I have pictures if you can stomach it or are a doctor and as fascinated as mine were at the time! I would love to know if the removal of endometrial tissue in the abdominal areas help the floaters and flashes symptoms.
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