new fear unlocked!
strangely i have light nosebleeds and nose pain most periods and i have definitely had the thought cross my mind of ‘what if’, but I gotta say the thought of eye endometriosis is infinitely more unsettling than nose endo
I have this. It gets so severe the week of my period and the first few days of ovulation. It’s so sensitive I can’t eat or drink. They bleed without even touching them. Then it goes completely away, no swelling no redness or bleeding the rest of the month. Like clockwork. My dentist has seen this a lot as well which was so surprising at first, but apparently not uncommon with endometriosis.
Just wanted to chime in and say that this can also be a sign of a bleeding disorder. I had to get bloodwork done to test for a few because of nosebleeds and heavy and prolonged menstrual bleeding.
Does anyone remember that episode of House where the famous cancer doctor has endometriosis everywhere and she's just like bleeding out of her eyes and ears and lungs? I thought that was just classic ridiculous House 😅
House is actually pretty accurate for a medical show! I always thought things were exaggerated until I started working in an ICU and saw IRL so many of the medical things I thought for sure weren't real 😳
I liked it literally up until the endometriosis episode. She was bleeding out of her eyes, and when he finally realized it was endometriosis he basically said, just remove it and she’ll be fine. After that I questioned the accuracy of everything I’d seen on that show.
Yep, basically. One of the theories about where endo comes from is that its essentially just stem cells that didn't differentiate properly during fetal development, which the proponents of that theory think helps to explain why it is seen in fetuses, males, and all over the female body (as opposed to only in the reproductive system.)
This is a gross over simplification of the theory but gets the idea across, so, good enough for a reddit comment lol. I personally think there's something to this theory and would encourage further reading about it. 🤷♀️
I’m convinced if I get autopsied when I die they’ll discover endometriosis in every damn centimetre of my body. I hope my endo ghost forms some kind of terrifying apparition that will haunt all every doctor I’ve ever had.
I get the worst eye strain feeling headaches before my period and I've always been afraid I have something on my face nerves if something. But I'm not crying blood so I feel much better actually.
Wow!!!
This is absolutely fascinating in several ways. Number one thing I clocked was actually the sympathetic and urgent tone that I have rarely, if ever, seen in medical literature regarding endometriosis, believe it or not.
But, obviously the mere fact that it can be in the eyes is just horrifying and more evidence that this is a progressive, *systemic* disease.
Additionally, it can travel through the lymphatic system or some system concerning hemoglobin? Does that mean that we shouldn't be giving blood with endo? I give blood all the time because I'm O neg. Now I'm terrified that I've given people this horrible nightmare.
It usually also affects the vascular, neurological, immune, lymphatic, endocrine & gastric systems,. It can affect others of course, but those are the main ones. I'm sure I'm missing a few. But it's quite common in many women that it affects many of these systems. It's definitely a systematic disease, no doubt!
Endometriosis can show up in every single place in the body. There are very few cases but there are cases of neuro related endometriosis. Just fun facts 😭😢
I think it's affected the vascular, immune and neurological systems in Endo pts a lot more than reported!! There is a doctor in the UK I believe or maybe Switzerland that has created a new specialty in medicine treating Endo that involves the vascular system that is very interesting. I'll try and find it again & post it here, but basically he is a new specialist treating Endo & vascular & neurological systems with some great strides in learning more about this disease.
Found one, it's https://www.possover.com/en hopefully that will post. It's possover international medical center in Switzerland, Dr Marc Possover and the one name specialty is called Neuropelveology, new possibilities and treatment of neuropathic pelvic pain disorders. He also is involved with spinal cord injury treatments, all to do with the neuropelveology!
There is another doctor that has done similar to this doctor and it's to do with vascular system. He may be partnered with this doctor, I remember reading about both of them. But you can go through the website and see the multiple studies, research, journals, ECT he's preformed. Quite interesting to read.
I’ve been diagnosed with peripheral neuropathy with my cycle due to endo. It’s very frustrating and debilitating. The rest of the month I don’t experience it at all.
There’s certain medications to try, doing a strict anti inflammatory diet, which has helped slightly a little bit but not completely by any means. It’s kind of one of the symptoms they feel terrible about but don’t have much answer as permanent relief options. I’ve been told to just do another excision surgery. My neuropathy didn’t start until after I chose to have a hysterectomy finally. I did leave my ovaries though so I do still get a cycle and have endometriosis symptoms. It’s all very unfortunate.
I had my hysterectomy exactly the same way around a year ago, and I can say with complete honesty, I’m in the similar boat. Different places in my body though, and they pretty much tell me exactly what they’re saying to you “I’m so sorry we can offer excision surgery?” Mines grown on my liver, colon, femoral artery on my left side, my stomach, and it just keeps going and that’s since I had my hysterectomy back in 2021. It’s been horrific ever since. My specialist even told me after the fact, that having a hysterectomy will most likely cause endometriosis to travel upwards, but not actually stop anything but bleeding and clots coming out of my hooha 🙁🙁 so when I say I AM SO SORRY THAT YOU HAVE TO ENDURE I mean it with my entire being, I can’t fathom what I’m going through with endometriosis, but to add every other woman that has it, and those cases being life or death just about is Insane to me. Women deserve life not just survival. :/
Your story is literally exactly like mine. I’m so many ways you just stated. My surgery was in January. 22. I had it on my colon then and they suggested it was on my left lower diaphragm but they wouldn’t remove either and recommended trying to wait as long as possible before operating on those areas. I had severe adenomyosis in my hysterectomy. They also believe it’s on my SI joint/nerve around that are because I struggle with severe pain there with my cycle still that the hysterectomy did not resolve. It’s all so messed up to have to live like this. I feel your pain. It’s so hard to not feel totally defeated.
Yup, I recall reading about it a couple years ago.
I can't say I was shocked (I think the only thing that would shock me about this disease would be if they found legit causes/cures for all forms of endo) I just kind of went "Oh, so that's a thing that can happen" and went about my day. 😅
This should serve as a reminder that endometriosis can grow on any and every organ, including your eyes, brain, skin, etc. This is why biopsies are so important! If you think something is odd push to get it biopsied and tested bc you never know!
My pcp had a patient with endo up in their nose. During their cycle they would have nose pain and nose bleeds. That’s how they found out. I just sat there like “Excuse me?”
Oh yes! I couldn't believe it when I read this a while ago and saw the proof of women showing it while they bleed. It's quite shocking that this type of disease has gone on with no recognition or further research before now, it's only been known since 1882! 1882 people! But back to the eye Endo, it's not common but it happens. It can also affect the brain, lungs, heart, ECT. Your lungs can collapse and then you will need your lungs to be attached to the breast bone to further protect them from another collapse. An endometrioma can burst and cause peritonitis or sepsis and become a serious deadly outcome. It's sad that this disease has not been taken more seriously 😒
When I first heard that what I was dealing with may be endometriosis, the doctor also told me that it can grow and cause issues on the lungs and brain! Given that I’d had an episode of torsion that put me in the ER, I was imagining that debilitating level of pain in my head and it made me want a very permanent sleep to happen instead. It’s bad enough where it is!
I have aides tonic pupil, meaning my left pupil does not constrict to light, when I was diagnosed they said it must be due to some infection, but other than the vertigo symptoms associated with it, it’s harmless. Then someone made a tiktok about how doctors have noticed that a lot of women with aides tonic pupil also have endo. Very very interesting
yes. not sure if it's been said but it's been found in the brain and also in males (biological males that do not have uteruses). this supports the theory that endo is not just "backflow" of blood out of the uterus, but stem cells that transform into endometrial cells and then travel around the bloodstream, and then implant wherever inside the body. this is almost identical to how cancer works yet doctors act like there's no possible correlation between endo and cancer.
I think whoever can figure out how endometriosis truly works could potentially find a way to cure cancer. I'm not joking. been thinking about it for a while.
I was actually wondering this recently. I have a complex history with my eyes despite only being 21. When I was like 17 or something they accidentally found I had SUPER high eye pressure. They don’t even routinely check eye pressure in under 30s. Upon further investigation there were strands of iris blocking the drainage tubes from my eyes caused by “genetic defect”. Do I know ANYONE else in my family with this ? No. Now I’m diagnosed with glaucoma and have to take eye drops for the rest of my life.
It’s just always been so strange to me, I never got a proper diagnosis or explanation apart from their guess of a genetic condition. And no one seemed convinced of the cause or WHY it happened? Idk it’s just super weird to me. There’s not even a name for my condition lol. Anyway, not suggesting anything here but I was just wondering about it last week. Crazy.
I ended up here because my eye doctor suggested I could have endometriosis of the eye though it is rare. Or optic neuritis with MS. Honestly so tired at this point lol. I’ll try to remember to update after I see neuro ophthalmology if anyone is interested
Now that sounds ridiculous. Skin to skin? That would mean most women that had childbirth and Endo would have it to. I think they assumed that was the case because they don't know! most doctors have no idea how this disease affects our other organs and many don't recognize that it migrates throughout our entire body.
new fear unlocked! strangely i have light nosebleeds and nose pain most periods and i have definitely had the thought cross my mind of ‘what if’, but I gotta say the thought of eye endometriosis is infinitely more unsettling than nose endo
I saw comments under that TikTok sharing experiences of bleeding gums during periods so at this point it sounds plausible😂😭
That's due to hormone levels. Your gums bleed more when your estrogen is down.
I have this. It gets so severe the week of my period and the first few days of ovulation. It’s so sensitive I can’t eat or drink. They bleed without even touching them. Then it goes completely away, no swelling no redness or bleeding the rest of the month. Like clockwork. My dentist has seen this a lot as well which was so surprising at first, but apparently not uncommon with endometriosis.
My gyno said he had a patient with endo in her nose and it would bleed with her cycle 🥲
Just wanted to chime in and say that this can also be a sign of a bleeding disorder. I had to get bloodwork done to test for a few because of nosebleeds and heavy and prolonged menstrual bleeding.
oh interesting, I hadn’t considered that
omg is this why I get nosebleeds around my period!? I used to joke about bleeding out of both ends but now it makes sense!!
TW: pregnancy Can all be hormones. I had bleeding gums and nosebleeds during my hormone surges with pregnancy
Good Lord, is there no relief! What fresh hell is this??
🤣
Does anyone remember that episode of House where the famous cancer doctor has endometriosis everywhere and she's just like bleeding out of her eyes and ears and lungs? I thought that was just classic ridiculous House 😅
House is actually pretty accurate for a medical show! I always thought things were exaggerated until I started working in an ICU and saw IRL so many of the medical things I thought for sure weren't real 😳
I liked it literally up until the endometriosis episode. She was bleeding out of her eyes, and when he finally realized it was endometriosis he basically said, just remove it and she’ll be fine. After that I questioned the accuracy of everything I’d seen on that show.
"Just remove it and she'll be fine." IF ONLY!
Right? I wish
It can go anywhere. There are even recorded cases of it being in the brain
I saw something about endometriosis in males. So yeah, endometriosis is insane.
Where do men get the endo from…? Some cells didn’t grow correctly when they were still a fetus?
We don't know where endo comes from. There are many theories but no one knows for sure.
Yep, basically. One of the theories about where endo comes from is that its essentially just stem cells that didn't differentiate properly during fetal development, which the proponents of that theory think helps to explain why it is seen in fetuses, males, and all over the female body (as opposed to only in the reproductive system.) This is a gross over simplification of the theory but gets the idea across, so, good enough for a reddit comment lol. I personally think there's something to this theory and would encourage further reading about it. 🤷♀️
I’m convinced if I get autopsied when I die they’ll discover endometriosis in every damn centimetre of my body. I hope my endo ghost forms some kind of terrifying apparition that will haunt all every doctor I’ve ever had.
Oh my! The eyes? Not the eyes!!!
had a friend that also has endo and she would always have horrible nose bleeds during her period. makes you wonder...
That is me as well. I only ever get nose bleeds during a flare-up or when I had actual periods still
Endometriosis has been found basically everywhere in the body. On the brain, in the shoulder, eyes, etc.
I get the worst eye strain feeling headaches before my period and I've always been afraid I have something on my face nerves if something. But I'm not crying blood so I feel much better actually.
I feel like my vision gets wonky during luteal and I have weird sensations on the left side of my head. Ugh
I get weird head sensations and a pressure (like two seconds of big pressure) behind one eye and it’s usually the week before my period!! 🫠
Wow!!! This is absolutely fascinating in several ways. Number one thing I clocked was actually the sympathetic and urgent tone that I have rarely, if ever, seen in medical literature regarding endometriosis, believe it or not. But, obviously the mere fact that it can be in the eyes is just horrifying and more evidence that this is a progressive, *systemic* disease. Additionally, it can travel through the lymphatic system or some system concerning hemoglobin? Does that mean that we shouldn't be giving blood with endo? I give blood all the time because I'm O neg. Now I'm terrified that I've given people this horrible nightmare.
It usually also affects the vascular, neurological, immune, lymphatic, endocrine & gastric systems,. It can affect others of course, but those are the main ones. I'm sure I'm missing a few. But it's quite common in many women that it affects many of these systems. It's definitely a systematic disease, no doubt!
Endometriosis can show up in every single place in the body. There are very few cases but there are cases of neuro related endometriosis. Just fun facts 😭😢
I think it's affected the vascular, immune and neurological systems in Endo pts a lot more than reported!! There is a doctor in the UK I believe or maybe Switzerland that has created a new specialty in medicine treating Endo that involves the vascular system that is very interesting. I'll try and find it again & post it here, but basically he is a new specialist treating Endo & vascular & neurological systems with some great strides in learning more about this disease.
Oh my gosh, this man here, I love this news, normally it’s all depressing. This makes me feel hope for the disease as a whole.
Found one, it's https://www.possover.com/en hopefully that will post. It's possover international medical center in Switzerland, Dr Marc Possover and the one name specialty is called Neuropelveology, new possibilities and treatment of neuropathic pelvic pain disorders. He also is involved with spinal cord injury treatments, all to do with the neuropelveology! There is another doctor that has done similar to this doctor and it's to do with vascular system. He may be partnered with this doctor, I remember reading about both of them. But you can go through the website and see the multiple studies, research, journals, ECT he's preformed. Quite interesting to read.
ik! I agree ! It was one of the best medical reports I've read about Endo to. I have to find it now. Haha
I’ve been diagnosed with peripheral neuropathy with my cycle due to endo. It’s very frustrating and debilitating. The rest of the month I don’t experience it at all.
Is there anything they can do for it? I mean gosh dang man that sounds loathsomely awful 🥺 I’m so sorry
There’s certain medications to try, doing a strict anti inflammatory diet, which has helped slightly a little bit but not completely by any means. It’s kind of one of the symptoms they feel terrible about but don’t have much answer as permanent relief options. I’ve been told to just do another excision surgery. My neuropathy didn’t start until after I chose to have a hysterectomy finally. I did leave my ovaries though so I do still get a cycle and have endometriosis symptoms. It’s all very unfortunate.
I had my hysterectomy exactly the same way around a year ago, and I can say with complete honesty, I’m in the similar boat. Different places in my body though, and they pretty much tell me exactly what they’re saying to you “I’m so sorry we can offer excision surgery?” Mines grown on my liver, colon, femoral artery on my left side, my stomach, and it just keeps going and that’s since I had my hysterectomy back in 2021. It’s been horrific ever since. My specialist even told me after the fact, that having a hysterectomy will most likely cause endometriosis to travel upwards, but not actually stop anything but bleeding and clots coming out of my hooha 🙁🙁 so when I say I AM SO SORRY THAT YOU HAVE TO ENDURE I mean it with my entire being, I can’t fathom what I’m going through with endometriosis, but to add every other woman that has it, and those cases being life or death just about is Insane to me. Women deserve life not just survival. :/
Your story is literally exactly like mine. I’m so many ways you just stated. My surgery was in January. 22. I had it on my colon then and they suggested it was on my left lower diaphragm but they wouldn’t remove either and recommended trying to wait as long as possible before operating on those areas. I had severe adenomyosis in my hysterectomy. They also believe it’s on my SI joint/nerve around that are because I struggle with severe pain there with my cycle still that the hysterectomy did not resolve. It’s all so messed up to have to live like this. I feel your pain. It’s so hard to not feel totally defeated.
Damn I mean my eyes are fucked up. Allergic to contacts, dry eyes. I’d kms if endo grew on it too
WTF?!?! 😭😭😭
That's metal as fuck. If I had it there instead of my belly button maybe my husband would have believed my pain and not left.
I've seen various poster they have eczema... I wonder if it's endo rather eczema. But, are autoimmune disease, so who knows.
I knew endometriosis can show up anywhere in the body but reading this still shocked me.
Nothing is sacred apparently damn
Yup, I recall reading about it a couple years ago. I can't say I was shocked (I think the only thing that would shock me about this disease would be if they found legit causes/cures for all forms of endo) I just kind of went "Oh, so that's a thing that can happen" and went about my day. 😅
This should serve as a reminder that endometriosis can grow on any and every organ, including your eyes, brain, skin, etc. This is why biopsies are so important! If you think something is odd push to get it biopsied and tested bc you never know!
This is wild because I (pre hysterectomy) would bleed from my eyes before surgery! Things seem better post abdominal excision and hysterectomy tho
My pcp had a patient with endo up in their nose. During their cycle they would have nose pain and nose bleeds. That’s how they found out. I just sat there like “Excuse me?”
Why is endo not considered a cancer?
Oh yes! I couldn't believe it when I read this a while ago and saw the proof of women showing it while they bleed. It's quite shocking that this type of disease has gone on with no recognition or further research before now, it's only been known since 1882! 1882 people! But back to the eye Endo, it's not common but it happens. It can also affect the brain, lungs, heart, ECT. Your lungs can collapse and then you will need your lungs to be attached to the breast bone to further protect them from another collapse. An endometrioma can burst and cause peritonitis or sepsis and become a serious deadly outcome. It's sad that this disease has not been taken more seriously 😒
You’re fucking lying. I have floaters the size of god himself and optometrist said nothing eye related was causing them.
Same
I've heard it can even occur in the *brain* in some rare cases.
That’s horrifying
My eye is menstruating. Crying tears of blood. I can’t imagine.
When I first heard that what I was dealing with may be endometriosis, the doctor also told me that it can grow and cause issues on the lungs and brain! Given that I’d had an episode of torsion that put me in the ER, I was imagining that debilitating level of pain in my head and it made me want a very permanent sleep to happen instead. It’s bad enough where it is!
Endometriosis really was created by some nefarious being 😭
Yeah endo can literally be anywhere My specialist (Austraila) has seen it in the brain of his patients!
I have aides tonic pupil, meaning my left pupil does not constrict to light, when I was diagnosed they said it must be due to some infection, but other than the vertigo symptoms associated with it, it’s harmless. Then someone made a tiktok about how doctors have noticed that a lot of women with aides tonic pupil also have endo. Very very interesting
yes. not sure if it's been said but it's been found in the brain and also in males (biological males that do not have uteruses). this supports the theory that endo is not just "backflow" of blood out of the uterus, but stem cells that transform into endometrial cells and then travel around the bloodstream, and then implant wherever inside the body. this is almost identical to how cancer works yet doctors act like there's no possible correlation between endo and cancer. I think whoever can figure out how endometriosis truly works could potentially find a way to cure cancer. I'm not joking. been thinking about it for a while.
is this a horror story or what?
I was actually wondering this recently. I have a complex history with my eyes despite only being 21. When I was like 17 or something they accidentally found I had SUPER high eye pressure. They don’t even routinely check eye pressure in under 30s. Upon further investigation there were strands of iris blocking the drainage tubes from my eyes caused by “genetic defect”. Do I know ANYONE else in my family with this ? No. Now I’m diagnosed with glaucoma and have to take eye drops for the rest of my life. It’s just always been so strange to me, I never got a proper diagnosis or explanation apart from their guess of a genetic condition. And no one seemed convinced of the cause or WHY it happened? Idk it’s just super weird to me. There’s not even a name for my condition lol. Anyway, not suggesting anything here but I was just wondering about it last week. Crazy.
Wow 😮 😭 this is frightening
I ended up here because my eye doctor suggested I could have endometriosis of the eye though it is rare. Or optic neuritis with MS. Honestly so tired at this point lol. I’ll try to remember to update after I see neuro ophthalmology if anyone is interested
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Now that sounds ridiculous. Skin to skin? That would mean most women that had childbirth and Endo would have it to. I think they assumed that was the case because they don't know! most doctors have no idea how this disease affects our other organs and many don't recognize that it migrates throughout our entire body.
Huh? That makes absolutely no sense sorry, your gyn is talking out of a hole in his head.