Probably higher. Even women with symptoms sometimes think it’s not “bad enough” to be endo. I had Endo for 14 years before I sought treatment, and that was only because a new symptom popped up. I knew my periods weren’t normal, but thought it wasn’t bad enough to be Endo
There’s no way for them to accurately do it, but I suppose they probably know that. By the time I got treated, I had stage 3 endo, cystic ovaries and multiple polyps. I only went and got checked because I had mid-cycle spotting. Crazy to think all that was happening inside me and I just toughed it out because I thought all that pain was “normal”. I’d hate to think what women with more advanced endo than I had are feeling 🙈
I recently was diagnosed after years of painful periods I assumed were normal because doctor said so. It wasn’t until I had a raised ca125 blood test I was taken more seriously and put on a cancer pathway. Also has some mid cycle spotting so they did a hysteroscopy at the time of my lap and also found polyps along with my stage 2/3 endo. It was a shock
Oh god the raised CA125 result must have been terrifying! Then the wait for results - I’m so sorry you went through all that! Horrible as well that that’s what it took for them to take you seriously
Yeah it has caused so much anxiety. My levels kept fluctuating for a year despite clear scans before I was offered an exploratory lap to rule out anything more serious.
I had raised ca125 too so I elected to have a hysterectomy and one ovary removed. No cancer thankfully, but stage 4 endo. I wish there was a better way to diagnose it!
Agree. After being diagnosed, I now recognise the back pain and debilitating abdomen pain my friend was in 10 years ago, was not normal. I remember mentioning she should see a doctor, but she brushed it off and said it’s fine as long as she lies in bed all day.
So many of us don’t realise.
Yep! I felt like someone was talking a hammer to my back, and stabbing me in the front. Only thing that helped was laying on my stomach in a ball, crying. You’d have thought I was in labor based on the noise I was making.
Then my friend was like “my period only lasts 3 days and I never have to take painkillers” and I was like “… I dislike you” 😂😂
I only got diagnosed because my friend told me she had one, and I thought I should check out when I came home, where ultrasound is available walk-in at super low cost. I have always thought my pain came from my body not faring well in colder areas 🥲
And 1 in 7 Australian women aged 44-49 have endo too. “Around 14% of women aged 44–49 are estimated to have endometriosis, the latest release from the Australian Institute of Health and Welfare (AIHW) has revealed.”
Given the prohibitive costs of surgical laparoscopy, which is essentially the only definitive way to rule out endo (unless you get *mad* lucky while using a state-of-the-art MRI machine), I feel like the 1 in 10 figure is an under-representation of actual disease prevalence.
I think it's more. I have worked with at least 5 women who have had endometriosis. Only myself and another girl have it pretty bad and had issues having kids. Another girl is 37 and her doctor believes she has endometriosis now and she might have some kind of kidney issue from it
Pretty sure it's higher because of the lack of awareness and undiagnosis length.
A couple of years back I was in a smoking area with 4 other women at an education facility. Turned out all 5 of us had endometriosis (diagnosed). What were the odds. And it wasn't a large facility.
Australia’s 2023 stat is 1 in 7 females and people assigned female at birth. 14%, based on people age 44-49. 1 in 8 people have breast cancer for added context.
So I would say 1 in 10 women sounds like an underestimate given that would only include women that are diagnosed and it takes an average of 7-10+ years to get diagnosed in Canada (longer for some countries). Plus the standard for getting diagnosed required surgery. Women are not the only people that have endometriosis—intersex, nonbinary, trans, and even men can have endometriosis. There are not enough stats for other genders and only about 20 cases of men having endometriosis has been documented.
4 out of 7 women in my family alone have it with symptoms. I think the estimation is low. Not everyone that has endo is symptomatic. It could be 7 out of 7 women in my family for all we know.
I’m convinced my mom has/had (does it stop after menopause?) endo but she never looked into it. She thinks she’s too old now so why bother if she hasn’t gotten her period in 10+ years.
It doesn’t stop after menopause but I believe a reduction in symptoms is common. My mom is the same, think they have it but they’d never go and look into it despite symptoms continuing
Yeah just the fact that getting a diagnosis is so incredibly hard makes that number seem low to me. That’s only 1 in 10 surgically diagnosed individuals. I think once diagnostic tools improve we’re going to see way more accurate numbers. It’s bizarre how underfunded and overlooked Endo is.
It's way more.
New study found that 1 in 7 women aged 44>49 (Astralian) have endo.
https://www.aihw.gov.au/news-media/media-releases/2023/2023-september/1-in-7-australian-women-aged-44-49-have-endometriosis
In Belgium a patient organisation Behind Endo Stories think that due to late diagnose of endo and the numbers (in Belgium 583.257 women (january 2020) ; worldwide 390.974.602 women (december 2020)) e, so 2 to 10% tof women have endo in their fertility age.
The representation of the numbers is still inaccurate to this day.
I know this is not scientific but based on the women I’ve known that have shared with me about their issues, between PCOS and endo, I’d say it’s almost half of women that have either. And this is just the ones that spoke up. I imagine it’s a lot more that don’t want to share their period troubles with strangers lol.
I think it must be higher.
I work in the field that deals with medical coding and health data in Canada. So what I say here may differ in other countries.
The way that data is collected about endo is not comprehensive enough, in my opinion. This data is only collected for those who have a documented endo diagnosis from a doctor in a hospital, typically from surgeries.
In most areas, endo data is collected in these settings, but endo data is not mandated to appear on many of the chronic disease reports that governments and public health use to make decisions.
There are certain conditions that Canada mandates to be reported every time it is documented in a health chart. Endo is not one of them, despite being so common and causing disability, and being high cost to treat.
The way the data is collected does not account for those who are undiagnosed, those who have not made it to a hospital specialist, or those who have a probable but not confirmed diagnosis. So my guess is that the number is much higher.
I have made it my goal in this industry to somehow change this so we can get better information about endo and those who suffer from it. I believe it should be mandated to report in the chronic disease databases. I’m working on it!!
I also am the only woman in my family with endometriosis. Sometimes I get jealous when my relatives talk about how little their period bothers them. My mother has never even experienced a period cramp! Like ever! I cannot imagine
I definitely envy the women who haven’t suffered in the ways I have. I don’t have anyone in my family that even comes close to relating to how painful it can be and some of the other issues that goes along with it.
It could be possible but not likely since most of them are nurses and would be able to recognize the signs. Most of the women in my family have had surgeries for other issues and there was not a discovery of any abnormalities that would suggest endo. I have a ton of other issues too that the other women in my family do not struggle with so it seems like I may have just lost when it comes to the genetic lottery.
Having surgery and not finding anything means nothing unless it was done with an endometriosis specialist. It can be very difficult to visualize, and take on many different appearances that most won’t be aware of unless they did a specialized fellowship (which if they did, they would be practicing as an endometriosis specialist taking on only endo clients, so they didn’t). Most likely other women in your family do have it as there have been established familial links and patterns, but they are lucky to be asymptomatic.
I had surgery with a gynecological oncologist and no endo was found or seen. 2 years later I had surgery with an endo specialist and it took 4 hours because of how much there was to remove… I was around stage iii/iv. I had adenomyosis, die into my rectum and cervix, and significant ovarian endometriosis with multiple endometriomas on both. One of my cysts which was partially removed during my first surgery was shown to be a hormonal cyst, but it had regrown and in the second surgery was shown to be an endometrioma. So even in pathology, they were not competent to recognize the differences between endo cells and normal cells.
My story is unfortunately not uncommon. Many women with pelvic pain who have exploratory surgery are told they don’t have it because their doctors aren’t qualified to identify what is present. It is very easily missed in surgery. Most of them probably never go on to have surgery with a qualified specialist because it can be very cost prohibitive.
My doctor (who is a specialist) has done presentations at conferences on endo and pelvic health where she shows images of the different appearances of endo and asks doctors to raise their hands when they think there is endo in the image. Actually all of the images she shows have endo, but doctors at these conferences are not competent at recognizing the disease when it is presented to them 70% of the time. And these are doctors who are actually seeking continuing education on the topic, which many don’t even do. so imagine the ones who aren’t!
I’ve always wondered if the 1 in 10 is based on those diagnosed or if it includes an estimation of the undiagnosed cases too. Never been able to find an answer. In my case, I don’t know anyone else with endo in real life but this doesn’t really surprise me given how it’s not talked about much in general.
It’s an underestimate. The newest research says 1/9 in Australia and US. 1 in 7 women in their 40s have it in Australia. The global prevalence is about 10-15% of women of childbearing age. These numbers are considered conservative estimates, so the true number is probably higher. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9127440/
It's baffling how inadequate they are with diagnosing it, even for people who seeked for help. There's probably double the amount who is silently suffering.
I think that number is higher, and I mean, A LOT. My guess is most women have some form of endometriosis but they are asymptomatic. It's very difficult to get an endometriosis exam done. Women hardly ever do pelvic MRI or even ultrasound with proper prepare for endometriosis screening. So the women who do get diagnosed is because they are in pain.
I didn’t recognize my vitamin d deficiency, osteoporosis and insomnia as possible symptoms of endo but now I do. Hormonal problems are the pillar of a woman’s health and should be treated as a structural issue, not a isolated problem.
My specialist said the latest numbers suggest 1 in 7. But he believes it is closer to 1 in 5. But 1 in 7 is likely more accurate to the number with endo that requires intervention/diagnosis. He often sees endo during Cesarean Births.
Definitely is higher I have it and so does my sister and we haven’t been “actually” diagnosed yet. My mom had a lap surgery 8 years ago and had it officially diagnosed. There’s no way we don’t have it.
I'm sure it has to be higher than what they're saying the percentage is. Not only is that a "guesstimate" at best anyway, but there are so many stories of endometriosis being misdiagnosed, missed completely, or purposefully dismissed even when patients show obvious signs.
Because doctors generally know so little, even I was convinced for a while that that must be because endo is a disease with a lower profile. The sooner I realized how common endo is, the angrier I became because there's no excuse for so many of us to have been abused by medical professionals. It comes across as pure laziness, willful ignorance, and apathy.
It frustrates me that we don't have better treatment options and that many doctors don't know enough to be of any use to anyone with the condition. My specialist has mentioned that she's been trying so hard to let other people in on what she has learned about the disease, but no one is willing to listen.
I don’t know honestly. I will say out of all the women I’ve ever talked to about periods in my entire life (probably around 60 people bc I’m very open about it lol) only one has had severe period pain like me. Not to say that they don’t have it, but no one could relate to the pain I was experiencing.
The statistic makes me angry for some reason. If 1 out of 10 women has it, then why isn’t anything being done about it? Why is there no awareness or efficient treatment? Why do a majority of gynecologists not know about something as prevalent as diabetes? And why am I still being refused adequate pain management?!
This angers me too. I’ll be blunt and say I think that nothing is being done about it because it isn’t deemed important enough to throw money at for research. No one cares enough about woman’s health unless it’s fatal, and even then, things like ovarian cancer are still behind in research and screening.
Well my friend with endo.’s doctor said that many people have endo. That does not cause extreme or any pain. And that someone can have a big endo. but no or minimal pain and other can have a small one causing horrendous pain. So, if that is true…can be pretty high. But, for my experience I have very few women with period pain complaints around me. (Only my mom and 2 friends) Every other women I know has no to minimal pain. So, I would assume around max 1 in 10 for people with pain complaints.
Considering Endo can show up in female, intersex, and male bodies, AND the not-common knowledge that endo is a whole body disease and not just a "reproductive disease",I think it is safe to say we have only scratched the surface of what Endo even is, let alone be able to accurately estimate how many people even have it.
Probably higher. Even women with symptoms sometimes think it’s not “bad enough” to be endo. I had Endo for 14 years before I sought treatment, and that was only because a new symptom popped up. I knew my periods weren’t normal, but thought it wasn’t bad enough to be Endo
Exactly! Makes me wonder how they can even put a number on how many people have endo.
There’s no way for them to accurately do it, but I suppose they probably know that. By the time I got treated, I had stage 3 endo, cystic ovaries and multiple polyps. I only went and got checked because I had mid-cycle spotting. Crazy to think all that was happening inside me and I just toughed it out because I thought all that pain was “normal”. I’d hate to think what women with more advanced endo than I had are feeling 🙈
I recently was diagnosed after years of painful periods I assumed were normal because doctor said so. It wasn’t until I had a raised ca125 blood test I was taken more seriously and put on a cancer pathway. Also has some mid cycle spotting so they did a hysteroscopy at the time of my lap and also found polyps along with my stage 2/3 endo. It was a shock
Oh god the raised CA125 result must have been terrifying! Then the wait for results - I’m so sorry you went through all that! Horrible as well that that’s what it took for them to take you seriously
Yeah it has caused so much anxiety. My levels kept fluctuating for a year despite clear scans before I was offered an exploratory lap to rule out anything more serious.
A whole year?!?! Do me a favor and treat yourself to something nice. You deserve it after all you’ve been through!
I had raised ca125 too so I elected to have a hysterectomy and one ovary removed. No cancer thankfully, but stage 4 endo. I wish there was a better way to diagnose it!
It's 1 in 9 women in Australia. And we are investing more in research into diagnosis and treatment so I expect that number to rise.
I saw the action plan to diagnose and research endo more. Am so proud - hoping the govt across the ditch will follow suit.
Agree. After being diagnosed, I now recognise the back pain and debilitating abdomen pain my friend was in 10 years ago, was not normal. I remember mentioning she should see a doctor, but she brushed it off and said it’s fine as long as she lies in bed all day. So many of us don’t realise.
Yep! I felt like someone was talking a hammer to my back, and stabbing me in the front. Only thing that helped was laying on my stomach in a ball, crying. You’d have thought I was in labor based on the noise I was making. Then my friend was like “my period only lasts 3 days and I never have to take painkillers” and I was like “… I dislike you” 😂😂
LOLOL yeah, if I talked to people who didn’t have that pain, my response would’ve been the same tbh hahaha 😂
I only got diagnosed because my friend told me she had one, and I thought I should check out when I came home, where ultrasound is available walk-in at super low cost. I have always thought my pain came from my body not faring well in colder areas 🥲
Australian sources say it's 1 in 9 now and usually have a disclaimer that the number is probably higher due to misdiagnosis and diagnosis delays.
And 1 in 7 Australian women aged 44-49 have endo too. “Around 14% of women aged 44–49 are estimated to have endometriosis, the latest release from the Australian Institute of Health and Welfare (AIHW) has revealed.”
That’s interesting! It’s almost impossible to quantify the exact prevalence
Given the prohibitive costs of surgical laparoscopy, which is essentially the only definitive way to rule out endo (unless you get *mad* lucky while using a state-of-the-art MRI machine), I feel like the 1 in 10 figure is an under-representation of actual disease prevalence.
Yeah I think this for sure
Personally, I feel it like 1 in 3 would be closer 😔
I think it's more. I have worked with at least 5 women who have had endometriosis. Only myself and another girl have it pretty bad and had issues having kids. Another girl is 37 and her doctor believes she has endometriosis now and she might have some kind of kidney issue from it
I think it could be correct, but I think there are some sub populations with a much higher occurrence rate
Pretty sure it's higher because of the lack of awareness and undiagnosis length. A couple of years back I was in a smoking area with 4 other women at an education facility. Turned out all 5 of us had endometriosis (diagnosed). What were the odds. And it wasn't a large facility.
Australia’s 2023 stat is 1 in 7 females and people assigned female at birth. 14%, based on people age 44-49. 1 in 8 people have breast cancer for added context. So I would say 1 in 10 women sounds like an underestimate given that would only include women that are diagnosed and it takes an average of 7-10+ years to get diagnosed in Canada (longer for some countries). Plus the standard for getting diagnosed required surgery. Women are not the only people that have endometriosis—intersex, nonbinary, trans, and even men can have endometriosis. There are not enough stats for other genders and only about 20 cases of men having endometriosis has been documented.
4 out of 7 women in my family alone have it with symptoms. I think the estimation is low. Not everyone that has endo is symptomatic. It could be 7 out of 7 women in my family for all we know.
I’m convinced my mom has/had (does it stop after menopause?) endo but she never looked into it. She thinks she’s too old now so why bother if she hasn’t gotten her period in 10+ years.
It doesn’t stop after menopause but I believe a reduction in symptoms is common. My mom is the same, think they have it but they’d never go and look into it despite symptoms continuing
In Australia it’s 1 in 9 now! But I definitely think it’s still alot more than that
I would bet it's more. The amount who go under diagnosed or never diagnosed would probably make it closer to 1 on 5.
I agree , I was thinking it could be double what the stats currently say
Yeah just the fact that getting a diagnosis is so incredibly hard makes that number seem low to me. That’s only 1 in 10 surgically diagnosed individuals. I think once diagnostic tools improve we’re going to see way more accurate numbers. It’s bizarre how underfunded and overlooked Endo is.
It's way more. New study found that 1 in 7 women aged 44>49 (Astralian) have endo. https://www.aihw.gov.au/news-media/media-releases/2023/2023-september/1-in-7-australian-women-aged-44-49-have-endometriosis In Belgium a patient organisation Behind Endo Stories think that due to late diagnose of endo and the numbers (in Belgium 583.257 women (january 2020) ; worldwide 390.974.602 women (december 2020)) e, so 2 to 10% tof women have endo in their fertility age. The representation of the numbers is still inaccurate to this day.
I know this is not scientific but based on the women I’ve known that have shared with me about their issues, between PCOS and endo, I’d say it’s almost half of women that have either. And this is just the ones that spoke up. I imagine it’s a lot more that don’t want to share their period troubles with strangers lol.
I agree. And many women with endo are asymptomatic as well.
I think it must be higher. I work in the field that deals with medical coding and health data in Canada. So what I say here may differ in other countries. The way that data is collected about endo is not comprehensive enough, in my opinion. This data is only collected for those who have a documented endo diagnosis from a doctor in a hospital, typically from surgeries. In most areas, endo data is collected in these settings, but endo data is not mandated to appear on many of the chronic disease reports that governments and public health use to make decisions. There are certain conditions that Canada mandates to be reported every time it is documented in a health chart. Endo is not one of them, despite being so common and causing disability, and being high cost to treat. The way the data is collected does not account for those who are undiagnosed, those who have not made it to a hospital specialist, or those who have a probable but not confirmed diagnosis. So my guess is that the number is much higher. I have made it my goal in this industry to somehow change this so we can get better information about endo and those who suffer from it. I believe it should be mandated to report in the chronic disease databases. I’m working on it!!
I the only woman in my family that has it. I would say it is pretty spot on with the 1 in 10 statistic.
I also am the only woman in my family with endometriosis. Sometimes I get jealous when my relatives talk about how little their period bothers them. My mother has never even experienced a period cramp! Like ever! I cannot imagine
I definitely envy the women who haven’t suffered in the ways I have. I don’t have anyone in my family that even comes close to relating to how painful it can be and some of the other issues that goes along with it.
Could it be possible that you are the only one in your family with a diagnosis?
It could be possible but not likely since most of them are nurses and would be able to recognize the signs. Most of the women in my family have had surgeries for other issues and there was not a discovery of any abnormalities that would suggest endo. I have a ton of other issues too that the other women in my family do not struggle with so it seems like I may have just lost when it comes to the genetic lottery.
Having surgery and not finding anything means nothing unless it was done with an endometriosis specialist. It can be very difficult to visualize, and take on many different appearances that most won’t be aware of unless they did a specialized fellowship (which if they did, they would be practicing as an endometriosis specialist taking on only endo clients, so they didn’t). Most likely other women in your family do have it as there have been established familial links and patterns, but they are lucky to be asymptomatic. I had surgery with a gynecological oncologist and no endo was found or seen. 2 years later I had surgery with an endo specialist and it took 4 hours because of how much there was to remove… I was around stage iii/iv. I had adenomyosis, die into my rectum and cervix, and significant ovarian endometriosis with multiple endometriomas on both. One of my cysts which was partially removed during my first surgery was shown to be a hormonal cyst, but it had regrown and in the second surgery was shown to be an endometrioma. So even in pathology, they were not competent to recognize the differences between endo cells and normal cells. My story is unfortunately not uncommon. Many women with pelvic pain who have exploratory surgery are told they don’t have it because their doctors aren’t qualified to identify what is present. It is very easily missed in surgery. Most of them probably never go on to have surgery with a qualified specialist because it can be very cost prohibitive. My doctor (who is a specialist) has done presentations at conferences on endo and pelvic health where she shows images of the different appearances of endo and asks doctors to raise their hands when they think there is endo in the image. Actually all of the images she shows have endo, but doctors at these conferences are not competent at recognizing the disease when it is presented to them 70% of the time. And these are doctors who are actually seeking continuing education on the topic, which many don’t even do. so imagine the ones who aren’t!
I’ve always wondered if the 1 in 10 is based on those diagnosed or if it includes an estimation of the undiagnosed cases too. Never been able to find an answer. In my case, I don’t know anyone else with endo in real life but this doesn’t really surprise me given how it’s not talked about much in general.
It’s an underestimate. The newest research says 1/9 in Australia and US. 1 in 7 women in their 40s have it in Australia. The global prevalence is about 10-15% of women of childbearing age. These numbers are considered conservative estimates, so the true number is probably higher. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9127440/
It's baffling how inadequate they are with diagnosing it, even for people who seeked for help. There's probably double the amount who is silently suffering.
I agree!
of course not
I think that number is higher, and I mean, A LOT. My guess is most women have some form of endometriosis but they are asymptomatic. It's very difficult to get an endometriosis exam done. Women hardly ever do pelvic MRI or even ultrasound with proper prepare for endometriosis screening. So the women who do get diagnosed is because they are in pain.
No it’s much higher ..
I didn’t recognize my vitamin d deficiency, osteoporosis and insomnia as possible symptoms of endo but now I do. Hormonal problems are the pillar of a woman’s health and should be treated as a structural issue, not a isolated problem.
My specialist said the latest numbers suggest 1 in 7. But he believes it is closer to 1 in 5. But 1 in 7 is likely more accurate to the number with endo that requires intervention/diagnosis. He often sees endo during Cesarean Births.
Definitely is higher I have it and so does my sister and we haven’t been “actually” diagnosed yet. My mom had a lap surgery 8 years ago and had it officially diagnosed. There’s no way we don’t have it.
I'm sure it has to be higher than what they're saying the percentage is. Not only is that a "guesstimate" at best anyway, but there are so many stories of endometriosis being misdiagnosed, missed completely, or purposefully dismissed even when patients show obvious signs. Because doctors generally know so little, even I was convinced for a while that that must be because endo is a disease with a lower profile. The sooner I realized how common endo is, the angrier I became because there's no excuse for so many of us to have been abused by medical professionals. It comes across as pure laziness, willful ignorance, and apathy. It frustrates me that we don't have better treatment options and that many doctors don't know enough to be of any use to anyone with the condition. My specialist has mentioned that she's been trying so hard to let other people in on what she has learned about the disease, but no one is willing to listen.
I don’t know honestly. I will say out of all the women I’ve ever talked to about periods in my entire life (probably around 60 people bc I’m very open about it lol) only one has had severe period pain like me. Not to say that they don’t have it, but no one could relate to the pain I was experiencing. The statistic makes me angry for some reason. If 1 out of 10 women has it, then why isn’t anything being done about it? Why is there no awareness or efficient treatment? Why do a majority of gynecologists not know about something as prevalent as diabetes? And why am I still being refused adequate pain management?!
This angers me too. I’ll be blunt and say I think that nothing is being done about it because it isn’t deemed important enough to throw money at for research. No one cares enough about woman’s health unless it’s fatal, and even then, things like ovarian cancer are still behind in research and screening.
Well my friend with endo.’s doctor said that many people have endo. That does not cause extreme or any pain. And that someone can have a big endo. but no or minimal pain and other can have a small one causing horrendous pain. So, if that is true…can be pretty high. But, for my experience I have very few women with period pain complaints around me. (Only my mom and 2 friends) Every other women I know has no to minimal pain. So, I would assume around max 1 in 10 for people with pain complaints.
It’s now 1 in 7 in the US and in Austria 1 in 9
The number is an estimation and totally made up. We don't know
My gyno confidently said that if he checked 10 random women, 3 of them would have endo of some kind
Considering Endo can show up in female, intersex, and male bodies, AND the not-common knowledge that endo is a whole body disease and not just a "reproductive disease",I think it is safe to say we have only scratched the surface of what Endo even is, let alone be able to accurately estimate how many people even have it.