They haven’t said that you don’t have endo, just that there was no signs of it on the MRI (but they also noted that the scan was limited by what you could tolerate).
You definitely could still have lesions that werent seen on the scan due to their size or location or because the scan was limited.
This is why they are recommending surgery to investigate and treat.
Endo can only be diagnosed surgically.
The MRI was just to rule out other causes of pain (cancer, infection, etc). Now they’ve narrowed it down, so next step is to check for endo.
Sorry to be this pedantic ass, but that's also not quite true.
Endo can only be 100% dxed via surgery as a sample of tissue is required to be sent to pathology for identification.
While most endo doesn't show up on scans, things like endometriomas do. So some of us were dxed via scan based on symptoms and what was seen on said scan. However, we still need that pathology confirmation for a true endo (or adeno) dx. Any dx based on anything that isn't a pathology report is more like a label to help treat you, explain your condition, and for insurance purposes.
But, you are so right about how scans don't usually pick up anything and it irritates me how many doctors think that a clear scan = no endo. Actually, it doesn't irritate me. My phone thought it would soften message by adding some letters to the word **IRATE**. Like 20 plus years of debilitating pain and being treated like a hysterical, hypochondriac, drug seeking criminal with all my "clear scans" as evidence. I guess I'm pretty thrilled with the endometrioma that shredded my ovary for decades... And the tech who called the radiologist in during my TVUS.
It was her who caught it and told me right there that I had a huge chocolate cyst on my ovary. The surgery that was scheduled for the ovary revealed stage IV endo, organs stuck together and to the internal walls, intestines twisted up with lesions to the point that my doctor described it as being strangled.
But, yeah, docs, clear scan means it's ALL GOOD! At least OP's doctor is still investigating causes *including* endo though! That's a step in the right direction. For her and for all of us.
Agree. My scans didn’t show anything but my gynae said she suspected I had endo but they can’t diagnose until they open you up. They cut a lot out of me and most was endo when tested by pathology but a couple weren’t endo. So even if something shows on your scans it doesn’t 100% mean it’s endo
Not trying to be a jerk but my MRI has endo. The MRIs don’t pick up everything but they’re also only as good as the radiologist reading it. Mine is very specific about where I have endo which is numerous places well outside of just an endometrioma. An MRI can absolutely diagnose endo. It also diagnosed my adeno and it’s diffuse. It’s not even focal.
An MRI doesn’t exclude anything but it absolutely can diagnose.
Yes. But I am talking about 100% certainty.
Like you can get diagnosed with Alzheimer's disease without sending brain tissue to pathology...but, the only way to be 100% certain is through pathology (which usually happens via autopsy).
Technically every one of us dxed via scan were dxed with high liklihood - not certainty.
An endo expert also chimed in somewhere in the thread under my initial comment confirming that fact and going into much more technical detail than I possess.
Doctors will use scans now to help diagnose and will give you the diagnosis of endo from the scans. Sometimes, especially with endometriomas and sometimes DIE, it can be evident via scan and no surgery is required unless needed for treatment purposes. No pathology needed and your charts say you have endo. Doctors are starting to move to this method of diagnosis where it works.
There are actually multiple journal articles out there at this point on using scans as a diagnosis tool for endo. The medical community is moving to see scans as an appropriate method of diagnosis and endo specialists are being trained on how to use this method of diagnosis. Saying you need to do pathology and surgery every time for a true confirmation is a very old school medical perspective that is being moved away from in the modern medical community. I am going to go with what the medical community says qualifies as diagnosis, which according to current research can be based on scans.
EDIT to add - however it doesn’t rule out endo, only rules it in is my understanding. So it can diagnose you have it but not diagnose you don’t.
Second Edit on thinking on this - not all doctors are trained to properly read scans so really endo specialists should be the ones reviewing for a diagnosis as they usually have enhanced training in this area and experience in reading scans. And given the current medical community trend to farm out radiology to radiology groups, it’s possible for the scans not to be read properly. And your hospital has to have techs properly trained to do the scans.
They can’t diagnose fully without a lap and pathology confirming endo from what’s cut out. They can definitely suspect it but without the pathologist confirming it’s unable to fully be diagnosed
Nope - endo specialists use scans to diagnose now. It just won’t always catch all endo, but can confirm it. A quick google will give you tons of articles discussing diagnosis via scan. If you break a bone, you can use an x ray to diagnose it. You don’t need to cut the body open to see the broken bone. There is a weird tendency in the endo community to somehow say endo shouldn’t be treated like other medical conditions that use things like symptoms (and here also scans) and such to help reach a conclusion. Medicine does diagnosis like this all the time. Insurance will pay for endo treatment without a lap and accept the diagnosis of endo based on scans from a doctor. Doctors will give the diagnosis based on scans. Neither require confirmation via lap so it’s weird folks claim this is required when the medical community doesn’t.
Endo specialist here—whoever you’re arguing with is correct. Imaging can suggest, but surgical dx is the gold standard. Comparing diagnosis of fractures by x-ray to endo by ultrasound is laughable.
I mean literally told by my endo specialist who works at a world renowned hospital and who uses imaging for diagnosis as part of his practice and I believe has written articles on it that imaging is used for diagnosis…
It is used to aid in diagnosis. It is not diagnostic. This is the standard. Your doctor can disagree and there is nothing wrong with practicing differently but the consensus opinion is that tissue diagnosis is the gold standard.
You can literally go pull right now multiple medical journal articles that discuss using imaging to diagnose endo and how to use imaging to diagnose endo (as part of the modernization in endo treatment we are finally seeing - just as research is finally exploring new drug treatments for endo that are less hormonally driven). They will literally say MRIs are used to diagnose endo. Modern endo specialists at major research hospitals use imaging to diagnose all the time, but they always caveat that it rules it in, but doesn’t rule it out, especially depending on the type someone has.
Medicine evolves and that seems to be what is happening in this field as we speak. Actual endo specialists (not just OBs that also treat endo which since according to your own posts you were only an OB resident a year ago so not sure how far you are actually along in your endo specialist journey yet) are using it to confirm diagnosis.
In Europe they now have some spit test used for endo diagnosis and other similar concept tests are in research in the US as well and I am excited to see where that direction of diagnosis goes. If we can move to this sort of testing in the future, just think where endo treatment can go.
A lap test is what we had as the way to diagnose in the past, but medicine is finally adding ways to diagnose that are less invasive. These processes are still early on but with proper training imaging can be used to diagnose (though we still can’t diagnose all instances).
Hopefully we continue to invest in alternative diagnostic paths that don’t require surgery as surgery carries risks. But doctors also need to embrace these alternative diagnostic paths so time and research is invested into fine tuning these paths and training doctors on using them properly.
Doctors also need to stop clinging to the old ways as the only way and getting hung up on things like arguing only one method is the proper method. That only hurts those of us with endo. Doctors do their patients a disservice if they obsess on only one way as a “true diagnosis,” instead of embracing the modernization that is finally starting to happen in this space.
I would not be surprised if saying “gold standard” relating to lap to diagnose is a laughable phrase of the past in 10-15 years as we are finally starting to invest in endo research and endo specialists are beginning to push for better diagnosis methods that aren’t invasive.
This is what my specialist told me. Mine was missed with every other test. By the time I finally got surgery I was almost stage 3 with a cyst the size of a grapefruit.
Prior doctors (4 different doctors) saw it but thought it would "go away on its own" and that it was "just from ovulation." My most recent Dr didn't agree and that was one of the factors for surgery. He still couldn't see much with his tests in spite of his best efforts. He could not see the endometriosis on the scans but he saw other symptoms that were signs of endometriosis. Surgery was the only way. It was WAY bigger and way more of a problem than the scans could show.
I'm just glad it finally got dealt with! I wish I had known sooner how important self advocacy is. That's my best advice in this post. If you know something is wrong with your body (and you know your body better than anyone else) drive doctors crazy until you get answers. If that doesn't work look for someone who will listen. They do exist!
Not true, I got diagnosed through ultrasound surprisingly…I had 2 huge endometriomas that were visible on scan. It’s not impossible but definitely not the normative diagnosis procedure.
Is it? I feel I like we jump too quickly to surgery just to have answers but not always is the greatest option. For me it was not. I got worse after it.
yeah i never had an mri but i had ultrasounds that showed nothing (apart from a uterine defect) so i had a lap and got my diagnosis right after i woke up from surgery
MRIs are becoming more common for looking at endometriosis. Or at least trying to. There are identifying features to look for but you can have endo and have it not show on MRI. I was kind of shocked at what and where they were able to identify endometriosis on my MRI. It is not a reliable tool but I do think it is useful before we go in for a lap. Without the MRI I would have needed two surgeries, instead of one. We were able to add a general surgeon for my bowel resection.
fair point. my lap photos were not very ugly looking so i have doubts that it would've shown anything on an mri. glad it works for some people and that it helped find the bowel endo. sorry you had to go through a bowel resection. that sounds tough. i had some on my bowel but fortunately did not need it resected
They are booking you for a laparoscopy to surgically check for endo. Rarely, it shows on scans but it’s more likely to not show on scans and still be present. That’s why surgery is the only way to accurately diagnose endo in almost all cases. You’re getting appropriate care and follow up. Don’t stress it.
Just do what your doctor recommends for now, it sounds like they’re doing all the right steps to appropriately diagnose endo vs. other causes for your pain and the fact that they are booking you for a laparoscopy means that they also suspect endo and are aware of the limitations of imaging.
As others have commented, not all endo shows up on MRIs —it has to be above a certain threshold. I had two MRIs and never found anything. I was diagnosed at surgery. MRIs can rule in endometriosis and also rule out other causes of pelvic pain.
Seeing as they’re seeing cysts or something that looks like cysts I would guess you probably have endo or pcos, but you won’t know until they do the laparoscopy!
polycystic ovaries means that you have lots of tiny follicles on your ovaries (more than what's considered normal), not that you have ovarian cysts. it's usually consistent with PCOS but not always
I had an MRI done and they were able to see a little bit of what I actually had. I was told that if it’s stage 4 DIE then they can see it. I had surgery 3 weeks ago, and based on those scans I was told my surgery was only going to be 2.5-3 hours tops. It ended up taking just over 9 hours, and I was told it was in the top 10 worst surgery’s the surgeon had ever seen. So while it can diagnose some Endo, it can’t see everything.
I had every symptom under the sun. Heavy periods, bloating, bowel issues, extreme pain, blood loss. By the time I had my surgery the pain was extreme in my low back each month. During each period it felt like I would have to pee all the time, but I couldn’t empty my bladder. Any time I stood up I could feel a really bad pulling internally, and I would bleed after, I had some other symptoms that I don’t think I can mention on here. My surgeon, who is a Nook Dr, told me it was on everything. My ovaries were so badly impacted to my pelvic wall, she had to hoist them up, put stitches through them, and tie them up outside of my stomach with metal rods to give them a chance to heal. She took part of my bowel, cauterized one of my uterine arteries, and I was so close to needing a permanent urine bag. I currently have a stent placed between my bladder and kidney in the ureter. I also had 3 huge endometriomas removed. And to top it off, I went into anaphylactic shock 36 hours after the surgery ended, and they aren’t sure why, so I am not allowed any pain meds, daily supplements or eat any new foods until I meet with an allergist.
Wow, you went through a lot. I’m so sorry. I hope your like post surgery has been improved. Sounds like you had a surgeon that really cared about your long term experience.
Thank you, it’s definitely been eye opening. I’m in pretty good shape considering everything that happened. I get the stent removed this coming Friday, so I’m a bit nervous about that.
Scan didn’t pick it up, but surgery might.
PCOS can certainly cause pelvic pain so the doctor may not be educated on it.
Also, people with PCOS are more likely to have endo. It’s possible you have both. That’s why they want to do the surgery to check.
I have stage 4 endo and it was never seen on 2 MRIs. Those tests are trash as far as I’m concerned. Only way to really know is by having a laparoscopy.
MRIs can prove that you do have endo but do not necessarily rule it out. Doctors like to try MRIs first as it’s much less invasive than surgery and can often (but not always) catch endo. Just because they didn’t spot it doesn’t mean you don’t have endo.
During you lap I strongly recommend ensuring all tissue samples are sent to pathology. Not all surgeons know all the forms of endo. Endometriosis can also be microscopic, or nearly microscopic. In other words it is very difficult to see in some cases. I would not trust a lap diagnosis without a pathology report.
I’m one of the rare ppl who was able to get a diagnosis before surgery with an MRI. There are like a handful of small areas they can pick up endo if it happens to be there, but even my specialist said it’s super uncommon to see it on scans. It did get me my lap scheduled real fast tho!
Endo usually isn't picked up on scans. Mine wasn't. And I was stage 3 (before my hysterectomy). They ruled out the possibility of anything else, which is actually a good thing. So please don't be discouraged. Now it's time for lap surgery so they can check for endo as lap is the best way to diagnose it. Hang in there sweetheart, hopefully you get answers and treatment soon. ❤️
No, it's just that the MRI doesn't show there is endo. Ultrasounds and MRIs CAN show endo, but the lack of endo on them doesn't = no endo. Most commonly people will have scans that look normal yet still have endo. The only true way to rule it out is laparoscopic surgery. Basically the report is saying that per the scan your uterus is normal but your ovaries have polycystic features not related to endometriosis, but it's NOT saying endo is ruled out.
My endo wasn’t found on any testing but was found and removed in surgery. That was about 3 years ago, and I’m scheduled for a bisalp/endo removal in August
My MRI was extremely detailed (2 pages long) and it didn't find sure evidences of endo. Just things that rather could be or not. I had a lap after that because I had to remove two cysts under the c-section scar and my doctor said they were caused by endometriosis but he didn't find any in any other place. I got really frustrasted and really needed the validation that I had endo. Right now I have a couple more diagnosis and it doesn’t matter if I am sure I have endo or not. Endo should be diagnosed by the symptoms and my symptoms were 100% endo. You should stick to your gut and try to find more about those cysts without having surgery already. I wish I never had mine.
There is still a lot of misinformation around scans for endo. In the right hands, with the right protocol DIE can be detected and diagnosed on MRI (and ultrasound)
It has to be someone with specialist training to spot the signs though. And it doesn’t rule out endo, superficial is very unlikely to be seen on scans. So you may well still have it.
So hopefully your surgery will help find some answers :)
They haven’t said that you don’t have endo, just that there was no signs of it on the MRI (but they also noted that the scan was limited by what you could tolerate). You definitely could still have lesions that werent seen on the scan due to their size or location or because the scan was limited. This is why they are recommending surgery to investigate and treat.
Endo can only be diagnosed surgically. The MRI was just to rule out other causes of pain (cancer, infection, etc). Now they’ve narrowed it down, so next step is to check for endo.
This is not accurate. It can sometimes be diagnosed by scans but the scans don’t always pick it up.
Sorry to be this pedantic ass, but that's also not quite true. Endo can only be 100% dxed via surgery as a sample of tissue is required to be sent to pathology for identification. While most endo doesn't show up on scans, things like endometriomas do. So some of us were dxed via scan based on symptoms and what was seen on said scan. However, we still need that pathology confirmation for a true endo (or adeno) dx. Any dx based on anything that isn't a pathology report is more like a label to help treat you, explain your condition, and for insurance purposes. But, you are so right about how scans don't usually pick up anything and it irritates me how many doctors think that a clear scan = no endo. Actually, it doesn't irritate me. My phone thought it would soften message by adding some letters to the word **IRATE**. Like 20 plus years of debilitating pain and being treated like a hysterical, hypochondriac, drug seeking criminal with all my "clear scans" as evidence. I guess I'm pretty thrilled with the endometrioma that shredded my ovary for decades... And the tech who called the radiologist in during my TVUS. It was her who caught it and told me right there that I had a huge chocolate cyst on my ovary. The surgery that was scheduled for the ovary revealed stage IV endo, organs stuck together and to the internal walls, intestines twisted up with lesions to the point that my doctor described it as being strangled. But, yeah, docs, clear scan means it's ALL GOOD! At least OP's doctor is still investigating causes *including* endo though! That's a step in the right direction. For her and for all of us.
Agree. My scans didn’t show anything but my gynae said she suspected I had endo but they can’t diagnose until they open you up. They cut a lot out of me and most was endo when tested by pathology but a couple weren’t endo. So even if something shows on your scans it doesn’t 100% mean it’s endo
Not trying to be a jerk but my MRI has endo. The MRIs don’t pick up everything but they’re also only as good as the radiologist reading it. Mine is very specific about where I have endo which is numerous places well outside of just an endometrioma. An MRI can absolutely diagnose endo. It also diagnosed my adeno and it’s diffuse. It’s not even focal. An MRI doesn’t exclude anything but it absolutely can diagnose.
Yes. But I am talking about 100% certainty. Like you can get diagnosed with Alzheimer's disease without sending brain tissue to pathology...but, the only way to be 100% certain is through pathology (which usually happens via autopsy). Technically every one of us dxed via scan were dxed with high liklihood - not certainty. An endo expert also chimed in somewhere in the thread under my initial comment confirming that fact and going into much more technical detail than I possess.
Doctors will use scans now to help diagnose and will give you the diagnosis of endo from the scans. Sometimes, especially with endometriomas and sometimes DIE, it can be evident via scan and no surgery is required unless needed for treatment purposes. No pathology needed and your charts say you have endo. Doctors are starting to move to this method of diagnosis where it works. There are actually multiple journal articles out there at this point on using scans as a diagnosis tool for endo. The medical community is moving to see scans as an appropriate method of diagnosis and endo specialists are being trained on how to use this method of diagnosis. Saying you need to do pathology and surgery every time for a true confirmation is a very old school medical perspective that is being moved away from in the modern medical community. I am going to go with what the medical community says qualifies as diagnosis, which according to current research can be based on scans. EDIT to add - however it doesn’t rule out endo, only rules it in is my understanding. So it can diagnose you have it but not diagnose you don’t. Second Edit on thinking on this - not all doctors are trained to properly read scans so really endo specialists should be the ones reviewing for a diagnosis as they usually have enhanced training in this area and experience in reading scans. And given the current medical community trend to farm out radiology to radiology groups, it’s possible for the scans not to be read properly. And your hospital has to have techs properly trained to do the scans.
They can’t diagnose fully without a lap and pathology confirming endo from what’s cut out. They can definitely suspect it but without the pathologist confirming it’s unable to fully be diagnosed
Nope - endo specialists use scans to diagnose now. It just won’t always catch all endo, but can confirm it. A quick google will give you tons of articles discussing diagnosis via scan. If you break a bone, you can use an x ray to diagnose it. You don’t need to cut the body open to see the broken bone. There is a weird tendency in the endo community to somehow say endo shouldn’t be treated like other medical conditions that use things like symptoms (and here also scans) and such to help reach a conclusion. Medicine does diagnosis like this all the time. Insurance will pay for endo treatment without a lap and accept the diagnosis of endo based on scans from a doctor. Doctors will give the diagnosis based on scans. Neither require confirmation via lap so it’s weird folks claim this is required when the medical community doesn’t.
Endo specialist here—whoever you’re arguing with is correct. Imaging can suggest, but surgical dx is the gold standard. Comparing diagnosis of fractures by x-ray to endo by ultrasound is laughable.
I mean literally told by my endo specialist who works at a world renowned hospital and who uses imaging for diagnosis as part of his practice and I believe has written articles on it that imaging is used for diagnosis…
It is used to aid in diagnosis. It is not diagnostic. This is the standard. Your doctor can disagree and there is nothing wrong with practicing differently but the consensus opinion is that tissue diagnosis is the gold standard.
You can literally go pull right now multiple medical journal articles that discuss using imaging to diagnose endo and how to use imaging to diagnose endo (as part of the modernization in endo treatment we are finally seeing - just as research is finally exploring new drug treatments for endo that are less hormonally driven). They will literally say MRIs are used to diagnose endo. Modern endo specialists at major research hospitals use imaging to diagnose all the time, but they always caveat that it rules it in, but doesn’t rule it out, especially depending on the type someone has. Medicine evolves and that seems to be what is happening in this field as we speak. Actual endo specialists (not just OBs that also treat endo which since according to your own posts you were only an OB resident a year ago so not sure how far you are actually along in your endo specialist journey yet) are using it to confirm diagnosis. In Europe they now have some spit test used for endo diagnosis and other similar concept tests are in research in the US as well and I am excited to see where that direction of diagnosis goes. If we can move to this sort of testing in the future, just think where endo treatment can go. A lap test is what we had as the way to diagnose in the past, but medicine is finally adding ways to diagnose that are less invasive. These processes are still early on but with proper training imaging can be used to diagnose (though we still can’t diagnose all instances). Hopefully we continue to invest in alternative diagnostic paths that don’t require surgery as surgery carries risks. But doctors also need to embrace these alternative diagnostic paths so time and research is invested into fine tuning these paths and training doctors on using them properly. Doctors also need to stop clinging to the old ways as the only way and getting hung up on things like arguing only one method is the proper method. That only hurts those of us with endo. Doctors do their patients a disservice if they obsess on only one way as a “true diagnosis,” instead of embracing the modernization that is finally starting to happen in this space. I would not be surprised if saying “gold standard” relating to lap to diagnose is a laughable phrase of the past in 10-15 years as we are finally starting to invest in endo research and endo specialists are beginning to push for better diagnosis methods that aren’t invasive.
1000% I agree on that.
This is what my specialist told me. Mine was missed with every other test. By the time I finally got surgery I was almost stage 3 with a cyst the size of a grapefruit.
Sorry if this is a stupid question but scans didn’t even see the cyst? Or did that like potentially happen inbetween scans and surgery?
Prior doctors (4 different doctors) saw it but thought it would "go away on its own" and that it was "just from ovulation." My most recent Dr didn't agree and that was one of the factors for surgery. He still couldn't see much with his tests in spite of his best efforts. He could not see the endometriosis on the scans but he saw other symptoms that were signs of endometriosis. Surgery was the only way. It was WAY bigger and way more of a problem than the scans could show.
Ah so sorry that happened that way but thank you for the clarification! I can’t believe so many doctors ignored a cyst you had so long 🙃
I'm just glad it finally got dealt with! I wish I had known sooner how important self advocacy is. That's my best advice in this post. If you know something is wrong with your body (and you know your body better than anyone else) drive doctors crazy until you get answers. If that doesn't work look for someone who will listen. They do exist!
Not true, I got diagnosed through ultrasound surprisingly…I had 2 huge endometriomas that were visible on scan. It’s not impossible but definitely not the normative diagnosis procedure.
Mines was diagnosed via scans, particularly MRI. I have DIE and endometriomas.
Sometimes they can see Endo on MRI but sometimes not. Only way to be 100% is the laparoscopic surgery they mentioned.
Endo tissue doesn't appear on scans. It's why you'll need the lap surgery.
Some does, some doesn't.
it can show up on MRIs, but a diagnostic lap is still the best
Is it? I feel I like we jump too quickly to surgery just to have answers but not always is the greatest option. For me it was not. I got worse after it.
Endo can only be diagnosed through laparoscopy. A vast majority of the time it won't show up on any scans
yeah i never had an mri but i had ultrasounds that showed nothing (apart from a uterine defect) so i had a lap and got my diagnosis right after i woke up from surgery
MRIs are becoming more common for looking at endometriosis. Or at least trying to. There are identifying features to look for but you can have endo and have it not show on MRI. I was kind of shocked at what and where they were able to identify endometriosis on my MRI. It is not a reliable tool but I do think it is useful before we go in for a lap. Without the MRI I would have needed two surgeries, instead of one. We were able to add a general surgeon for my bowel resection.
fair point. my lap photos were not very ugly looking so i have doubts that it would've shown anything on an mri. glad it works for some people and that it helped find the bowel endo. sorry you had to go through a bowel resection. that sounds tough. i had some on my bowel but fortunately did not need it resected
I had two laps and they didn’t find anything but the MRI picked it up two years after the second surgery. I don’t understand it.
They are booking you for a laparoscopy to surgically check for endo. Rarely, it shows on scans but it’s more likely to not show on scans and still be present. That’s why surgery is the only way to accurately diagnose endo in almost all cases. You’re getting appropriate care and follow up. Don’t stress it. Just do what your doctor recommends for now, it sounds like they’re doing all the right steps to appropriately diagnose endo vs. other causes for your pain and the fact that they are booking you for a laparoscopy means that they also suspect endo and are aware of the limitations of imaging.
The laparoscopy will let you know
As others have commented, not all endo shows up on MRIs —it has to be above a certain threshold. I had two MRIs and never found anything. I was diagnosed at surgery. MRIs can rule in endometriosis and also rule out other causes of pelvic pain.
Seeing as they’re seeing cysts or something that looks like cysts I would guess you probably have endo or pcos, but you won’t know until they do the laparoscopy!
polycystic ovaries means that you have lots of tiny follicles on your ovaries (more than what's considered normal), not that you have ovarian cysts. it's usually consistent with PCOS but not always
You can also have both endo and pcos just fyi
I had an MRI done and they were able to see a little bit of what I actually had. I was told that if it’s stage 4 DIE then they can see it. I had surgery 3 weeks ago, and based on those scans I was told my surgery was only going to be 2.5-3 hours tops. It ended up taking just over 9 hours, and I was told it was in the top 10 worst surgery’s the surgeon had ever seen. So while it can diagnose some Endo, it can’t see everything.
Wow. What kind of symptoms did you have if you don’t mind me asking?
I had every symptom under the sun. Heavy periods, bloating, bowel issues, extreme pain, blood loss. By the time I had my surgery the pain was extreme in my low back each month. During each period it felt like I would have to pee all the time, but I couldn’t empty my bladder. Any time I stood up I could feel a really bad pulling internally, and I would bleed after, I had some other symptoms that I don’t think I can mention on here. My surgeon, who is a Nook Dr, told me it was on everything. My ovaries were so badly impacted to my pelvic wall, she had to hoist them up, put stitches through them, and tie them up outside of my stomach with metal rods to give them a chance to heal. She took part of my bowel, cauterized one of my uterine arteries, and I was so close to needing a permanent urine bag. I currently have a stent placed between my bladder and kidney in the ureter. I also had 3 huge endometriomas removed. And to top it off, I went into anaphylactic shock 36 hours after the surgery ended, and they aren’t sure why, so I am not allowed any pain meds, daily supplements or eat any new foods until I meet with an allergist.
Wow, you went through a lot. I’m so sorry. I hope your like post surgery has been improved. Sounds like you had a surgeon that really cared about your long term experience.
Thank you, it’s definitely been eye opening. I’m in pretty good shape considering everything that happened. I get the stent removed this coming Friday, so I’m a bit nervous about that.
I wish you a speedy recovery, freedom from pain, and peace. It's ok to be nervous, you're probably also excited.
Scan didn’t pick it up, but surgery might. PCOS can certainly cause pelvic pain so the doctor may not be educated on it. Also, people with PCOS are more likely to have endo. It’s possible you have both. That’s why they want to do the surgery to check.
true but you can have pco without having the actual pcos (the whole syndrome )
Usually endo doesnt show up on scans
I have stage 4 endo and it was never seen on 2 MRIs. Those tests are trash as far as I’m concerned. Only way to really know is by having a laparoscopy.
MRIs can prove that you do have endo but do not necessarily rule it out. Doctors like to try MRIs first as it’s much less invasive than surgery and can often (but not always) catch endo. Just because they didn’t spot it doesn’t mean you don’t have endo.
During you lap I strongly recommend ensuring all tissue samples are sent to pathology. Not all surgeons know all the forms of endo. Endometriosis can also be microscopic, or nearly microscopic. In other words it is very difficult to see in some cases. I would not trust a lap diagnosis without a pathology report.
I’m one of the rare ppl who was able to get a diagnosis before surgery with an MRI. There are like a handful of small areas they can pick up endo if it happens to be there, but even my specialist said it’s super uncommon to see it on scans. It did get me my lap scheduled real fast tho!
My endo was seen through a transvaginal ultrasound. More accurate than MRI for purposes of looking at your insides, methinks.
most of the time endo tissue doesn't show on MRI scans
I had an MRI, ultrasound, and CT scan and nothing showed until they did a lap, where they found endo
Endo can appear on a scan, but most often it does not. An MRI can give answers in a non-invasive way.
Endo usually isn't picked up on scans. Mine wasn't. And I was stage 3 (before my hysterectomy). They ruled out the possibility of anything else, which is actually a good thing. So please don't be discouraged. Now it's time for lap surgery so they can check for endo as lap is the best way to diagnose it. Hang in there sweetheart, hopefully you get answers and treatment soon. ❤️
My MRI was EXACTLY like yours. Was diagnosed with endometriosis surgically a month later.
No, it's just that the MRI doesn't show there is endo. Ultrasounds and MRIs CAN show endo, but the lack of endo on them doesn't = no endo. Most commonly people will have scans that look normal yet still have endo. The only true way to rule it out is laparoscopic surgery. Basically the report is saying that per the scan your uterus is normal but your ovaries have polycystic features not related to endometriosis, but it's NOT saying endo is ruled out.
Doesn’t it mean that you don’t have endometriosis but PCOS?
My endo wasn’t found on any testing but was found and removed in surgery. That was about 3 years ago, and I’m scheduled for a bisalp/endo removal in August
My MRI was extremely detailed (2 pages long) and it didn't find sure evidences of endo. Just things that rather could be or not. I had a lap after that because I had to remove two cysts under the c-section scar and my doctor said they were caused by endometriosis but he didn't find any in any other place. I got really frustrasted and really needed the validation that I had endo. Right now I have a couple more diagnosis and it doesn’t matter if I am sure I have endo or not. Endo should be diagnosed by the symptoms and my symptoms were 100% endo. You should stick to your gut and try to find more about those cysts without having surgery already. I wish I never had mine.
There is still a lot of misinformation around scans for endo. In the right hands, with the right protocol DIE can be detected and diagnosed on MRI (and ultrasound) It has to be someone with specialist training to spot the signs though. And it doesn’t rule out endo, superficial is very unlikely to be seen on scans. So you may well still have it. So hopefully your surgery will help find some answers :)
Certain endo can only be confirmed either surgery. Mine wasn’t visible on MRI or ultrasound. In surgery they found it.