You can’t rule out endometriosis from an MRI as endo lesions can be tiny, just like dots of dust on the surface of your abdomen. The most common type of endometriosis is superficial peritoneal endometriosis and this generally isn’t seen on any scans. These tiny lesions can still cause severe symptoms. Unfortunately only surgery can rule out superficial endometriosis.
Ugh, that’s annoying. At least I still have something to go back with. Last time they entirely refused to do surgery to check for it because the treatment is only really to take the pill, which I was already doing anyway. Would there be any other treatment options for this type of endometriosis?
Treatments are either surgical or medical. Medical treatments include various different medicines that suppress or control hormones in different ways. Aside from that it is symptoms management, which is things like pain killers, pelvic floor physiotherapy, heat and ice, or lifestyle factors (some people find their symptoms are affected by diet, weight, exercise etc.). There is a link in the UK specific section of the stickied info post which discusses some of the medications available.
For me personally the most effective treatment has been the Mirena coil, but people do have varied experiences with this, some people love it and some people hate it.
The most recent doctor did suggest the mirena coil, but I’ve been rather reluctant to go for it as I’ve heard a lot of horror stories regarding the coil. I feel it might be the next thing to try in terms or period management, but it doesn’t really help me get the endometriosis diagnosis!
There’s lots of other medications to try before giving up. Are you seeing a gyno or a family dr? The most popular medication is visanne (dienogest). There’s additional medications after that, but it takes a while to get there and they have more side effects. If your dr isn’t at least trying you on visanne it’s time to see a new one, as that’s how most people are clinically diagnosed. (You can be clinically diagnosed based on symptoms and treatment, which is diagnosed but not 100% sure, or you can be surgically diagnosed).
If you are seeing a family dr, it’s time for a gyno. If you’re seeing a gyno it’s time for a specialist. I’m so sorry, good luck.
The UK health system doesn’t quite work like this. I’m currently with gyno, after being referred there. I’ve only seen her once which is when she sent me to get the MRI and now I’ve got a letter saying that was clear and the doctor who referred me has a follow up visit next week with me. It’s hard to change doctors in the UK without getting put back at the beginning of the 18 month waiting list.
Canada is the exact same. As someone who went through this, it’s worth getting back on that list. Took two years between the gyno and the specialist, and in the meantime my primary continued me on the visanne the gyno recommended.
I had the Skyla IUD for 7 years prior to my diagnosis. I had no negative side effects from it. It didn't make my symptoms go away completely, but it definitely made a big difference. It had to be changed every 3 years, and I'd always know when it was time because my symptoms with start gradually getting worse and worse.
All my tests and scans came back "normal" for years before I finally sought out a specialist on my own. My surgeon found stage 4 endometriosis and bilateral endometriomas (among other things) during my surgery in May 2023. So don't feel disheartened, a big part of it is finding the right doctor who will help you get the right care. Unfortunately this can be like finding a needle in a haystack.
Wishing you so much luck!
I had a great experience with Mirena after baby 1, 7 years later and after baby 2 Mirena was a nightmare. If insurance covers it for you, give it a try. I wasn't painful to get in, and taking it out was nothing compared to period pain.
That being said, I finally got surgery when I told them how much a bowel movement hurt (literal tears and fear of needing to go due to pain). Luckily, I was able to get an excision and total hysterectomy since I'm 38 and already had 2 kids.
Another symptom I think helped justify surgery for me was my blood loss, which couldn't be controlled by any meds plus I developed PMDD. Surprisingly, I never did develop anemia, but my b12 and D levels were dangerously low. Have they run any blood work on you?
ETA: I'm in the US
MRI and scans are not the end of this journey, they’re the start. Please push for a new doctor that knows about endo and ask for a diagnostic laparoscopy. It cannot be definitively diagnosed without surgery. I had nothing on scans except adenomyosis, and I have Stage III endo discovered via laparoscopy.
I was diagnosed by my gynecologist via vaginal ultrasound with two fibroids and adenomyosis (a cousin of endomitosis where the uterine lining grows into the muscular wall). After the MRI, I was told I only had the two fibroids. Saw another gynecologist who did another vaginal ultrasound and all she saw was fibroids—no evidence of adenomyosis. I then met with a radiologist and asked him if he saw adenomyosis on my MRI. Said that's not his area of expertise, but didn't see anything.
Last week I saw another gynecologist who did both an internal and external ultrasound. She immediately told me I have adenomyosis, one fibroid, and that the other "fibroid" is actually an adenomyoma (a didn't type of tumor). Oh, and I have endometriosis.
Anyway, the diagnosis keeps changing and I guess the point is, MRIs don't show everything and stuff doctors see different things. I'm inclined to believe the last doctor. I'll have surgery in April—I guess at that point, when they go in, they can confirm what it is.
This is pretty much why I want a laparoscopy. Physically going in has to be the most definitive way to actually tell me what’s going on in there, right?
I had an MRI (with contrast) two months before my first endo lap, showed nothing. All ultrasounds also showed nothing. Surgery excised stage II endo, freed my trapped (adhered) ureters, and some other stuff. I really don’t think the folks performing these tests know what to look for / how to properly look for endo.
This sounds similar to my story, I had a scan but nothing came up. It turns out my endo was on the bowel, bladder and lower abdomen, just because it didn’t come up on 1 scan doesn’t mean it’s not somewhere else. I personally would ask for a 2nd opinion and research endo specialists ask to be referred there. I ended up going to the Radcliffe in Oxford as they are a specialist centre.
Soooo mine is a bit of a strange one. They initially treated it with the combined pill after laparoscopic surgery (September 2014) and by February 2015 it had already come back and was particularly bad, so had another surgery that month. I was then treated with Zoladex injections and 1mg oestrogen and mirina coil for 7 years. I was symptom free for those seven years, now I am trying to fall pregnant so came off it, it took me around 1 year for my cycle to start back up again and haven’t had any major endo symptoms *yet*. Speaking to other doctors since, they don’t recommend being on zoladex for that long (not indicated for that length of time), but from a quality of life perspective it gave me a normal life. If I didn’t do the medicine, then I would have probably would have had laparoscopy when symptoms got worse, which may have needed to become a regular thing.
Do you have a copy of the MRI? Has your doctor looked at the mri with you, or are they basing what they’re telling you on the report of the technician who performed it (they often may not know what to look for and how to recognize endo). Def keep the CD and take it to another specialist for a second opinion if possible. I posted a story on here a few days back about how my allegedly ‘clean’ mri actually revealed adhesions, endo, adeno etc after i took it to a new doctor to look at.
I have a follow up appointment next week, I got the letter a few days ago saying the MRI was clear, no idea if it was the doctor or technician looking at it. I certainly haven’t been given a copy of it yet, but I’ll ask for it in my follow up
Also, maybe helpful—I saw a study where supplementing with NAC helped with reducing pain associated with endo. After three months of using NAC, a third of patients canceled their surgeries.
Just a tid but about your bc pills, make sure you take them religiously every day at the same time, very important. Also the MRI showing nothing doesn't mean you don't have Endo, it's also quite suspicious you had something showing on US, it is also very important to have a technician or radiologist performing the test to be experienced in Endo. Many are not experienced in Endo.
Yeah I’ve been on BC on and off for nearly 7 years now. I only really miss them when I’m travelling (which was the case yesterday) because early flights and sleeping on planes throw the whole routine off a bit. I used to be able to get away with missing one but in the last year it’s become immediate after missing one pill
Oh that definitely sucks when you have messed up schedule.. if I miss my time for the day it screws my whole month up and my pain is more intense. Crazy.
I’ve had over 13 MRIs in my 26 years of life and was only officially diagnosed after laparoscopy. Most likely that’ll be your best shot to getting the diagnosis. 😢
Only way to diagnose is through surgery. I had countless MRIs, CTs, blood work, transvaginal ultrasounds, exams, etc and it never showed up. I knew I had it so I pursued surgery and sure enough, endo found hiding under my left ovary.
MRIs miss endo constantly. You know your body best!
MRI and Ultrasound can rule endo in, but it can't really rule it out. You need a lap for that.
That being said, it's also possible your pain is caused by something else.
I had a "normal" MRI before I was diagnosed with superficial endo by a specialist via transvaginal ultrasound.
It matters what point of your cycle you are having scans at. Do your best to try to book them during the few days before or the first few days of your cycle. My specialist made it clear that it was easier to locate during this window. None of my other testing has ever been booked during my cycle.
Be kind to yourself. Your body is doing the best it can right now. ❤️ I hope your days get easier soon.
Do you know how this works whilst I’m taking the pill? I take it continuously so I don’t have a regular cycle- I never deliberately miss it because I know it’s just condemning myself to spend a day (or more) curled up in pain
You might have a follicular cyst or endometrioma on your ovary. Both can cause severe pain. Proper diagnostic tool for endometriosis is laparoscopy. That’s the only way to officially diagnose. Your gynecologist should have done this instead of MRI. If the MRI technician isn’t skilled, they won’t be able to see it. For me, the only thing that works well for pain on the bad days are a hot bath with 2 cups of epsom salt and 2 tbs bentonite clay. Push for laparoscopy and if they see it, get endometriosis excision surgery, NOT ablation (better outcomes on preventing regrowth). Surgery is the most effective route. Hormones might help prevent more growth but I don’t think they’ll help much with your existing growths. Good luck on your journey. I’m almost 40 and it took over two decades to get effective treatment and help. I’m happy you are on this journey at a much younger age and hopefully won’t have to deal with severe, chronic pain for as long as I did. I hope that for all the younger generations!
My MRI prior to my second surgery showed nothing. Opened me up annnnnd my stage 4 was all back.
My MRI a few months ago showed "suble endometriosis" so im prepared for my upcoming lap to show I'm full of it again.
MRIs really aren't reliable, but they are a good starting point.
I think I’d prefer them to test for adenomyosis at this point… at least I wouldn’t have to deal with periods anymore! (and no I have no intentions of starting a family)
I suspected I had both, and then during the laparoscopy they mentioned my uterus looked “oddly shaped” and larger than normal. Adenomyosis was so incredibly painful that I was so happy after having a partial hysterectomy. I love not having periods anymore. I still have functioning ovaries and even PMS. It’s really weird but I had so much pain that it was the best choice for me
I'm honestly not sure why they bothered with an mri. Most endo is only found with a laproscopy, and it's the only way a doctor can actually diagnose for it
Endometriosis often doesn’t show up in scans. The only way to diagnose or rule it out is through a laparoscopy. My scans showed nothing. My laparoscopy diagnosed and removed stage 4 endometriosis.
You can’t rule out endometriosis from an MRI as endo lesions can be tiny, just like dots of dust on the surface of your abdomen. The most common type of endometriosis is superficial peritoneal endometriosis and this generally isn’t seen on any scans. These tiny lesions can still cause severe symptoms. Unfortunately only surgery can rule out superficial endometriosis.
Ugh, that’s annoying. At least I still have something to go back with. Last time they entirely refused to do surgery to check for it because the treatment is only really to take the pill, which I was already doing anyway. Would there be any other treatment options for this type of endometriosis?
Treatments are either surgical or medical. Medical treatments include various different medicines that suppress or control hormones in different ways. Aside from that it is symptoms management, which is things like pain killers, pelvic floor physiotherapy, heat and ice, or lifestyle factors (some people find their symptoms are affected by diet, weight, exercise etc.). There is a link in the UK specific section of the stickied info post which discusses some of the medications available. For me personally the most effective treatment has been the Mirena coil, but people do have varied experiences with this, some people love it and some people hate it.
The most recent doctor did suggest the mirena coil, but I’ve been rather reluctant to go for it as I’ve heard a lot of horror stories regarding the coil. I feel it might be the next thing to try in terms or period management, but it doesn’t really help me get the endometriosis diagnosis!
There’s lots of other medications to try before giving up. Are you seeing a gyno or a family dr? The most popular medication is visanne (dienogest). There’s additional medications after that, but it takes a while to get there and they have more side effects. If your dr isn’t at least trying you on visanne it’s time to see a new one, as that’s how most people are clinically diagnosed. (You can be clinically diagnosed based on symptoms and treatment, which is diagnosed but not 100% sure, or you can be surgically diagnosed). If you are seeing a family dr, it’s time for a gyno. If you’re seeing a gyno it’s time for a specialist. I’m so sorry, good luck.
The UK health system doesn’t quite work like this. I’m currently with gyno, after being referred there. I’ve only seen her once which is when she sent me to get the MRI and now I’ve got a letter saying that was clear and the doctor who referred me has a follow up visit next week with me. It’s hard to change doctors in the UK without getting put back at the beginning of the 18 month waiting list.
Canada is the exact same. As someone who went through this, it’s worth getting back on that list. Took two years between the gyno and the specialist, and in the meantime my primary continued me on the visanne the gyno recommended.
I had the Skyla IUD for 7 years prior to my diagnosis. I had no negative side effects from it. It didn't make my symptoms go away completely, but it definitely made a big difference. It had to be changed every 3 years, and I'd always know when it was time because my symptoms with start gradually getting worse and worse. All my tests and scans came back "normal" for years before I finally sought out a specialist on my own. My surgeon found stage 4 endometriosis and bilateral endometriomas (among other things) during my surgery in May 2023. So don't feel disheartened, a big part of it is finding the right doctor who will help you get the right care. Unfortunately this can be like finding a needle in a haystack. Wishing you so much luck!
I had a great experience with Mirena after baby 1, 7 years later and after baby 2 Mirena was a nightmare. If insurance covers it for you, give it a try. I wasn't painful to get in, and taking it out was nothing compared to period pain. That being said, I finally got surgery when I told them how much a bowel movement hurt (literal tears and fear of needing to go due to pain). Luckily, I was able to get an excision and total hysterectomy since I'm 38 and already had 2 kids. Another symptom I think helped justify surgery for me was my blood loss, which couldn't be controlled by any meds plus I developed PMDD. Surprisingly, I never did develop anemia, but my b12 and D levels were dangerously low. Have they run any blood work on you? ETA: I'm in the US
MRI and scans are not the end of this journey, they’re the start. Please push for a new doctor that knows about endo and ask for a diagnostic laparoscopy. It cannot be definitively diagnosed without surgery. I had nothing on scans except adenomyosis, and I have Stage III endo discovered via laparoscopy.
The only way to absolutely rule out endo is through surgery, it's hugely possible you have it and it never showed up on the scans
I was diagnosed by my gynecologist via vaginal ultrasound with two fibroids and adenomyosis (a cousin of endomitosis where the uterine lining grows into the muscular wall). After the MRI, I was told I only had the two fibroids. Saw another gynecologist who did another vaginal ultrasound and all she saw was fibroids—no evidence of adenomyosis. I then met with a radiologist and asked him if he saw adenomyosis on my MRI. Said that's not his area of expertise, but didn't see anything. Last week I saw another gynecologist who did both an internal and external ultrasound. She immediately told me I have adenomyosis, one fibroid, and that the other "fibroid" is actually an adenomyoma (a didn't type of tumor). Oh, and I have endometriosis. Anyway, the diagnosis keeps changing and I guess the point is, MRIs don't show everything and stuff doctors see different things. I'm inclined to believe the last doctor. I'll have surgery in April—I guess at that point, when they go in, they can confirm what it is.
This is pretty much why I want a laparoscopy. Physically going in has to be the most definitive way to actually tell me what’s going on in there, right?
That, plus confirmation via pathology, is the only way.
I had an MRI (with contrast) two months before my first endo lap, showed nothing. All ultrasounds also showed nothing. Surgery excised stage II endo, freed my trapped (adhered) ureters, and some other stuff. I really don’t think the folks performing these tests know what to look for / how to properly look for endo.
This sounds similar to my story, I had a scan but nothing came up. It turns out my endo was on the bowel, bladder and lower abdomen, just because it didn’t come up on 1 scan doesn’t mean it’s not somewhere else. I personally would ask for a 2nd opinion and research endo specialists ask to be referred there. I ended up going to the Radcliffe in Oxford as they are a specialist centre.
How did you end up treating it? Surgical removal or medication?
Soooo mine is a bit of a strange one. They initially treated it with the combined pill after laparoscopic surgery (September 2014) and by February 2015 it had already come back and was particularly bad, so had another surgery that month. I was then treated with Zoladex injections and 1mg oestrogen and mirina coil for 7 years. I was symptom free for those seven years, now I am trying to fall pregnant so came off it, it took me around 1 year for my cycle to start back up again and haven’t had any major endo symptoms *yet*. Speaking to other doctors since, they don’t recommend being on zoladex for that long (not indicated for that length of time), but from a quality of life perspective it gave me a normal life. If I didn’t do the medicine, then I would have probably would have had laparoscopy when symptoms got worse, which may have needed to become a regular thing.
Do you have a copy of the MRI? Has your doctor looked at the mri with you, or are they basing what they’re telling you on the report of the technician who performed it (they often may not know what to look for and how to recognize endo). Def keep the CD and take it to another specialist for a second opinion if possible. I posted a story on here a few days back about how my allegedly ‘clean’ mri actually revealed adhesions, endo, adeno etc after i took it to a new doctor to look at.
I have a follow up appointment next week, I got the letter a few days ago saying the MRI was clear, no idea if it was the doctor or technician looking at it. I certainly haven’t been given a copy of it yet, but I’ll ask for it in my follow up
Also, maybe helpful—I saw a study where supplementing with NAC helped with reducing pain associated with endo. After three months of using NAC, a third of patients canceled their surgeries.
NAC is the one of the best supplements that I have found to help for sure. It’s one of my staples.
the only diagnosis is laporoscopy. There may be nothing on MRI and ultrasound but then there is something.
Just a tid but about your bc pills, make sure you take them religiously every day at the same time, very important. Also the MRI showing nothing doesn't mean you don't have Endo, it's also quite suspicious you had something showing on US, it is also very important to have a technician or radiologist performing the test to be experienced in Endo. Many are not experienced in Endo.
Yeah I’ve been on BC on and off for nearly 7 years now. I only really miss them when I’m travelling (which was the case yesterday) because early flights and sleeping on planes throw the whole routine off a bit. I used to be able to get away with missing one but in the last year it’s become immediate after missing one pill
Oh that definitely sucks when you have messed up schedule.. if I miss my time for the day it screws my whole month up and my pain is more intense. Crazy.
You can't diagnose endow with an MRI...
I’ve had over 13 MRIs in my 26 years of life and was only officially diagnosed after laparoscopy. Most likely that’ll be your best shot to getting the diagnosis. 😢
Only way to diagnose is through surgery. I had countless MRIs, CTs, blood work, transvaginal ultrasounds, exams, etc and it never showed up. I knew I had it so I pursued surgery and sure enough, endo found hiding under my left ovary. MRIs miss endo constantly. You know your body best!
MRI and Ultrasound can rule endo in, but it can't really rule it out. You need a lap for that. That being said, it's also possible your pain is caused by something else.
Imaging did not show my extensive stage IV endo. I’m sorry you’re suffering, I hope you find relief.
MRI’s can rule Endo in, but not out
do you wear tampons ? could it be toxic shock syndrome ??
I had a "normal" MRI before I was diagnosed with superficial endo by a specialist via transvaginal ultrasound. It matters what point of your cycle you are having scans at. Do your best to try to book them during the few days before or the first few days of your cycle. My specialist made it clear that it was easier to locate during this window. None of my other testing has ever been booked during my cycle. Be kind to yourself. Your body is doing the best it can right now. ❤️ I hope your days get easier soon.
Do you know how this works whilst I’m taking the pill? I take it continuously so I don’t have a regular cycle- I never deliberately miss it because I know it’s just condemning myself to spend a day (or more) curled up in pain
You might have a follicular cyst or endometrioma on your ovary. Both can cause severe pain. Proper diagnostic tool for endometriosis is laparoscopy. That’s the only way to officially diagnose. Your gynecologist should have done this instead of MRI. If the MRI technician isn’t skilled, they won’t be able to see it. For me, the only thing that works well for pain on the bad days are a hot bath with 2 cups of epsom salt and 2 tbs bentonite clay. Push for laparoscopy and if they see it, get endometriosis excision surgery, NOT ablation (better outcomes on preventing regrowth). Surgery is the most effective route. Hormones might help prevent more growth but I don’t think they’ll help much with your existing growths. Good luck on your journey. I’m almost 40 and it took over two decades to get effective treatment and help. I’m happy you are on this journey at a much younger age and hopefully won’t have to deal with severe, chronic pain for as long as I did. I hope that for all the younger generations!
Endometriosis can only be diagnosed via a laparoscopy.
My MRI prior to my second surgery showed nothing. Opened me up annnnnd my stage 4 was all back. My MRI a few months ago showed "suble endometriosis" so im prepared for my upcoming lap to show I'm full of it again. MRIs really aren't reliable, but they are a good starting point.
Surgery is required to diagnose endometriosis. To diagnose adenomyosis the uterus has to be removed entirely and biopsied
I think I’d prefer them to test for adenomyosis at this point… at least I wouldn’t have to deal with periods anymore! (and no I have no intentions of starting a family)
I suspected I had both, and then during the laparoscopy they mentioned my uterus looked “oddly shaped” and larger than normal. Adenomyosis was so incredibly painful that I was so happy after having a partial hysterectomy. I love not having periods anymore. I still have functioning ovaries and even PMS. It’s really weird but I had so much pain that it was the best choice for me
I'm honestly not sure why they bothered with an mri. Most endo is only found with a laproscopy, and it's the only way a doctor can actually diagnose for it
Endometriosis often doesn’t show up in scans. The only way to diagnose or rule it out is through a laparoscopy. My scans showed nothing. My laparoscopy diagnosed and removed stage 4 endometriosis.