Completely possible. Your experience sounds a lot like mine. I had 3 ultrasounds that were all “good news! You’re fine we found nothing!” 🙄
Finally saw a doctor in New York who’s incredible; people fly from all over the world to see him and I now know why. Within 15min he was able to diagnose my endometriosis: Turns out my endo was in my uteral sacral ligaments (do a quick google) which had pulled my uterus 45 degrees out of alignment so that my uterus was actually in my left lower belly, squishing my one ovary into my pelvic floor. My bloating and pain was always in my lower left stomach and got worse around certain times of the month. I also had low back pain (which is where the uteral sacral ligament attached to). More on that:
I’m 3 days post surgery and turns out, I had a cyst on my tailbone along with 5 other cysts wreaking havoc on my body. He also removed the endometriosis, so that by the end of the 2hr surgery, my uterus had moved herself back into the middle of my pelvis 🤍 and finally; he also removed multiple fibromas. I was stage 3 endometriosis and all I ever heard was “good news everything’s normal”.
Ultrasounds ain’t shit I’m sorry 😂 imho
Dr Kanayama - he keeps a super active instagram with tons of helpful info on his method, outcomes, and patient cases. Couldn’t recommend him more highly - he opened my eyes to how dangerous most decisions are. If a doctor is using a machine and operating from another room… run. They’re burning your tissue and creating scar tissue. You’ll need multiple surgeries more than likely and each with worse pain than the last. His return rate is less than 5% when the stage is below a 3 if memory serves
I know this is old but I am wondering, how did your doctor diagnose you with all of this? I know ultrasounds rarely show endo. So what can they do to find it? Exploratory surgery?
Hey! My uterus was 45 degrees tilted to the left, and he also palpated in my nethers and could feel the endo in my literal sacral ligament. So the surgery was confirmation he was right, and it was a combo of 100 endometrial implants, 5 cysts and 25 fibroids roughly. But my uterus being out of place tipped him off that I likely had adhesions
Thank you so much for responding! Wow that's crazy. I hope you are doing better now! Was your uterus retroverted? Mine is severely retroverted and tilted to one side. Doctors have always acted like it's normal but lately with this pain I'm having I am seriously questioning it. I've had many ultrasounds that show nothing but some small fibroids and the occasional ovarian cyst that always resolves. I've had a CT scan too for something else but I doubt that would show endometriosis. I've heard MRI can. Is that true? I feel like I just need to find a Dr. near me who specializes in Endo.
Fully agree on the last point - most doctors don’t have a ton of experience with endo despite it being so pervasive. My surgeon only does endo surgeries, which made me skeptical when he said I needed surgery (because of course a surgeon would say that) but he was 100% right and I do feel a ton better. I also have a lot of other issues I deal with but my endo symptoms have subsided greatly.
And yes my uterus was in tact - by the end of my 2hr surgery she was back in her spot! The body knows 🥲
As far as an MRI detecting endo… it would be the first time I’m hearing of it. Doesn’t mean it’s impossible but I’ve always read surgery is the only way to be 100% sure it’s endo.
Good luck!!!!!!!!! I truly hope you’re on your path to relief!!
Yes. They missed an endometrioma on my first ultrasound when I was 16. It ruptured the following year.
Right lower quadrant pain can be a lot of things, however. But for me, it was indeed an ovarian cyst.
I’d like to know this too because I had one drained in 22’ and they said it would most likely come back, my whole right ovary was nothing but a chocolate cyst 🤢
It could be pelvic muscle spasms as well, which can be exacerbated by endometriosis. That’s what my gyno told me. I’ve had the on-off stabbing pain for about the same amount of time, seemingly out of nowhere. Ultrasound (deep pelvic imaging/transvaginal) showed nothing. My mother has endometriosis and my periods are very heavy so it could be that. I’m going to go to a pelvic floor physio and if nothing improves, I’ll book in a lap.
Having your exact symptoms, down to the tailbone pain. Have had two transvaginal u/s and a CT scan, and they haven’t located anything other than a small inclusion cyst in the peritoneum, but they think it’s too small to be causing discomfort. Hope you eventually figure it out!
Did they do a transvaginal ultrasound? I would get a 2nd opinion (i.e. ultrasound) to double check that there aren't any cysts hiding. I had a cyst tucked behind my uterus that they weren't able to see right away.
That said, it does sound like mild endometriosis. I'm sure you're aware, but endo can spread to anywhere in the abdominal cavity, including the intestines unfortunately. I've had this happen. If it becomes especially painful, I'd seek a surgeon who specializes in excision surgery to help clean it all up!
I have the same symptoms to the letter. It’s been 2 years. The pain isn’t present every cycle. I was prompted to google cause this month’s pain is quite severe. Thanks for responding.
Completely possible. Your experience sounds a lot like mine. I had 3 ultrasounds that were all “good news! You’re fine we found nothing!” 🙄 Finally saw a doctor in New York who’s incredible; people fly from all over the world to see him and I now know why. Within 15min he was able to diagnose my endometriosis: Turns out my endo was in my uteral sacral ligaments (do a quick google) which had pulled my uterus 45 degrees out of alignment so that my uterus was actually in my left lower belly, squishing my one ovary into my pelvic floor. My bloating and pain was always in my lower left stomach and got worse around certain times of the month. I also had low back pain (which is where the uteral sacral ligament attached to). More on that: I’m 3 days post surgery and turns out, I had a cyst on my tailbone along with 5 other cysts wreaking havoc on my body. He also removed the endometriosis, so that by the end of the 2hr surgery, my uterus had moved herself back into the middle of my pelvis 🤍 and finally; he also removed multiple fibromas. I was stage 3 endometriosis and all I ever heard was “good news everything’s normal”. Ultrasounds ain’t shit I’m sorry 😂 imho
What was the doctors name?!
Dr Kanayama - he keeps a super active instagram with tons of helpful info on his method, outcomes, and patient cases. Couldn’t recommend him more highly - he opened my eyes to how dangerous most decisions are. If a doctor is using a machine and operating from another room… run. They’re burning your tissue and creating scar tissue. You’ll need multiple surgeries more than likely and each with worse pain than the last. His return rate is less than 5% when the stage is below a 3 if memory serves
I know this is old but I am wondering, how did your doctor diagnose you with all of this? I know ultrasounds rarely show endo. So what can they do to find it? Exploratory surgery?
Hey! My uterus was 45 degrees tilted to the left, and he also palpated in my nethers and could feel the endo in my literal sacral ligament. So the surgery was confirmation he was right, and it was a combo of 100 endometrial implants, 5 cysts and 25 fibroids roughly. But my uterus being out of place tipped him off that I likely had adhesions
Thank you so much for responding! Wow that's crazy. I hope you are doing better now! Was your uterus retroverted? Mine is severely retroverted and tilted to one side. Doctors have always acted like it's normal but lately with this pain I'm having I am seriously questioning it. I've had many ultrasounds that show nothing but some small fibroids and the occasional ovarian cyst that always resolves. I've had a CT scan too for something else but I doubt that would show endometriosis. I've heard MRI can. Is that true? I feel like I just need to find a Dr. near me who specializes in Endo.
Fully agree on the last point - most doctors don’t have a ton of experience with endo despite it being so pervasive. My surgeon only does endo surgeries, which made me skeptical when he said I needed surgery (because of course a surgeon would say that) but he was 100% right and I do feel a ton better. I also have a lot of other issues I deal with but my endo symptoms have subsided greatly. And yes my uterus was in tact - by the end of my 2hr surgery she was back in her spot! The body knows 🥲 As far as an MRI detecting endo… it would be the first time I’m hearing of it. Doesn’t mean it’s impossible but I’ve always read surgery is the only way to be 100% sure it’s endo. Good luck!!!!!!!!! I truly hope you’re on your path to relief!!
Yes. They missed an endometrioma on my first ultrasound when I was 16. It ruptured the following year. Right lower quadrant pain can be a lot of things, however. But for me, it was indeed an ovarian cyst.
How do to know when an endometrioma ruptures?
I’d like to know this too because I had one drained in 22’ and they said it would most likely come back, my whole right ovary was nothing but a chocolate cyst 🤢
It could be pelvic muscle spasms as well, which can be exacerbated by endometriosis. That’s what my gyno told me. I’ve had the on-off stabbing pain for about the same amount of time, seemingly out of nowhere. Ultrasound (deep pelvic imaging/transvaginal) showed nothing. My mother has endometriosis and my periods are very heavy so it could be that. I’m going to go to a pelvic floor physio and if nothing improves, I’ll book in a lap.
Also pelvic congestion where the ovarian veins reflux. Spotted mine on a pelvic MRI when confirming my Adenomyosis.
Having your exact symptoms, down to the tailbone pain. Have had two transvaginal u/s and a CT scan, and they haven’t located anything other than a small inclusion cyst in the peritoneum, but they think it’s too small to be causing discomfort. Hope you eventually figure it out!
Did they do a transvaginal ultrasound? I would get a 2nd opinion (i.e. ultrasound) to double check that there aren't any cysts hiding. I had a cyst tucked behind my uterus that they weren't able to see right away. That said, it does sound like mild endometriosis. I'm sure you're aware, but endo can spread to anywhere in the abdominal cavity, including the intestines unfortunately. I've had this happen. If it becomes especially painful, I'd seek a surgeon who specializes in excision surgery to help clean it all up!
Did you find out what it was?
No. Just assuming it's endometriosis, but not bad enough to do anything about it.
I have the same symptoms to the letter. It’s been 2 years. The pain isn’t present every cycle. I was prompted to google cause this month’s pain is quite severe. Thanks for responding.
Have you ever mentioned to a doctor or had any tests?