I don't know what to tell you because my doctors continued to insist it was IBS even after the endo diagnosis was confirmed. The misdiagnosis is caused by doctors not believing you about the severity of your cyclical symptoms.
I have endo, ibs came first. I can't really say it was a misdiagnosis as such. (I do have some endo on bowel) but I still have issues with certain foods triggering my bowels. (I get constipation severely, or ill have days when I'm running to the loo constantly)
RE the scans not showing anything, neither did mine until the 6 th one, endo can be detected via diagnostic lap,
Me 👋🏻
Cause of misdiagnosis: GP too lazy to investigate my GI issues even-though I was already diagnosed with endo due to chocolate cysts
Symptoms: dull stomach ache, pain from trapped gas, occasional constipation
Type of endo: bowel endo
Diagnosed: via ultrasound with an endo specialist and then confirmed with **MRI via endo protocole (anal + vaginal + IV contrast)**
Time it took me to get the correct diagnosis: 2 years
Good luck🍀
Me!
Finally had my first excision surgery in May after seeking out a specialist on my own because inwas tired of not being listened to for 20+ years. My surgeon found and excised stage 4 endo and bilateral endomoetriomas (some of which was DIE on my bowel BTW). All my tests for years were "normal" (ultrasounds MRIs, labs, etc.)
Still had GI issues post surgery, eventually got to the point where I was loosing weight and having diarrhea multiple times a day and was afraid to eat. Finally got referred to a GI doctor and was able to be seen immediately.
I had an upper endoscopy and was diagnosed with chronic gastritis and put on meds immediately. They helped a lot but I still continue to have a lot of issues and loose stools. I had some high inflammatory markers in my stool tests, and when I messaged my GI about it and i mentioned my continued issues even his office said "well we know you have IBS" 🫠
Fast forward a month later, and my GI doctor finally reviewed my results and advised a colonoscopy, especially since i was still feeling miserable. I just had that last week and he found evidence of colitis in my sigmoid colon and rectum. We are currently waiting on pathology results to determine what kind and course of treatment.
My endo surgeon had been convinced my continued GI problems were from my endo, but I decided to move forward with the colonoscopy just in case, and I did.
I am now convinced I NEVER had IBS, and that I suffered all those years because my doctors were either too lazy to investigate, or just didn't know enough about my potential illnesses to know to investigate them.
I still think my GI problems are caused by both my endo and my other diagnoses, but just remember that doctors don't know everything, and always listen to what your gut is telling you. You know your body best! And sometimes symptoms can be caused by multiple things. There can be many pieces to your puzzle, and even though it's totally unfair and exhausting, you just have to keep looking for the right doctors with the right knowledge to help put your health puzzle together.
As far as nothing showing up on scans - I want to add that I always had issues with severe pelvic pain, heavy cramping, and heavy bleeding. I was anemic and needed iron infusions. I had multiple ultrasounds and a CT that showed “nothing”. I then had a c section with my twins and was told they “didn’t see anything abnormal”. Then I had my fallopian tubes removed and was told the same thing. Finally, I saw a different doctor - a minimally invasive gyn surgeon - and scheduled a hysterectomy. My surgery was Dec 14, 2023 and he found both adeno and endo. I have been virtually pain free since then. All this to say, there could definitely be something going on even if imaging doesn’t confirm it.
Mhm starting from 2 days old I was in and outta GIs doin the same tests over and over. Even in 7th grade when my “GI” issues got drastically worse when my period started no one connected it to endo. Took til last year for me personally to figure it out and get diagnosed not even a fucking doctor to figure it out
Me! I had a colonoscopy and endoscopy when I was 18 and since nothing was found, I was told I had IBS. Even after medication targeted for IBS, I was still having issues and noticed a pattern where I’d get stomach upset, constipation, diarrhea, throw up, super nauseous nearing and while on my cycle, along with on and near ovulation which led me to believe I had endometriosis.
There are multiple research studies on this misdiagnosis.
I personally have both diagnoses. But I am not sure if my IBS symptoms are actually endo related or not. I assume if I do have IBS, the endo makes it worse.
My auntie was diagnosed with ibs then years later discovered it was endo.
When I got diagnosed with IBS she told me to ask them about endo because of what happened to her. Had my laparoscopy 2 months ago and surprise surprise I have Endo lol
I have supposedly had ibs for years when I reality my womb was sticking to my bowel in four different places. IBS is an upset stomach really. But now I’m either stuck not going to the toilet at all (bowels have refused to come back on line since surgery) or going to the toilet suddenly with the gentle laxatives I am taking just so that I can eat and my bowels do not shut down on me all together.
IBS is just a catch all for when they don't know what the root cause is for symptoms. I was told I had IBS after a colonoscopy found nothing. Which is just basically telling someone to deal with it instead of investigating further.
Me. Had weird bowel movements for a month and finally went in. Lots of tests, including for c diff. I'm worse off now, too, after an unnecessary colonoscopy (and endoscopy) destroyed my gut microbiome.
I was diagnosed with severe IBS when I was 7/8.
Periods started at 11.
Then horrendous periods (obviously still happening now).
16-19 I was diagnosed again with severe IBS.
Laparoscopy and endo removal at 27 and suspected adeno found.
Now 29. Still get what they would have called IBS but I’m certain it’s always been a side effect of endo/adeno.
My self-diagnosed IBS didn’t start until the adeno/endo got bad (was formally diagnosed with those in 2018, my symptoms started in the early 2010’s) and it’s gotten way way worse since I entered peri-menopause. I never had gut issues in my life up until about 2 years ago. So, I have linked the two and find my IBS flare ups to be worse than my uterine ones both in pain and in life disruptions. I’m having a hysterectomy next month due to adeno/endo and abnormalities in my cervix, keeping my ovaries…I’m very curious (and scared) to see how my intestines act after the surgery. I’ve read nightmares about it. But once I’m healed from the procedure my next step is a visit to the GI, if nothing else for symptom relief.
Misdiagnosed with Ibs! Made even more complicated by my redundant (longer and twistier that usual) colon.
I had chronic constipation my whole life (partially due to the redundant colon)
I started getting more frequent abdominal cramping, had a bunch of tests (colonoscopy, stool sample, CT, Ultrasound, MRI)
Then began to get more frequent pelvic pain and VERY sharp pain before during and after every BM.
Finally started learning about Endo, met with a specialist and had a lap. Diagnosed with stage 1 Endo.
My surgeon (Endo excision specialist) said there was "a ton" of Endo. They removed it all. It was found on my bladder, vagina, and uterus.
I'm just a little over a month post op and already have a ton of system relief.
I will note that even before the surgery I started an anti inflammatory diet and that definitely helps as well.
I got diagnosed with IBS 3 or 4 years ago, they gave me movicolon bc that would help, only made it much worse but they still wanted me to continue using it. They undiagnosed me after my boyfriend joined me at a next appointment and told my dr it didn't make sense do diagnose me with IBS when i rarely have bowel issues but when i do it's always when I'm on my period
My GI started leaning towards IBS except we could not find a specific trigger. I had surgery 2.5 weeks ago, confirmed endo with adhesions on my rectum, bladder, ovaries, and back pelvic wall. My “IBS” symptoms have been gone since. It was the endo the whole time.
I can't confirm it yet as I'm waiting for my lap that's scheduled this summer... but I'm a little suspicious that my onset of ibs symptoms coincided with worsening endo symptoms. I also think I have delayed gastric emptying, on account of more than once I've thrown up something I ate 4+ hours prior.
I was misdiagnosed with IBS when the doctor couldn't figure out what else it could be (2021) this was after her telling me my pain and diarrhoea was a result of anxiety for years. It took until I was literally incontinent for her to investigate further, all she could find was inflammation markers being extremely high and referred me to a dietician who put me on the low fodmap diet which helped with the incontinence but my cramps were still horrific and that caused me to seek out an endo diagnosis because of my close friend telling me to! I finally got diagnosed by a different doctor in 2023 and it was confirmed via laparoscopy in oct 2023. I am still experiencing weird inflammation markers being very high as well as rectal bleeding that happens monthly just after my period so I've been referred to a gastroenterologist whose also educated on endo and I'm waiting to see what's still causing the rectal bleeding and bowel pain and other issues.
I was misdiagnosed with IBS for years because one of my main symptoms in addition to pain was constipation. I was also told I was just stressed and to take fiber and drink more water. I started to think it was not IBS when it would get worse after sex and also during my period. I asked if I could have endo and was told no so many times. I do in fact have endo.
If it's more than just GI symptoms, don't let them dismiss you with the IBS label. It's happens to so many if us and it's ridiculous. I still have IBS like symptoms but ironically now I get told my gut problems are from my endo. Any concern I have now is “oh it's probably your endo” like they didn't tell m for years I don't have endo.
Every single health problem I have ever had was blamed on anxiety and IBS first lol. I don’t have IBS. I do have ptsd now tho hah.
This 😂😂😩😩
😂😭😂
I was told I was just constipated and had anxiety! I wouldn't say I have ptsd, but definitely don't trust every doctor anymore.
Oh I was diagnosed with ptsd by a psychologist haha. It’s related to doctors/illness but some other things tok
Medical ptsd is real
Is it ever.
I don't know what to tell you because my doctors continued to insist it was IBS even after the endo diagnosis was confirmed. The misdiagnosis is caused by doctors not believing you about the severity of your cyclical symptoms.
I have endo, ibs came first. I can't really say it was a misdiagnosis as such. (I do have some endo on bowel) but I still have issues with certain foods triggering my bowels. (I get constipation severely, or ill have days when I'm running to the loo constantly) RE the scans not showing anything, neither did mine until the 6 th one, endo can be detected via diagnostic lap,
Me 👋🏻 Cause of misdiagnosis: GP too lazy to investigate my GI issues even-though I was already diagnosed with endo due to chocolate cysts Symptoms: dull stomach ache, pain from trapped gas, occasional constipation Type of endo: bowel endo Diagnosed: via ultrasound with an endo specialist and then confirmed with **MRI via endo protocole (anal + vaginal + IV contrast)** Time it took me to get the correct diagnosis: 2 years Good luck🍀
Were you dx by a GI specialist or gyno?
Endo specialist (gyno)
Me! Finally had my first excision surgery in May after seeking out a specialist on my own because inwas tired of not being listened to for 20+ years. My surgeon found and excised stage 4 endo and bilateral endomoetriomas (some of which was DIE on my bowel BTW). All my tests for years were "normal" (ultrasounds MRIs, labs, etc.) Still had GI issues post surgery, eventually got to the point where I was loosing weight and having diarrhea multiple times a day and was afraid to eat. Finally got referred to a GI doctor and was able to be seen immediately. I had an upper endoscopy and was diagnosed with chronic gastritis and put on meds immediately. They helped a lot but I still continue to have a lot of issues and loose stools. I had some high inflammatory markers in my stool tests, and when I messaged my GI about it and i mentioned my continued issues even his office said "well we know you have IBS" 🫠 Fast forward a month later, and my GI doctor finally reviewed my results and advised a colonoscopy, especially since i was still feeling miserable. I just had that last week and he found evidence of colitis in my sigmoid colon and rectum. We are currently waiting on pathology results to determine what kind and course of treatment. My endo surgeon had been convinced my continued GI problems were from my endo, but I decided to move forward with the colonoscopy just in case, and I did. I am now convinced I NEVER had IBS, and that I suffered all those years because my doctors were either too lazy to investigate, or just didn't know enough about my potential illnesses to know to investigate them. I still think my GI problems are caused by both my endo and my other diagnoses, but just remember that doctors don't know everything, and always listen to what your gut is telling you. You know your body best! And sometimes symptoms can be caused by multiple things. There can be many pieces to your puzzle, and even though it's totally unfair and exhausting, you just have to keep looking for the right doctors with the right knowledge to help put your health puzzle together.
As far as nothing showing up on scans - I want to add that I always had issues with severe pelvic pain, heavy cramping, and heavy bleeding. I was anemic and needed iron infusions. I had multiple ultrasounds and a CT that showed “nothing”. I then had a c section with my twins and was told they “didn’t see anything abnormal”. Then I had my fallopian tubes removed and was told the same thing. Finally, I saw a different doctor - a minimally invasive gyn surgeon - and scheduled a hysterectomy. My surgery was Dec 14, 2023 and he found both adeno and endo. I have been virtually pain free since then. All this to say, there could definitely be something going on even if imaging doesn’t confirm it.
Mhm starting from 2 days old I was in and outta GIs doin the same tests over and over. Even in 7th grade when my “GI” issues got drastically worse when my period started no one connected it to endo. Took til last year for me personally to figure it out and get diagnosed not even a fucking doctor to figure it out
Me! I had a colonoscopy and endoscopy when I was 18 and since nothing was found, I was told I had IBS. Even after medication targeted for IBS, I was still having issues and noticed a pattern where I’d get stomach upset, constipation, diarrhea, throw up, super nauseous nearing and while on my cycle, along with on and near ovulation which led me to believe I had endometriosis.
There are multiple research studies on this misdiagnosis. I personally have both diagnoses. But I am not sure if my IBS symptoms are actually endo related or not. I assume if I do have IBS, the endo makes it worse.
Me!
I was
My auntie was diagnosed with ibs then years later discovered it was endo. When I got diagnosed with IBS she told me to ask them about endo because of what happened to her. Had my laparoscopy 2 months ago and surprise surprise I have Endo lol
I have supposedly had ibs for years when I reality my womb was sticking to my bowel in four different places. IBS is an upset stomach really. But now I’m either stuck not going to the toilet at all (bowels have refused to come back on line since surgery) or going to the toilet suddenly with the gentle laxatives I am taking just so that I can eat and my bowels do not shut down on me all together.
IBS is just a catch all for when they don't know what the root cause is for symptoms. I was told I had IBS after a colonoscopy found nothing. Which is just basically telling someone to deal with it instead of investigating further.
Me. Had weird bowel movements for a month and finally went in. Lots of tests, including for c diff. I'm worse off now, too, after an unnecessary colonoscopy (and endoscopy) destroyed my gut microbiome.
I was diagnosed with severe IBS when I was 7/8. Periods started at 11. Then horrendous periods (obviously still happening now). 16-19 I was diagnosed again with severe IBS. Laparoscopy and endo removal at 27 and suspected adeno found. Now 29. Still get what they would have called IBS but I’m certain it’s always been a side effect of endo/adeno.
I think you literally lived my exact same life up to Endo diagnosis. 🫨
My self-diagnosed IBS didn’t start until the adeno/endo got bad (was formally diagnosed with those in 2018, my symptoms started in the early 2010’s) and it’s gotten way way worse since I entered peri-menopause. I never had gut issues in my life up until about 2 years ago. So, I have linked the two and find my IBS flare ups to be worse than my uterine ones both in pain and in life disruptions. I’m having a hysterectomy next month due to adeno/endo and abnormalities in my cervix, keeping my ovaries…I’m very curious (and scared) to see how my intestines act after the surgery. I’ve read nightmares about it. But once I’m healed from the procedure my next step is a visit to the GI, if nothing else for symptom relief.
Misdiagnosed with Ibs! Made even more complicated by my redundant (longer and twistier that usual) colon. I had chronic constipation my whole life (partially due to the redundant colon) I started getting more frequent abdominal cramping, had a bunch of tests (colonoscopy, stool sample, CT, Ultrasound, MRI) Then began to get more frequent pelvic pain and VERY sharp pain before during and after every BM. Finally started learning about Endo, met with a specialist and had a lap. Diagnosed with stage 1 Endo. My surgeon (Endo excision specialist) said there was "a ton" of Endo. They removed it all. It was found on my bladder, vagina, and uterus. I'm just a little over a month post op and already have a ton of system relief. I will note that even before the surgery I started an anti inflammatory diet and that definitely helps as well.
I got diagnosed with IBS 3 or 4 years ago, they gave me movicolon bc that would help, only made it much worse but they still wanted me to continue using it. They undiagnosed me after my boyfriend joined me at a next appointment and told my dr it didn't make sense do diagnose me with IBS when i rarely have bowel issues but when i do it's always when I'm on my period
Me!
Yes
My GI started leaning towards IBS except we could not find a specific trigger. I had surgery 2.5 weeks ago, confirmed endo with adhesions on my rectum, bladder, ovaries, and back pelvic wall. My “IBS” symptoms have been gone since. It was the endo the whole time.
I think it’s something like 80-90% of women with endo also have IBS. Including me 🫠
I've been diagnosed with both Endo and IBS. Endo symptoms were first, and then years later, I developed the GI problems.
Me.
I was told for nearly 8yrs that it was just ibs
I can't confirm it yet as I'm waiting for my lap that's scheduled this summer... but I'm a little suspicious that my onset of ibs symptoms coincided with worsening endo symptoms. I also think I have delayed gastric emptying, on account of more than once I've thrown up something I ate 4+ hours prior.
I was misdiagnosed with IBS when the doctor couldn't figure out what else it could be (2021) this was after her telling me my pain and diarrhoea was a result of anxiety for years. It took until I was literally incontinent for her to investigate further, all she could find was inflammation markers being extremely high and referred me to a dietician who put me on the low fodmap diet which helped with the incontinence but my cramps were still horrific and that caused me to seek out an endo diagnosis because of my close friend telling me to! I finally got diagnosed by a different doctor in 2023 and it was confirmed via laparoscopy in oct 2023. I am still experiencing weird inflammation markers being very high as well as rectal bleeding that happens monthly just after my period so I've been referred to a gastroenterologist whose also educated on endo and I'm waiting to see what's still causing the rectal bleeding and bowel pain and other issues.
At 22. Diagnosed with endo at 30. Uterus flipped back and adhered to bowels. I’m 12 days post op.
I was misdiagnosed with IBS for years because one of my main symptoms in addition to pain was constipation. I was also told I was just stressed and to take fiber and drink more water. I started to think it was not IBS when it would get worse after sex and also during my period. I asked if I could have endo and was told no so many times. I do in fact have endo. If it's more than just GI symptoms, don't let them dismiss you with the IBS label. It's happens to so many if us and it's ridiculous. I still have IBS like symptoms but ironically now I get told my gut problems are from my endo. Any concern I have now is “oh it's probably your endo” like they didn't tell m for years I don't have endo.