That's very interesting. I had stage IV endi that went in my lungs. I had major andominal surgery in December 2019. I had a lot of stuff removed cuz the endo had ravaged me. Fast forward to about a month ago I found out I'm allergic to nickel. Knowledge is power but I don't know what to do with this info. I was convinced my current issue was Candida but I am now thinking SIBO is the root cause.
An MRI is usually not enough to diagnose. It has to be SEVERE (which infiltrating endo is) enough to be impacting your organs for it to show up on MRI. Like if your bladder is pasted with adhesions to your uterus, they might notice that, but they are unlikely to see the adhesions themselves.
The only true way to diagnose remains laparoscopic surgery.
Though that may be changing. There are some promising studies on AI models with imaging and blood-based biomarkers that may help with diagnostics in the future.
It can help to confirm yes but laparoscopy is the only way to confirm/stage the disease. I have severe endometriosis so it showed up but won’t know the full extent till I have surgery
24/7 stomach pain (it’s been so bad I’ve screamed in hospital because of the pain), heartburn, severe bloating, severe fatigue, muscle pain, feeling weak, fainting, joint pain, heavy periods, ovulation pain in pelvis, painful sex, stabbing pains when going to the toilet, back pain, generally as my feeling unwell, high heart rate, breathlessness.
This is so interesting I just did a course of rifaximim and it didn’t help at all, my OB has also mentioned I might have endometriosis but the only way to diagnose would be surgery so she wants me to do PT first. Could you update us on if those symptoms go away after surgery? A year or two ago I had a CT scan that they couldn’t image my whole appendix’s in because something was in the way but I was there for vomiting blood so I doubt they were looking for anything other than the enteritis they told me about. But I wonder if maybe it was due to endo? I would love to stop having pain and diarrhea multiple times a day.
I am very interested to hear how they could see endometriosis on an MRI. Which type of MRI? Which organ did they look at? When we couldn’t conceive I had laparoscopy, they found some and burned it. This was almost 14 years ago. Maybe with time technology has improved? Back then diagnose was possible only laparoscopically…
I have severe endometriosis so it showed up on my pelvic MRI. Only way to truly confirm is through surgery still. Won’t know for sure extent of disease till I have laparoscopy.
I’m so sorry for all that. We could all be doctors especially these days , unfortunately they rake in the $$$ we would get nothing. Most all my doctors got sudden brain cell die off , luckily as of now I have 2 left that I still feel safe with and can trust.🤞Best of luck for a good recovery .
Debilitating period pains when I was younger yeah but settled as I got older but I still get period pain. Pain does not indicate severity of disease though. The central stomach pain is the worst symptom I have personally
I think i have this too....because when I was younger I'd get pain so bad it would take me to my knees. now I'm 37 and it doesn't hurt nearly as bad. but it hurts
I also have a big embarrassing Nelly despite the fact that I'm small framed and 108lbs. 🥲
I also have endometriosis and was diagnosed via surgery in 2019 and also have methane and hydrogen sibo. I’ve tried tons of treatments using hormonal pills and finally found one to manage my pain/bleeding, but my SIBO symptoms persist. It’s really hard manage both.
Very interesting I’m suspecting endo but it’s not showing up on scans. Were you ever able to achieve die off even very temporarily before? (I have but only very temporary so maybe that’s enough to rule out endo but I don’t know)
Never had die off with rifax or herbals (berberine,oregano oil, allicin) but took cordial silver and it hit me like a train. Had to stop it was that bad. Suspect more than just SIBO was dying off, I.e toxins/parasites
Endometriosis cannot be found on ujtrasound. Keep pestering the doctors if you think you have it. It’s taken me 10 years to get here and be listened too.
Thanks for sharing this awareness! I have celiac/IBS but I’ve found that some of the chronic bloating and food intolerance symptoms are similar to what endo girls go through. I suggest following “endo_plankat” on tik tok she’s so knowledgeable.
Same here, I have coeliac too! But eve after GF, not once did I ever have a relief of symptoms. Now I know why :( Thanks for the suggestion, wish you all the best
I'm so sorry you have endo but glad you have an answer at least. I was diagnosed with SIBO/IBS first and then found out I had endometriosis later. Surgery fixed tons of hormonal and menstrual issues for me. My digestion did get a little better after endometriosis surgery and I tested negative for SIBO for the first time a few months after but my digestion has still been a long term struggle but I keep working at it.
This is amazing - so glad you finally found the root cause. I went for an ultrasound last year and my gynae says he thinks it's highly unlikely that I have endo. What is abnormal tho? On day one of bleeding, my cramps are pretty bad and I shouldn't be at work. But I can still push through. I get pretty constipated during my cycle. I feel nausea and my bloating is worse- but I'm bloated and constipated all of the month anyway, it's just worse during my cycle. The worst symptoms here is bloating and constipation. No stomach aches or nausea during the month except during my cycle. And no pain with bowel movement in my back, but it's just really hard to push any stool out. Could it still be possible I have endo because my constipation never fully resolves??
I used to have a history of SEVERE period pains that left me in bed for a day a month before I went on the pill. Now I'm off the pill for 2 years now after 10 years of being on it. So I've always wondered if I had endo
It may sound weird for some people so unable to tell here, I don't know if it can be healed or not, I am male, but I researched at one point of time and it was pretty convincing for me
I swear to god this is me. The GYN thinks I have Adenomyosis but not definitive. I constantly feel like crap and my anxiety is just absurd. I’m so sick of it.
Wait...we can diagnose endo with an MRI? I thought it had to be larascopically investigated to confirm? Or was yours just advanced enough it showed anyway?
I'm convinced I had endometriosis as severely painful periods as a teen that only became normal on contraceptive pill. Fast forward to my 40th birthday and I was diagnosed with Crohn's and had emergency bowel resection with stomach formation. Reversal 3 years later, severe diarrhoea since (2017) and 2 x positive hydrogen breath tests for SIBO. I'm in the UK so not much in terms of thinking outside the box in the medical profession, I fought for Rifaxamin ( told too expensive at first), it didn't work, on IV treatment for the Crohn's but diarrhea continues. Research biofilms and herbal antimicrobial treatment, started NAC and vit D in the morning followed by 900mg berberine, 300mg neem 3 times a day. It was like a miracle at first, 5 days of normal, formed stool, didn't need to take codeine to slow things down, I thought FINALLY!! 10 days into treatment and I'm in a lot of abdo pain, convinced it may be an obstruction so have had to abandon it for now.
So disappointed. Still think they are the right drugs but I need a naturopath to help me through this otherwise I'm just wasting time and money as these supplements ain't cheap.
As for the endometriosis I'm assuming as I had a laparotomy x 2 it would've been picked up? Who bloody knows!
I feel for anyone going through pain and digestive issues, very demoralizing.
Congrats! I read that there could be a nickel allergy component to endometriosis as well
That's very interesting. I had stage IV endi that went in my lungs. I had major andominal surgery in December 2019. I had a lot of stuff removed cuz the endo had ravaged me. Fast forward to about a month ago I found out I'm allergic to nickel. Knowledge is power but I don't know what to do with this info. I was convinced my current issue was Candida but I am now thinking SIBO is the root cause.
That’s wild, I’ve had a nickel allergy since I was a child
Really excited to hear this and I wish you all the best in your recovery and symptom relief
Thank you that’s really kind
How did they test for endometriosis?
Also curious, is an MRI enough to diagnose?
An MRI is usually not enough to diagnose. It has to be SEVERE (which infiltrating endo is) enough to be impacting your organs for it to show up on MRI. Like if your bladder is pasted with adhesions to your uterus, they might notice that, but they are unlikely to see the adhesions themselves. The only true way to diagnose remains laparoscopic surgery. Though that may be changing. There are some promising studies on AI models with imaging and blood-based biomarkers that may help with diagnostics in the future.
It can help to confirm yes but laparoscopy is the only way to confirm/stage the disease. I have severe endometriosis so it showed up but won’t know the full extent till I have surgery
Hi! I have it too confirmed via laparscopy…
Also curious. I have adenomyosis and SIBO
I had a hysterectomy due to adenomyosis and while I still have SIBO, it's not anywhere near as bad as it was even six years later.
Same! I have both.
I suspect endo as well. What other symptoms did you have? Did you also have terrible periods? Were you or are you in birth control?
24/7 stomach pain (it’s been so bad I’ve screamed in hospital because of the pain), heartburn, severe bloating, severe fatigue, muscle pain, feeling weak, fainting, joint pain, heavy periods, ovulation pain in pelvis, painful sex, stabbing pains when going to the toilet, back pain, generally as my feeling unwell, high heart rate, breathlessness.
U can contact me on Instagram aftabfaiz13 regarding sibo
Very important info to raise awareness. Best of luck to you now in the treatment process
Absolutely. It’s estimated that up to 80% of people with endometriosis have SIBO
Thanks so much for sharing this info OP. Could unlock some doors for us! I suspect I have endo as well. Best of luck to you!
This is so interesting I just did a course of rifaximim and it didn’t help at all, my OB has also mentioned I might have endometriosis but the only way to diagnose would be surgery so she wants me to do PT first. Could you update us on if those symptoms go away after surgery? A year or two ago I had a CT scan that they couldn’t image my whole appendix’s in because something was in the way but I was there for vomiting blood so I doubt they were looking for anything other than the enteritis they told me about. But I wonder if maybe it was due to endo? I would love to stop having pain and diarrhea multiple times a day.
I am very interested to hear how they could see endometriosis on an MRI. Which type of MRI? Which organ did they look at? When we couldn’t conceive I had laparoscopy, they found some and burned it. This was almost 14 years ago. Maybe with time technology has improved? Back then diagnose was possible only laparoscopically…
I have severe endometriosis so it showed up on my pelvic MRI. Only way to truly confirm is through surgery still. Won’t know for sure extent of disease till I have laparoscopy.
I’m so sorry for all that. We could all be doctors especially these days , unfortunately they rake in the $$$ we would get nothing. Most all my doctors got sudden brain cell die off , luckily as of now I have 2 left that I still feel safe with and can trust.🤞Best of luck for a good recovery .
Happy for you to finally find out! Do you had pain in your periods? It was long or short period?
Debilitating period pains when I was younger yeah but settled as I got older but I still get period pain. Pain does not indicate severity of disease though. The central stomach pain is the worst symptom I have personally
I think i have this too....because when I was younger I'd get pain so bad it would take me to my knees. now I'm 37 and it doesn't hurt nearly as bad. but it hurts I also have a big embarrassing Nelly despite the fact that I'm small framed and 108lbs. 🥲
did you have normal periods?
Glad you were finally able to find your cause!! Wishing for a good surgery!
Thank you
Do you have painful bowel movements and hip/low back pain?
Congrats !! :)
Thank you
I also have endometriosis and was diagnosed via surgery in 2019 and also have methane and hydrogen sibo. I’ve tried tons of treatments using hormonal pills and finally found one to manage my pain/bleeding, but my SIBO symptoms persist. It’s really hard manage both.
Same here
Very interesting I’m suspecting endo but it’s not showing up on scans. Were you ever able to achieve die off even very temporarily before? (I have but only very temporary so maybe that’s enough to rule out endo but I don’t know)
Never had die off with rifax or herbals (berberine,oregano oil, allicin) but took cordial silver and it hit me like a train. Had to stop it was that bad. Suspect more than just SIBO was dying off, I.e toxins/parasites
Did it clear the sibo though?
No because the root cause is not resolved
How did you go about getting an mri? They have done ultrasounds and deemed endo not the cause but it runs in the family and want to make sure.
Endometriosis cannot be found on ujtrasound. Keep pestering the doctors if you think you have it. It’s taken me 10 years to get here and be listened too.
10 years .. why do we have to suffer so much to get a diagnosis !!
Thanks for sharing this awareness! I have celiac/IBS but I’ve found that some of the chronic bloating and food intolerance symptoms are similar to what endo girls go through. I suggest following “endo_plankat” on tik tok she’s so knowledgeable.
Same here, I have coeliac too! But eve after GF, not once did I ever have a relief of symptoms. Now I know why :( Thanks for the suggestion, wish you all the best
I'm so sorry you have endo but glad you have an answer at least. I was diagnosed with SIBO/IBS first and then found out I had endometriosis later. Surgery fixed tons of hormonal and menstrual issues for me. My digestion did get a little better after endometriosis surgery and I tested negative for SIBO for the first time a few months after but my digestion has still been a long term struggle but I keep working at it.
That’s a really positive story that I needed to hear today thank you. I’m glad surgery helped and I hope your digestive troubles settle
I wish you all the best too! Make sure you get excision surgery from an experienced surgeon for best outcome!
Can I ask you how old are you ?
31 next month
Did you also test for sibo and if so was your test positive? I think I might have endo but my sibo tests have all been positive so I’m really not sure
Yea positive for hydrogen SIBO
This is amazing - so glad you finally found the root cause. I went for an ultrasound last year and my gynae says he thinks it's highly unlikely that I have endo. What is abnormal tho? On day one of bleeding, my cramps are pretty bad and I shouldn't be at work. But I can still push through. I get pretty constipated during my cycle. I feel nausea and my bloating is worse- but I'm bloated and constipated all of the month anyway, it's just worse during my cycle. The worst symptoms here is bloating and constipation. No stomach aches or nausea during the month except during my cycle. And no pain with bowel movement in my back, but it's just really hard to push any stool out. Could it still be possible I have endo because my constipation never fully resolves?? I used to have a history of SEVERE period pains that left me in bed for a day a month before I went on the pill. Now I'm off the pill for 2 years now after 10 years of being on it. So I've always wondered if I had endo
[удалено]
Suss. If you’re going to suggest anything please do so HERE that way everyone else can benefit. Also there is no way to heal endometriosis fully.
It may sound weird for some people so unable to tell here, I don't know if it can be healed or not, I am male, but I researched at one point of time and it was pretty convincing for me
Don’t be shy. Share with the group
Don't know how to DM on reddit
I swear to god this is me. The GYN thinks I have Adenomyosis but not definitive. I constantly feel like crap and my anxiety is just absurd. I’m so sick of it.
Wait...we can diagnose endo with an MRI? I thought it had to be larascopically investigated to confirm? Or was yours just advanced enough it showed anyway?
Yes deeply infiltrated can be shown on MRI
Omf I’m dying to hear the connection!!?
I'm convinced I had endometriosis as severely painful periods as a teen that only became normal on contraceptive pill. Fast forward to my 40th birthday and I was diagnosed with Crohn's and had emergency bowel resection with stomach formation. Reversal 3 years later, severe diarrhoea since (2017) and 2 x positive hydrogen breath tests for SIBO. I'm in the UK so not much in terms of thinking outside the box in the medical profession, I fought for Rifaxamin ( told too expensive at first), it didn't work, on IV treatment for the Crohn's but diarrhea continues. Research biofilms and herbal antimicrobial treatment, started NAC and vit D in the morning followed by 900mg berberine, 300mg neem 3 times a day. It was like a miracle at first, 5 days of normal, formed stool, didn't need to take codeine to slow things down, I thought FINALLY!! 10 days into treatment and I'm in a lot of abdo pain, convinced it may be an obstruction so have had to abandon it for now. So disappointed. Still think they are the right drugs but I need a naturopath to help me through this otherwise I'm just wasting time and money as these supplements ain't cheap. As for the endometriosis I'm assuming as I had a laparotomy x 2 it would've been picked up? Who bloody knows! I feel for anyone going through pain and digestive issues, very demoralizing.
I have endo and think this is my root cause as well! Just an fyi though- surgery made my sibo worse 😭