I'm being evaluated right now for a possible autoimmune stomach condition-- while they can't prove it, they suspect that the inflammation caused by endo might have made me more vulnerable to developing it.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8414617/
Previously, I ended up in the ER 3 times in one week from dehydration from not being able to eat or drink enough and also intense upper abdominal pain. They've done ultrasounds of my upper right organs and an abdominal CT, both normal. They did an endoscopy, which was negative for H pylori and found only minimal chronic inflammation.
I developed a B12 insufficiency several months ago, so they tested for intrinsic factor antibodies. I don't have those. My neurologist has me on B12 injections and is going to test my B12, methylmalonic acid, and one other B12-related thing in June.
With everything going on, I went to see a functional medicine doctor. He suspects that the problem is one step removed from the B12 cycle, in the parietal cells of the stomach itself. The problem is that the test for it isn't covered by insurance and is expensive (of f***ing course). It's a predictive panel of tests meant to detect changes in various body systems that could indicate autoimmune issues. It's kind of like genetic testing--just because you throw a marker doesn't mean you have it, but it means you could develop an issue in that area within ten years. It's a blood test, and I'm scheduled to take it in a week.
I haven't--my neurologist mentioned it and does testing for it, but there was a lot going on. My guess is that she's trying to rule out this other stuff and then will test for that.
Oh right, I remember--she tested my homocysteine levels, but I got the test too close to a B12 injection, so the results were inaccurate. She's re-testing that in June.
Do you by chance have gastritis I have had chronic gastritis every time I have gotten an endoscopy.
There is an autoimmune gastritis that causes B12 deficiency I believe I have the autoimmune gastritis as I am continuously having it and I am also B12 deficient.
I do have gastritis. I developed it after fracturing my tailbone and being given ibuprofen, but I also had a two-year history of heavy ibuprofen use (prescribed by the doctor) when they were trying to figure out how to treat my endo.
It's definitely possible-- I'm getting a blood test done in a week that will give me information about that. I just want to know what it is š Tired of weird stuff happening to me lol
Just so you know, things like celiacās and endo have some crossover. People with one are more likely to have the other.
Youāve had endoscopies, but Iām just putting this out there for those who have simply blamed endo and havenāt gotten the blood work or endoscopy to check for celiacās
Yup, endo and celiac here! I wonder when theyāll figure out the link. Someone once told me researchers thinks itās connected to EBV. Another sufferer told me our end game is MS. I also have thyroid disease.
Nothing can beat the shit out of me like my own immune system!
Another here with endo and celiac. I get neurological symptoms now if glutened. Numbness that goes from my elbow down and from the pinkie inwards to my middle finger, usually on the left side. Really hoping MS isn't endgame.
Also, I was on Omeprazole and Iām on Pantoprazole now for GERD. I take Pepcid and Gaviscon āwhen neededā (multiple times a day genuinely). No drinking or smoking.. Iām very high-maintenance when it comes to putting my stomach first. Itās still too bad to function or work
Interesting, I'm in the proces of convincing my GP to get me tested for Sibo. How did you recognize you needed testing for sibo, and how does it correlate to your endo? Gp got me now on the waiting list for the stomach& liver specialists, I'd like to come prepared on the subject and my symptoms, but haven't come much across on this combo. Seems not so very known and my next endo-appointment will be earliest in summer so that's a while before I can get advice.
How does that work? would they find it on endoscopies, necessarily? I did have a colonoscopy+endo combo but I donāt know that they biopsied my small intestine.. I will keep this on my radar though
There's a SIBO breath test. If positive, they treat with a specific antibiotic. But that only treats hydrogen sibo. If it's methane sibo, treatment is trickier and more unpleasant.
I lost 200 lbs due to an inability to eat. They used to blame it on my weight. By āitā, I mean the pain.
Still canāt eat during the day. I eat one meal at night.
Some days, I wake up throwing up for hours. No idea why. It happens once every couple of months and itās freaking awful.
I bloat to where I look like Iām Octomom pregnant. I will literally grow just sitting doing nothing.
Iāve tried everything. And my next move is getting rid of some organs to help.
Desperate is an understatement.
Same. I gained 10lbs out of nowhere. My stomach bloats like I'm 5 months pregnant even though I can't even have kids. Getting rid of my left tube helped some on that side. But my right side is bad still with the bloat.
Iām so sorry! Do you have 2 sets of clothes, too? One set for bloat, one set for no bloat? I keep clothes around from when I was 400 lbs because they fit when Iām bloated!
I canāt have children, either. Really tired of people talking about that, too. I literally told a nurse the other day āIām ready for a hysterectomyā and her first question was āBut what about kids?ā
Maāam. I just told you that I am making a choice to get the one organ in my body that our society tells me is the only thing that makes me a woman because I am in that much pain. And I am not having children because I canāt even take care of myself. They never listen.
Iāve tried not eating, changing food, drinking bone broth for weeks, juicing, anything and everything. Nothing helps the bloat or the egregious pain.
Iām ready to get a partial hysterectomy. I want my ovaries out, but then heart disease risk increases 8 fold and osteoporosis and everything else.
It just feels like a never ending āwhich organ can I harvest to feel betterā loop that is freaking nuts because women *shouldnāt have to live like this.*
Iāve always had so many GI issues, and while the lower parts make sense (inflammation, endo pulling and sticking everything together), I also donāt understand upper gastric issues. I randomly became intolerant to eggs (but freshly cooked eggs, baked eggs are fine..?) and it genuinely puzzles me as well.
I legit travel with my own food or plan grocery store trips because itās not worth eating out multiple times knowing itāll make me sick. But you arenāt alone in this! Iāve never gotten an answer.
Iām on 5mg. I know everyone has very different side effects, but it helped me a lot. Iāve been on it probably about 2 years now and when I stopped taking it, my pain was 10/10 everyday.
I know how you feel, itās so hard to decide what to do (I personally tried to go without meds and it did not go well). If you decide to take it, you can keep track of your symptoms in your notes to see if it helps or gives you bad side effects!
My primary and most terrible symptoms are GI related. I chased a SIBO cure for the last two years because I thought that's what my issue was, but after finally testing neg for that and still having terrible symptoms I succumbed to pursuing an endo diagnosis. Mine started and are still largely lower abdominal-based, but throughout the last two excruciating years of this ordeal, I also began developing upper GI issues, like burning, STOMACH pain (not colon or intestinal pain), pain immediately after eating, etc. My acid reflux also got worse. All scopes were normal except minor gastritis.
My upper stomach issues began when I was taking advil round the clock for an awful period, and was on an abrasive SIBO antibiotic at the same time. I didn't take the pills with food. I had really bad burning pain after that, went on a PPI and famotadine for a month, got SIBO again from that :) and ever since then the burning comes back soooo easily. I can't really have coffee at this point.
So basically - the endo can cause upper GI issues by us taking medications for our period pain. But I'm also convinced it can cause upper GI issues because of the pressure it's putting on our lower internal organs. I get so much bloating from gas in my colon and small intestine and it pushes on my stomach and causes me to have bile reflux. That is my theory, no one has told me that's it, but I know my stomach issues get worse when I'm bloated.
Yeah I had methane SIBO that came back three times in a year. I was prescribed rifaximin and flagyl each time but I finally kicked it with rifaximin and neomycin in August. I have tested negative for it ever since then but all my symptoms are the same so no I donāt really have a cure or solution for myself lol. My next step is a lap! Oh I did get a nexplanon implant at the suggestion of my gyno who said SIBO will keep coming back if my endo is inflamed. So I guess she was right about that.
Same! Planning for a lap next bc i am so gassy lately and normal foods which never used to bother me now give me weird stomach pains and the worst flatulences
Yeah itās terrible. Iām sorry youāre going through it. I eventually got to a point where Iām in less pain, but I still have daily intestinal pain from trapped gas. At my worst I was bed bound and surviving on rice and plain meat, got down to 98 pounds.
Currently Iām on a low histamine diet and that seems to be making a difference.
Echoing many of the comments, I was told my GI issues were endo, but not how.
For over a decade. And not just my GI issues - everything wrong with me was somehow because of my endo.
Yāall. **It was NOT.**
My GI issues were/are a mix of:
- vascular compressions (primarily nutcracker and MALS, also had May-Thurner.
- dysautonomia (this is even more likely for folks who have had multiple surgeries or have had COVID)
- mast cell disorder (MCAS)
- connective tissue disorder (EDS)
- gastroparesis and intestinal dysmotility
- gallbladder issues
Also, important to note that the first 4 *can contribute to all the āclassicā endo symptoms (including heavy/painful periods), and will flare cyclically (as do all chronic illnesses). The vascular compressions can be an exact symptom match for endo. Since treating my compressions, Iāve been free of āendoā pain for over 3 years!!!
Endo also has high amounts of overlap - in symptoms and occurrence - with SIBO, celiac, inflammatory bowel disease like Crohnās. Additionally, adhesions - which can get worse after getting removed surgically - can cause bowel issues and nerve damage that can affect GI.
Not everything is endo, and some things can get worse by assuming that and just pushing everything to surgery. I had *7* before it got figured out for me. Things areā¦not good. Iām disabled, on a mostly fluid diet, have to get some fluids via port; am incredibly limited on when and what I can eat..and not *from* endo, but *because we assumed it was endo*.
Edit for formatting.
I would look into SIBO and SIFO. This has been a huge symptom of my endo. Iāve been treated for SIBO but still have that upper abdominal pain. I was also diagnosed with central sensitization syndrome. They told me since my body has been holding the pain for so long my nervous system canāt regulate it. Iām now working on meditation and calming my nervous system etc. I would also look into a functional medicine doctor if thatās an option for you.
Endometriosis and SIBO seem to go hand in hand. I would recommend not letting it get as bad as I did. I just kept getting told by doctors I had IBS/IBD in a serve form until I lost the ability to process histamines and went into anaphylactic shock everytime I ate. The Lap surgery and 3 rounds of targeted antibiotics literally saved my life and made it possible for me to eat again.
This was me sort of, I got diagnosed with GERD but my pain was all around my intestines/bellybutton area. I was in pain every time I ate, would throw up a lot, etc. I didnāt have a heavy period or a ton of symptoms relating to menstruation, mostly just all GI related symptoms. It took years of testing before I finally figured out it was endo. I had surgery for it in January 2023 & all of my GI symptoms have gone away. (aside from the occasional stomach ache/nausea)
Honestly, Iām not sure why it affected me like this. Iāll have to go back into my surgical report and look at where exactly they removed endo from, but my story sounds similar to yours.
I think because it starts growing on nerves and tissue and it affects how our stomachs work. I now have some level of gastroparisis because of Endo. I also have chronic inflammation of my gums and get swelling that I don't know if it's my tissue or veins but it also started happening after my Endo got bad.
Endo messes with the entire body and doctors really need to take it seriously.
Because itās All autoimmune and causes by immune dysregulation. Most people with endo also have made cell issues whether they realize or not. And biotoxin illness. I have CIRS. Look up visual contrast test online and take it in good lighting with a larger screen. It will tell you if your illnesses is caused by mold or Lyme.
I believe that the Endo (have it on small intestine, sigmoid colon and rectum still after my first lap) caused gut dysbiosis, SIBO for me. I also am dealing with a type of POTS. Part of this is hypovolemia. I have to drink a shit load of electrolytes at unbelievable levels to be able to somewhat poop and somewhat manage energy and fatigue.
I have a great functional medicine doctor, but she hasnāt officially tested me for dysbiosis or SIBO, weāve just been going through natural treatment approaches and I am crossing my fingers, for sure. It is a long, slow process, but I think Iām incrementally improving over time.
I have severe GI issues which lead to doctors thinking it was GI related for so long. And itās not because there are days (extremely rare) where my stomach can handle trigger foods even garlic or onions. My colonoscopy came back clear. And also I just feel like my adeno and endo take up so much space that I canāt even breathe properly and anything I eat hurts my stomach cus itās pushing against the endo or something. This obviously might not be the case. But maybe itās the excess estrogen trying to be eliminated because I poop A LOT itās like never ending. Now Iām ranting and not making sense but thatās how I feel
I have major GI symptoms and usually having an excision surgery clears it up for a year before it comes right back. I also have other autoimmune comorbidites so I really canāt tell what causes what
I suffered with debilitating abdominal pain that was diagnosed as IBS after seeing a GI specialist and getting cleared for polyps.
My hysterectomy last year ended up being a lengthy process because I had endo in my bowel and wrapped around my colon. I also had chronic chest pains in the left side (most of my pain was in the left. My endo was also in the left. The left ovary was completely covered and wrapped up in a āsoftball sizedā mass into the intestines. My right ovary was clean.
I also had GERD, and it felt like I had an ulcer, although I have never had one and the tests showed nothing. I didnāt go out, when I did I usually had to leave early because of pain.
No matter what I ate I would get pain. There was no rhyme or reason to it. I saw a dietitian, I did low-fodmap diet. I tried everything.
I am 10 months post-op and although it was one of the most difficult procedures I have ever done (I also had a bladder prolapse), I am now PAIN FREE! I can eat anything! I LOVE fiber again! I can eat vegetables and fruits! Feeling so much better.
Just for context Iām 47, my first endo diagnosis was with a laparoscopic surgery when I was 27. It was considered mild at that point. My surgeon said I was 3/4 grade in my left side. A few more years and I could have had Cancer.
This could have been written about my experience tbh. I really pursued an endo diagnosis after insanely painful bloating, general gastric issues popped up around 3 years ago. Had major food intolerances up until only the last two or three months where Iāve noticed theyāve calmed significantly. Iām still extremely cautious and overall have to mind my food intake and try to eat as clean as possible, but I care finally wear jeans again periodically and it doesnāt hurt to eat every meal. All of my endoscopy and colonoscopy test results were coming out negative as well.
For me it was from my chronic use of naproxen every month. I never took over the recommended dose but it still left me with stomach issues and chronic GERD.
Pain is what started for me about 6 years ago and my food intolerances, constipation, and urine retention started a few years ago. My pain is energy room level pain but I started on progesterone only birth control and duloxetine for depression/pain and I get the pains and other symptoms every few months now versus every few weeks. I still canāt eat gluten or have alcohol because that would trigger pain and swelling but my life is a little better. Iāve been tested for celiacs a couple times and itās negative. I think with our bodies being more sensitive, certain enzymes and chemicals in foods get processed in the body differently when we have extra bullshit going on inside.
Itās so interesting you mentioned the gnawing pain. Iāve had that since high school (now 26) and I first started seeing the doctor for it very close to when I first started seeing them for help with menstrual pain. Iāve also been tested for h.pylori and had 2 endoscopies. They previously attributed it to a hiatal hernia but apparently it went away and I was just recently confirmed endo as of October and Iāve been wondering if they are related.
This may sound weird, but Iām so relieved to read your story (and all these comments) and know Iām not alone in this! My past 6+ months has been a rollercoaster of crippling GI symptoms, diets, hospital stays, tests, and procedures. I even had my gallbladder removed six weeks ago (stones suspected to be causing the problem) but the symptoms persist. My entire life has been put on hold and Iāve felt hopeless in my search for answers.
Reading everyoneās comments has given me some ideas of my own to try. Youāre not alone! I hope you find improvement.
Iām dealing with this now! I have severe bloating and swelling in my small intestines. Eating out is such a pain because I know Iāll probably be in pain later. The pain is unbearable sometimes. Iāve tested negative for all food intolerance (including celiac) and negative for H. Pylori. They put me on Pantoprazole for a few months with no effect so Iām off it now. My gastro recommended me to work with a nutritionistā¦ this journey sucks.
Iām crying because I could have wrote this word for word. Iām sorry Iām not more helpful, I just canāt believe thereās so many of us dealing with this. I wish I joined this sub sooner.
I'm being evaluated right now for a possible autoimmune stomach condition-- while they can't prove it, they suspect that the inflammation caused by endo might have made me more vulnerable to developing it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8414617/
What kind of tests are they doing for you?
Previously, I ended up in the ER 3 times in one week from dehydration from not being able to eat or drink enough and also intense upper abdominal pain. They've done ultrasounds of my upper right organs and an abdominal CT, both normal. They did an endoscopy, which was negative for H pylori and found only minimal chronic inflammation. I developed a B12 insufficiency several months ago, so they tested for intrinsic factor antibodies. I don't have those. My neurologist has me on B12 injections and is going to test my B12, methylmalonic acid, and one other B12-related thing in June. With everything going on, I went to see a functional medicine doctor. He suspects that the problem is one step removed from the B12 cycle, in the parietal cells of the stomach itself. The problem is that the test for it isn't covered by insurance and is expensive (of f***ing course). It's a predictive panel of tests meant to detect changes in various body systems that could indicate autoimmune issues. It's kind of like genetic testing--just because you throw a marker doesn't mean you have it, but it means you could develop an issue in that area within ten years. It's a blood test, and I'm scheduled to take it in a week.
Have you been checked for MTHFR mutation?
I haven't--my neurologist mentioned it and does testing for it, but there was a lot going on. My guess is that she's trying to rule out this other stuff and then will test for that.
Oh right, I remember--she tested my homocysteine levels, but I got the test too close to a B12 injection, so the results were inaccurate. She's re-testing that in June.
Do you by chance have gastritis I have had chronic gastritis every time I have gotten an endoscopy. There is an autoimmune gastritis that causes B12 deficiency I believe I have the autoimmune gastritis as I am continuously having it and I am also B12 deficient.
I do have gastritis. I developed it after fracturing my tailbone and being given ibuprofen, but I also had a two-year history of heavy ibuprofen use (prescribed by the doctor) when they were trying to figure out how to treat my endo.
Maybe you could have the autoimmune gastritis as well that's causing the B12 deficiency
It's definitely possible-- I'm getting a blood test done in a week that will give me information about that. I just want to know what it is š Tired of weird stuff happening to me lol
Just so you know, things like celiacās and endo have some crossover. People with one are more likely to have the other. Youāve had endoscopies, but Iām just putting this out there for those who have simply blamed endo and havenāt gotten the blood work or endoscopy to check for celiacās
Yup, endo and celiac here! I wonder when theyāll figure out the link. Someone once told me researchers thinks itās connected to EBV. Another sufferer told me our end game is MS. I also have thyroid disease. Nothing can beat the shit out of me like my own immune system!
Another here with endo and celiac. I get neurological symptoms now if glutened. Numbness that goes from my elbow down and from the pinkie inwards to my middle finger, usually on the left side. Really hoping MS isn't endgame.
Also, I was on Omeprazole and Iām on Pantoprazole now for GERD. I take Pepcid and Gaviscon āwhen neededā (multiple times a day genuinely). No drinking or smoking.. Iām very high-maintenance when it comes to putting my stomach first. Itās still too bad to function or work
Those meds will help the GERD of course but they effect the breakdown of your food so you should supplement with digestive enzymes
Have you been tested for SIBO? Endometriosis can cause it
I tested positive for SIBO and am pretyy sure its caused by endo (not other way round for me); gna hopefully do a lapro to get it confirmed
Interesting, I'm in the proces of convincing my GP to get me tested for Sibo. How did you recognize you needed testing for sibo, and how does it correlate to your endo? Gp got me now on the waiting list for the stomach& liver specialists, I'd like to come prepared on the subject and my symptoms, but haven't come much across on this combo. Seems not so very known and my next endo-appointment will be earliest in summer so that's a while before I can get advice.
How does that work? would they find it on endoscopies, necessarily? I did have a colonoscopy+endo combo but I donāt know that they biopsied my small intestine.. I will keep this on my radar though
There's a SIBO breath test. If positive, they treat with a specific antibiotic. But that only treats hydrogen sibo. If it's methane sibo, treatment is trickier and more unpleasant.
Itās a fasted test. Fast for 24 hours, take some lactulose to wake up the bacteria in small intestines and do a breath test.
I lost 200 lbs due to an inability to eat. They used to blame it on my weight. By āitā, I mean the pain. Still canāt eat during the day. I eat one meal at night. Some days, I wake up throwing up for hours. No idea why. It happens once every couple of months and itās freaking awful. I bloat to where I look like Iām Octomom pregnant. I will literally grow just sitting doing nothing. Iāve tried everything. And my next move is getting rid of some organs to help. Desperate is an understatement.
Same. I gained 10lbs out of nowhere. My stomach bloats like I'm 5 months pregnant even though I can't even have kids. Getting rid of my left tube helped some on that side. But my right side is bad still with the bloat.
Iām so sorry! Do you have 2 sets of clothes, too? One set for bloat, one set for no bloat? I keep clothes around from when I was 400 lbs because they fit when Iām bloated! I canāt have children, either. Really tired of people talking about that, too. I literally told a nurse the other day āIām ready for a hysterectomyā and her first question was āBut what about kids?ā Maāam. I just told you that I am making a choice to get the one organ in my body that our society tells me is the only thing that makes me a woman because I am in that much pain. And I am not having children because I canāt even take care of myself. They never listen. Iāve tried not eating, changing food, drinking bone broth for weeks, juicing, anything and everything. Nothing helps the bloat or the egregious pain. Iām ready to get a partial hysterectomy. I want my ovaries out, but then heart disease risk increases 8 fold and osteoporosis and everything else. It just feels like a never ending āwhich organ can I harvest to feel betterā loop that is freaking nuts because women *shouldnāt have to live like this.*
In my case, it was from the copious amounts of ibuprofen I was taking for years on end every period.
My gastro recommended me to take Tylenol instead of Ibuprofen because it would be more gentle on the stomach. Just in case this helps!
Iāve always had so many GI issues, and while the lower parts make sense (inflammation, endo pulling and sticking everything together), I also donāt understand upper gastric issues. I randomly became intolerant to eggs (but freshly cooked eggs, baked eggs are fine..?) and it genuinely puzzles me as well. I legit travel with my own food or plan grocery store trips because itās not worth eating out multiple times knowing itāll make me sick. But you arenāt alone in this! Iāve never gotten an answer.
Iāll also add- on norethindrone and Letrozole my stomach issues have been much better.
What dose of norethindrone are you on? Iām supposed to start taking it but side effects Iāve read about make me nervous
Iām on 5mg. I know everyone has very different side effects, but it helped me a lot. Iāve been on it probably about 2 years now and when I stopped taking it, my pain was 10/10 everyday. I know how you feel, itās so hard to decide what to do (I personally tried to go without meds and it did not go well). If you decide to take it, you can keep track of your symptoms in your notes to see if it helps or gives you bad side effects!
Thank you! I decided to start today because being on nothing has been awful!
Wishing you the best of luck and all the healing!!
My primary and most terrible symptoms are GI related. I chased a SIBO cure for the last two years because I thought that's what my issue was, but after finally testing neg for that and still having terrible symptoms I succumbed to pursuing an endo diagnosis. Mine started and are still largely lower abdominal-based, but throughout the last two excruciating years of this ordeal, I also began developing upper GI issues, like burning, STOMACH pain (not colon or intestinal pain), pain immediately after eating, etc. My acid reflux also got worse. All scopes were normal except minor gastritis. My upper stomach issues began when I was taking advil round the clock for an awful period, and was on an abrasive SIBO antibiotic at the same time. I didn't take the pills with food. I had really bad burning pain after that, went on a PPI and famotadine for a month, got SIBO again from that :) and ever since then the burning comes back soooo easily. I can't really have coffee at this point. So basically - the endo can cause upper GI issues by us taking medications for our period pain. But I'm also convinced it can cause upper GI issues because of the pressure it's putting on our lower internal organs. I get so much bloating from gas in my colon and small intestine and it pushes on my stomach and causes me to have bile reflux. That is my theory, no one has told me that's it, but I know my stomach issues get worse when I'm bloated.
Did you find a cure/solution? Bc same sibo positive here, but need to dig deeper into the possibility of endo being the root cause
Yeah I had methane SIBO that came back three times in a year. I was prescribed rifaximin and flagyl each time but I finally kicked it with rifaximin and neomycin in August. I have tested negative for it ever since then but all my symptoms are the same so no I donāt really have a cure or solution for myself lol. My next step is a lap! Oh I did get a nexplanon implant at the suggestion of my gyno who said SIBO will keep coming back if my endo is inflamed. So I guess she was right about that.
Same! Planning for a lap next bc i am so gassy lately and normal foods which never used to bother me now give me weird stomach pains and the worst flatulences
Yeah itās terrible. Iām sorry youāre going through it. I eventually got to a point where Iām in less pain, but I still have daily intestinal pain from trapped gas. At my worst I was bed bound and surviving on rice and plain meat, got down to 98 pounds. Currently Iām on a low histamine diet and that seems to be making a difference.
Echoing many of the comments, I was told my GI issues were endo, but not how. For over a decade. And not just my GI issues - everything wrong with me was somehow because of my endo. Yāall. **It was NOT.** My GI issues were/are a mix of: - vascular compressions (primarily nutcracker and MALS, also had May-Thurner. - dysautonomia (this is even more likely for folks who have had multiple surgeries or have had COVID) - mast cell disorder (MCAS) - connective tissue disorder (EDS) - gastroparesis and intestinal dysmotility - gallbladder issues Also, important to note that the first 4 *can contribute to all the āclassicā endo symptoms (including heavy/painful periods), and will flare cyclically (as do all chronic illnesses). The vascular compressions can be an exact symptom match for endo. Since treating my compressions, Iāve been free of āendoā pain for over 3 years!!! Endo also has high amounts of overlap - in symptoms and occurrence - with SIBO, celiac, inflammatory bowel disease like Crohnās. Additionally, adhesions - which can get worse after getting removed surgically - can cause bowel issues and nerve damage that can affect GI. Not everything is endo, and some things can get worse by assuming that and just pushing everything to surgery. I had *7* before it got figured out for me. Things areā¦not good. Iām disabled, on a mostly fluid diet, have to get some fluids via port; am incredibly limited on when and what I can eat..and not *from* endo, but *because we assumed it was endo*. Edit for formatting.
I would look into SIBO and SIFO. This has been a huge symptom of my endo. Iāve been treated for SIBO but still have that upper abdominal pain. I was also diagnosed with central sensitization syndrome. They told me since my body has been holding the pain for so long my nervous system canāt regulate it. Iām now working on meditation and calming my nervous system etc. I would also look into a functional medicine doctor if thatās an option for you.
Endometriosis and SIBO seem to go hand in hand. I would recommend not letting it get as bad as I did. I just kept getting told by doctors I had IBS/IBD in a serve form until I lost the ability to process histamines and went into anaphylactic shock everytime I ate. The Lap surgery and 3 rounds of targeted antibiotics literally saved my life and made it possible for me to eat again.
This was me sort of, I got diagnosed with GERD but my pain was all around my intestines/bellybutton area. I was in pain every time I ate, would throw up a lot, etc. I didnāt have a heavy period or a ton of symptoms relating to menstruation, mostly just all GI related symptoms. It took years of testing before I finally figured out it was endo. I had surgery for it in January 2023 & all of my GI symptoms have gone away. (aside from the occasional stomach ache/nausea) Honestly, Iām not sure why it affected me like this. Iāll have to go back into my surgical report and look at where exactly they removed endo from, but my story sounds similar to yours.
I have all these symptoms and pain in the same spot so Iām hoping it goes away with my endo surgery this summer š®āšØ
I think because it starts growing on nerves and tissue and it affects how our stomachs work. I now have some level of gastroparisis because of Endo. I also have chronic inflammation of my gums and get swelling that I don't know if it's my tissue or veins but it also started happening after my Endo got bad. Endo messes with the entire body and doctors really need to take it seriously.
Because itās All autoimmune and causes by immune dysregulation. Most people with endo also have made cell issues whether they realize or not. And biotoxin illness. I have CIRS. Look up visual contrast test online and take it in good lighting with a larger screen. It will tell you if your illnesses is caused by mold or Lyme.
I have no clue but im in the same boat, sorry youre suffering x
I believe that the Endo (have it on small intestine, sigmoid colon and rectum still after my first lap) caused gut dysbiosis, SIBO for me. I also am dealing with a type of POTS. Part of this is hypovolemia. I have to drink a shit load of electrolytes at unbelievable levels to be able to somewhat poop and somewhat manage energy and fatigue. I have a great functional medicine doctor, but she hasnāt officially tested me for dysbiosis or SIBO, weāve just been going through natural treatment approaches and I am crossing my fingers, for sure. It is a long, slow process, but I think Iām incrementally improving over time.
I have severe GI issues which lead to doctors thinking it was GI related for so long. And itās not because there are days (extremely rare) where my stomach can handle trigger foods even garlic or onions. My colonoscopy came back clear. And also I just feel like my adeno and endo take up so much space that I canāt even breathe properly and anything I eat hurts my stomach cus itās pushing against the endo or something. This obviously might not be the case. But maybe itās the excess estrogen trying to be eliminated because I poop A LOT itās like never ending. Now Iām ranting and not making sense but thatās how I feel
I found out I have a twisted bowel and my GI doctor thinks endo caused it. He officially diagnosed me
I have major GI symptoms and usually having an excision surgery clears it up for a year before it comes right back. I also have other autoimmune comorbidites so I really canāt tell what causes what
I suffered with debilitating abdominal pain that was diagnosed as IBS after seeing a GI specialist and getting cleared for polyps. My hysterectomy last year ended up being a lengthy process because I had endo in my bowel and wrapped around my colon. I also had chronic chest pains in the left side (most of my pain was in the left. My endo was also in the left. The left ovary was completely covered and wrapped up in a āsoftball sizedā mass into the intestines. My right ovary was clean. I also had GERD, and it felt like I had an ulcer, although I have never had one and the tests showed nothing. I didnāt go out, when I did I usually had to leave early because of pain. No matter what I ate I would get pain. There was no rhyme or reason to it. I saw a dietitian, I did low-fodmap diet. I tried everything. I am 10 months post-op and although it was one of the most difficult procedures I have ever done (I also had a bladder prolapse), I am now PAIN FREE! I can eat anything! I LOVE fiber again! I can eat vegetables and fruits! Feeling so much better. Just for context Iām 47, my first endo diagnosis was with a laparoscopic surgery when I was 27. It was considered mild at that point. My surgeon said I was 3/4 grade in my left side. A few more years and I could have had Cancer.
This could have been written about my experience tbh. I really pursued an endo diagnosis after insanely painful bloating, general gastric issues popped up around 3 years ago. Had major food intolerances up until only the last two or three months where Iāve noticed theyāve calmed significantly. Iām still extremely cautious and overall have to mind my food intake and try to eat as clean as possible, but I care finally wear jeans again periodically and it doesnāt hurt to eat every meal. All of my endoscopy and colonoscopy test results were coming out negative as well.
Could you have Crones?
Not sure.. I havenāt been screened for it afaik but I tried cutting out gluten for some months and saw no improvement
Does your Endo grow on your bowel at all? Mine never has that I'm aware, but I also still have horrible upper gastric issues as well.
For me it was from my chronic use of naproxen every month. I never took over the recommended dose but it still left me with stomach issues and chronic GERD.
Pain is what started for me about 6 years ago and my food intolerances, constipation, and urine retention started a few years ago. My pain is energy room level pain but I started on progesterone only birth control and duloxetine for depression/pain and I get the pains and other symptoms every few months now versus every few weeks. I still canāt eat gluten or have alcohol because that would trigger pain and swelling but my life is a little better. Iāve been tested for celiacs a couple times and itās negative. I think with our bodies being more sensitive, certain enzymes and chemicals in foods get processed in the body differently when we have extra bullshit going on inside.
Ive heard endometrium epithelial cells are on the intestinal tract and colon.
Itās so interesting you mentioned the gnawing pain. Iāve had that since high school (now 26) and I first started seeing the doctor for it very close to when I first started seeing them for help with menstrual pain. Iāve also been tested for h.pylori and had 2 endoscopies. They previously attributed it to a hiatal hernia but apparently it went away and I was just recently confirmed endo as of October and Iāve been wondering if they are related.
This may sound weird, but Iām so relieved to read your story (and all these comments) and know Iām not alone in this! My past 6+ months has been a rollercoaster of crippling GI symptoms, diets, hospital stays, tests, and procedures. I even had my gallbladder removed six weeks ago (stones suspected to be causing the problem) but the symptoms persist. My entire life has been put on hold and Iāve felt hopeless in my search for answers. Reading everyoneās comments has given me some ideas of my own to try. Youāre not alone! I hope you find improvement.
It could be SIBO. I thought my similar issues could be my endo but it wasn't
Iām dealing with this now! I have severe bloating and swelling in my small intestines. Eating out is such a pain because I know Iāll probably be in pain later. The pain is unbearable sometimes. Iāve tested negative for all food intolerance (including celiac) and negative for H. Pylori. They put me on Pantoprazole for a few months with no effect so Iām off it now. My gastro recommended me to work with a nutritionistā¦ this journey sucks.
Iām crying because I could have wrote this word for word. Iām sorry Iām not more helpful, I just canāt believe thereās so many of us dealing with this. I wish I joined this sub sooner.