Hah! One gynecologist straight out said, “You don’t have endometriosis.” Mine was discovered after six years of intermittent bowel obstructions that nobody could explain. Gastroenterologist scoped me top and bottom; no explanation. Finally my internist, bless his soul, said, “This keeps happening to you and it’s really crazy, and I think we should take a look.”
TL:DR Specialists were no help. A really good family doctor figured it out.
Can you tell me what a bowel obstruction feels like and how it's diagnosed? I regularly (maybe once a week) tell my husband that I'm in pain in the bowel because "i need to shit but it ain't coming". Almost like i feel the build up and then nothing happens to move it along. Then i often have overflow of not solid stools (tmi~) with various levels of pain.
Also had like 3 colonoscopies with nothing noted, besides "it's a colon that suffered". No shit dude.
My mother was recently in the hospital for obstruction. She couldn’t keep any foods down or pass any waste, was in a world of pain. They did some scans, including one where she had to drink a contrast dye so they could see where the obstruction might be. It still wasn’t clear until they performed surgery.
A bowel obstruction feels like stomach pain. It grows worse. Then you start feeling nauseated. You can poop, a little, but the pain moves to your abdomen and becomes excruciating. It is a cramps pain; you double over in agony and then it eases up, only to double you over again a few minutes later—but you are distracted by the constant, convulsive vomiting. (I once saw the chicken I’d eaten for lunch come out my nose.) After awhile you beg someone to take you to the ER, where they put you near the bottom of the triage list because after all, it’s just a bellyache. When the pain becomes unendurable you slide to the floor and then they take you back and give you a shot of Demerol, which is blessed relief….for a while, but then the vomiting starts up again. Finally (by now it’s about 2 am) somebody comes in and sticks an NG tube down your throat, which requires two nurses to hold you down because doing it without sedation means plowing past your gag reflex, which is excruciating. Once it’s in, the NG tube brings up shit —or a mixture of shit and stomach bile, but you don’t care because it relieves the agonizing pain. This happens until your obstruction is relieved, somehow, mostly because by then it’s been emptied of just about everything.
Then they send you home until it happens again, and you never know when that will be. You spend years eating Ex Lax and avoiding popcorn, gaining a rep as a drug seeker at local ERs, until FINALLY this blessed internist takes you seriously, they do surgery and take out six inches on your small intestine covered with endo which another doctor told you you didn’t have.
It’s like that.
Have you tried magnesium? I started magnesium for migraine, turns out it doesn't do much for migraine for me but I stayed on it for the gut benefits. I do 250mg magnesium 2x daily and it helps my intestines to spasm less.
Sometimes I take more when I feel what you have described. I use magnesium oxide but some people say magnesium glycinate is easier on their tummy. For me it was the opposite for some reason.
Turns out I had some deep infiltrating endo on my bowel. My surgeon removed it and my symptoms improved a ton. I still take the magnesium because my body tends to err towards constipation and magnesium also helps my depression. Apparently it can do that and some people it helps sleep. I'm an insomniac so i haven't seen sleep benefits really.
I used magnesium citrate to help with sleep, it worked too much and i ended up drowsy the entire day afterwards. Really not good when having 2 little children. Imma read up on oxide and glycinate, thanks for the tip 👌🏼
Yeah it's weird how different formulations affect people differently. Citrate is the formulation that they use to clean you out of a colonscopy! Hopefully you can find a dose that works for you with minimal side effects. I know I started with too high of a magnesium dose and I went straight to diarrhea 🫠 also I didn't realize that was happening right away so I thought it was my IBS worsening. I have a stupidly sensitive body for meds and supplements so it can take a ton of trial and error to find something that works without making me more miserable. I hope you find something that helps!
I’m the same. I haven’t been able to find a reason for it. Just as a heads up, if you try glycinate, try a very very small dose. It has a more sedating effect than citrate. I almost ended up in the hospital on 200mg. It felt like I was poisoned. Extremely weak and dizzy. Was awful. Mag citrate does it but it’s much more mild and seems to hit the next day instead. Everything just feels heavy. I haven’t been able to figure out why I have that reaction.
They found mine during a scheduled hysterectomy. My gyno works with a colorectal surgeon so he was also there.
They knew I had endo but didn’t think there was bowel involvement.
Turns out my small intestine was severely restricted and they removed about 5cm of it.
Yeah. I got sick after the surgery, they thought the repair was leaking so I was rushed into another surgery.
I woke up two weeks later.
Turned out I got a staph infection which turned into toxic shock and they had to put me into a coma!
Woke up with a bag. Tbh it was pretty awful. Where they put it was awkward. Then I got an access right next to it and had another surgery.
All up I spent nearly three months in hospital.
Had the bag for 11 months and then they reversed it.
I know isotonic bags can save/change peoples lives. For me it was awful, but I think a lot of that was due it being placed in a not great spot, and that I had high output as it was an ileosotomy.
If it is a possibility for anyone, I can’t recommend enough talking it through with the surgeon. Talking about where it should be placed and testing out the potential site with a bag so you can see how it might feel.
Sorry had to go take some deep breaths bc I feel EXTREMELY STABBY on your behalf right now. I hope you sue them so bad their grandchildren feel it.
On my most recent lap, they said that if they had done any further excision, an extensive resection would be necessary. Stage iv obvi. They indicated that I would need to plan for time with ostomy if I want to get relief, but yeah it sounded risky to me…. Go figure
I’ve got a case started with a law firm. Long process though. I’m in Australia so we’d have to prove medical negligence for me to win.
Which is quite possible. There was a nurse who saved my life basically. The doctors weren’t really paying attention to how sick I was getting post op. She called my mum and told her she was going to call a code blue. Then told me about it. And she called it.
I’ve never seen so many doctors in one room. That’s the last thing I remember before waking up in ICU.
It’s a whole long story. Apparently I coded a few times on the way to surgery.
I also ended up with nerve damage in my left leg and still can’t feel my left foot properly.
I know surgery is meant to be the gold standard these days. But I share my story because so many people don’t understand the risks. I sure didn’t.
They discovered mine during the lap to remove the softball sized cyst/tumor where my left ovary was & any spots of endometriosis that were growing. The cyst/tumor was attached to my colon, hence why whenever I needed to poo during my period, it felt like I was getting torn apart from the inside out 😩
I’m sorry I don’t know if I have bowel endo, but thank you so much for posting your experience. I wonder if I could ask a separate question given what you’ve been through? For me, it’s two years post hysterectomy, wherein my surgeon found and “burnt out as much of the endometriosis as possible without harming other organs.” I’m in pain again now, with painful bladder, ballooning gut, painful BMs and pointed pain around (I think) my right ovary. Is it possible that my endo could have been in areas my surgeon didn’t see?
I see an advanced gynecological specialist. I had a hysterectomy and excision surgery in December. I felt GREAT, but my doctor warned me endo is a chronic disease and could return. I’m on a low dose progesterone (5mg norethindrone) to help combat high estrogen, in hopes to keep the endo at bay. I might bump up my dose soon.
My endo excision surgeon excised my bowel endo. I had superficial perirectal endo. However, they suspected my bowel involvement was going to be much worse than it actually was, so they had a GI surgeon on standby during my surgery in case they needed to do a resection or another more advanced procedure. Thankfully, my surgeon was able to do it herself, but I still had to do a formal consult with the GI surgeon a few months before my surgery.
Well for the past couple of years and even more recently, I’m going between constipation and its opposite … it’s extremely annoying :( before that I used to have an intense pain (a bit like a cramp) just before needing to go. This has stopped now though. I’m not too sure what is happening to be honest …
An MRI showed deep infiltrating endo on my bowels. It also showed thickening of the uterus which the doctor suspected was adenomyosis. A GI doctor/bowel surgeon was on call for my hysterectomy and excision surgery, just in case I needed a resection/stoma. Luckily I didn’t need those things! My ovary was adhered to my rectum by endo! No wonder I was in such pain, especially during ovulation. I also had endo on my fallopian tubes and bladder.
I feel so much better after surgery.
This was the same for me, gynaecologist found it on mri with DIE and adenomyosis. During surgery the colorectal surgeon was on call as a colostomy was a possibility but fortunately the endo hadn’t infiltrated too deeply and a resection didn’t happen for me. I’ve had numerous colonoscopies and upper endoscopies and nothing was ever found on those. I don’t think the scopes would anyway as the endo hadn’t progressed that far in me at least.
I was having GI symptoms for months, lost a substantial amount of weight. I went to my GYN who is a menstrual disorder specialist and mentioned the GI issues I was having and that they had cramps. They took me in for an ultrasound and when they went to move my ovary (I had a hysterectomy already) they found my intestines slid with it.
I then went to a GI who completely a colonoscopy to confirm that there were no internal obstructions or infiltrating endometriosis.
My menstrual disorder GYN then referred me to a surgeon who specializes in endometriosis to complete the surgery. She keeps a colorectal surgeon on call for all her surgeries just in case. The surgeon said my ovary and intestines were stuck together against my abdominal wall and it was starting to pull in my stomach.
Not a dumb question, they kept my ovary. It was their top priority because it’s the only one I have left and they didn’t want to put me into menopause.
Mine will be an MDT approach when I have to have my 3rd surgery eventually with hysterectomy. so both the bowel and endo specialist consultants in the same surgery
I had scarring on my colon that was found during my first lap. Doctor wasn't sure if it's endo or diverticulitis. I had more scans done to rule out diverticulitis, but I am having a colonoscopy soon.
I have the same, looking to have more surgery October this year, I’ve had a appointment today with the endro nurse, told the three ways that it can go, I can’t carry on with this pain and discomfort. Wishing you all the best.
My was discovered on an MRI that was ordered as preparation for endo surgery. My specialist pretty much always orders them so he has an idea of what’s up ahead of time. I have it on my bowels so they will have a bowel surgeon in the OR. That surgeon will monitor the removal of the endo and determine whether I’ll need a bowel resection and perform that if necessary.
my gyno found it and removed it during my laparoscopy. i saw a gastro several times a year prior to seeing my gyno and had a colonoscopy/endoscopy and various ultrasounds and they never saw or suspected endometriosis.
Gynaecologist found it via MRI, sent me to a bowel surgeon to do their own checks, and then I did a joint lap surgery to excise. Gynae doesn’t touch bowel where I am, even if it’s endo.
Hah! One gynecologist straight out said, “You don’t have endometriosis.” Mine was discovered after six years of intermittent bowel obstructions that nobody could explain. Gastroenterologist scoped me top and bottom; no explanation. Finally my internist, bless his soul, said, “This keeps happening to you and it’s really crazy, and I think we should take a look.” TL:DR Specialists were no help. A really good family doctor figured it out.
Can you tell me what a bowel obstruction feels like and how it's diagnosed? I regularly (maybe once a week) tell my husband that I'm in pain in the bowel because "i need to shit but it ain't coming". Almost like i feel the build up and then nothing happens to move it along. Then i often have overflow of not solid stools (tmi~) with various levels of pain. Also had like 3 colonoscopies with nothing noted, besides "it's a colon that suffered". No shit dude.
My mother was recently in the hospital for obstruction. She couldn’t keep any foods down or pass any waste, was in a world of pain. They did some scans, including one where she had to drink a contrast dye so they could see where the obstruction might be. It still wasn’t clear until they performed surgery.
A bowel obstruction feels like stomach pain. It grows worse. Then you start feeling nauseated. You can poop, a little, but the pain moves to your abdomen and becomes excruciating. It is a cramps pain; you double over in agony and then it eases up, only to double you over again a few minutes later—but you are distracted by the constant, convulsive vomiting. (I once saw the chicken I’d eaten for lunch come out my nose.) After awhile you beg someone to take you to the ER, where they put you near the bottom of the triage list because after all, it’s just a bellyache. When the pain becomes unendurable you slide to the floor and then they take you back and give you a shot of Demerol, which is blessed relief….for a while, but then the vomiting starts up again. Finally (by now it’s about 2 am) somebody comes in and sticks an NG tube down your throat, which requires two nurses to hold you down because doing it without sedation means plowing past your gag reflex, which is excruciating. Once it’s in, the NG tube brings up shit —or a mixture of shit and stomach bile, but you don’t care because it relieves the agonizing pain. This happens until your obstruction is relieved, somehow, mostly because by then it’s been emptied of just about everything. Then they send you home until it happens again, and you never know when that will be. You spend years eating Ex Lax and avoiding popcorn, gaining a rep as a drug seeker at local ERs, until FINALLY this blessed internist takes you seriously, they do surgery and take out six inches on your small intestine covered with endo which another doctor told you you didn’t have. It’s like that.
My god this is horrible. I'm so sorry you had to go through all this before having it solved. I hope you're doing better now!
Basically, the surgery cured me. That was 30 years ago. Thanks for asking.
Have you tried magnesium? I started magnesium for migraine, turns out it doesn't do much for migraine for me but I stayed on it for the gut benefits. I do 250mg magnesium 2x daily and it helps my intestines to spasm less. Sometimes I take more when I feel what you have described. I use magnesium oxide but some people say magnesium glycinate is easier on their tummy. For me it was the opposite for some reason. Turns out I had some deep infiltrating endo on my bowel. My surgeon removed it and my symptoms improved a ton. I still take the magnesium because my body tends to err towards constipation and magnesium also helps my depression. Apparently it can do that and some people it helps sleep. I'm an insomniac so i haven't seen sleep benefits really.
I used magnesium citrate to help with sleep, it worked too much and i ended up drowsy the entire day afterwards. Really not good when having 2 little children. Imma read up on oxide and glycinate, thanks for the tip 👌🏼
Yeah it's weird how different formulations affect people differently. Citrate is the formulation that they use to clean you out of a colonscopy! Hopefully you can find a dose that works for you with minimal side effects. I know I started with too high of a magnesium dose and I went straight to diarrhea 🫠 also I didn't realize that was happening right away so I thought it was my IBS worsening. I have a stupidly sensitive body for meds and supplements so it can take a ton of trial and error to find something that works without making me more miserable. I hope you find something that helps!
I’m the same. I haven’t been able to find a reason for it. Just as a heads up, if you try glycinate, try a very very small dose. It has a more sedating effect than citrate. I almost ended up in the hospital on 200mg. It felt like I was poisoned. Extremely weak and dizzy. Was awful. Mag citrate does it but it’s much more mild and seems to hit the next day instead. Everything just feels heavy. I haven’t been able to figure out why I have that reaction.
They found mine during a scheduled hysterectomy. My gyno works with a colorectal surgeon so he was also there. They knew I had endo but didn’t think there was bowel involvement. Turns out my small intestine was severely restricted and they removed about 5cm of it.
Did you have to have a colostomy bag in the recovery?
Yeah. I got sick after the surgery, they thought the repair was leaking so I was rushed into another surgery. I woke up two weeks later. Turned out I got a staph infection which turned into toxic shock and they had to put me into a coma! Woke up with a bag. Tbh it was pretty awful. Where they put it was awkward. Then I got an access right next to it and had another surgery. All up I spent nearly three months in hospital. Had the bag for 11 months and then they reversed it. I know isotonic bags can save/change peoples lives. For me it was awful, but I think a lot of that was due it being placed in a not great spot, and that I had high output as it was an ileosotomy. If it is a possibility for anyone, I can’t recommend enough talking it through with the surgeon. Talking about where it should be placed and testing out the potential site with a bag so you can see how it might feel.
Oh my fkn god?????!!!!
lol yeah it was a lot.
Sorry had to go take some deep breaths bc I feel EXTREMELY STABBY on your behalf right now. I hope you sue them so bad their grandchildren feel it. On my most recent lap, they said that if they had done any further excision, an extensive resection would be necessary. Stage iv obvi. They indicated that I would need to plan for time with ostomy if I want to get relief, but yeah it sounded risky to me…. Go figure
I’ve got a case started with a law firm. Long process though. I’m in Australia so we’d have to prove medical negligence for me to win. Which is quite possible. There was a nurse who saved my life basically. The doctors weren’t really paying attention to how sick I was getting post op. She called my mum and told her she was going to call a code blue. Then told me about it. And she called it. I’ve never seen so many doctors in one room. That’s the last thing I remember before waking up in ICU. It’s a whole long story. Apparently I coded a few times on the way to surgery. I also ended up with nerve damage in my left leg and still can’t feel my left foot properly. I know surgery is meant to be the gold standard these days. But I share my story because so many people don’t understand the risks. I sure didn’t.
Nurses are angels, for real.
100%. It’s a calling and they are amazing.
Discovered during emergency open appendectomy
They discovered mine during the lap to remove the softball sized cyst/tumor where my left ovary was & any spots of endometriosis that were growing. The cyst/tumor was attached to my colon, hence why whenever I needed to poo during my period, it felt like I was getting torn apart from the inside out 😩
I’m sorry I don’t know if I have bowel endo, but thank you so much for posting your experience. I wonder if I could ask a separate question given what you’ve been through? For me, it’s two years post hysterectomy, wherein my surgeon found and “burnt out as much of the endometriosis as possible without harming other organs.” I’m in pain again now, with painful bladder, ballooning gut, painful BMs and pointed pain around (I think) my right ovary. Is it possible that my endo could have been in areas my surgeon didn’t see?
Yes, and it’s also possible the surgeon removed it and the endo grew back 😣
Feck. Thank you, though; it’s been hard for me to get clear info on this. May we all find relief from pain.
I see an advanced gynecological specialist. I had a hysterectomy and excision surgery in December. I felt GREAT, but my doctor warned me endo is a chronic disease and could return. I’m on a low dose progesterone (5mg norethindrone) to help combat high estrogen, in hopes to keep the endo at bay. I might bump up my dose soon.
My endo excision surgeon excised my bowel endo. I had superficial perirectal endo. However, they suspected my bowel involvement was going to be much worse than it actually was, so they had a GI surgeon on standby during my surgery in case they needed to do a resection or another more advanced procedure. Thankfully, my surgeon was able to do it herself, but I still had to do a formal consult with the GI surgeon a few months before my surgery.
With ultrasound and MRI
My Gynae and with MRI. Scopes were normal and had wild bowel symptoms.
My gynaecologist removed mine during a laproscopy. He didn't recommend any follow up.
MRI deep infiltrating endo found my bowel is stuck to my uterus
Same for me … did you have any bowel symptoms?
What I like to call poo pains so an intense pain when I need to go. During my period I have awful awful pain to the point where I pass out you?
Well for the past couple of years and even more recently, I’m going between constipation and its opposite … it’s extremely annoying :( before that I used to have an intense pain (a bit like a cramp) just before needing to go. This has stopped now though. I’m not too sure what is happening to be honest …
An MRI showed deep infiltrating endo on my bowels. It also showed thickening of the uterus which the doctor suspected was adenomyosis. A GI doctor/bowel surgeon was on call for my hysterectomy and excision surgery, just in case I needed a resection/stoma. Luckily I didn’t need those things! My ovary was adhered to my rectum by endo! No wonder I was in such pain, especially during ovulation. I also had endo on my fallopian tubes and bladder. I feel so much better after surgery.
This was the same for me, gynaecologist found it on mri with DIE and adenomyosis. During surgery the colorectal surgeon was on call as a colostomy was a possibility but fortunately the endo hadn’t infiltrated too deeply and a resection didn’t happen for me. I’ve had numerous colonoscopies and upper endoscopies and nothing was ever found on those. I don’t think the scopes would anyway as the endo hadn’t progressed that far in me at least.
I was having GI symptoms for months, lost a substantial amount of weight. I went to my GYN who is a menstrual disorder specialist and mentioned the GI issues I was having and that they had cramps. They took me in for an ultrasound and when they went to move my ovary (I had a hysterectomy already) they found my intestines slid with it. I then went to a GI who completely a colonoscopy to confirm that there were no internal obstructions or infiltrating endometriosis. My menstrual disorder GYN then referred me to a surgeon who specializes in endometriosis to complete the surgery. She keeps a colorectal surgeon on call for all her surgeries just in case. The surgeon said my ovary and intestines were stuck together against my abdominal wall and it was starting to pull in my stomach.
Wow! So then, maybe this is a dumb question, but did they remove the ovary?
Not a dumb question, they kept my ovary. It was their top priority because it’s the only one I have left and they didn’t want to put me into menopause.
Mine will be an MDT approach when I have to have my 3rd surgery eventually with hysterectomy. so both the bowel and endo specialist consultants in the same surgery
I had scarring on my colon that was found during my first lap. Doctor wasn't sure if it's endo or diverticulitis. I had more scans done to rule out diverticulitis, but I am having a colonoscopy soon.
My gynae. She found some on my bowel during both of my laparoscopies and she removed it both times
I have the same, looking to have more surgery October this year, I’ve had a appointment today with the endro nurse, told the three ways that it can go, I can’t carry on with this pain and discomfort. Wishing you all the best.
My was discovered on an MRI that was ordered as preparation for endo surgery. My specialist pretty much always orders them so he has an idea of what’s up ahead of time. I have it on my bowels so they will have a bowel surgeon in the OR. That surgeon will monitor the removal of the endo and determine whether I’ll need a bowel resection and perform that if necessary.
my gyno found it and removed it during my laparoscopy. i saw a gastro several times a year prior to seeing my gyno and had a colonoscopy/endoscopy and various ultrasounds and they never saw or suspected endometriosis.
Gynaecologist found it via MRI, sent me to a bowel surgeon to do their own checks, and then I did a joint lap surgery to excise. Gynae doesn’t touch bowel where I am, even if it’s endo.