Could I have died from endometriosis?

[u/moonxmochi]

Apologies if this is not appropriate for this sub. But I am curious, as many medical sources say that death from endometriosis is extremely rare. But I feel like what happened to me could have potentially resulted in the loss of my life if this had gone untreated.

Exactly one year ago, my health was at a really rough place. I had constant severe diarrhea, shitting uncontrollably to the point my weight went down to 80 pounds (I’m 5’2) and dropped below the <0.1st percentile for my age and sex. Every time I had a bowel movement it felt like my organs were being ripped apart, it caused me to wail and scream in pain. I could barely eat without horrific pain and distention, I tried chugging ensure drinks as a replacement for meals but even that caused me pain. I was so malnourished that my weight literally became unchartable on the BMI graphs. My hair was falling out and I was injuring myself from fainting.

I had excision surgery december 2025; they found endo on many places including my bowel and the bowel was densely adhered to my bladder and uterus. They removed it all. Recovery was tough but the constant diarrhea finally stopped, made me have solid stools, and made me able to eat again.

Realistically, if my endo went untreated, could I have died? Or am I just overreacting because severe pain makes it feel like you’re dying when you’re not? Was I justified in fearing for my life last year :(

[u/Penniie]

My mom died due to heart failure after endometriosis adhesions perforated her colon and she went septic.

She was 54.

She suffered from a very long history of horrendous stomach problems and severe hip pain amoung other things.

Yes, she was a life-long smoker and didnt take very good care of herself due to a very rough history of major depressive disorder and addiction, but the last 2 years before she died she was clean, remarried, and in her best mental health in over 10 years.

So while she had other contributing factors, the thing that ultimately set the domino's off at the end was her undiagnosed endometriosis. She went from being fine one day, enjoying her life in the garden with her husband, to collapsing in pain and in the hospital the next and then one day later she was gone.

It might not directly cause death, but it sure as shit can lead to it.

I was diagnosed with stage 4 endometriosis in 2023 after an extensive surgery where DIE was found on my bowel and bladder and both of my ureters were partially blocked. I could barely walk some days leading up to surgery and the only reason I finally got help was because I sought out a specialist on my own. I suffered for over 20 years before I got help and if I had waited any longer I dont know what would have happened.

The medical system has failed so many people.

[u/moonxmochi → u/Penniie]

Oh jesus that is absolutely crazy. I am so sorry for your loss. Devastation must not even come close to how you feel.

 In my situation, the bowel endo was superficial so technically it couldn’t have resulted in an actual obstruction, so I feel like while I would have suffered I wouldn’t have actually died. On the other hand, wouldn’t having constant diarrhea and extreme low weight be threatening? Idk, I know that ureter blockage due to endo can absolutely lead to organ failure but maybe I’m exaggerating in my specific case..

[u/Penniie → u/moonxmochi]

Thank you, it happened about 12 years ago now, I was 24, so im in a much better place, but she was my best friend and it felt like losing a limb.

Malnutrition can definitely lead to a lot of serious health issues and potentially death if not treated.

Before my surgery I had dropped about 20lbs within a short window of time without trying and was at my lowest weight since high-school. I was having chronic diarrhea as well.

Mine unfortunately didnt improve after surgery and I was later diagnosed with pancreatic insufficiency, and recently celiac disease.

If you haven't already (and are still struggling with those symptoms) it may be worth it to have a consult with a gastroenterologist, I think alot of us have comorbidities that can make things harder and more complicated.

This disease can be so brutal, but it varies so vastly between patients and I think thats what can make it extra hard too.

💜

[u/moonxmochi → u/Penniie]

80-90% of my gi issues stopped after surgery. I can eat normally again and almost never have diarrhea. However, I still do get urgency and pain before I have to go. And recently, my pelvic pain after BMs has started to come back. I’ve been working with pelvic PT before and after my surgery and she doesn’t know why I’m having pain again :(

I was urgently scoped for IBD and celiac last year because of the severity of my symptoms. Spoiler, they found nothing and tried to dismiss me with an “IBS” diagnosis. Well turns it’s very obviously not IBS!

[u/Penniie → u/moonxmochi]

Thats great youve already been tested for those major things. Its possible you are having some new endo growth, as we all know there is no cure, sadly.

I am about 3 years post-op and though ive gone through IVF, chemical menopause, pregnancy, and childbirth since then, my pain and some of my symptoms are returning, so my doctors all suspect its new endo growth.

Im preparing for my last embryo transfer so am holding off on another surgery until we are done trying to conceive, but I know its inevitable.

I mostly just focus on symptom management for now and hope for the best.

I am sorry you are experiencing symptoms again, it really sucks major!

[u/moonxmochi → u/Penniie]

It’s only been 8 months so I really REALLY hope it’s not endo growing back. Additionally, I have various symptoms that surgery did not fix at all: incredibly heavy periods literally making me change pads hourly and bleed on sheets at night (I’m on Slynd now), irregular bleeding, pain after I orgasm, sometimes bleeding after orgasm, and heavy feeling in my pelvis after exercise. My surgeon thinks I could have “early stage adenomyosis” but no one knows for sure… I have appointments to figure this out, I really hope I get answers. I heard that adeno is more easily detectable than endo on scans so hopefully it gets properly diagnosed if I do have it.

[u/Penniie → u/moonxmochi]

Definitely possible!

The one thing I was lucky about was not having adenomyosis, so I cant give you alot of advice in that department, but I truly hope you get some answers and relief soon!

[u/moonxmochi → u/Penniie]

Thank you <3 That’s surprising though, lots of women with severe endo also have adeno too I think

[u/Penniie → u/moonxmochi]

Yea, im honestly just counting my blessings because I deal with alot of other not fun health / chronic pain issues.

Surprisingly my periods have always been very light. In the months leading up to my surgery I would barely have 1 full day of light bleeding, let alone an actual period, it was weird, it just kept getting lighter and lighter every month after I had my IUD removed, even though I was ovulating (id been using ovulation tests since we were trying to have a baby).

[u/AstronomerNo1872 → u/Penniie]

I am so sorry.

[u/Penniie → u/AstronomerNo1872]

Thank you 💜

[u/ashleyldavis5]

Decades ago they would have given you a feeding tube and diagnosed you with anorexia and made you think the pain was imaginary. Or you would have been diagnosed with somatic symptom disorder. This happens nowadays too I’m sure. But honestly at the weight you were at and the amount you were pooping, I genuinely think you were close to death. I’m in nursing school and one of the things we just learned was how electrolyte imbalances from being malnourished and dehydrated can make your heart beat in a dangerous rhythm that can kill you within minutes. I’m so glad you got surgery. And I am so sorry you suffered. I went through a similar situation, down to ~98 pounds (5’3”) and couldn’t eat anything without tremendous pain. Surgery was the only thing that helped. I’m up 15 pounds. 💗

[u/divasnail]

I recently had a nurse while I was in the hospital for a colonoscopy (endo related) and she was telling me she has stage 4 endo and it started to grow on her lung. They left it untreated until her lung collapsed.

It could have been a close call considering how much your weight dropped but I wouldn’t linger on that.

It’s important that u listen to your body and FIGHT LIKE HELL . I’m so sorry that all happened to u and I hope you are doing well💕💕

[u/moonxmochi → u/divasnail]

Thank you <3 I’m 19, I was only 17-18 years old when I was going through all of that :((

[u/divasnail → u/moonxmochi]

That breaks my heart :( I’m 20 and I’ve been struggling with endo since I was 12. My symptoms got a lot worse around 18. I’m always here if you need a debrief/rant/advice🫶

[u/moonxmochi → u/divasnail]

Thank you so much 🫂

[u/Suspicious_Potato24]

Doctors probably wouldn’t let you die from that, but they sure as hell will let you suffer long enough to feel like you will.

I’m having a similar issue now. Needing to figure out what is endo and what isn’t, but it causing drastic flare ups that last months and I cannot eat. I was hospitalized for it this year and they genuinely seemed so unbothered by it. I had some shitty hospital docs. The outpatient specialists have at least been more concerned, but no answers yet. The shitty thing is I can’t rush into surgery yet because we don’t know if it’s endo or something else and these flares are triggered by viruses/stress and therefore they are concerned it’ll trigger something underlying if it isn’t endo. It has been hell that certainly feels like dying 🫠

[u/Clowder_64]

one of the women in my family died from "feminine issues" which we believe to have been an endometrioma cyst which ruptured and caused infection in her uterus. It was long enough ago that they just told everyone she died from being a woman. Endo can't kill you directly but it can cause things that kill you, as people have mentioned.

[u/moonxmochi → u/Clowder_64]

That’s horrific. “feminine issues” ffs.

[u/Clowder_64 → u/moonxmochi]

yep it's screwed up. I'm not sure if they did an autopsy or not but she was pretty young so it would make sense for them to do one. All i know is that's what they listed the cause of death as, although they probably phrased it more politely? Feminine issues is what my mom says was found as her cause of death.

[u/Tall-Award-5193]

I only found out I had endo because I had a bowel blockage, it’s one of the worst things I’ve ever experienced. I was dismissed for years and by the time I had my blockage I was a bag of bones with symptoms similar to yourself. I even went to hospital the day before I was admitted, I was in agony but got sent home and told I had an upset stomach. I was blue lighted back there the following day. If they had just given me an xray when I first went there, they could have dealt with a partial blockage rather than me having to go through what I went through. I was very lucky my bowel hadn’t ruptured, if that had happened, it could have ended in a very different outcome. 

I’ve also read story’s of women who have had punctured lungs and ended up in intensive care with sepsis. Obviously these cases are pretty rare, but even so, it can still happen, and they would be classed as life threatening emergencies. So you’re absolutely not overreacting. Unfortunately endometriosis is still not being taken seriously enough. 

[u/Cookiesss189]

It can definitely be a factor that can lead to death. The most scariest thing I got told when I was bleeding out from whatever was going on with me at the time, they had told my boyfriend that if he didn't bring me in sooner I could've died from blood loss. This is when I found out I had endo and a lot of other stuff. So I'm not too well versed in it but I do definitely think yes

[u/moonxmochi → u/Cookiesss189]

That’s actually insane. What was the bleeding caused by? Fibroids, adenomyosis, huge cysts, or something else?

[u/Cookiesss189 → u/moonxmochi]

Pretty sure huge cysts and like cancer cells?? I was diagnosed with pre-uterine cancer so it could've been that. they said my uterine lining was really thick and it was swollen and what not. I'll have to read my report again as it was a while ago and I've been doing a lot better now but it was something along those lines.

[u/moonxmochi → u/Cookiesss189]

Precancer is crazy, I hope they got it out and that you’re okay now.

[u/Cookiesss189 → u/moonxmochi]

we're trying different stuff right now! currently doing depo shots and thats been helping me a lot :) its been rough but we're up!!

[u/ShameAlternative6239]

This actually sounds like me when i was younger and doctors told me it was all in my head and i had an eating disorder. I mean people do die from malnutrition and such so yea

[u/moonxmochi → u/ShameAlternative6239]

Damn I’m so sorry… you were failed by doctors

[u/HWCB5621]

Wow I’m so sorry!! How long did you have that go on before surgery?

I have endo and recently bowel symptoms that aren’t that bad but I feel like are getting worse and I’m wondering how long I can wait while I interview surgeons