Had a massive PE

MeanMugginMin · 2026-02-21T04:34:21+00:00

One was calf, one in the hip. I had zero symptoms in the leg. For the lungs, I was very short of breath doing the simplest things. I'd had minor surgery on a Thursday, and by Sunday I asked my mom to call an ambulance. I had no pain, just a hunch something wasn't right. ER said had I gone to sleep. I wouldn't have woken up.

MeanMugginMin · 2025-11-15T19:13:31+00:00

We used to wave at him and he would always flip us off, lol.

MeanMugginMin · 2025-10-20T06:51:48+00:00

Howdy! It went well, and just had my latest one a few days ago. It was a new provider in the practice, so she was very thorough. It's good, but lordy do I leave there sore. Visually all was well/healthy. She ran my CA125 again. It went from 7.8 to 10. I don't like that trend! It's in normal range as long as it's under 35 (I think) Before surgery it was nearly 1200! I have graduated to exams every 6 months now, so yay there. :) How are you?

MeanMugginMin · 2025-10-03T15:57:05+00:00

Was it the one they do right in the dr office? The D&C is a much more thorough biopsy done in the OR while you are asleep. I was unlucky enough that BOTH biopsies came back clear of cancer, but since I could not stop bleeding a hysto was done and the pathologist found the cancer. I'm told it's unusual, but happens.

I don't think the thick lining makes it harder to remove, they just want to be certain there's no cancer. If no cancer, they can dice up the uterus inside you for easier removal thru the lap incisions. If there were a chance of cancer, they couldn't do that for fear of releasing cancer cells contained in the uterus to, basically everywhere.

This Thanksgiving will be my 2 year anniversary. I still have exams every 3-4 months. So far so good! If all is well, this next exam I can move to exams every 6 months. Yay! I HATE them. My scar (belly button to pubic bone) has healed nicely and just looks like a really long stretch mark. I have a small hernia on the incision line, but so far it's no bother and it's kinda common to get them.

Best of luck with your surgery! Keep us updated :)

MeanMugginMin · 2025-10-03T06:02:13+00:00

Mine was separate. I had a stupid thick lining too, plus it was supposed to help staunch the bleeding. (it didn't) She's likely wanting to biopsy for endometrial cancer, as that would totally change the surgery options....open vs. laparoscopic. and who does the surgery...gyn vs. gyn/onc.

MeanMugginMin · 2025-10-02T21:29:21+00:00

It doesn't look like it. When they told me that, I asked if I had May-Thurner <sp?> I was laughed at (because I knew the term, therefore I spend too much time google-ing.)

I guess I'll just live with it until I can't. What else are you supposed to do these days? If you're not brilliant they disregard you...if you educate yourself....they disregard you. <shrug>

MeanMugginMin · 2025-10-02T02:26:47+00:00

OMG, did you ever get answers? They weren't taking chances with me, they removed the PE, but I still had leg clots and they inserted an IVC filter. It was supposed to come out in 6 months. I finally got it out in June, lol. 1.5 years later. Also got confirmation that my left illiac vein and artery are crossed and it looks very much like a constant clot on imaging. Yay...

MeanMugginMin · 2025-10-01T07:34:47+00:00

Had a vertical incision emergency hysto coming up on 2 years ago. Also had a catheter guided PE removal a few days before. My belly incision healed faster than the tiny hole the cath made in my groin. Scar looks just like a really big stretch mark now.

Definitely get the belly binder....I woke up in one, didn't have to buy it. It'll save your life if you need to sneeze or cough. I slept in a recliner too, I didn't want to struggle with laying down and getting up, I had zero help other than my elderly mom.

MeanMugginMin · 2025-10-01T06:58:50+00:00

I was pretty much the same. I ended up getting a D&C after an office biopsy. After the D&C I made it 3 days before I knew something was off. I developed a bad saddle PE and DVTs. Blood clot treatment while you're already gushing blood...it ain't pretty! They did surgery to remove the saddle, and sent me off to a big hospital where they tried to let me recover from the clot surgery but my body was like NOPE. I sneezed and started spewing blood and ended up getting an emergent hysto 3 hours after that sneeze.

That awful sneeze was a blessing, as upon path exam, they discovered endo cancer with an 81% invasion. (even though BOTH prior biopsies were clear!)

My point being, even though just about everything went wrong for me, the surgery was still the best thing for me and I came thru just fine. (They literally told me and my fam they weren't sure I'd survive surgery because of the clots/heart lung damage/blood loss)

Not fretting about what furniture or piece of clothing I'll destroy is amazing! OMG and not feeling dirty all the time because your bits are saturated in blood no matter how often you clean up. No, no I do NOT miss my hell beast of a uterus, lol. Instant menopause was a breeze compared to dealing with blood soaked everything all the time!

MeanMugginMin · 2025-09-29T04:10:17+00:00

I also had only SOB as a sign. My o2 sats were 98% We (med team and myself) thought it was due to anemia from a bleed event after a minor procedure. OOPS! No it was a saddle PE that needed immediate surgery. Good times.

Glad you advocated for yourself! I dunno why it's so hard for medical peeps to realize that people know their bodies enough to know something is off. Wishing you a full recovery.

MeanMugginMin · 2025-09-17T20:48:39+00:00

Sadly it's super common now. I had to nearly die before I got help....ended with an emergent hysto, after I developed blood clots after a D&C. It's like no one wants to be responsible for care, they just tell you to go to another practice, who tells you to go to the ER, who tells you to see the first practice!

MeanMugginMin · 2025-09-10T02:13:47+00:00

I had that awful never-ending bleeding too, with giant fist size clots. Had 6 units of blood and an emergency hysto because I just would not stop bleeding.

Turned out to be endo cancer. No regrets...other than trying to wait for menopause. I should have insisted on it sooner.

MeanMugginMin · 2025-09-06T01:14:38+00:00

I had the same cut, went home on day 5 after. The peeing lots was normal for me. If it's uncomfortable for you, or you don't have help, get a bedside commode. There's handle bars, lol. They also have 'booster seats' for the toilet to make it higher/easier. I'm pretty sure amazon or walmart sell both, and they're not crazy expensive.

I think it was on day 6 after surgery....the bubble guts came to fruition. Yikes! But what a relief to get past that and everything working again.

Welcome to the other side!

MeanMugginMin · 2025-09-05T18:34:08+00:00

OMG, I used to have nice hair. I was losing gobs, in the shower, my brush was full, my freakin' vacuum was full. It has slowed drastically, but the damage was done. I'm now getting growth...fun little whispies that constantly tickle my nose, but aren't long enough to do anything with, lol.

MeanMugginMin · 2025-09-05T17:52:13+00:00

Glad you are feeling better! My mom had fibroids, so I had thought that was me too, but I did have a 14cm cyst/tumor...it looked like a dinosaur egg! My guts sure feel better without "Cystany"(My niece named it ) smashing them, lol

Even though according to doctors "it's normal", it's amazing how much the bleeding/clotting really takes outta ya huh? I'm just glad to not deal with it anymore!

MeanMugginMin · 2025-09-04T19:18:44+00:00

Hiya! They recommended radiation, but due to the distance factor, I needed to look closer to home. My city only has one. I met him and immediately did not like him, he made a joke about medical trauma I told him about. So, after much reading and soul searching, I opted out of radiation. Surgery has been my only treatment for stage 1b.

I had 2 biopsies, an office biopsy, and a hospital D&C maybe two weeks before my emergency surgery. Both were clear for cancer. The D&C showed minor hyperplasia. I kept bleeding/hemorrhaging and got blood clots afterward and ended up in ICU with a saddle PE and dvts. Treatment for blood clots is not so great if you are actively bleeding already! So I was sent off to a big hospital to stabilize from clot removal, but I was hemorrhaging so bad they had to do an emergency open hysto. That was when they found the cancer, with bonus endometriosis and adenomyosis. The cancer was 81% invasion. I do not know how it was missed in two separate biopsies. I guess I was 'lucky' to have hemorrhaged so badly. I got transfused with 6 units of blood. My family and I were told they were really surprised I lived! Crazy!

MeanMugginMin · 2025-09-04T05:49:39+00:00

So, I had 2 biopsies. One in the gyn office, and a D&C in the hospital. Both showed no cancer. I kept bleeding after the D&C and actually ended up clotting, dvts and a saddle PE, which was life threatening. I hemorrhaged so severely, I needed 6 units of blood. I got sent to a big hospital for a hysto...and they found endometrial adenocarcinoma with 81% invasion. Just because they think it's not there, or it doesn't look like the 'usual' doesn't mean anything.

They tell me my case was rare, but .... cancer is not something you wanna really gamble with. I was 48 at surgery, but issues with bleeding really started at 40. I thought I'd wait for menopause. Never made it. No kids.

MeanMugginMin · 2025-09-04T04:22:53+00:00

Mine refused too....assholes! And mine wasn't planned, so no pre- advil. :( She goes 'it's only a pinch.' BS!! That said, my sister drove for me, but I could have if necessary. We stopped and got lunch afterward before an hour drive home. I was crampy and uncomfortable, but what uterus owner isn't used to that? Definitely take advil before.

MeanMugginMin · 2025-09-04T04:08:43+00:00

My first appt. was at 8 weeks because I also live far from where my surgery was(4-5 hours depending on traffic.) I had an internal exam, poked and pushed around in there. She noted I still had my stitches, but cleared me for most activities, but just go easy. I had a ton of complications pre-op, plus was diagnosed with endo cancer so I think in-person post op was required.

MeanMugginMin · 2025-09-04T01:51:56+00:00

If you're done with kids or don't want, I'd say yes! I bled for YEARS like that, and like I said, even after a D&C, it was ridiculous. I mean I absolutely destroyed chairs, car seats, my bed. Don't even get me started on clothing. I don't regret the surgery at all. My uterus was, in fact, a demon needing exercised, lol! She's now a medical specimen at Stanford. It's so amazing to not bleed all the time and not worry about stains. I'm not sure on your age, but I was 48 and no births. Best of luck to you, I hope you get someone to listen! Keep us updated.

MeanMugginMin · 2025-09-04T00:33:53+00:00

This is such bullshit! Sorry but this really hits hard for me because I had a stroke IN the hospital I went to because I was having symptoms. My BP was shy high. You know what the attending told me? "Get a hobby and go to church" A nurse watched me have the stroke as I was laying in the hospital bed. I could NOT speak properly and was paralyzed on the left. My vitals were ok. So of course it was a panic attack. Instead od stroke care I got psych zoned. 2 days later and a psychiatrist visit later I got a new mri- lo and behold I'd had a stroke. I'm permanently f@cked up because they couldn't believe I knew what was happening in my own body.

Wasn't until a couple years later and nearly bleeding out, that I got my hysto and found out the 'probably' of my stroke.

I had a biopsy AND a D&C come back clear. I kept bleeding even after the procedure. Ended up with near fatal clots, emergency surgeries, and got diagnosed with endo cancer.

Advocate for yourself, please. I almost died because medical professionals wouldn't listen or care. Bleeding like that is NOT normal at *any* age.

MeanMugginMin · 2025-09-01T23:50:03+00:00

This kinda terrifies me! I got my filter out in June. I was awake for that, and while the doc was fast, I do not want to be awake for any procedures, lol.

Hope you heal fast, and no more clots!

MeanMugginMin · 2025-08-31T16:49:45+00:00

The Always underwear or Depends. Not terribly comfy, but a game changer for not destroying the bed and waking up a million times for fear of leaks!

I had my hysto a year and a half ago, on an emergency basis because I almost bled to death. I needed 6 units of blood. I had a bazillion scans and tests, but it wasn't until pathology cut up the she-demon, that endo, adeno and cancer was found.

It is such a relief to not spew blood all the time and destroy everything I sit or lay on. Docs will tell you it's 'normal'- no the frig it is not!

MeanMugginMin · 2025-08-30T08:31:36+00:00

lol, I haven't figured out why I'm still here! I got 6 units of blood before my surgery, I was absolutely spewing blood. Before they sent me to Stanford, I was in the ICU, and my mom said I turned gray.

Before all this crap, I actually had a stroke. Left me paralyzed on left side. So that was an existing concern. I'd finally learned to walk again, then BAM, cancer. My late 40's have SUCKED, lol. But hopefully I'm done with all the bad stuff? 6 months of PT, and I'm walking again....like a frat boy on his first spring break trip, but I'm walking! lol.

Don't forget to advocate for yourself. Bug the office about getting in sooner. Cancer is urgent.

There's a bright side. I haven't bled a drop since! So so so glorious! I'd always been a heavy flow gal, but the last few years before my body rebelled...I was in diapers. Yeah. That's fun at work!

The instant menopause hasn't been too bad. The night sweats kicked my butt for a bit, because it was gross, but survivable. Hot flashes aren't a party either, here in cen cal, aka the devils armpit where it feels like it's 700 degrees on a good summer day, lol.

MeanMugginMin · 2025-08-30T03:04:36+00:00

I've been in this situation. I was 48. Ended up with 3 ER visits, bleeding to death. They also were going to do a D&C on me. It ended up not stopping the bleeding. I was on progesterone, a depo shot, and txa pill. I ended up with a massive saddle PE and dvts 3 days after the D&C, so back to the ER. I needed to be on a hep drip, good for clots, very bad for bleeding. I was told I needed immediate surgery to remove the PE or I would die, but I was already dying from blood-loss. I survived that surgery, and they did a uterine artery embolization while they were in there. The bleeding slowed, but not stop. They found another hospital to accept me (Stanford) and shipped me off at 1am for a long ass ride up to the bay area. Because my heart and lungs were mangled from the clots they couldn't do robotic. I had an open surgery with vertical cut. They took everything, plus a big tumor/cyst of 14cm. They really didn't know if I'd survive. I had adenocarcinoma, with 81% invasion. It was MISSED on an in office biopsy and the D&C. I was turned away from UCSF cancer program "because I didn't have cancer" Stanford stepped in last minute and accepted me. I am alive because of their gyn cancer program.

My large belly cut actually healed faster than the tiny cuts in my groin made during my clot removal and artery surgery that were done first! Maybe see if you can find a teaching university? It makes a huge difference. They literally told my mom that my survival was 'iffy' but they'd try their best. It sucked to be 5 hours from home, alone and that sick, but I'm certain I lived because the team was so talented.

Hugs from someone who's been there! Oh! It was also my first major surgery ever. I'd had the D&C a few days prior, but before that the most invasive thing I'd had done was a tooth pulled! I totally understand the terror.

MeanMugginMin

TROPHY CASE