r/Endo

I have surgery scheduled and am making my travel plans. my options are (1) a ten hour drive or (2) a 2 hour plane ride, which door to door is actually 4.5 hours of travel. I’m curious as to what others have done or recommend (this is my first endo surgery).

While the plane is faster, I’m leaning towards driving because (1) it allows me to bring my dog, who is always a great source of emotional support (2) will allow me to have more control over my schedule and when we decide to depart (3) won’t have to navigate crowds or walk through airports, can stop at a gas station and walk around as needed and (4) planes make me gassy and I can’t imagine how much that would be exacerbated after surgery.

My partner will be coming with me and can drive the ten hours without assistance. He will also be with me if we fly and will take care of luggage.

What do y’all recommend. Am I delusional for thinking a ten hour car drive is preferable?

After my excision in Sept 2025 (they found “quite a bit”) I rapidly began developing the following symptoms:

- Tinglings hands and feet

- Painful feet

- worsening sciatica

- constant muscle tightness

I know it’s nerve related because I got the tests for it. I have tarsal tunnel and sciatica. But it isn’t getting better at all and frankly I think it’s getting worse. Some days I have trouble walking. Could this still be related to endometriosis? I found articles saying so. Like endometriosis can relate to nerve issues.

The back pain and occasional leg pain have been here for years. But they did get worse. I don’t know what to do or what to ask my doctors.

Anyone else find that coffee will cause a flare up?
Just spent the last 2 weeks in a lot of pain constantly, had my period during that time too, and I stopped drinking coffee on Monday and have been 90% pain free for 4 days
I had tried some sort of an anti inflammatory diet prior and didn’t notice a difference, even drinking green tea and peppermint tea never usually helped either

Has anyone else found any other trigger foods? I don’t think it’s the caffeine cause I’ve had coke during the week and have been fine

I had been on Mirena before but the emotional rollercoaster it put me on was awful.

So I decided to switch to the Kyleena because my endo symptoms are even worse on my period, but now I’m thinking of taking THIS iud out and going back on the pill even though the pain and the bleeding is horrendous.

I just don’t know what to do anymore. I feel disgusting and horrible in my own body.
I went from 48kg to 62kg in less than a year and I have never had worse self esteem.

I was also diagnosed with an allergy to progesterone so I’m on antihistamines all month.

Any advice and did anyone else gain weight in Kyleena?

I was also on an OCD med that made me gain weight so I am trying to see who the real culprit is.

Thank you!

The main reason why some women have chronic pain after surgery (after previously having NONE) is because of adhesions and scar tissue.

Now I'm doing research into NaPro doctors who are ringing the alarm about adhesion prevention. The surgeon I'll be seeing in June isn't NaPro, but a highly skilled, highly recommended endo specialist.

He mentioned some things he does to prevent adhesions (films like SEPRA or Interceed, and pelvic floor therapy) but apparently that isn't enough sometimes. Latest thing on the block is pelvioplasty and many other treatments to stave off adhesions and scar tissue.

What did you doctor do to keep adhesions and scar tissue to a minimum?

At the gyno because of an ovarian cyst and could only get in to see an older man….. I am a 22 year old female who is often told I look like I am 16…

Anyways the first time he examined me a few weeks ago he made a comment about how he sees a lot of cheerleaders with ovarian torsions … weird but ok?

Then for today’s appointment he buttoned up & zipped my pants for me , then told me I need surgery for endometriosis and comforted me while I cried. Before that when doing the exam for my abdomen he said I have nice abs?Then he drew me a pic to take home & signed it explaining what was going on with my body. A nurse was there the whole time.

Thoughts….

Good morning everyone (or good evening wherever you are in the world)!

I'm currently waiting for a diagnostic laparoscopy. It's been cancelled and rearranged four times now, but with everything crossed it should be going ahead next Tuesday, 26th May.

I've been thinking about the symptoms of endometriosis, particularly recently of course, and I just wondered if I could speak to some of you who have experienced this themselves.

So one of the pages I read about symptoms included "pain during or after" particular things, including bowel movements, urinating, and having sex. But it never specifies where the pain is often felt. I do get pain after these things, not during, but when I read these pages I assumed they meant you'd feel pain for that specific issue in that specific area (eg painful bowel movements = pain in backside, stomach, etc). But for me, the pain is at or in my uterus. The pain is where I would normally feel period pain/cramps.

I just wondered if that's what the pages meant, or if that's not really a universal thing. My chronic pain is always in and around my abdomen, lower back, hips, sometimes my thighs - but after the three examples listed above, the pain is almost always in my front lower abdomen. I feel period-like cramps.

Does anyone else experience pain during/after these things, and if so, where do you feel the pain? I need to know if anyone else is the same as me!

Hi everyone,

So I’ve been having extremely heavy periods that started back in December. I pass multiple clots daily on my period & became severely anemic during that time with a hemoglobin of 7.6

Just did a pelvic ultrasound and it showed nothing. No ovarian cyst etc.

I’m wondering what this could be? I really want to find the cause :/

I just had my excision surgery Monday, my surgeon was called into another surgery right after mine but he called my husband and told him that he found some small endometriosis but none of it was deep infiltrating and that he checked everywhere and is confident none was left behind. He also found dilated ovarian veins that he ligated, a small ovarian cyst he removed ( found to be an ovarian cystadenofibroma), and a partially dilated ureter of unknown cause. He performed a peritonectomy on several areas and removed some adhesions. I got my pathology results, and none of it is positive for endometriosis, rather every single sample aside from fallopian tubes is marked either fibroconnective tissue or fibromuscular tissue, so basically scar tissue. I'm spiraling a bit, how can this be when I'm in so much pain and the dr saw what he believed to be endo? My surgeon said the scar tissue was likely caused by complications from a surgery 20 years ago and that the removal will likely still bring a lot of relief as well as the vein ligation... but i can't help but feel the surgery was pointless? I so desperately need this to have helped my symptoms 😭 plus I spent so much money and have disrupted my family's lives so much to have this surgery and now I feel like it was all for nothing...

Has anyone had a surgery where over a dozen pathology samples came back with only scar tissue? Were your symptoms resolved or lessened after the removal? Has anyone had dilated ovarian veins ligated and did that help any symptoms?

So happy I could cry. I would gaslight myself a lot because I didn’t experience the amount of pain that I feel a lot of women experience. Had pain but I could still manage through it.

Currently in the car after being discharged from surgery. Went in for a hysterectomy + laparoscopy and the doctor said I had a lot of endo that he cleaned up. He gave me pictures and will have more of an update at my 2 week post-op

It just feels so validating because i always told myself “maybe this is normal. Maybe im overreacting” etc etc

I’m just so happy 😭

I know many mean well, including dietitians, nutritionists, and women’s health advocates, but is anyone else EXHAUSTED by endometriosis constantly being lumped together with PCOS when they’re fundamentally different diseases with different mechanisms, symptoms, and treatment approaches?

Yes, endo and PCOS can coexist. Yes, both affect women’s health and hormones in different ways. But it often feels like combining them into one conversation often oversimplifies both conditions and spreads misinformation.

Does stage 3/4 suggest that it grows back faster or that it just has been growing inside me longer? Like if I have stage 4 am I less likely to be part of the 60% where it doesn’t grow back? Also are all the people in the 60% taking BC cuz I don’t wanna.

Hello I am currently scheduling appointments with specialists to try to get diagnosed and get help. Wanted to generally ask if these symptoms could be endometriosis related as I had gone to a general doctor about 1 year ago but they didn’t do further testing to confirm/deny endometriosis. I’m a female age 21.

Ovulation:
Burning pain in breasts, especially left breast and is deep in tissue. Can burn for 10-30 minutes to the point I’m wincing and just clutching my body.

Period:
Overall heavy flow, can go through super max tampons in a few hours. Always need to wear tampons and pads combined to not bleed out. Pass several large blood clots often 1.5-4 inches.

I have about 1 episode per menstrual cycle:
Extreme hot flash comes on, sweating, shaking, dizziness sometimes even fainting, running to bathroom, combined bowel/diarrhea movement, extreme constant pain for entire episode to the point I cannot move and lay on restroom floor, nausea to the point of needing to vomit.

Episodes last approximately 1-1.5 hours and only after am I able to move but extremely exhausted.

Tylenol seems to do nothing for my pain, ibuprofen sometimes helps.

Outside of these episodes, the rest of my period is “normal” with some more painful back cramps, sleep deprivation, and heavy flow.

General info:
General fatigue/exhaustion (may be stressed related)
Anemic, last ferritin level was 9 ng/mL other labs seem relatively normal

Please let me know if anyone has similar symptoms?? Or any other recommendations on what this could be. I can’t tell if this is normal period symptoms or not. I do not seem to have the other symptoms people with endometriosis have (painful intercourse, infertility, pain in peeing/bowel movements normally). My old doctor told me my problems are just due to anemia/normal period so not sure what to do. That being said we did no endometriosis specific tests.

I feel like i am spiraling slowly but surely into depression i dont know if its mirena or everything else.
I used to be so active, i was about to get my first ever pull up. Cycled 15 km every single day to work. And then i got worse and worse.
I pushed through my apprenticeship. Finally found a job direction that i might actually like. And i cant even pursue it because it requires you to go full-time (40h). Man i cant even go to work full time, I will be forced to get back into an office that I hate over everything just so i can work part time. I am only 20... that was supposed to be the peak of my life, i was planning to move out finally, start my life with my boyfriend but i cant even earn money and nowadays its hard for one person to provide alone. I can't even go after my hobbies. I am trying everything, i tried so many hormones. Trying to go gluten free, trying this and that and nothing seems to work. Sure i am less bloated eating gluten free but the pain and fatigue is the same. It doesnt make it easier that my dad where i am still living couldn't be less understanding. Told me to just start working 40h, everyone does it, i am just not used to it anymore, my body will get used to it...

I got endo excisioned. But adeno remains. My country forbids it for someone below 25 to get a hysterectomy. 5 more years I guess..
The worst part is that i used to be depressed, i used to be down bad because of trauma and lots of other stuff. I finally, finally got out of it. Told myself everything will be better. And it was. I actually was happy...And then everything started to go down, i really dont know if i can go through this a second time.

Hey guys I am anxiety spiraling and wondering how embarrassed I should be. Apologies if this post is not acceptable for this sub.

I had an appointment with a new endo doctor/surgeon today and she was very kind and friendly which made me let my guard down a little. While doing my pelvic exam (which is already awkward) and she casually asked if I was 26. I am 36 and immediately responded “oh girl, you are too kind, I wish!”

Now that I am home sitting in bed and flared up with pain it feels like a constant reminder of my appointment and I can’t get that comment out of my head. It feels like it was way too casual and I am really hoping it didn’t come off as demeaning. She is a doctor! Not some girl I’m chatting with at a bar. I feel so silly and feel like I may have been disrespectful. I have pretty bad anxiety and I strongly suspect some mild OCD so I’m having a hard time letting this go.

EDIT: thank you all so much for your positive and kind comments! TBH I’m a little overwhelmed - this post blew up way more than I thought it would. I am going to try and respond to comments asap but if I don’t respond to you please know I appreciate you and my anxiety is probably just getting the better of me haha

Sigh.
Monday 11/5 I stroll into hospital for my routine pain management procedure and 2 night ketamine infusion. Dorsal root ganglion block and pulse radio frequency of my sacral nerves. 4th time doing this, I get it done approx every 10 months bc unfortunetly there’s no permanent fix.
Anyways been through this before, it all goes off without a hitch.
Wednesday 13/5 @ 2am I get the most sudden worst headache of my life and oh my god I cannot stop shaking. I’m afebrile (had Panadol codeine a couple hours earlier) they throw diazepam and tapentadol down my throat. An hour later the shakes have settled and the headache is at about 50%. Now I’m tachycardic. ECG is done, doctor thinks I may be dehydrated. IV fluids are started and I’m able to go back to sleep. Just before 7am the shakes and headache start again. This time I have a fever, hypotensive and my heart rate is well and truely through the roof.
Sepsis protocol is done and I’m started on 2 different IV antibiotics. Obviously I’m not being discharged today!
Fast forward a couple days we have the blood culture results - My sepsis is caused klebsiella pneumoniae, gram negative. This is super weird apparently. This rules out the sepsis being caused by my procedure. It lives in the gut/bowel and bladder. Urine test and culture was clean. I have no other GI symptoms. The doctors are puzzled.
I spent some time reflecting that night. I had my second lap for my stage 4 endo done in early 2024. My endo plagues me with lots of adhesions. In this surgery they had to unstick my bowel from my vagina which was all stuck to my pelvic wall. They also shaved a spot off my rectum and unstuck the rest of me.
I think about the really horrible ripping sensations I’ve had over the past couple of weeks. However because my previous nerve procedure was wearing off I didn’t give it extra thought. I just continued popping my pills and getting on with life.
So I think - could my sepsis be caused by my endo?
The infectious disease doctor comes in the next day and tells me they’ll need to do a pelvic mri to see if they can’t find the source of the infection. I pose the questions to him - could an adhesion or lesion caused the start of the infection which lead to my sepsis????
I was not expecting him to be very enthusiastic about this possibility. Explaining that yes this is why they wanted the pelvic mri, because an adhesion could’ve made a micro tear in my bowel.
So now I’m waiting for these MRI results. I’ve learnt that my pain tolerance is way too high and it’s definetly dangerous.
I’m so glad I was already in hospital when this started, as it was purely a coincidence. As a nurse I would’ve just treated my fever/headache at home. Who knows how sick I could’ve gotten before I decided to seek help. And it could’ve been too late too.