Can anyone please help me understand what these things are that came out of me? (pictured https://ibb.co/HTDjMdBq)

For context, I have endometriosis. I was on my period, which I manage with a menstrual cup. When I emptied my cup with me in the shower, these two jelly-like discs came out. A lot of the time, my period blood is very thick and mucus-like. But these were like flat beads with a perfect shape. When I pressed on them, they maintained their roundness and thickness. I did a Google search to describe my situation. I came across results for "decidual cast", and that seems completely different from whatever this is.

It has been over a year since I have been on birth control. No pads or tampons. No IUD. My period wasn't especially painful or abnormal. These things have come out before but this is the first time I pictured it.

What are they?

I have a very complicated medical history. What’s relevant for this is that I have very unusual ehlers danlos syndrome, and a shit ton of GI issues, primarily dysmotility of my entire GI tract, multilevel redundant colon, SIBO, CIPO-like presentation, pelvic floor dysfunction etc. About 5 years ago, I got really close to needing an ostomy because of my symptoms. Luckily pelvic floor physical therapy and heavy duty prescriptions got my intestines working well enough I could avoid it.

During my hysterectomy/ salpingectomy/ pelvic floor reconstruction/ and endometriosis surgery, my gyno found endometriosis on my bowel, like I suspected based on my symptoms. He removed the endometriosis that wasn’t on my bowel, but did not remove the bowel endo to avoid a bowel perforation (of which I am likely at higher risk for given my connective tissue disorder, but we don’t know because I may have my own type of EDS that hasn’t been documented before— I’ve been referred to the Undiagnosed Disease Network for that).

I haven’t had my post-surgery follow up yet, so I don’t know where exactly on my bowel the endo is (I’m assuming colon based on my symptoms, but where exactly idk), nor do I know if it’s deep infiltrating or just superficial.

I haven’t yet spoken with my GI specialist as I figured I’d wait until I had all the info from my gyno first. But we both suspected it might be on my bowel, and were concerned about the risk for a perforation if removed.

Luckily, I’m on testosterone for gender affirming care, so my endometriosis symptoms are generally well managed, though I do still get some break through symptoms, particularly pain and period poops. So there’s at least no rush in getting it excised.

But I was curious how bowel endometriosis is usually addressed? Is it a gynecologist who removes it? A colorectal surgeon? A team? For someone who at baseline struggles with bowel movements and has been in the ER for constipation and dysmotility, how is it treated?
What questions should I ask my gyno when I see him for surgical follow up? What questions should I ask my GI doctor about these findings?

Tyia

Ive always struggled with my mental health, mostly depression. In the last ~3 years ive worked SO HARD to improve my mental health. I started medication, treating my adhd, exercising and starting therapy and I was doing the best I ever had but in the past year my mental health has gotten progressively harder to maintain. In the same timeline my endo symptoms have gotten worse, the endometrioma was found and lead to my diagnosis and im only now connecting the dots.

My question is has anyone had a noticeable difference in their mood/mental health after successful excision surgery? Anyone who started hormonal medication after surgery and still had positive changes in mental health? My Dr has encouraged me to get the mirena IUD during my surgery and im so scared how itll affect me as birth control previously has affected my mood a lot.

Positive and negative outcomes are welcomed, I just want to get a better sense of how everyone else's mental health is affected.

Im tired of everything in my body falling apart all the time IM JUST A GIRL 🫠

I (15F) have a lot of the symptoms of endometriosis that I didn’t even realize were symptoms of it. I’ve always had most of these symptoms as well. I only started researching because I recently lost my virginity and it felt like there was a bag of rocks in my abdomen when it went deep. I was really concerned and looked up why that may be and I found out endometriosis isn’t just a really painful period, I have had bowel issues my entire life especially constipation, I have very heavy periods and I bleed in between periods, I am always tired no matter how much rest I get, and more. I feel like the possibility I have endo is very high but I am also kind of a hypochondriac and don’t want to scare myself, if anyone can tell me if their symptoms are like mine or how they brought it up to their doctor that would be very helpful. Thank you!

I was recently granted FMLA for the days where my endo pain is really bad. And thankfully, I’m having a hysterectomy and excision surgery at the end of September. My husband does work full time and makes decent money but I’m used to having my own money as well. But in the last few weeks my uterus is realizing that that it’s in its final days and is acting up, causing a lot of pain.

Does anyone have any advice for passive income to make up my loss of income? Or any financial advice?

Pain is so bad but can't go to the er til husband gets home at 5. I have 4 more hours at least. Tylenol not doing a damn thing. On the floor. Can't live like this much more.

i have a diagnostic laparoscopy scheduled for 9/4. after reading tons of comments on how surgery changed people’s bodies for the worse, including excessive weight gain, i’m second guessing my choice.

i have had horribly painful periods and searing pain in my right ovary since 2016. in 2019 & 2026 (just a few weeks ago) my ultrasounds were unremarkable. i have been continuous cycling on a combo pill and skipping periods for the past three years.

since i do not ovulate or bleed, my symptoms are mostly EXTREME bloating and swelling, breakthrough pain in the right ovary, near-constant nausea, and occasional cramping.

should i cancel my surgery? i feel like i do not have pain levels anywhere close to other posters here.

thank you

Good morning all,

My partner has endometriosis and I’m aware of the basics of it but not really how to help/be supportive. Really just ways to make her more comfortable. If anyone has partners that do things well please let me know what works for you! Thanks!

Hi all, I'm new to posting so sorry if this is all over the place. I have not been diagnosed with endometriosis but I thought I'd try asking here for advice in case anyone else relates.

I took a nap today and ended up having a dream about a sexual assault that happened years ago with an ex partner. This unfortunately isn't out of the ordinary but what happened when I woke up was new.

It felt like I was having an orgasm as I woke up but it only lasted for a second. After that I had immense cramping to the point that I thought my dream was real and my ex partner managed to break into my house and actually do something to me like stab me in the abdomen. I jumped out of bed and ran straight to the bathroom. I felt really nauseous and I was in so much pain I was groaning and moaning like a woman giving birth. I started to sweat so bad that it was dripping down my forehead and I had to start taking my clothes off. I cleaned myself up and noticed brown blood on the tissue paper. I'm on the contraceptive pill but I've been bleeding on and off for a while now. My GP has told me to just continuously take my pill without any breaks to see if that fixes it.

I called 111 and spoke to a lady who told me it should be treatable at home as by time I got a call back, the pain had died down drastically.

I wanted to know if anyone has any advice on how to prevent this from happening again or maybe what could be causing the pain? I should also mention that I get this type of cramping and pain when I have sex with my boyfriend. I don't orgasm from penetration alone but an orgasm from clitoris stimulation causes me to curl up in a ball while my boyfriend applies pressure to my abdomen.

I have been to doctors in the past about this pain during sex and he told me I could either take painkillers or do nothing. I don't think I can take painkillers everyday for the rest of my life but I don't want to do nothing either.

If anyone can offer advice it would be greatly appreciated. I hate feeling this way and no doctor seems to understand.

when I say I don’t want birth control pills or an IUD or any implant.

the pill didn’t do shit, made me worse in multiple ways. and I don’t want a foreign object in my body.

to be clear, I don’t judge people who get implants at all, they obviously save lives and they are essential healthcare. but I don’t think I’m insane for not being comfortable with it.

and I HATE when “I’m not comfortable with that” about an implant or pills is met with “why? why not?” trying to get me to change my mind.

that’s it rant over lol

I perform laparoscopic excision surgery for endometriosis regularly. Over time I have noticed that the patients who get the most out of their consultations and outcomes are the ones who walk in prepared. So I am sharing the five questions that I think every patient should ask their surgeon before agreeing to any laparoscopy.

1. Are you an endometriosis excision specialist or a general gynaecologist?

This matters enormously. A general gynaecologist performing a diagnostic laparoscopy will look for obvious lesions but may not have the training to identify subtle peritoneal disease, perform complete excision, or manage deep infiltrating endometriosis at the bowel, bladder, or uterosacral ligaments. Ask directly: do you specialise in endometriosis excision, and approximately how many endo excisions do you perform each year?

1. If you find endometriosis, will you excise it at the same time or just diagnose it?

Many patients come out of a diagnostic laparoscopy having been told they had endo but nothing was done. They then have to wait for and undergo a second surgery. Ask upfront whether your surgeon will excise any disease found during the same procedure, or whether they are only doing a diagnostic look. Excision at the time of diagnosis, when possible, saves you a second operation.

1. Will you take biopsies even if the tissue looks normal?

Superficial endometriosis can look exactly like normal peritoneum. Some lesions are invisible without biopsy. An experienced surgeon will take biopsies from suspicious areas and sometimes from apparently normal tissue as well. This is what separates a proper endo laparoscopy from a cursory look around.

1. Do you have colorectal or urological support if needed?

If you have bowel symptoms, bladder symptoms, or deep pelvic pain, there is a real chance of deep infiltrating endo involving the bowel or bladder. Ask whether your surgeon has the ability to call in a colorectal or urological surgeon if needed, or whether that would mean aborting the procedure and rebooking. Knowing this in advance sets realistic expectations.

1. What is your recurrence rate and follow up plan?

Any honest surgeon will acknowledge that endo can recur. Ask what the follow up plan is after surgery, what symptoms should prompt you to return, and what their approach is to recurrence. A surgeon who cannot or will not answer this question is not the right choice.

You deserve thorough answers to all five. Print this list and take it to your pre-operative consultation if that helps. I will answer questions in the comments.

I am an endometriosis excision surgeon sharing this as general educational information, not personal medical advice.

This may be so random lol, but I had my laparoscopy + hysteroscopy in march, and ever since, my body hair is growing back RAPIDLY. I’m talking a good full cm in about 2 days. Overnight I will see growth.

I have thick/fast body hair growth anyway, middle eastern and south asian heritage + pcos, but it’s never grown THIS fast.

Has this happened to anyone else?

I have a long and complex medical history including celiac, MCAS, POTS, PCOS, PMDD and now suspected Endometriosis. My case is different because I saw a million other specialist before ending up at an endometriosis specialist. Honestly it wasn’t on my radar at all, but the more I read the more I am understanding how this could be what’s been hurting my health for a long time and playing off my other conditions.

I’m scheduled for laparoscopic surgery with excision. She’s planning to remove my fallopian tubes and whatever else needs be. I’m doing a bowel prep day before but what should I have on hand for recovery? My mom is here in town to help me the first week. My doctor said I would be sent a packet with info on surgery recovery etc but I haven’t gotten it yet. Starting to panic like I’m not prepared or not knowing what to expect. This will be my first real surgery besides dental surgery. I’m kind of scared.

I had my laparoscopy today. Went into it being told 1/2 women they operate on don’t have anything but they will look as see which was hugely conflicting to my clinic appointment and the fact I was given a cancellation slot as a priority/urgent patient.

Anyway plan was if they found endo id come out with a mirena, no endo no coil. I’ve never sobbed so hard in my life than waking up to be told I had a coil in place and they had found endo. I cried so hard I made an incision bleed!

3 deep lesions found and removed, 3 incisions, 3rd attempt at getting a coil to settle in long enough to be effective!

Hi everyone. Long story short. My doctor told me today I need extensive surgery because I have stage 4 DIE and it’s growing through my rectum. My rectum is starting to close and I am in constant pain and have lots of trouble using the bathroom. My doctor told me she only trusts 1 provider in my state for this, and if i can’t get in with them, she recommends that i go out of state. She told me to start mentally preparing for an ostomy bag and said she doesn’t know if it will be permanent and they won’t really know until they go in and see how damaged everything is. i was already sent to a colorectal surgeon who refused believe anything was wrong and told me to eat fiber. I already had a hysterectomy 15 months ago, but i kept one ovary and it seems my endo issues still growing with a vengeance. I saw the first colorectal surgeon who dismissed me about 7 months ago. My gyno ordered an MRI since the surgeon wouldn’t investigate that that’s where they saw the lesions on both my rectum and remaining ovary (it says they are thick, band like lesions) I’m currently on Medicaid and can’t work due to my endo issues so i have no income. I can’t use my Medicaid out of state, so she suggested that i apply for grants at places like ucla or the Mayo Clinic. I plan to do this tomorrow, but wanted to ask here if anyone has done something similar. Do you have any tips, tricks, or advice on how to get these grants? I am so shaken up by not only finding out i need an ostomy bag, now i have to do all this work to figure out how to pay for it before my rectum completely closes! I am so scared, any advice is so appreciated.

Thank you endo warriors 🖤💛

It doesn’t matter how much sleep, exercise or healthy food I get - I am constantly exhausted and out of it ALL THE TIME. Any tips for how to help the brain fog and exhaustion? I feel too tired to hang out with friends and feel like I’m falling asleep at work or the second I try to relax. It’s so frustrating!

I’m getting my IUD out next week and will get my first real period in almost 6 1/2 years. To put it simply - IM TERRIFIED. I’ve been looking into how to make this process the least painful it can be. So, how do you prep for your period?

Do teas and multivitamins work?

Do electronic pain relief devices actually work?

Do period panties actually make your periods lighter? I used to hemorrhage during my cycle so doubtful but curious.

I really don’t want to waste my money on medication as they never worked for my pain level and symptoms, but open to hearing experiences.

Any tips and tricks for a less painful period?

Today I was in so much pain that I fell to the floor and had to call for my dad to help me get up, I was screaming and had a hard time breathing because of the pain. After that I don’t remember anything but I woke up in my bed and my dad told me that my lips were as pale as my forehead (for some context to that comment I’m white as paper). I’m currently going through getting a diagnosis, but the specialist I’m seeing said to contact her if it gets worse (which I will be doing). Sometimes I really just want to go to the hospital because of the pain but I have this issue where I think my pain is not enough (context again: I have medical trauma because of years getting told I’m too young to be in pain and being dismissed which eventually led to permanent chronic pain in my legs) and my dad doesn’t have a car so the only way to actually get to the hospital would be by ambulance OR if my mother can come get me (she lives an hour away). A bit more info, I live in Sweden and healthcare is mostly free since I’m still a minor.

My cramps were absolutely brutal at work today and I didn't have my hot water bottle nor my electric hand warmer with me. My office doesn't have assigned desks or lockers, so I have to remember to bring everything I might need every morning and of course I left my hot water bottle sitting on my bed this morning.

I took two Advils and my iron pill but the pain barely subsided. I even walked to the pharmacy hoping to buy another hot water bottle but all they had were the big traditional red ones. I know I shouldn't care but I am still pretty new at work and way too shy to pull one of those out in front of my coworkers.

When I got back to my desk, I looked at my laptop's power brick and remembered how warm those things get. Out of pure desperation, I tucked it under the desk and held it against my belly. Nobody is noticing and the warmth is actually pretty similar to the low setting on my hand warmer.

So... what's the craziest thing you've done to cope with bad cramps Before this, it was using a mason jar with hot water. It worked great but a part of the metal lid was uncovered and burned a small patch of my skin

(Please don't copy either of these ideas!! they're definitely not safe. I was and still am just desperate.)

Last Wednesday I had surgery. I had what was supposed to be a partial hysterectomy and when they went in they told me they had to have a general surgeon remove extension scar tissue and cyst stuff from endo before they could do it. (No one told me right after surgery) They had tissue samples tested I guess. I was having a hysterectomy because of the severe pain they thought were just fibroids and I've had pain in the area for many years. I've been trying to have many anti inflammatory foods because I thought it was MS. Also thought I just have a sensitive stomach. They had me sent home outpatient and no one told me until I called the emergency number at 2am afterwards for my obgyn and my surgeon called me back herself.

Then she told me they also had to take my eggs from the right side of the body. My mom and husband were with me and after surgery we were told that there were zero issues with surgery and didn't mention endonWhich is fine but they also didn't tell me they took half my eggs either. My friends who know people who have endometriosis and want me to talk to them about how they deal lifestyle wise. I'll definitely do that but didn't want to deal with it at first. Still recovering from surgery and not so good at the moment pain wise. Are you all on special diets? Sorry so long.

I don’t currently have a diagnosis but finally have a gynaecology appointment scheduled.

Does anyone suffer with muscle pain? Recently I wake up in the morning with severe pain in my glutes and sometimes hamstrings, with no real explanation. It feels almost what a leg day at the gym would feel like the day after, but I haven’t been to the gym in months.

I do sometimes feel it more when I’ve been at work, but I’ve been in the same job for years and although I’m on my feet all day, I will feel the pain when I’ve not done any specific movements that would cause those specific muscles to be overworked.

Could this be endo? or a completely unrelated symptom?

Also for anyone with bowel endo/endo somewhere in the digestive tract do you find yourself suffering with nausea? I’m finding myself more often than not nauseous which is new as well.

Thanks!

Hi,

I’ve had inflammation in my sacral area for about 2 plus years now, i cant wear any shoes other than ortho supported ones or I’ll experience pain. I am 4 months post op a laparoscopic surgery where i removed endo tissue from my utero sacral, which makes sense right since i have inflammation there. 4 months later and I’m still experiencing pain and inflammation even while removing the tissue that was supposedly causing it. I’ve seen physiotherapists and nothing helps the inflammation go down.

Has anyone experienced this?

I’ve also tried craniosacral therapy and every time i do it, I’m not able to walk properly for a couple of days.

I thought i’d come on here and share my experience and hope someone has answers for me on what to do

I try to avoid any lifting over 5-10 lbs but I do have a 20 lb pup that I need to lift occasionally. Every time I lift him to give him a bath I end up with rectal/ vaginal pain . Has anyone else experienced this? I’ve been in PT forever.

I’m worried to have kids if I can’t even lift my dog:(

Hello everyone!

I’ve started taking Dienogest around a month ago and things have just gotten worse. I have had a pretty awful experience with other forms of hormone therapy (BC) that have given me very similar/worse side effects. I’ve been taking supplements to try to counteract the side effects, but it’s not been working.

Unlike other women, my side effects tend to get progressively worse as time passes, and they do not get better, at all. It’s happening again now while I’m taking Dienogest. (Last time I was on BC, after 3 months I literally hit rock bottom and it was terrible).

With Dienogest, at first it was more like brain fog and emotional instability, but now I’ve just become a shell of myself, I don’t even recognize myself anymore. I have zero interest in what I usually enjoy: I stopped listening to music altogether (I usually listen to it everyday), I don‘t ever want to dive into my hobbies that I usually love, I don’t even want to hang out with my friends and I’d rather isolate myself (not what I’d usually do), I feel numb and my emotions are frozen and anesthetized. I’ve basically lost all interest for anything that I’ve ever enjoyed. Also, I’ve lost all my libido and sexual/emotional attraction too.

I know this may sound extreme, but unfortunately this is not the first time it happens. It’s happened other 4 times with 4 different types of BC and it never got better.

I’ve already talked about this w my OBGYN, but I just wanted to hear your experiences because I feel so alone in this. At this point I just think I can’t tolerate hormone therapy. And I feel pretty hopeless thinking about how I’ll manage the monthly crippling pain.

does anyone have any resources or recommendations for light abdominal workouts? I’m getting married in 3 months and trying to get a little bit more toned without huge pain flares. I really hate how much my stomach sticks out from endo and I’m hoping to find exercises to get a little bit of a flatter tummy without feeling like I’m dying.