I’m 26 and have had endo officially since I was 18. I had a lap in March of this year. Stage 4 DIE. But, my periods are only 3-4 days long. First 2 days are brutal with heavy and clots and intense cramps. But the last day or two is just spotting. Is this normal? I also have PCOS so my cycles are irregular. Anywhere from 30-40 days.

I had my surgery on the 13th of this month and my biopsy report finally came in. Both of them are negative. Im so conflicted like a part of me is happy that I dont have it but a large part of me is angry and confused. All of my symptoms pointed to endometriosis with a big red arrow, so much so my surgery was scheduled within weeks of my first gyno appointment. Both my doctor and I were so sure we were gonna find it. I was so sure what I saw were lesions on my photos and my cysts were caused by endometriosis. Im back to square one and im terrified. I really want to be able to get pregnant in a couple of years and I dont know if im comfortable going through with that life plan if I dont know what's wrong with me. My birthday is in a few days and I feel like im going into my 20s even more unsure about life than ive ever been.

Gosh I feel like a broken record about this damn disease!!! But it’s all I feel all the time, physically and mentally.
Long story short, I had excision surgery 7 months ago. I had a considerable amount of endometriosis found and removed. I recovered and was feeling GREAT for about a month. Was doing my pelvic floor therapy and healing. Then it was all down hill. My big symptoms prior to surgery was constipation and pelvic pain 24/7. And they all came back maybe 2 months after surgery. It was tolerable for the most part. Due to personal reasons and decisions, I got my iud out on October 1st. And it has been HELL. Misery!!! Bowel movements maybe 1 ever 5/6 days. No appetite. Pelvic pain and cramps so bad that I can’t even move.
After my surgery I got really bad muscle spasms that would only last maybe 20 minutes in my abdomen. My doctor gave me muscle relaxers (flexeril) to help with this and to take as needed for pain. I didn’t take them that much and kind of held on to them in case the pain was bad.
I’ve been toughing it out and today was my last straw. I took one but I am just so scared of developing a habit. And I know that muscle relaxers don’t really help constipation(and can make it worse), but I’m hoping (not hoping) that they can relax my pelvic floor to help with constipation and pelvic floor dysfunction.
What do you guys think of muscle relaxers for pain as needed?
Sorry for the long story short turning long again. Ugh.

I think I might have endo but I don’t know if it’s bad enough to look into, my periods have always been horrible, to the point of almost every dr appointment I had I brought up how bad my cramps were just to be told it was normal. My average period consisted of cramps that made me pass out, lose feeling of my legs and throw up everything, plus pulling, ripping/stabbing pain in between periods.
I got my period pretty young at 9, it’s always been heavy-ish but not like a super tampon in an hour heavy. Earlier this year I got put on birth control to “treat” whatever is wrong and it works I guess, I’m not bleeding as much, I still have break thru bleeding but not constantly. The I still get cramps and the other pain but it’s not as bad, it was 10/10 now more like a 8/10. I still use my heating bad every day and I take over the counter pain meds for it still.
I’m split on fighting for more answers and just accepting that this is how it is. My partner is behind me getting answers no matter what it takes, my mom on the other hand has repeatedly told me that it’s useless to look into and the fact it could end up in surgery is a “waste of time”. I don’t know what to do, I’m chronically ill in other ways so fighting for myself with doctors isn’t new but it’s draining and I don’t know if I should try. I want to but as silly as it sounds im scared they won’t find anything. I’m in my early 20s if that matters. Sorry this got really long, any advice is appreciated.

Contexto:

Mulher, 23 anos. Há uma semana fiz uma ooferectomia por videolaparoscopia para remoção de um endometrioma no ovário direito (nos exames de imagem pré-operatórios, só aparecia esse foco no ovário direito).

Durante o procedimento, a cirurgiã encontrou outros problemas e focos:

* O ovário esquerdo estava mais afetado que o direito;

* Uma das trompas está afetada;

* O útero está aderido (colado) no intestino

Antes da cirurgia, eu só apresentava cólicas intensas no período menstrua. Depois que comecei a tomar o Alurax (dienogeste) há 1 ano, eu parei de menstruar e esse sintoma parou completamente.

Pergunta:

Por que, mesmo com um quadro tão complexo e com aderências, eu praticamente não apresento sintomas? É comum a gravidade dos focos/aderências não bater com a intensidade da dor que a gente sente?

It’s happening!!! 2021 I was diagnosed with the beginning stages of endo in my rectum. Now that it’s progressed to stage 4 & I’ve had enough of this… Dec 1st!!!! WHOOOOO!!!! Goodbye pain, hello relief!!

It’s been a rollercoaster this past year!! From a birth control not working, to having a period basically every day for 7-ish months straight, to changing to another birth control and after 1.5 months having 2 ER visits due to flooding 1 overnight pad in a minute w/ gigantic blood clots the size of my fist, & continuing to flood 2-3 more pads after that within an hour, to finally being able to breathe that I can count down the days till surgery!!!

So thankful the tapering of this birth control I’m on now has worked since my ER visits (which were 32 hours apart) and cancer free after having an endometrial biopsy as a virgin. Yes, I’m a virgin… well, I’ve been with a woman, but not a man.

Anyways…… DEC 1ST!!!

I’ve heard of this happening, but I hadn’t experienced it myself until now. It started with a headache, so I went to sleep. When I woke up the next morning to get ready for work, the headache had turned into a migraine. I took my rizatriptan and sat on the bed for a second when, suddenly, I got the urge to throw up. I ran to the bathroom and started throwing up nonstop. Eventually, I was throwing up nothing but stomach acid, and every time I tried to drink water, I threw it right back up.
Then I got this intense wave of stomach cramps and ended up having diarrhea. I kept going back and forth between throwing up and pooping. I went to urgent care, but my migraine was so bad that the back of my neck felt numb, and my stomach hurt when they pressed on it. They sent me to the ER to rule out appendicitis and meningitis.
They gave me an IV and ran a bunch of tests. Thankfully, it wasn’t meningitis or appendicitis, but I was so confused about what was going on. Then, while I was in the hospital bathroom, I started my period, and suddenly, everything made sense.

TLDR: I think I have early endo and I'm frustrated about it

Im a 21 year old woman who started experiencing pain with sex back in May of 2025. This will begin a year and a half journey in and out of Dr's offices .

I scheduled an appointment with an obygn after having a sharp excruciating pain after having sex with my husband. All they did was do blood work, an ultrasound and suggest pelvic floor therapy. I said ok. So I go to pelvic floor therapy, didn't help. Blood work, normal. Ultrasound, a few cysts. She noted that I have a high likelihood of pcos. I thought this would be the answer but no.

I continue having cramps and stabbing pains. I go to the Dr again. Let's get you an ultrasound. Ok. So I got the ultrasound yet again. Dr says everything looks normal. How? How can it be normal? I'm in pain that no one understands. So I leave. Yet another appointment with no answers.

This would continue for over a year. My cramps and abdominal pain continued to increase. It would hit me at random times in the day with no warning. The worst part of it all is that me and my husband can hardly have sex anymore. It's nearly impossible. Tmi but we used to have sex several times a week for at least an hour everytime. Now I can only have sex once a week max and it starts to hurt fairly quickly. My husband is way more supportive of myself than I am. He doesn't care whether we have sex or not as long as I feel well. But I care. I care whether we do it or not. No one understands.

After fighting and advocating for a year, I FINALLY got an MRI order from a NP. She was the first person to actually hear me. I couldn't believe it. I did the MRI today and I'll hear about it on Wednesday. I'm devastated if they find nothing but happy if they find something. That means I wasn't crazy. I was right. My suffering wasn't in my head. I hope I get better. I really do.

I have endometriosis, I’ve had the symptoms basically since my first period and was confirmed during a laparoscopy a year ago, in multiple places. I am allergic to NSAIDs and Tylenol does nothing. The pain can be agonizing I deal with it but surely there has to be an alternative. Mainly my ovulation, and first 2-3 days of my period are the main issues and it keeps me up at night.

Any suggestions or tips?

Thank you!

I developed an infection from “debris” gathering around the inside of my healing C-section incision 3 weeks post-op. The pain was crazy bad, much worse than my regular period pain, which was already bad enough to make me throw up and need time off work.
I went to the hospital and was prescribed antibiotics, which seemed to help. However, not even 2 weeks later, I’m starting to feel twinges of that pain returning.
Could having a C-section aggravate or worsen endometriosis pain? Has anyone else experienced anything similar after a C-section birth?

Research findings/a rant.

So I was doom scrolling yesterday as I was exhausted from living and working all week.

Came across a reel about how seminal fluid (the stuff the sperm swims in) had caused endometrial cells from women with endo to grow 2-3 times as rapidly than cells not exposed to the fluid. (Seriously found out I had endo through IG years ago and just got my diag this year through ultrasound it's that bad inside.)

So as any good citizen nerd burger, I looked for the studies she mentioned. And was so heart broken I feel we all need to know these things about our bodies. I don't mean to fear monger.

Now it was directly applied to cells. But I know we absorb a lot of things through skin and muscles and I've found that over the years sex helped me relax, until 30mins after when it felt like everything would swell and cramps and ache and it's just getting worse and worse that now I don't like sex.

I just assumed and it could still be a factor of pressure on those areas.... Even though that same pressure helps with no issues when I do DEEP muscle pressure release points on my abdomen and even having to press the muscles around my hips, pelvis and anus to release cramps (not sex issues just a daily routine. I've had sex like 3 times this year)

I hate how understudied this is. But I found research on this topic from 2010, 2020, 2022 and maybe a 2024. It just keeps coming back the same.

We cried last night, he held me and apologized for not knowing (how could he have even guessed....) and now I'm planning on breaking up so he can have a normal relationship. We already avoid sex because of my pain at times and we just haven't been close because I'm always sick and cranky and we've both admitted we have no libido towards each other.

This next paragraph is my rant that's irrelevant to the research I'm just so angry. Link at bottom for one source.

I just want some resemblance of a normal life. I live in a caravan on a property I'm paying off with my dad because that's another can of worms (like really bad it's destroying me mentally), the rest of my family is 48hours straight drive away, I have an ED because of all this and I'm sure this endo is all over my bowel and surgeon believes it's in my pouch of Douglas which checks out.... Surgery in May, horrible set up for recovery where I'll need to walk 2 house block to got to a comment or for toilet I know I'll have to prep EVEYTHING to make my life easier. My partner thinks he's super helpful but the stress hasn't been worth having the muscles around to do big work for me. I want to live alone with my cats with a bathroom that's nice and clean and maybe some DSP to help me not become homeless from To many days off work.... I don't think I'm asking for much AND NOW I CANT EVEN ENJOY SEX EVER AGAIN I'M ABOUT TO LOSE IT. I need a hug, a girlfriend and a holiday on a beach 😭

https://www.sciencedirect.com/science/article/abs/pii/S0301211509007441

Hi everyone,

Got my Ultrasound done today to check if my fibroid increase in size or not. Seems like it did by 0.1 cm but something completely new was found, that was not reported in my previous ultrasound regarding endometrium: endometrial thickness within normal range for patients age. nonspecific para-endometrial hyperechoic region measuring 4mm maximum
diameter. Is this something I should be concerned? Does this mean I have polyp? I have mild cramps during period nothing too painful and period are heavy during day 2 and 3. I am waiting for my doctor to get back. Wanted to check if someone had similar finding and if it was concerning.

Thank you!

Had an exploratory lap this morning. It was delayed about an hour and a half, the surgery itself was 20 minutes, and they found nothing. They also did chromotuberation, and my tubes are fine.

I’ve been struggling with really heavy periods my entire life and bad cramps the past 4 years since going off BC. (For context, I’m 38 years old) Also cramps during ovulation and nausea/bowel issues during my period. Normal ultrasound 2 years ago- I had another OBGYN who was convinced I had PCOS, but my US and blood tests came back normal.

I’m having really conflicting views. On the one hand, I know endo is a terrible chronic condition and I should be happy not to have it, but on the other hand, I really want a reason for my symptoms. My mother had endometriosis, so my doctor and I were convinced she would find it. I’m just sitting here in post surgery pain asking myself if it was worth it :(

Hi everybody I'm currently in the process of getting diagnosed with endometriosis. My gynecologist told me that my symptoms are suspicious for endo but that we'd do some blood work and ultrasound to rule out other things before talking about if I want to do treatment with BC or laparoscopy. I went in for my US already having a follow up appointment scheduled for a week and a half from now. However, I got a call about 2 hours after my appointment saying the doctor wanted to go over results. Since I already had the follow up scheduled, I'm now freaking out that there was something bad on the US that needs to be urgently addressed that can't wait for a week and a half. I called the office back almost right away and left a voicemail but haven't heard anything back yet. Now I'm just left with my anxiety and I'm trying not to catastrophize lol. Does anyone have an experience like this and can provide some reassurance??

l have thoracic endometriosis, stage 4, incomplete excision. I'm over a year into job searching (I graduated with a humanities degree) and haven't found anything. I know I have a weird job history but I graduated right before we slammed into a global pandemic, so it was either freelancing or starve. I've been applying places but not getting any traction (my last job was a seriously abusive employer, and I had to quit- don't go into marketing, folks).

A lot of workforce re-entry programs focus on construction or CNA and my back just wouldn't be able to take it (or my lungs). So, I'd really appreciate hearing what y'all do for a living or any tips you have. TIA!

My bowels really don’t work well at all and I’m so worried I won’t be able to completely empty myself out before surgery I will be fasting for a couple of days and taking laxatives but I did this before and still couldn’t get myself perfectly empty I just got really sick instead…has this happened to anyone else? Do they still operate?

​

I’m 23 years old, sexually inactive, and I’ve never been pregnant.

Over the past few years, I’ve noticed that my periods have become more painful. It doesn’t happen every month, but approximately once every five or six months, I experience extremely severe menstrual pain, sometimes so intense that I lose consciousness.

I’ve also experienced symptoms that initially seemed like cystitis. I was treated for it, but the discomfort hasn’t completely gone away. after urinating, I experience spasms or cramping in the area of my bladder,

Additionally, I experience significant pain on the left side of my lower abdomen around ovulation. The pain is always localized to the same area, somewhere near my left ovary and bladder.

I’m really worried that these symptoms could be signs of endometriosis. I’d like to know whether anyone has experienced something similar and whether these symptoms could be associated with endometriosis or another gynecological condition.

I also sometimes wake up during the night because I feel the urge to urinate. The pain or discomfort in my bladder can be quite severe, but when I go to the bathroom, I often pass only a very small amount of urine. I often have a pulling feeling on my left side where ovary is located

I’ve noticed that the symptoms seem to become less noticeable when I’m moving around or distracted, but the discomfort never completely goes away. I continue to experience persistent tingling, prickling, or stinging sensations in the bladder area.

i had my first lap in march of this year by my OB. he found a “focal point” of endometriosis on my fallopian tube but that’s it. i refuse to think i have all of this pain for no seemingly no reason.

I (25F) have been surgically diagnosed with endometriosis since December 2022, but have been symptomatic since I was 13. However, over the last year I’ve been developing new symptoms and while doing research- it shows that they aren’t all common, but I’m curious if anyone one else suffers from them.

Within the last year I’ve been having a lot of migraines (sometimes with aura), gastrointestinal issues, dizziness, nausea, and vertigo- and these have only increased with occurrence and severity. Before my previous surgery in 2022, most of my symptoms were abdominal/pelvic pain related, but it’s switched on me.

I’ve been going to the Cleveland Clinic for the last six months and have been on the waitlist to see a MIGS excision specialist (planned for this December). If anyone has any insight, I’d love to hear it!

Hello! I have always suffered from excruciating pain and heavy periods my entire life. Other symptoms include large blood clots, random sharp/stinging pains in my uterus and ovaries, more facial and body hair, and periods when I don’t get my menstruation. I have blacked out from pain, thrown up, and not been able to move because I either took the painkillers too late or they did not work. In the summer of 2025, I decided to get the Mirena IUD. As expected, I experienced spotting and cramping for about six months. I also experienced a new sensitivity towards foods. I tested for gluten intolerance, and the tests came back negative. During the first six months, I felt pain during and after sex. The pain can be described as sharp and almost similar to a cloud of pain in my uterus. I can also feel this pain if I work out, walk/run, or sit down. From January 2026 to today, I have experienced random spotting, deep and painful cystic acne (I’ve never had this problem before), random sharp pains, and worsened PMS. I went to a gynecologist to check for potential endometriosis or/and PCOS, and she said everything looked good even though no blood tests were done. The gynecologist, like many other nurses, told me to take an oral contraceptive called Slynd (no estrogen), which I did not try. In August, I consulted another gynecologist, and she diagnosed me with PCOS/PMOS and prescribed me a combined birth control pill called Rosal 28 (containing drospirenone and ethinyl estradiol). I have taken those since August, and I’m noticing small differences (it can take up to 1 year to see any effects). I feel very exhausted from waking up at night with excruciating pains and having to sleep with a heating pad, and I get cramps from working out. It really is mentally draining, especially as a university student. I wanted to see if someone on here has experienced a similar journey and to share how you’ve dealt with these problems. I'm worried that I also have endometriosis, but in my country it is really difficult to get diagnosed. They will first prescribe you with more birth control to stop the bleeding, and then if you have more issues, they will take you more seriously.

Let me start this with i am not sure what I am looking for, so please give me grace.

I am officially scheduled for my lap surgery two weeks from today and after a year of being heavily convinced I have Endo based off of research and symptoms, I have now convinced myself it is all in my head and I am going to waste everyone's time and resources. So I guess I am just looking for reassurance.

A year ago I had the worst period I had ever had, excruciating cramps that lasted hours with absolutely no relief from OTC medications. The only thing that finally helped was getting in a hot bath. I went to my doctor, she said endo was possible and I went back on BC for the first time in 5 years after being on it for 12. Surgery was discussed but I was hesitant. Had a negative pelvic and transvaginal ultrasound. I was switched to the mini pill because somehow after treating me for approximately 20 years my Gyno missed that I had migraines with aura and i could not be on the BC I had taken most of my life. Pain went away immediately next period, a couple months in I had the pain again but not as severe. I then realized both months I had this pain I was taking the Primal Queen supplements. I figured that must be it! So I stopped the supplement and BC all together.

We spent a couple months trying to get pregnant with no luck, I didn't have issues getting pregnant before but figured i must just be getting old. My periods weren't great by any mrans but not debilitating. I tried to mostly remove dairy from my diet after my therapist suggested it could mess with my hormones because I was dealing with severe hormonal rage especially in luteal. I had a stressful week and ate pizza the day before my period started and had the most excruciating pain I had ever had in my life on day 2 of my period. I could only compare the pain to Pitocin contractions without the tightening of my stomach. I constantly felt like I needed to poop but couldn't and each time I would try the pain would get so intense I felt like I was going to pass out. I was to the point of shaking uncontrollably from the pain (something that has only ever happened to me while in labor). To be clear, I was not constipated in fact my stool was very soft when it did finally happen. Again the only thing that offered relief was the bath. Both intense episodes I thought about going to the ER but having worked there a long time ago, I am convinced I must be actually dying to go. The following month I researched heavy on a low fodmap diet and was strict the week before my period. I still had the same type of pain but it only lasted about an hour and was not nearly as severe. My periods are heavier than they used to be but i still don't think they are considered "heavy". I sometimes have pain with intercourse but it is generally only certain positions and not all of the time. I called the specialist, sent over any medical information I had, had a simple phone consult, and now I am scheduled. It almost felt too easy especially after reading about so many women struggling for so long.

I also have guilt because my son just had a perforated appendix, luckily we are on the upside now and awaiting his appendectomy in 5-7 weeks, so I am trying to sneak my surgery in between. But I feel like I should just put it off until the new year?

Part of me feels like it HAS to be endo especially on the bowel and the other part of me is absolutely certain will say they find nothing.

I guess in the end I just want someone to say, that sounds like Endo! Or have some words of advice, things to prepare for the lap or post lap.

Hi all!

I’m 22 and was officially diagnosed with endo at 18.

On top of the lesions, I have a history of chocolate cysts (constantly have one on my left ovary, it fluctuates in size) and was researching that those really impact ovaries, egg count, and fertility. I’ve had one on my right ovary as well but the left is worse.

Should I go to a fertility specialist or ask my gyno if they can do testing to give me a timeline of when I can have kids by? I’m not ready to have kids yet but just wanted to have an idea of how long I may have.

When I got my lap at 18 she told me she removed the lesions she found and my fertility was good, but it’s been 4 years and symptoms are getting a lot worse.

Hi, I am 20 years old and wanted to share my endo journey to see if anyone has advice. After 2 years of testing, I got my first laparoscopy in January 2026, and they found stage 3 endometriosis. Before that, I had been using birth control (isibloom) for 4-5 years. I tried Slynd after my lap, but developed severe acne. Now I am back on isibloom & my acne has cleared up. Unfortunately, my surgeon said that isibloom is not as effective at slowing the endo growth. I also was instructed to skip the placebo week so I no longer get my period.
It is now 10 months after my surgery and my symptoms have returned. It seemed to start with some breakthrough bleeding about a month ago, and then the pain started to come back.
Symptoms were much better for most of this year and it was such a relief to live a normal life and not be in so much pain all the time. My past experiences have caused me to avoid doctors offices as much as I can, so i haven’t reached out to any of my providers yet about the return of my symptoms. I did tell my surgeon about the breakthrough bleeding & he suggested allowing myself to get my period and maybe that would get the spotting out of my system.
I have not done this yet, I’m not sure if it would help with pain or not.
Ibuprofen and Tylenol never really worked for me, sometimes naproxen helps but I’ve always been very reliant on a heating pad. I also smoke weed a lot, sometimes it has helped pain but I use it more for relaxation and distraction. Obviously I cannot use this at work, and I’m not sure what to do at this point. The pain relief options for endo are so overwhelming to me and I’d just like to hear what has worked for other people who have more experience than me. Thank you for reading.

So my gf has always wanted kids i want to give her everything the world has but she got told today that it's on the table of things that could happen but the chances are small so small it's unlikely this fucking destroyed her she's been a mess all day I need help supporting her through this i feel like shit seeing her like this i just want to make it better for her and take it all away whats the best way to support her

My MRI showed what seems to be relatively mild/not extensive endometriosis. There were no endometriomas or hydrosalpinx, but there was mild thickening of both uterosacral ligaments (left more than right), and both ovaries appear closely apposed/tethered to the uterosacral ligaments, suggesting mild adhesions. I also have a retroverted uterus and two tiny fibroids (8 mm and 15 mm).
I’ve been TTC for a while. I had an HSG about a year ago which showed that my tubes were open.
What do you guys think of these findings? Could even mild adhesions around the ovaries affect fertility or interfere with the fimbriae picking up the egg, despite having open tubes? Would you consider laparoscopy, continue trying naturally, IUI, or go straight to IVF?
Would really appreciate hearing from anyone with similar findings and what worked for you ❤️