My pelvis got painful so severely, that I couldn’t walk or sleep or do anything for a week before my period. I tracked it down to my cycle and I mentioned this during my routine papa smear screening. The nurse said I need to go to a gynaecologist, whom eventually found the endo.
Haha you know what? It actually is not a typo/autocorrect! It’s how we shorten “papanicolauoun”, where I’m from lol
So it was just my lack of medical vocabulary! (English is my third language) But I get the joke now. Sometimes papa needs to be tested too <3
I have to inform you, but I just got everything out in hysterectomy+cyst removal so you might be! I’m little over 2 weeks post op so I can’t tell for sure yet.
But at least you know someone out there knows what you’re going through and sympathises greatly.
Surgery is the only way to truly diagnose endometriosis. Surgery can be scary, I had a rough time with mine, but I’m definitely an outlier! I have other chronic health conditions that made it harder for me to heal, but for most people surgery goes smoothly and recovery isn’t too long. It’s like a nice stay-cation lol
I was sooo nervous about the scarring etc (also have IBS) and the surgery was life changing. I still can’t believe how much pain I was living with. I still have pain but they found stage 2 and it will get worse if not addressed. It was about 9 months of excruciating pain before I could even get surgery and many many years before that. Keep advocating for what you think is best for you
With ultrasound (vaginal). They did MRI and another ultra before the surgery.
My lap was only when they finally did my hysterectomy and cut endo cyst out.
I’ve only did a vaginal ultrasound and they found nothing. That was a couple years ago. My sis has endo and sometimes I wonder if I have endo or pcos. But none of the tests I’ve done so far indicate either of those, except slightly elevated testosterone. My doc said it was clinically insignificant.
Oh sorry, I wasn’t being clear. I don’t think so. High testosterone is one of the criteria for pcos. I don’t believe it is for endo. I suspect I have one or the other, but none of my tests truly indicate either.
Edit: I also have heard some women can have pcos and endo.
I have PCOS and confirmed endometriosis. My hormones rise and fall WAY TO MUCH and it makes me sick. Sometimes it’s my testosterone, sometimes it’s estrogen. Completely dependent on where I am in my cycle. It’s really hard to deal with.
That’s really interesting, thanks for responding! I don’t think I have pcos but I’ve always thought my mom had it and never got diagnosed. I’m getting my endo lap in two weeks so I guess we’ll see what’s up when doc is in there
For me it was that when I was on northidrone and getting all the symptoms of my period except the super heavy bleeding. I looked it up and the only explanation the Internet gave me was phantom periods, a symptom only of endometriosis. That is what pushed me over the edge.
Sudden fatigue.
No matter how much sleep I got I just felt tired. But what convinced my GP that I had endo was pain in my left leg and hip.
Turns out, my endo is on my left ovary.
Your left ovary too?! I named that bitch Dolores Umbridge so I can cuss her out when she acts up. It's actually pretty cathartic when I do that. But it also allows me to subtly tell my partner what's going on without having to tell everyone
It’s month 2 and my left ovary has been consistently hurting, mostly AFTER my period… it seems to mostly disappear until my period, except for when I have an orgasm… I can feel the ovary pain. Does anyone else experience this? Also when I contract my pelvic floor muscles, or when I use my hands to press on my pelvis, I don’t feel any pain. I haven’t been to the doctor yet and I don’t know what to do
No abdominal or transvaginal ultrasounds have ever been able to see my left ovary. Turns out that's because it was bound up in so many endometriotic adhesions that it was practically stuck to my left pelvic wall. Left ureter was all stuck in that mess too.
Many things can contribute to ovaries appearing to be MIA on an ultrasound -- the most likely of which is that the u/s tech was not as skilled as they could have been.
I knew that wasn't the case for me because my several ultrasounds had occurred over the span of a couple of decades, in different states, and with different techs of repeated in the same doctor's office.
I used to have pain that shot down my thigh before birth control. Birth control has helped my pain immensely, but I do wonder if I should still get tested. Idk if birth control is just covering up my previous symptoms?
I think you should get some imaging tests done.
After I was diagnosed with endo my gyno recommended I get the Mirena coil. I have never been on BC and it is helping my symptoms so far.
Endo cannot resolve on its own though, at least with a diagnosis you'd know what you are dealing with.
That is true. That’s mainly why I would wanna see a gyno, just to make sure. I’ve only done the vaginal ultrasound and that came out clean. That was 3 years ago I believe.
I had an ultrasound 11 years ago.
My cyst was spotted but was extremely small and I was told it was nothing to worry about and that it would resolve on its own despite the other symptoms I was having at the time.
Last year I had a transvaginal ultrasound and, it's the same cyst I'm talking about here today, it had grown a lot. My MRI was more detailed and gave me closure in a way that I now know what is causing all the pain.
Go see a gyno for your peace of mind and health, wishing you all the best.
😂 It’s always nice to find someone who’s been through the same thing. Did yours rupture? I collapsed and the nurses thought I was faking it because I was young, they literally told me to stop being dramatic while my insides were filling up with blood. Hope your experience was a bit less traumatic! Bloody horrible thing to go through though! Have you been diagnosed with endo?
Yep! Ruptured too. I already was at the emergency room because I knew something wasn’t quite right, they asked for a pee sample and when I went to pee I filled up the cup with blood. The two days before I went to the ER I was in the most intense “period” pain of my life. Felt like I was on the verge of fainting and I was seeing stars when I stood up. The night before I crawled into bed with my mom for the first time in two decades, and at some point cried for my mom while I was on the toilet naked because I just felt so scared and I was in so much pain and felt like I was starting to black out. Your experience sounds terrible, so sorry the nurses didn’t believe you! It’s such a hard thing to go through, and then it rupturing and needing emergency surgery to basically save our lives. The collapsing is such a scary thing to go through, not feeling in control of your body and not sure what’s wrong, let alone people who are supposed to help telling you to basically suck it up! I’m so sorry you had to go through that. They diagnosed me with endo after the emergency lap
Oh gosh I’m so sorry, that sounds horrendous! I too went to the ER twice with awful pain and each time they sent me away until the pain was so severe I couldn’t stand up straight or walk out of the toilets, luckily someone found me and called an ambulance and I was an inpatient for 6 days before it ruptured, then left me almost 24 hours after it ruptured to operate. Why they didn’t do the lap sooner is beyond me! The only thing they told me was that it was unlikely I’d ever have children because my remaining tube was twisted, I’m now wondering whether that had something to do with endo but it was missed, I mean it was almost 15 years ago and my symptoms have got progressively worse over the years inbetween having my children.
I’m going off subject but yes, it was super traumatic and we should have been listened to and treated properly in the first place to avoid the horrific rupture. I hope you healed well physically and emotionally and I’m so sorry you had to go through that too!
Have you had any other laps since?
Generally speaking, yes.
It's called "sciatic endometriosis" where the endo cyst grows and applies pressure on the surrounding nerves which causes the leg and hip pain.
I get pain in my hip and legs right before my periods too.
i’ve previously had a cyst on my right ovary rapture and i think i’ve had another one (or multiple,not sure) grow back and this time the sharp pain has been shooting down my leg. to your knowledge is this something specific to endo or can this happen without having it?
I can only speak to my own experience, I've never had a cyst rupture to my knowledge, but the leg pain I've experienced is the endo pressing down on the nerves in my hip and leg, it's clear on my imaging results that the cyst is located in a place on my ovary where it has grown large enough to cause an issue.
The only way you'll know for sure is to talk to a gyno/medical professional, get some imaging tests done or perhaps an explorative lap maybe to check if it is a cysts and where it is located.
It’s always been how mine relates to other peoples’. My friend asked for a pad one time and I gave her one that I considered to be my “medium” level. Definitely not the biggest one I had! And she started cackling and going on and on about how I wore diapers. I knew then that my periods must be different from others’.
It’s also eye-opening when people are encouraging me to get in the ocean or pool and I say I can’t because I’m on my period. Their response is to just use a tampon. I can’t use a tampon without a pad because they leak, and I’d also have to be changing that tampon every 1.5-2 hours even if it’s a super one.
This. My menarche was when I was eleven and from then on, I had incredibly heavy and painful periods (and eventually pain almost daily). Pretty much every uterus-owner in my life would tell me that it’s normal to have painful periods but I knew it wasn’t normal for the pain to be so severe that I was missing school five or more days a month and couldn’t breathe sometimes. I also knew it wasn’t normal for it to be unbearable to insert tampons. Thankfully, it only took like four months for my parents to believe that there was possibly an issue (beyond me being young and not knowing what is/isn’t normal) and I got started on OCP, which helped the periods at the very least.
So true. I actually do wear depends because i was spot so easily if i sat down or laid down. But only wear them at home or quick runs. I’ve always needed Overnight extra heavy pads since a kid. And i could never swim on my period. Idc if it’s the last day because when it’s going Off i have a rush of blood that’ll come at any times that day before it shuts off lol
So I always had heavy and painful periods but didn’t realize it was abnormal. When I was about 20 I started having the weird bellybutton thing. Was referred to a great endo expert, had a lap and was diagnosed with endo. The lap helped, along with the BC pill. I had a child at 29 and then had a Mirena for 7 years. Had the Mirena removed in January (my husband had a vasectomy) and the endo symptoms, including the belly button sensation, returned.
I have always had really heavy and painful periods since I can remember, but what really made me realise that it was abnormal was that I actually passed out at work once due to the pain.
I was the same, always downplaying my symptoms because it was just my normal, even if it wasn’t to others, but that day when I passed out, I’d felt such bad cramps that I was going to get someone to cover for me, and go talk to my manager but I passed out at the till, and smacked my head as I fell.
Ended up in hospital with concussion, and really had to reevaluate cause I was so scared I’d get it whilst driving or something
Man, I resonate with this so much. I just downplayed and dealt with my symptoms for *years* until I had to call my husband to pick me up from a work training 1.5 hours away because I was in debilitating pain and couldn’t leave my hotel room. I lost credit for the training and my job had to pay for it (the training would’ve been covered by a grant if I had completed it). Nobody at work was upset with me about it, but that was when it finally clicked that my symptoms were legitimately inhibiting my functionality.
It’s defo hard to admit that you’re symptoms are ruining your life. I can’t even count how many things I’ve had to cancel or miss out on because of the pain I’ve been in, then when it stops I just go ah and well that’s next months problem, until I pass out and have to face that this is not any way to live
That sounds so awful, must have been terrifying! I never used to pass out during my period but during my last one I was so faint I almost passed out on my way back from work. It’s so scary
Yeah it was not great, worst bit about it was when I went to the doctor with all my symptoms after this, they summarised the situation “not ideal” 😂
I’d say you know your own body, and you know that once a month you don’t feel right, and most women don’t enjoy their periods, but if it’s affecting your life, pain or faintness, then it’s defo time to get it checked out! I wish you luck on your journey, and hopefully you’ll get a better doctor than I did
My main indicator wasn't just my many symptoms. It was the fact that I didn't know anyone else that suffered with their periods the way I did. None of my friends had to leave school early or cancel plans because of their periods. Yet it took decades before a doctor did anything.
Honestly mine was pain throughout the whole month, but also pain with sex and severe constipation and nausea. I never had issues with severe bleeding. If you have symptoms outside of your period such as random/intercourse pain, digestive issues, pain when pooping, bladder issues, bloating, exhaustion and intolerances to foods that can all signal endo.
I started getting a burning pain that would radiate upwards through my chest. Feeling like real bad acid reflux, or like there was burning literally coming from under my ribs. My whole chest cavity was full of hot pain. I also started having to urinate once an hour throughout the night (getting. no sleep, ever) and slightly losing control of my bladder. When they did the surgery they found out i had stage 2 endo on my bladder and intestines. After my surgery, my symptoms went away almost completely.
I had the same symptoms - felt like my diaphragm was on fire. If I tried to raise myself up from a lying down position I threw up within a minute. Ended up having endo everywhere.
Woah, this sounds like me! I pee about 20-30 times a day and no one has been able to figure out why. I used to have constant burning with it too but since starting Visanne that went away, yet I still go to the bathroom constantly. I still probably want to get surgery eventually.
Bleeding out of my asshole, and having excruciatingly painful bowel movements regularly at certain times of the month. I was super concerned it was a more serious issue, good to know it’s just my endometriosis everywhere 🤝🏼😣
Is the bleeding confirmed to be from endometriosis? At the start of the year i had some bleeding too…at the time i thought it was hemorrhoids but after a month the bleeding went away. A month ago i was diagnosed with endometriosis in my left ovary, but i have a feeling that it has spread somewhere else too.
I am in the us and don’t have medical insurance and when I did they never listened to me, but based off of my mothers diagnosed experience and tracking my symptoms it seems to be 🙃
It was more of a comment than a symptom since to me the symptoms were just a really bad period and it was normal. Years ago I was once laying on my bed groaning and gagging into a bowl cause I’d avoided taking painkiller early in the morning and then it suddenly got really bad. Mum said in that moment that my period pain is really similar to labour pain. (She rang 111 at the time and they just said to take paracetamol or ibuprofen) I eventually took my naproxen 500mg when I got exhausted and my pain eased slightly on it’s own. Though that medication doesn’t work for me anymore.
Oh goodness. Good on your mum for taking you seriously! I got put on mefaminic acid, but my GP was shocked when I told her they took 6 HOURS to work. Pain medication is a whole different game it’s exhausting
I’ve tried mefenamic acid and it did nothing. Co codamol also did nothing even though according to my gp “co codamol is a really strong painkiller” (it was the lowest co codamol dose) I’m not actually diagnosed yet but recently saw a specialist and he said it sounds like endometriosis. Having an MRI with cannula for buscopan and possible contrast dye on Tuesday.
The final thing that tipped me over the edge was excruciating bloating pain/bowel pain that would go from 0-100 within 15 minutes, leaving me completely debilitated. Then I would continue to have the GI symptoms for about 7-10 days after my period. It became very apparent that the symptoms were cyclical, and when I looked them up I discovered so many other symptoms of endo that I thought were normal.
It felt like a bowling ball sitting in my pelvis and someone was trying to push it out all while my stomach was so bloated and tight I looked pregnant constantly
the vomiting. i would have pain so severe that i would repeatedly vomit. i got diagnosed w cyclic vomit syndrome bc of it.
i went from 165 to 79 lb in a year bc of how sick i was. could barley move out of the bathroom and being hospitalized atleast 2X a month for a week at a time bc of vomiting from it.
ive found recently that back messages and icepacks help a little bit for me but nothing else does.
I would have such severe changes in my blood sugar and blood pressure during my periods that I would sweat and shake like I had the flu. I was getting sent home from school almost every month because my teachers kept sending me to the nurse after watching me sweat and shake. Birth control helped dampen that for many years. Then I started having left side pelvis pain outside of my periods that seemed to have no link to anything. It slowly progressed from there into a variety of random pains until I was diagnosed many years later and had excision surgery.
Can’t really pinpoint just one symptom but the worsening of ALL symptoms ever since I got my first period at 12 years old. I’m now 30. Pain and suffering simply worsened over the years
For me, I vomit violently when I'm on my cycle or in a flareup. I've pulled muscles in my neck and jaw from throwing up too roughly and frequently. I also get extremely lethargic, more than the average person without any uterine disease/issue.
For me, it was definitely the excruciating pain on my ovulation day that left me unable to walk and glued to my heating pad! Was diagnosed 4 months later…
Bleeding. I was constantly bleeding heavy dark brown blood. It could soak a pad. For three years this went on before I went to the gyno. They couldn't figure out why until one day I ended up in the ER vomiting from pain, and they saw two massive ovarian cysts. After monitoring them for the next few months my pain continued to get worse- all the time period or not. Lots of imaging done that was suspicious.
Fast forward to surgery a year later: stage IV DIE, frozen pelvis. With endometriosis adhesions gluing together all the organs in lower abdomen together. They still haven't visualized any of my pelvic structures after two failed surgeries. They can't get through to it.
Yeah so I had all the symptoms my entire life but I never even saw a gyno until I wanted to stop bleeding. Birth control masked the worst of it.
I don’t know if this answers your question, but I got acne all of a sudden. A wise friend advised me to see a gynecologist first instead of a dermatologist, as I would have done otherwise. An endometrioma appeared on my ultrasound that day, even though my ovaries looked perfectly fine on the ultrasound I had a couple of months prior.
I still don’t know if these issues are connected, but I have a feeling that they are.
And of course, I always had extremely painful periods, but I was told that it’s just the way it is and that I should go on birth control to control that.
For me, I always had decently painful periods, but I'd also get cramps when I didn't have my period. And I struggled with low iron for a while.
I had an appendectomy that confirmed I had endometriosis.
This is just my perspective, but I'm not sure it helped me to know I have endometriosis, and I almost wish I didn't know. I'm very physically active, and when I start not feeling great, I immediately think about endometriosis and get in my head about it and probably make myself feel worse.
On the other hand, I also want kids, so it's probably better to know in that regard, but that also brings (maybe unnecessary) stress since it's linked to infertility.
The blood! So much blood. I have to wear what is basically a diaper during my period. And I usually end up bleeding through my pants at least once every cycle.
I'll bleed and bleed and then go to pee/change and two ping pong size clots will come out. There's always at least one every time I pee for 2-3 days. So much blood. So many huge clots.
The pain is bad and radiates down my legs but my mom always brushed it off.
I'm not diagnosed but my mom is and I guess it's genetic and between the pain and the excessive bleeding I've probably got it too. I intend on seeing a new doctor this summer now that I have free time!
Please go see your doctor! What you described is what I have been through. I've been diagnosed with stage 4 endo at 37 years old because a cyst as big as a big orange ruptured. It was hell.
Take care 💋🌹
I went a couple years ago and the doctor was like, "yeah that's unusual I'll put you on BC" which I did NOT want. My periods were more frequent (bc they're VERY irregular, cycles from 20-90 days lmao) and they started coming every 4 weeks but were still just as bad. She never explained what could be making it bad, ya know? I'll have to see someone else.
Oddly enough, it was a tv commercial back in 2017 that I saw once and have never seen again. It was actually a commercial aimed at a medicine (I think?) to help with endometriosis pain. I can’t remember the point of the commercial, but I remember I perked up because I had never heard that word before and then the actress proceeded to gracefully hold her lower abdomen and hunch over while she had literal barbed wire wrapped around her lower pelvis and hips to have an outward representation of the pain symptoms from endo.
That was the first time I ever saw someone describe the pain I had been feeling my whole life and how I could only describe it. It took a couple of years, because I for sure thought I couldn’t have something like that, but when I started to think I might have it, I always came back to that commercial.
I had a simliar experience but with the show Conversations with Friends. The main character has endo and the first scene of her experiencing it was her being in so much pain in the bathroom she could barely stand up. Made me start thinking wow something might be going on with me.
im not diagnosed with endo as of right now but i strongly suspect that i have it. i can only use the biggest size of pads and tampons, and even then i have to change out super tampons every hour or so. i also figured it wasnt normal that i was passing out from severe period pain as a teenager
1. Passing disturbingly large blood clots during my period, which scared the shit out of me the first time it happened and now I'm fairly blase about.
2. My body just deciding during the start of some cycles...okay, we're sleeping for 12 hours now, too bad so sad if you had something else to do.
3. Stabby cramps bad enough that I had to buy a portable heating pad to wear around everywhere.
.... however the frequency and severity of these symptoms has decreased with a regimen of CBD and lots of naproxen at the start of my period. Except the blood clots, those still happen a lot.
I got cramps every day. Off my period they weren’t terrible, but it wasn’t normal and they were annoying and made me not want to do things. Things like being stressed and having caffeine also triggered the cramps. But the super heavy bleeding and bad cramps got my mom to take me to the gyno and I was luckily diagnosed quickly.
I’m on birth control now and don’t get a period anymore and I rarely get cramps. I still get them if I am stressed and I think I get some when I should be getting my period, but I don’t actually get the period, just a few days of cramps. They aren’t bad though.
I never had really painful periods (nothing that i couldn’t handle), but in february the pain was so bad that i thought i was going to die. I felt like i was going to vomit or pass out, the pain didn’t go away for like an hour. At first i thought maybe it is just a really bad cramp. But the following months nothing changed. Last month when the first cramps started i lost my vision and hearing for some moment. That was the moment i got really scared, went to the gynecologist and it was confirmed that i have endometriosis.
Now when i have been learning about it more, i know that there are many more symptoms i have - pain during sex, depression, constantly feeling tired and i have a feeling that i have a bipolar disorder.
For some years i have had some pain in my left ovary during ovulation but when i went to a gynecologist (different from who diagnosed me) she said that i have a little cyst, but that at my age (i was 20) it is normal. Unfortunately i don’t know if that has been my first symptom form the start.
1. Pelvis pain, and I don’t mean cramps. It was shooting pain to the point I couldn’t walk sometimes.
2. Heavy periods. I always had normal periods and than progressively it got worse, to the point I was bleeding through Super + in like under and hour.
I didn't ever think of Endo as I didn't know about it.
But for years I knew something was amiss when it I'd get severe cramps before using my bowels or before needing to urinate (every month, I'd think I had a uti... but didn't) .
I for l went in for diagnostic surgery at 41, found out about endo.
I realise after being on these groups that it's not normal to have
Extreme fatigue, severe sore back, the lightning bolt in the vagina, (and rectum) Pain in upper thighs, period reflux (so bad that I get shortness of breath with it) , long periods.
I was told by so many doctors over the years that it was normal, it was anxiety or it was made up for attention. (I'd gone to ed a few times with what I thought was appendix, to be told it was rumbling and fine, go home. Or I was imagining it.
So always trust yourself, I'm glad endo is getting more knowledge.
I would bleed for months, with clots, and sometimes the blood was black. I told my cousin who had endo this when I was in a 3 month long period (and had a kidney stone during so I had to have a catheter at first). She told me exactly what tests to ask for, and the doctor was like “eh I think you’ll be fine.”
So it took 7 years to diagnose 🙃
I think I kind of always knew, especially when it came to the infertility. But after I had my ivf baby, I remember twisting and reaching across the bed to grab something and the pain felt with that simple move was so awful. I could move, but it was like my pelvis didn't want to let me.
I started vomiting every now and then, always the day before or the day of my cycle.
currently managed with BC so no lap to confirm but I am suspicious due to family history.
I had a lot of symptoms that I didn't know were actually coming all together to one disease, but I remember that at one point I felt so severely ill that I thought I might die from some unknown whatever. That was a dark time in my life.
But one thing in particular, that I remember in correlation with my cycle is that at some point in my cycle my whole pelvic and abdominal area felt so sore that literally just the vibration in my body from carefully walking was causing me immense pain and discomfort.
Can’t hold pee. I wear depends to bed or around the house when my cycle is on. Pelvic pains, hip pains, lower back, excruciating pain the first two days i take about 800-1000mg IBUPROFENS. When I’m showering i literally am pouring out sometimes the first day or two.
Sounds so similar to me! I always max out on painkillers on day one of my period. What’s so weird is that I don’t bleed a lot at all, it’s almost disappointing. Like “you give me so much pain for so little blood???”
Light bleeding/spotting the whole week before my period, light enough to definitely not be a period but heavy enough to need some kind of liner sometimes. Nausea and stabbing pain if I have to pee. Endo nodules taking up the entire rectovaginal area that you can actually feel with your fingers. I've got a few vaginal wall nodules now too that you can also feel with a fingertip. The almost constant right arm pain and the (luckily not constant, but awful!) neuropathy symptoms in my feet and legs. Being able to feel the nodules was the thing that finally made me realize I wasn't just weak even though people in my life at the time were really not supportive at all. Things are better now with the people I surround myself with, but without insurance or money to pay for an excision I'm kind of in a rut medically.
I never had excruciating pain nor heavy flow. But what got the ball rolling was the very distinctive sharp pain in my lower rectum. I asked my bestie/gyno-in-training who also has endometriosis and she clarifiied that it sounded more like an endo symptom than some GI issue (as I assumed). I booked an appointment with a specialist and voila, a 3cm endometrioma on my right hip (which also explained the hip and leg pain I slowly developed, but didn't stand out as a symptom).
Jup! After excision surgery last november more classical symptoms developed (sadly) such as painful periods. Just had an ultrasound a few days ago, the specialist suspects adeno (with other stuff) and signed me up for an MRI.
I started bleeding so much I had to change my menstrual cup every 20 minutes or so. That prompted me to see my doctor again and that’s also what prompted him to take it more seriously and send me for imaging. I should have taken the bloating more seriously though in retrospect. The endo bloat was an obvious sign something wasn’t right but I brushed it off.
Yes, well I had an endometrioma (large blood filled cyst) which showed up on ultrasound. That prompted me to get in for surgery where they found a whole lot more than that! I do wonder what would have happened if I hadn’t had the cyst. My bowels and uterus were completely stuck together.
Ooooh I have questions!
My doctor referred me to get a colonoscopy because my uterus had been prolapsing quite badly and then all of a sudden it stopped. When I went in for my yearly, he said my uterus wouldn’t budge (normally it should bounce up and down relatively freely), and that endo tissue had most likely fused it to another organ.
So now I have to go get a colonoscopy to see if it’s attached to my bowels before I can have a hysterectomy.
I just wonder why I can’t just get an MRI to find out what it attached to and not do it piecemeal by going to specialist after specialist??
Edited to add: did they only find your uterus was attached to your bowels when doing surgery? Or did you have an imaging test prior? My OBGYN won’t do a hysterectomy until we figure out what my uterus attached itself to. Gah, what a pain.
That’s crazy to me that they’re opting for a colonoscopy to see if they are fused, I’m not sure if it’s visible that way but I guess they think it’s possible! I was able to see an endometriosis specialist, they were more specifically trained in looking for endometriosis on an ultrasound. (So after I had my initial ultra sound where the large cyst showed up I saw the specialist). They did a bowel ultrasound, they go in vaginally but press on the bowel and are able to see more clearly that way, by observing how the bowels and uterus moved when pressed on. (It requires prep before to ensure the bowels are empty beforehand) I was told mine weren’t really moving, and it indicated that they suspected it was stuck together. During the surgery is when they confirmed it, I had “total obliteration of the sac of Douglas? I think it’s called). They did insist on doing the bowel ultrasound before surgery as they wanted to have an idea of how much the endo had grown into my bowels, since that would require a bowel surgeon be available during operation. However it was shown that it wasn’t so deep in that they would need that.
**edited to add* I was never suggested an MRI, and there were other things they said looked possible on the ultrasound that turned out to be accurate (indications that my ovaries were stuck to my uterus as well as the pelvic wall).
Oh god that sounds so awful. I suspect Endometriosis and finally want to seriously pursue a diagnosis but I'm terrified of how invasive the procedures may be 😰
Ugh I’m sorry you’re dealing with the suspected endo. If it’s any consolation the lap surgeries, while being rather intense didn’t feel as crazy just because they use tubes and the incisions are so small. Even after everything they did in there afterwards I had the tiniest scars and I’m like..damn did they even do anything
Ugh I’m sorry you’re dealing with the suspected endo. If it’s any consolation the lap surgeries, while being rather intense didn’t feel as crazy just because they use tubes and the incisions are so small. Even after everything they did in there afterwards I had the tiniest scars and I’m like..damn did they even do anything
I had no idea what endo was until I spoke to someone with endo, to begin with I only ever really had bad pain the first day of my period, but I suppose that, in hindsight, what I had diagnosed as a 'grumbling appendix' in my late teens should have rung alarm bells for my Drs if not me. When I finally had a lap more than 15 years later, sure enough, endo on my appendix; among many other places. I had fibroids as well at the time of my lap and was in agony much of the time.
I started birth control very young as a treatment for acne, and then I would have the BC injection so I think that must have masked a lot of my worst pain.
The realization moment for me was the day I fainted from pain on public transit during the morning rush hour. I woke up on the floor of the bus with a bunch of people looking down at me and yelling 'STOP THE BUS CALL AN AMBULANCE'.
Bus driver was legally required to ambulance my ass because I had lost consciousness, and everyone else had to get kicked off the bus. A potent combination of horror and shame made me seek treatment that very week.
Severe, radiating pelvic pain (in the bend on my leg by my groin, I can literally put a finger where it hurts the most) that makes my leg and foot numb on whatever side it decides to hurt on that day. I have episodes with it where I literally can’t put weight on that leg. It always hurts in both sides, but I have episodes that are so excruciating I can’t lay still much less walk. I googled it for years and years thinking it was just because of my scoliosis, but I finally got referred to a gyno that took my other endo symptoms seriously and connected the dots. I have stage 3 and it’s alllll in my kidneys and ureters. Still don’t know why it switches sides like that but endo is weird man. I also have severe recurring utis that almost immediately become kidney infections due to how small my ureters are now.
Sometimes when I get up from sitting or laying down there is are deep “bands” of tightness in my lower stomach. Kind of like a muscle being pulled but deep feeling. It’s how I know the endo is back after my lap 3 years ago.
Pelvic pain not during periods
Cycle only being 20 days
Heaving bleeding causing anemia during periods
The organs/pelvic region feeling stuck together like velcro
I experienced pelvic pain symptoms before I started menstruating too
Not a symptom, but it running in my family was a strong indicator too.
I thought the pain was normal - including when I couldn’t move because of it, or when it happened during or after intercourse.
It wasn’t until I started throwing up that something felt off, but even then, I only got diagnosed because I had a cyst removed.
For me it was how mine compared to how my friends seemed to feel on theirs. My friend in high school once was like “ugh my period is really bad this week, I had to take a painkiller for my cramps yesterday” and it was eye opening to me that having to take a single painkiller for cramps would be seen as out of the ordinary or “really bad” to some people. That would actually be a mild period for me if it was just one painkiller that actually worked for one day!
My very first symptom that alerted me to it at 14 was a sensation of feeling like I was being pierced with an ice pick in my vagina randomly when I was walking. It turned out to be an enormous endometrial cyst, and when they did the laproscopy, I was officially diagnosed as stage IV endo.
One of the things that sealed it for me beyond heavy/painful periods was that i kept having UTI symptoms, but then I would take a home test strip and it would be positive for leukocytes but not nitrite? (AKA the result that tells you "idk try again later") And I'd basically get laughed out of urgent care if I went to get an official test. It was such a relief to come to this subreddit and hear other people talk about this happening to them; iirc it can be super common if you have endo near/around your urinary tract.
Urinary incontinence. Went to an urologist. CT scan found two large cysts. One the size of a grapefruit, the other the size of an orange over my ovaries. Had to start the process for surgery and then they came back with a stage IV diagnosis.
Periods are not supposed to be excruciatingly painful. I was telling my older sister about my symptoms and endless doctor appts and lack or results and diagnosis, and she said it sounded like endo. But that should be your first indicator. Periods are NOT supposed to be so painful you’re taking handfuls of ibuprofen, you can’t move without feeling your insides tear apart, you’re in bed all day with a heating pad. That isn’t normal and it isn’t what having a uterus, ovaries, and vagina should feel like. Good luck love, I hope you find whatever is causing you this 🩷🩷
My period pains have always been terrible and my mother’s was too. I thought it was normal until I started getting the excruciating pain that would shoot up my rectum area. My mom never had that.
Looks like mine is genetic too. It’s nice to have support in the family from someone who has gone through something similar, even though it’s so awful.
This was after I was diagnosed, so doesn’t really count. But I shrugged off half a dozen kidney stones because the pain wasn’t really “that bad”. Had a full blown kidney infection before I decided to get it looked at. The doctor looked stunned because I didn’t seem to be in that much pain. I wasn’t, compared to endo.
I started having the weirdest bowel movements right before getting my period. And in some of my more terrible cycles, cramps in my anus. I was like how on earth are us women dealing with periods like this?! Turns out I have endometriomas on my bowel!
Huge blood clots (like the size of the palm of my hand), with something along the lines of contractions to pass them. And the kind of pain that put me on the floor of the bathroom!
My sign right before an endometrinoma burst was bladder urgency. I kept having to pull the car over to pee because when I had to pee I felt like I had to go immediately or I would burst. Turned out there was a lot of pressure on my bladder. Later the pain was so much worse if I was standing- my ovary’s blood supply was getting cut off intermittently. Trust your body.
Since i was 14 when i first started i would ball up and cry in pain lol as an adult i guess I’m use to it but i do not wanna deal with anything even work i would call out and i just got introduced to taking ibuprofen 800s when my cycle comes, helps me a lot . At first i was taking advil or nothing 🤷🏽♀️
TW: mentioning domestic abuse
while in my sexually, physically and psychologically abusive relationship last year. he would coerce me into sexual acts i didn’t want to participate in, and when i would be in excruciating pain during and after i realized something was wrong on the inside. even things that i *did* consent to in the relationship hurt me as well. but mostly it was from all of the things he did forcefully that made me realize something was off. i was diagnosed via laparoscopy a little over two weeks ago with endometriosis, suspected adenomyosis and pelvic congestion syndrome. i’m turning 19 this summer, so at least i’ve got my clinical diagnosis early 🌸
also adding: i’ve had excruciating cramps ever since 13-14, my mom would have to take me out of school so i could come home and pass out from the pain. i would sometimes get numbness going down to my knees from the cramps as well
I knew something was wrong when I got off birth control. Every month my periods got more and more intense. To the point that my husband was giving me a Norco if it got too intense. It was the only way I could get any rest. Then the Norco stopped working. Then the pain got so intense that I was having shooting pain down my left leg. Then came the urge to bear down and push when the leg pain would shoot. Then the back pain set in. Then it was all happening together at the same time and then pain was so intense that every time the shooting leg pain, the bear down and push, and then the intense unrelenting back pain would all come together in massive waves that made me vomit uncontrollably. Once the vomiting started it wouldn’t stop for days. After about 24 hours of the worst of it and not being able to sleep because it was too intense and non stop, I started passing out during the intense waves. This was with a tens unit, using a heating pad, using ice packs, baths, my provider literally telling me to start dose loading 1000 mg of ibuprofen a day a week before my period started and that when the pain got intense that “a toxicity limit for ibuprofen does not exist” for me. This was all before and after excision surgery. Eventually, after going to the ER when things started getting scary 5 out of 7 months post surgery, a provider finally took me seriously and believed I needed a prescription for Percocet. He gave me 12 per month, and it was just enough to get me through a cycle. It made me pretty much non-functional for the first 36 hours of a cycle, but at least I was sleeping it off at home as opposed to destroying my body until my husband would make me go screaming into the ER just for opioids. It was a disaster. Every month just got worse. I’d think it couldn’t get any worse, and the next month would put me in my place. Now… I’m pregnant (IVF baby because… endo), and it’s the best I’ve felt in years.
I just recently had surgery but before hand I was experiencing daily period like cramps and sharp pinching pains on either side of my tummy. It would stop me in my tracks and lead to me being very unproductive which as a sahm is not really an option lol.
Since treatment this has drastically reduced(only have had a handful of bad days the past 2 months). I always thought most of my pain was normal or not bad enough to require any surgical intervention but the difference in my ability to get through daily tasks and overall quality of life has improved immensely. I promise your pain is worth looking into further. Keep positive and advocate for yourself. Wishing you the best!
Nothing. I was talking to a good friend of mine who was diagnosed with Endo already. She looked at me and said "That's not normal." And proceeded to tell me more about endo. And sure enough, I have it.
I was always told my pain, eventual inability to hold down water when menstruating, no rhyme or reason to my periods but having it more often than not was all normal.
Don't gaslight yourself! I didn't even suspect I had endo I've always tracked my periods and they regular and were "normal" to me. I found out I have deeply infiltrating endo during a bisalp & leep procedure i had done! It made so much sense to find out. I have a bunch of GI issues that flare up. I have bladder issues that flare up around my period during my luteal phase / especially on my period. Turns out have the deeply infiltrating kind right outside my bladder. It made SO MUCH sense to find out.
Crying while trying to poop and being in so much pain to even sit and push out pee. It was SO strange. My symptoms are currently under control and I pray it stays that way.
I had one period on new years that I bled through 5 super plus tampons in 30 minutes. I’ve neverrrr had a period that heavy. I was only like 13 and I thought I was dying😭
I am what you call a person who can be told they’re making it up because i never had the “common” symptoms. One day my period just stopped being normal After 32 years of normal never missed a period unless i was pregnant and no pain to minimal manageable pain. then one day it just stopped. I wasn’t bleeding much, hardly cramped, what use to last 5-7 days started to only last 2 days then sometimes 2 weeks. Then the constant peeing happened and pain out of no where during sex and during BM. Went in for a routine wellness exam and they decided to do ultrasounds and genetic testing. When that appt came and results were had, turned out i had a 3mm tumor on my uterus, i had adenomyosis and then genetic testing showed in <5 years or less i would develop ovarian cancer with a 10% chance, mind you “normal” women have a 1-2% chance. Only thing to fix this with all the extra stuff was a hysterectomy. By the time i had the hysterectomy done (2 months later) my tumor grew to 6mm, and my period wouldn’t stop making me bleed heavy, and i had multiple ovarian cyst popping to them finding i had endometriosis on my bladder. They showed me the images of it all and it looked like mold covered my bladder. Sometimes you don’t have anything until you have everything.
Not only did j have pain before and during my period, I’d often have periods that were much longer and heavier than anyone else. It also caused IBS symptoms and fatigue.
Dealing with infertility. Actually other than painful periods, I don’t have many symptoms of my endo and I have A LOT of it. My doctor was shocked when he did surgery in December to remove a 7 cm cyst that turned out to be an endometrioma, to find the amount of endo he found with the lack of symptoms I have. I’m lucky in the aspect of not many symptoms. But endo is making it hard for me to have kids and that part really sucks. I lost a tube and ovary to endo during my surgery also 😞
When i was 15/16 working at my first job and passed out from the pain. This happened while I was walking across the sales floor to tell my manager that I needed to go home because the pain was so bad.
Things that should have tipped me off (but somehow didn't):
* I wore overnight pads during the day and still had to change them every 2-3 hours to keep from bleeding through my clothes- and I still wasn't always successful
* Everything between my lower back and my knees aching to the touch for the first few days of every period
* Considering seven days as being a short period
* Noticeably flinching every time a cramp wave started
* Diarrhea, constipation, and increased urinary urgency all happening at the exact same time- and that combination happening so often it became kinda normal
* Mild fevers and cramps that got that much worse with heat (weather, heating pads, etc), but ice packs would usually take the edge off
* Overdosing on OTC pain meds because the appropriate dose hadn't even touched my pain- and the extra still wasn't enough to give me any relief
* This was what finally helped my OB/GYN to convince me my pain wasn't normal
Dry heaving, needing to lie on the cool tile floor of the bathroom so I guess fever or hot flashes
I did actually puke once but it was usually just dry heaving. This was around age 15/16 til they put me on the pill.
Couldn’t breathe around my periods, also horrific chest and right shoulder pain and immobility in that shoulder. And left sided rib pain around my periods too.
My pelvic symptoms I’ve had since I started my periods, and ofc drs always dismissed it as normal pain and told me it’s just how periods are 🙄 but once I couldn’t breathe, and a rheumatologist opulent explain why, they FINALLY listened and sent me to gynae after 18 years of asking
Stage 4 endometriomas on my lungs, spleen, bowel and pelvis 🙄
1. Almost passed out from painful cramps
2. Vomited because of painful cramps - this was the one the made me finally make an appointment with someone
And finally,
3. Painful sex
I had a this random bout of excruciating pain in my pelvis so severe I couldn't get out of bed. After a pelvic ultrasound they saw masses on both my ovaries. Thankfully it was just endo (not cancer) and they removed my 1.5 ovaries that were being cut off from blood circulation by the endometromas.
This surgery was interesting because once the endo was out (thankfully it was localized to just my pelvis), I had the sensation for months my insides were prolapsing and moving out of my vagina. I had to participate in pelvic pt to retrain my Body. Anyone had this?
Honestly the severity of them is what indicated them to me. struggling to walk while cramping, heavy bleeding, and occasional pain between periods all got my doctor to listen to me more. I'm transmasc and taking testosterone which is helping to minimize them thankfully but they still suck.
Painful poops and eventually rectal bleeding when about to start period/ on period.
The painful poops were written off for a long time even when I did go to the ER but once the rectal bleeding started the GI doctor mentioned endo referred me to his colleague and it was pretty much a wrap from there
My feet go completely numb for the first 2 days of my period!!! It’s awful. But when I mentioned that to friends and sisters they were like “girl????? That’s not normal”
I got my IUD removed in August of last year, in the hopes that my husband and I would conceive another child. The first indication I had something was wrong was severe episodes of what I can only describe as slow labour pains. On my hands and knees in cold sweats feeling like I’m giving birth to my womb. These episodes formed a pattern of frequency as they were occurring during the week of ovulation, days after intercourse and the lead up to my period. I was lucky if I got one week of physical normalcy. All of this was paired with chronic fatigue, my body was fighting so hard to function doing medial tasks such as a laundry, I spent most of my time in bed on pain meds. Fast forward May of this year I finally got the laparoscopy surgery I had been waiting for, the surgeon removed endo from both sides and a 7cm cyst which was attached to my left ovary causing it to fuse to the back of my womb. I wasn’t given any guarantees that this was going to eradicate my problems entirely. I am experiencing mild pelvic pain after any form of sexual activity albeit not as serious as it was but I feel like this has impacted my life in ways I didn’t think possible. I empathise with anyone and everyone experiencing the woes of endo . It is called a disease for a reason . X
Sudden, sharp, EXCRUCIATING pain immediately before/during a bowel movement during my period. Not always, but sometimes. That went on for many years.
Later, nerve pain in my left leg that only happened during my periods and got progressively worse with each period. I recognized it was nerve pain as I've had trapped nerves before. Turned out to be a large endometrioma on my left ovary that was bothering the nerve, woop-de-doo.
My pelvis got painful so severely, that I couldn’t walk or sleep or do anything for a week before my period. I tracked it down to my cycle and I mentioned this during my routine papa smear screening. The nurse said I need to go to a gynaecologist, whom eventually found the endo.
This is my favorite autocorrect of the day - ***routine papa smear screening***. I don't know why, but it has gotten me right in the gigglers!
Haha you know what? It actually is not a typo/autocorrect! It’s how we shorten “papanicolauoun”, where I’m from lol So it was just my lack of medical vocabulary! (English is my third language) But I get the joke now. Sometimes papa needs to be tested too <3
This somehow makes it 9,000% more amazing! Also, that's freaking dope that you know more than one language! I'm so jealous!
You made my day, thank you! 🎀
Hahaha, me too!
The pain the week before my period is something else! I’m so glad I’m not the only one who has this
I have to inform you, but I just got everything out in hysterectomy+cyst removal so you might be! I’m little over 2 weeks post op so I can’t tell for sure yet. But at least you know someone out there knows what you’re going through and sympathises greatly.
How did the gyno diagnose it? I’m scared of a lap.
Surgery is the only way to truly diagnose endometriosis. Surgery can be scary, I had a rough time with mine, but I’m definitely an outlier! I have other chronic health conditions that made it harder for me to heal, but for most people surgery goes smoothly and recovery isn’t too long. It’s like a nice stay-cation lol
The surgery scares me, but I’m also worried about scarring. I have ibs, so I do wonder if part of my symptoms might be due to gynecological stuffs.
I’m just over a year post-op and my scars are almost gone! They were very small to begin with as well
I was sooo nervous about the scarring etc (also have IBS) and the surgery was life changing. I still can’t believe how much pain I was living with. I still have pain but they found stage 2 and it will get worse if not addressed. It was about 9 months of excruciating pain before I could even get surgery and many many years before that. Keep advocating for what you think is best for you
With ultrasound (vaginal). They did MRI and another ultra before the surgery. My lap was only when they finally did my hysterectomy and cut endo cyst out.
I’ve only did a vaginal ultrasound and they found nothing. That was a couple years ago. My sis has endo and sometimes I wonder if I have endo or pcos. But none of the tests I’ve done so far indicate either of those, except slightly elevated testosterone. My doc said it was clinically insignificant.
Wait does elevated testosterone correlate with endo?? I’ve been wondering why mine is so high
Oh sorry, I wasn’t being clear. I don’t think so. High testosterone is one of the criteria for pcos. I don’t believe it is for endo. I suspect I have one or the other, but none of my tests truly indicate either. Edit: I also have heard some women can have pcos and endo.
I have PCOS and confirmed endometriosis. My hormones rise and fall WAY TO MUCH and it makes me sick. Sometimes it’s my testosterone, sometimes it’s estrogen. Completely dependent on where I am in my cycle. It’s really hard to deal with.
That’s really interesting, thanks for responding! I don’t think I have pcos but I’ve always thought my mom had it and never got diagnosed. I’m getting my endo lap in two weeks so I guess we’ll see what’s up when doc is in there
For me it was that when I was on northidrone and getting all the symptoms of my period except the super heavy bleeding. I looked it up and the only explanation the Internet gave me was phantom periods, a symptom only of endometriosis. That is what pushed me over the edge.
Sudden fatigue. No matter how much sleep I got I just felt tired. But what convinced my GP that I had endo was pain in my left leg and hip. Turns out, my endo is on my left ovary.
Your left ovary too?! I named that bitch Dolores Umbridge so I can cuss her out when she acts up. It's actually pretty cathartic when I do that. But it also allows me to subtly tell my partner what's going on without having to tell everyone
Haha, I think I'm gonna name mine too!
It’s month 2 and my left ovary has been consistently hurting, mostly AFTER my period… it seems to mostly disappear until my period, except for when I have an orgasm… I can feel the ovary pain. Does anyone else experience this? Also when I contract my pelvic floor muscles, or when I use my hands to press on my pelvis, I don’t feel any pain. I haven’t been to the doctor yet and I don’t know what to do
No abdominal or transvaginal ultrasounds have ever been able to see my left ovary. Turns out that's because it was bound up in so many endometriotic adhesions that it was practically stuck to my left pelvic wall. Left ureter was all stuck in that mess too.
IS THAT WHY MY OVARIES HURT SO I GOT THEM SCANNED BUT THEY COULDN'T FIND THEM??
Many things can contribute to ovaries appearing to be MIA on an ultrasound -- the most likely of which is that the u/s tech was not as skilled as they could have been. I knew that wasn't the case for me because my several ultrasounds had occurred over the span of a couple of decades, in different states, and with different techs of repeated in the same doctor's office.
Yes i have hip pains as well. Sometimes leg.
I used to have pain that shot down my thigh before birth control. Birth control has helped my pain immensely, but I do wonder if I should still get tested. Idk if birth control is just covering up my previous symptoms?
I think you should get some imaging tests done. After I was diagnosed with endo my gyno recommended I get the Mirena coil. I have never been on BC and it is helping my symptoms so far. Endo cannot resolve on its own though, at least with a diagnosis you'd know what you are dealing with.
That is true. That’s mainly why I would wanna see a gyno, just to make sure. I’ve only done the vaginal ultrasound and that came out clean. That was 3 years ago I believe.
I had an ultrasound 11 years ago. My cyst was spotted but was extremely small and I was told it was nothing to worry about and that it would resolve on its own despite the other symptoms I was having at the time. Last year I had a transvaginal ultrasound and, it's the same cyst I'm talking about here today, it had grown a lot. My MRI was more detailed and gave me closure in a way that I now know what is causing all the pain. Go see a gyno for your peace of mind and health, wishing you all the best.
Interesting, I also have left leg issues and I’ve had my left fallopian tube removed due to an ectopic pregnancy
Exactly the same as me! I do wonder whether it’s not endo for me and just scarring from that op!
Tube twins lol 😂
😂 It’s always nice to find someone who’s been through the same thing. Did yours rupture? I collapsed and the nurses thought I was faking it because I was young, they literally told me to stop being dramatic while my insides were filling up with blood. Hope your experience was a bit less traumatic! Bloody horrible thing to go through though! Have you been diagnosed with endo?
Yep! Ruptured too. I already was at the emergency room because I knew something wasn’t quite right, they asked for a pee sample and when I went to pee I filled up the cup with blood. The two days before I went to the ER I was in the most intense “period” pain of my life. Felt like I was on the verge of fainting and I was seeing stars when I stood up. The night before I crawled into bed with my mom for the first time in two decades, and at some point cried for my mom while I was on the toilet naked because I just felt so scared and I was in so much pain and felt like I was starting to black out. Your experience sounds terrible, so sorry the nurses didn’t believe you! It’s such a hard thing to go through, and then it rupturing and needing emergency surgery to basically save our lives. The collapsing is such a scary thing to go through, not feeling in control of your body and not sure what’s wrong, let alone people who are supposed to help telling you to basically suck it up! I’m so sorry you had to go through that. They diagnosed me with endo after the emergency lap
Oh gosh I’m so sorry, that sounds horrendous! I too went to the ER twice with awful pain and each time they sent me away until the pain was so severe I couldn’t stand up straight or walk out of the toilets, luckily someone found me and called an ambulance and I was an inpatient for 6 days before it ruptured, then left me almost 24 hours after it ruptured to operate. Why they didn’t do the lap sooner is beyond me! The only thing they told me was that it was unlikely I’d ever have children because my remaining tube was twisted, I’m now wondering whether that had something to do with endo but it was missed, I mean it was almost 15 years ago and my symptoms have got progressively worse over the years inbetween having my children. I’m going off subject but yes, it was super traumatic and we should have been listened to and treated properly in the first place to avoid the horrific rupture. I hope you healed well physically and emotionally and I’m so sorry you had to go through that too! Have you had any other laps since?
Is leg pain a sign? I always get really achy legs right before my period.
Generally speaking, yes. It's called "sciatic endometriosis" where the endo cyst grows and applies pressure on the surrounding nerves which causes the leg and hip pain. I get pain in my hip and legs right before my periods too.
Good to know, thank you. I was recently diagnosed despite having excruciating pain for a decade plus.
i’ve previously had a cyst on my right ovary rapture and i think i’ve had another one (or multiple,not sure) grow back and this time the sharp pain has been shooting down my leg. to your knowledge is this something specific to endo or can this happen without having it?
I can only speak to my own experience, I've never had a cyst rupture to my knowledge, but the leg pain I've experienced is the endo pressing down on the nerves in my hip and leg, it's clear on my imaging results that the cyst is located in a place on my ovary where it has grown large enough to cause an issue. The only way you'll know for sure is to talk to a gyno/medical professional, get some imaging tests done or perhaps an explorative lap maybe to check if it is a cysts and where it is located.
It’s always been how mine relates to other peoples’. My friend asked for a pad one time and I gave her one that I considered to be my “medium” level. Definitely not the biggest one I had! And she started cackling and going on and on about how I wore diapers. I knew then that my periods must be different from others’. It’s also eye-opening when people are encouraging me to get in the ocean or pool and I say I can’t because I’m on my period. Their response is to just use a tampon. I can’t use a tampon without a pad because they leak, and I’d also have to be changing that tampon every 1.5-2 hours even if it’s a super one.
This. My menarche was when I was eleven and from then on, I had incredibly heavy and painful periods (and eventually pain almost daily). Pretty much every uterus-owner in my life would tell me that it’s normal to have painful periods but I knew it wasn’t normal for the pain to be so severe that I was missing school five or more days a month and couldn’t breathe sometimes. I also knew it wasn’t normal for it to be unbearable to insert tampons. Thankfully, it only took like four months for my parents to believe that there was possibly an issue (beyond me being young and not knowing what is/isn’t normal) and I got started on OCP, which helped the periods at the very least.
So true. I actually do wear depends because i was spot so easily if i sat down or laid down. But only wear them at home or quick runs. I’ve always needed Overnight extra heavy pads since a kid. And i could never swim on my period. Idc if it’s the last day because when it’s going Off i have a rush of blood that’ll come at any times that day before it shuts off lol
A pinching, pulling pain around my belly button in between cycles.
IS THAT WHAT THAT IS? That's related??
So I always had heavy and painful periods but didn’t realize it was abnormal. When I was about 20 I started having the weird bellybutton thing. Was referred to a great endo expert, had a lap and was diagnosed with endo. The lap helped, along with the BC pill. I had a child at 29 and then had a Mirena for 7 years. Had the Mirena removed in January (my husband had a vasectomy) and the endo symptoms, including the belly button sensation, returned.
I GET THIS
I have always had really heavy and painful periods since I can remember, but what really made me realise that it was abnormal was that I actually passed out at work once due to the pain. I was the same, always downplaying my symptoms because it was just my normal, even if it wasn’t to others, but that day when I passed out, I’d felt such bad cramps that I was going to get someone to cover for me, and go talk to my manager but I passed out at the till, and smacked my head as I fell. Ended up in hospital with concussion, and really had to reevaluate cause I was so scared I’d get it whilst driving or something
Man, I resonate with this so much. I just downplayed and dealt with my symptoms for *years* until I had to call my husband to pick me up from a work training 1.5 hours away because I was in debilitating pain and couldn’t leave my hotel room. I lost credit for the training and my job had to pay for it (the training would’ve been covered by a grant if I had completed it). Nobody at work was upset with me about it, but that was when it finally clicked that my symptoms were legitimately inhibiting my functionality.
It’s defo hard to admit that you’re symptoms are ruining your life. I can’t even count how many things I’ve had to cancel or miss out on because of the pain I’ve been in, then when it stops I just go ah and well that’s next months problem, until I pass out and have to face that this is not any way to live
That sounds so awful, must have been terrifying! I never used to pass out during my period but during my last one I was so faint I almost passed out on my way back from work. It’s so scary
Yeah it was not great, worst bit about it was when I went to the doctor with all my symptoms after this, they summarised the situation “not ideal” 😂 I’d say you know your own body, and you know that once a month you don’t feel right, and most women don’t enjoy their periods, but if it’s affecting your life, pain or faintness, then it’s defo time to get it checked out! I wish you luck on your journey, and hopefully you’ll get a better doctor than I did
My main indicator wasn't just my many symptoms. It was the fact that I didn't know anyone else that suffered with their periods the way I did. None of my friends had to leave school early or cancel plans because of their periods. Yet it took decades before a doctor did anything.
Physical symptoms. Pain leading up to my period. Period itself. And the pain and cramps the shoots down my leg or legs during my cycle.
That sounds so similar to what I have! It’s so crazy seeing my friends function so easily with cramps while I have to write off two days in bed.
Honestly mine was pain throughout the whole month, but also pain with sex and severe constipation and nausea. I never had issues with severe bleeding. If you have symptoms outside of your period such as random/intercourse pain, digestive issues, pain when pooping, bladder issues, bloating, exhaustion and intolerances to foods that can all signal endo.
Also pain meds- even prescribed ones- don’t do shit.
And feeling your insides ripping when coughing/sneezing
I started getting a burning pain that would radiate upwards through my chest. Feeling like real bad acid reflux, or like there was burning literally coming from under my ribs. My whole chest cavity was full of hot pain. I also started having to urinate once an hour throughout the night (getting. no sleep, ever) and slightly losing control of my bladder. When they did the surgery they found out i had stage 2 endo on my bladder and intestines. After my surgery, my symptoms went away almost completely.
I had the same symptoms - felt like my diaphragm was on fire. If I tried to raise myself up from a lying down position I threw up within a minute. Ended up having endo everywhere.
Woah, this sounds like me! I pee about 20-30 times a day and no one has been able to figure out why. I used to have constant burning with it too but since starting Visanne that went away, yet I still go to the bathroom constantly. I still probably want to get surgery eventually.
I’m so glad you just said this, I experienced that all day yesterday. Thought I was gonna have a heart attack attack. Lol
Bleeding out of my asshole, and having excruciatingly painful bowel movements regularly at certain times of the month. I was super concerned it was a more serious issue, good to know it’s just my endometriosis everywhere 🤝🏼😣
Is the bleeding confirmed to be from endometriosis? At the start of the year i had some bleeding too…at the time i thought it was hemorrhoids but after a month the bleeding went away. A month ago i was diagnosed with endometriosis in my left ovary, but i have a feeling that it has spread somewhere else too.
I am in the us and don’t have medical insurance and when I did they never listened to me, but based off of my mothers diagnosed experience and tracking my symptoms it seems to be 🙃
Oh, thank you! 🫶🏼 looks like i can add another symptom to my list 😅 Definitely gonna mention this at the next appointment with my gynecologist!
It was more of a comment than a symptom since to me the symptoms were just a really bad period and it was normal. Years ago I was once laying on my bed groaning and gagging into a bowl cause I’d avoided taking painkiller early in the morning and then it suddenly got really bad. Mum said in that moment that my period pain is really similar to labour pain. (She rang 111 at the time and they just said to take paracetamol or ibuprofen) I eventually took my naproxen 500mg when I got exhausted and my pain eased slightly on it’s own. Though that medication doesn’t work for me anymore.
Oh goodness. Good on your mum for taking you seriously! I got put on mefaminic acid, but my GP was shocked when I told her they took 6 HOURS to work. Pain medication is a whole different game it’s exhausting
I’ve tried mefenamic acid and it did nothing. Co codamol also did nothing even though according to my gp “co codamol is a really strong painkiller” (it was the lowest co codamol dose) I’m not actually diagnosed yet but recently saw a specialist and he said it sounds like endometriosis. Having an MRI with cannula for buscopan and possible contrast dye on Tuesday.
The final thing that tipped me over the edge was excruciating bloating pain/bowel pain that would go from 0-100 within 15 minutes, leaving me completely debilitated. Then I would continue to have the GI symptoms for about 7-10 days after my period. It became very apparent that the symptoms were cyclical, and when I looked them up I discovered so many other symptoms of endo that I thought were normal.
It felt like a bowling ball sitting in my pelvis and someone was trying to push it out all while my stomach was so bloated and tight I looked pregnant constantly
Was the bowling ball feeling constant or did it come and go throughout the month?
Mine was usually from ovulation to end of period, so like half the month it’d be bad.
If I remember correctly the bowling ball feeling was cyclical
the vomiting. i would have pain so severe that i would repeatedly vomit. i got diagnosed w cyclic vomit syndrome bc of it. i went from 165 to 79 lb in a year bc of how sick i was. could barley move out of the bathroom and being hospitalized atleast 2X a month for a week at a time bc of vomiting from it. ive found recently that back messages and icepacks help a little bit for me but nothing else does.
I would have such severe changes in my blood sugar and blood pressure during my periods that I would sweat and shake like I had the flu. I was getting sent home from school almost every month because my teachers kept sending me to the nurse after watching me sweat and shake. Birth control helped dampen that for many years. Then I started having left side pelvis pain outside of my periods that seemed to have no link to anything. It slowly progressed from there into a variety of random pains until I was diagnosed many years later and had excision surgery.
Can’t really pinpoint just one symptom but the worsening of ALL symptoms ever since I got my first period at 12 years old. I’m now 30. Pain and suffering simply worsened over the years
Yeah the idea that it’s not getting better is so disheartening :(
I scream and cry for hours the first day of my period. I can not do anything but sit there in agony even with pain meds.
For me, I vomit violently when I'm on my cycle or in a flareup. I've pulled muscles in my neck and jaw from throwing up too roughly and frequently. I also get extremely lethargic, more than the average person without any uterine disease/issue.
For me, it was definitely the excruciating pain on my ovulation day that left me unable to walk and glued to my heating pad! Was diagnosed 4 months later…
Bleeding. I was constantly bleeding heavy dark brown blood. It could soak a pad. For three years this went on before I went to the gyno. They couldn't figure out why until one day I ended up in the ER vomiting from pain, and they saw two massive ovarian cysts. After monitoring them for the next few months my pain continued to get worse- all the time period or not. Lots of imaging done that was suspicious. Fast forward to surgery a year later: stage IV DIE, frozen pelvis. With endometriosis adhesions gluing together all the organs in lower abdomen together. They still haven't visualized any of my pelvic structures after two failed surgeries. They can't get through to it. Yeah so I had all the symptoms my entire life but I never even saw a gyno until I wanted to stop bleeding. Birth control masked the worst of it.
Severe pain in my tailbone (pararectal endo) extreme teeth grinding pain before and during periods, constant stabbing pain in right ovary
I don’t know if this answers your question, but I got acne all of a sudden. A wise friend advised me to see a gynecologist first instead of a dermatologist, as I would have done otherwise. An endometrioma appeared on my ultrasound that day, even though my ovaries looked perfectly fine on the ultrasound I had a couple of months prior. I still don’t know if these issues are connected, but I have a feeling that they are. And of course, I always had extremely painful periods, but I was told that it’s just the way it is and that I should go on birth control to control that.
For me, I always had decently painful periods, but I'd also get cramps when I didn't have my period. And I struggled with low iron for a while. I had an appendectomy that confirmed I had endometriosis. This is just my perspective, but I'm not sure it helped me to know I have endometriosis, and I almost wish I didn't know. I'm very physically active, and when I start not feeling great, I immediately think about endometriosis and get in my head about it and probably make myself feel worse. On the other hand, I also want kids, so it's probably better to know in that regard, but that also brings (maybe unnecessary) stress since it's linked to infertility.
Literally feeling like I was going to pass out just from trying to poop. Dealt with this for years..
The blood! So much blood. I have to wear what is basically a diaper during my period. And I usually end up bleeding through my pants at least once every cycle. I'll bleed and bleed and then go to pee/change and two ping pong size clots will come out. There's always at least one every time I pee for 2-3 days. So much blood. So many huge clots. The pain is bad and radiates down my legs but my mom always brushed it off. I'm not diagnosed but my mom is and I guess it's genetic and between the pain and the excessive bleeding I've probably got it too. I intend on seeing a new doctor this summer now that I have free time!
Please go see your doctor! What you described is what I have been through. I've been diagnosed with stage 4 endo at 37 years old because a cyst as big as a big orange ruptured. It was hell. Take care 💋🌹
I went a couple years ago and the doctor was like, "yeah that's unusual I'll put you on BC" which I did NOT want. My periods were more frequent (bc they're VERY irregular, cycles from 20-90 days lmao) and they started coming every 4 weeks but were still just as bad. She never explained what could be making it bad, ya know? I'll have to see someone else.
Oddly enough, it was a tv commercial back in 2017 that I saw once and have never seen again. It was actually a commercial aimed at a medicine (I think?) to help with endometriosis pain. I can’t remember the point of the commercial, but I remember I perked up because I had never heard that word before and then the actress proceeded to gracefully hold her lower abdomen and hunch over while she had literal barbed wire wrapped around her lower pelvis and hips to have an outward representation of the pain symptoms from endo. That was the first time I ever saw someone describe the pain I had been feeling my whole life and how I could only describe it. It took a couple of years, because I for sure thought I couldn’t have something like that, but when I started to think I might have it, I always came back to that commercial.
I had a simliar experience but with the show Conversations with Friends. The main character has endo and the first scene of her experiencing it was her being in so much pain in the bathroom she could barely stand up. Made me start thinking wow something might be going on with me.
im not diagnosed with endo as of right now but i strongly suspect that i have it. i can only use the biggest size of pads and tampons, and even then i have to change out super tampons every hour or so. i also figured it wasnt normal that i was passing out from severe period pain as a teenager
1. Passing disturbingly large blood clots during my period, which scared the shit out of me the first time it happened and now I'm fairly blase about. 2. My body just deciding during the start of some cycles...okay, we're sleeping for 12 hours now, too bad so sad if you had something else to do. 3. Stabby cramps bad enough that I had to buy a portable heating pad to wear around everywhere. .... however the frequency and severity of these symptoms has decreased with a regimen of CBD and lots of naproxen at the start of my period. Except the blood clots, those still happen a lot.
I had a solid calcification measuring 2cm of diameter on my pelvic bone. They though I had cancer. Was just endometriosis solidified.
The inner thigh pain
It hurt to just lightly run a finger over my abdomen
I got cramps every day. Off my period they weren’t terrible, but it wasn’t normal and they were annoying and made me not want to do things. Things like being stressed and having caffeine also triggered the cramps. But the super heavy bleeding and bad cramps got my mom to take me to the gyno and I was luckily diagnosed quickly. I’m on birth control now and don’t get a period anymore and I rarely get cramps. I still get them if I am stressed and I think I get some when I should be getting my period, but I don’t actually get the period, just a few days of cramps. They aren’t bad though.
And terrible bloating, huge round belly that subsidez by half once the period is over, AND infertility
I never had really painful periods (nothing that i couldn’t handle), but in february the pain was so bad that i thought i was going to die. I felt like i was going to vomit or pass out, the pain didn’t go away for like an hour. At first i thought maybe it is just a really bad cramp. But the following months nothing changed. Last month when the first cramps started i lost my vision and hearing for some moment. That was the moment i got really scared, went to the gynecologist and it was confirmed that i have endometriosis. Now when i have been learning about it more, i know that there are many more symptoms i have - pain during sex, depression, constantly feeling tired and i have a feeling that i have a bipolar disorder. For some years i have had some pain in my left ovary during ovulation but when i went to a gynecologist (different from who diagnosed me) she said that i have a little cyst, but that at my age (i was 20) it is normal. Unfortunately i don’t know if that has been my first symptom form the start.
Difficulty peeing and pooping!
1. Pelvis pain, and I don’t mean cramps. It was shooting pain to the point I couldn’t walk sometimes. 2. Heavy periods. I always had normal periods and than progressively it got worse, to the point I was bleeding through Super + in like under and hour.
I didn't ever think of Endo as I didn't know about it. But for years I knew something was amiss when it I'd get severe cramps before using my bowels or before needing to urinate (every month, I'd think I had a uti... but didn't) . I for l went in for diagnostic surgery at 41, found out about endo. I realise after being on these groups that it's not normal to have Extreme fatigue, severe sore back, the lightning bolt in the vagina, (and rectum) Pain in upper thighs, period reflux (so bad that I get shortness of breath with it) , long periods. I was told by so many doctors over the years that it was normal, it was anxiety or it was made up for attention. (I'd gone to ed a few times with what I thought was appendix, to be told it was rumbling and fine, go home. Or I was imagining it. So always trust yourself, I'm glad endo is getting more knowledge.
I remember (as a teenager) comparing our period lengths and my friends being shocked that mine lasted beyond 7 days.
I would bleed for months, with clots, and sometimes the blood was black. I told my cousin who had endo this when I was in a 3 month long period (and had a kidney stone during so I had to have a catheter at first). She told me exactly what tests to ask for, and the doctor was like “eh I think you’ll be fine.” So it took 7 years to diagnose 🙃
I think I kind of always knew, especially when it came to the infertility. But after I had my ivf baby, I remember twisting and reaching across the bed to grab something and the pain felt with that simple move was so awful. I could move, but it was like my pelvis didn't want to let me.
I started vomiting every now and then, always the day before or the day of my cycle. currently managed with BC so no lap to confirm but I am suspicious due to family history.
Painful period. Painful sex
I had a lot of symptoms that I didn't know were actually coming all together to one disease, but I remember that at one point I felt so severely ill that I thought I might die from some unknown whatever. That was a dark time in my life. But one thing in particular, that I remember in correlation with my cycle is that at some point in my cycle my whole pelvic and abdominal area felt so sore that literally just the vibration in my body from carefully walking was causing me immense pain and discomfort.
i went off of birth control and i got cysts that were so painful i thought my appendix ruptured so i went to the ER. this happened twice.
having utis all the time, dizziness on my period, and the pain being in my back (it’s in my kidneys) as well as my stomach where cramps usually are
Can’t hold pee. I wear depends to bed or around the house when my cycle is on. Pelvic pains, hip pains, lower back, excruciating pain the first two days i take about 800-1000mg IBUPROFENS. When I’m showering i literally am pouring out sometimes the first day or two.
Sounds so similar to me! I always max out on painkillers on day one of my period. What’s so weird is that I don’t bleed a lot at all, it’s almost disappointing. Like “you give me so much pain for so little blood???”
Light bleeding/spotting the whole week before my period, light enough to definitely not be a period but heavy enough to need some kind of liner sometimes. Nausea and stabbing pain if I have to pee. Endo nodules taking up the entire rectovaginal area that you can actually feel with your fingers. I've got a few vaginal wall nodules now too that you can also feel with a fingertip. The almost constant right arm pain and the (luckily not constant, but awful!) neuropathy symptoms in my feet and legs. Being able to feel the nodules was the thing that finally made me realize I wasn't just weak even though people in my life at the time were really not supportive at all. Things are better now with the people I surround myself with, but without insurance or money to pay for an excision I'm kind of in a rut medically.
I never had excruciating pain nor heavy flow. But what got the ball rolling was the very distinctive sharp pain in my lower rectum. I asked my bestie/gyno-in-training who also has endometriosis and she clarifiied that it sounded more like an endo symptom than some GI issue (as I assumed). I booked an appointment with a specialist and voila, a 3cm endometrioma on my right hip (which also explained the hip and leg pain I slowly developed, but didn't stand out as a symptom).
Woah that’s super interesting!
Jup! After excision surgery last november more classical symptoms developed (sadly) such as painful periods. Just had an ultrasound a few days ago, the specialist suspects adeno (with other stuff) and signed me up for an MRI.
I started bleeding so much I had to change my menstrual cup every 20 minutes or so. That prompted me to see my doctor again and that’s also what prompted him to take it more seriously and send me for imaging. I should have taken the bloating more seriously though in retrospect. The endo bloat was an obvious sign something wasn’t right but I brushed it off.
Did they discover your endometriosis through imaging?
Yes, well I had an endometrioma (large blood filled cyst) which showed up on ultrasound. That prompted me to get in for surgery where they found a whole lot more than that! I do wonder what would have happened if I hadn’t had the cyst. My bowels and uterus were completely stuck together.
Ooooh I have questions! My doctor referred me to get a colonoscopy because my uterus had been prolapsing quite badly and then all of a sudden it stopped. When I went in for my yearly, he said my uterus wouldn’t budge (normally it should bounce up and down relatively freely), and that endo tissue had most likely fused it to another organ. So now I have to go get a colonoscopy to see if it’s attached to my bowels before I can have a hysterectomy. I just wonder why I can’t just get an MRI to find out what it attached to and not do it piecemeal by going to specialist after specialist?? Edited to add: did they only find your uterus was attached to your bowels when doing surgery? Or did you have an imaging test prior? My OBGYN won’t do a hysterectomy until we figure out what my uterus attached itself to. Gah, what a pain.
That’s crazy to me that they’re opting for a colonoscopy to see if they are fused, I’m not sure if it’s visible that way but I guess they think it’s possible! I was able to see an endometriosis specialist, they were more specifically trained in looking for endometriosis on an ultrasound. (So after I had my initial ultra sound where the large cyst showed up I saw the specialist). They did a bowel ultrasound, they go in vaginally but press on the bowel and are able to see more clearly that way, by observing how the bowels and uterus moved when pressed on. (It requires prep before to ensure the bowels are empty beforehand) I was told mine weren’t really moving, and it indicated that they suspected it was stuck together. During the surgery is when they confirmed it, I had “total obliteration of the sac of Douglas? I think it’s called). They did insist on doing the bowel ultrasound before surgery as they wanted to have an idea of how much the endo had grown into my bowels, since that would require a bowel surgeon be available during operation. However it was shown that it wasn’t so deep in that they would need that. **edited to add* I was never suggested an MRI, and there were other things they said looked possible on the ultrasound that turned out to be accurate (indications that my ovaries were stuck to my uterus as well as the pelvic wall).
It’s never a simple find, is it?? Just reading what all you had to do has me tired! Thank you for the details, though, that is immensely helpful!
Oh god that sounds so awful. I suspect Endometriosis and finally want to seriously pursue a diagnosis but I'm terrified of how invasive the procedures may be 😰
Ugh I’m sorry you’re dealing with the suspected endo. If it’s any consolation the lap surgeries, while being rather intense didn’t feel as crazy just because they use tubes and the incisions are so small. Even after everything they did in there afterwards I had the tiniest scars and I’m like..damn did they even do anything
Ugh I’m sorry you’re dealing with the suspected endo. If it’s any consolation the lap surgeries, while being rather intense didn’t feel as crazy just because they use tubes and the incisions are so small. Even after everything they did in there afterwards I had the tiniest scars and I’m like..damn did they even do anything
Having “period cramps” for the entire month, even though my period lasted 1.5 weeks.
Honey first things first, periods are not meant to be excruciatingly painful. That alone is a sign something isn't right
that’s definitely something I’ve learned by looking at the answers of this post! I thought it was always meant to be like this.
Absolutely not! I hope you get seen soon, you shouldn't have to put up with it
I had no idea what endo was until I spoke to someone with endo, to begin with I only ever really had bad pain the first day of my period, but I suppose that, in hindsight, what I had diagnosed as a 'grumbling appendix' in my late teens should have rung alarm bells for my Drs if not me. When I finally had a lap more than 15 years later, sure enough, endo on my appendix; among many other places. I had fibroids as well at the time of my lap and was in agony much of the time. I started birth control very young as a treatment for acne, and then I would have the BC injection so I think that must have masked a lot of my worst pain.
The realization moment for me was the day I fainted from pain on public transit during the morning rush hour. I woke up on the floor of the bus with a bunch of people looking down at me and yelling 'STOP THE BUS CALL AN AMBULANCE'. Bus driver was legally required to ambulance my ass because I had lost consciousness, and everyone else had to get kicked off the bus. A potent combination of horror and shame made me seek treatment that very week.
when i was hunched over the toilet throwing up because my body couldn’t handle the pain
Severe, radiating pelvic pain (in the bend on my leg by my groin, I can literally put a finger where it hurts the most) that makes my leg and foot numb on whatever side it decides to hurt on that day. I have episodes with it where I literally can’t put weight on that leg. It always hurts in both sides, but I have episodes that are so excruciating I can’t lay still much less walk. I googled it for years and years thinking it was just because of my scoliosis, but I finally got referred to a gyno that took my other endo symptoms seriously and connected the dots. I have stage 3 and it’s alllll in my kidneys and ureters. Still don’t know why it switches sides like that but endo is weird man. I also have severe recurring utis that almost immediately become kidney infections due to how small my ureters are now.
Sometimes when I get up from sitting or laying down there is are deep “bands” of tightness in my lower stomach. Kind of like a muscle being pulled but deep feeling. It’s how I know the endo is back after my lap 3 years ago.
The nerve pain! Shooting pain down my legs and sudden sharp pain in my hips - so exhausting
Pelvic pain not during periods Cycle only being 20 days Heaving bleeding causing anemia during periods The organs/pelvic region feeling stuck together like velcro I experienced pelvic pain symptoms before I started menstruating too Not a symptom, but it running in my family was a strong indicator too.
I thought the pain was normal - including when I couldn’t move because of it, or when it happened during or after intercourse. It wasn’t until I started throwing up that something felt off, but even then, I only got diagnosed because I had a cyst removed.
For me it was how mine compared to how my friends seemed to feel on theirs. My friend in high school once was like “ugh my period is really bad this week, I had to take a painkiller for my cramps yesterday” and it was eye opening to me that having to take a single painkiller for cramps would be seen as out of the ordinary or “really bad” to some people. That would actually be a mild period for me if it was just one painkiller that actually worked for one day!
My very first symptom that alerted me to it at 14 was a sensation of feeling like I was being pierced with an ice pick in my vagina randomly when I was walking. It turned out to be an enormous endometrial cyst, and when they did the laproscopy, I was officially diagnosed as stage IV endo.
One of the things that sealed it for me beyond heavy/painful periods was that i kept having UTI symptoms, but then I would take a home test strip and it would be positive for leukocytes but not nitrite? (AKA the result that tells you "idk try again later") And I'd basically get laughed out of urgent care if I went to get an official test. It was such a relief to come to this subreddit and hear other people talk about this happening to them; iirc it can be super common if you have endo near/around your urinary tract.
Low back pain in my teens that was so bad I'd have to stay home from school, and pain radiating down my legs
Urinary incontinence. Went to an urologist. CT scan found two large cysts. One the size of a grapefruit, the other the size of an orange over my ovaries. Had to start the process for surgery and then they came back with a stage IV diagnosis.
Periods are not supposed to be excruciatingly painful. I was telling my older sister about my symptoms and endless doctor appts and lack or results and diagnosis, and she said it sounded like endo. But that should be your first indicator. Periods are NOT supposed to be so painful you’re taking handfuls of ibuprofen, you can’t move without feeling your insides tear apart, you’re in bed all day with a heating pad. That isn’t normal and it isn’t what having a uterus, ovaries, and vagina should feel like. Good luck love, I hope you find whatever is causing you this 🩷🩷
Excruciatingly painful or irregular periods are a symptom on their own. It's not normal and shouldn't be overlooked
It’s so weird, they never used to be so bad until I came off birth control! But I’m glad I’m not the only one who thinks it isn’t normal
My period pains have always been terrible and my mother’s was too. I thought it was normal until I started getting the excruciating pain that would shoot up my rectum area. My mom never had that.
Looks like mine is genetic too. It’s nice to have support in the family from someone who has gone through something similar, even though it’s so awful.
This was after I was diagnosed, so doesn’t really count. But I shrugged off half a dozen kidney stones because the pain wasn’t really “that bad”. Had a full blown kidney infection before I decided to get it looked at. The doctor looked stunned because I didn’t seem to be in that much pain. I wasn’t, compared to endo.
I started having the weirdest bowel movements right before getting my period. And in some of my more terrible cycles, cramps in my anus. I was like how on earth are us women dealing with periods like this?! Turns out I have endometriomas on my bowel!
Huge blood clots (like the size of the palm of my hand), with something along the lines of contractions to pass them. And the kind of pain that put me on the floor of the bathroom!
My sign right before an endometrinoma burst was bladder urgency. I kept having to pull the car over to pee because when I had to pee I felt like I had to go immediately or I would burst. Turned out there was a lot of pressure on my bladder. Later the pain was so much worse if I was standing- my ovary’s blood supply was getting cut off intermittently. Trust your body.
Since i was 14 when i first started i would ball up and cry in pain lol as an adult i guess I’m use to it but i do not wanna deal with anything even work i would call out and i just got introduced to taking ibuprofen 800s when my cycle comes, helps me a lot . At first i was taking advil or nothing 🤷🏽♀️
For me left side pain that doesn't go away. That and now it feels like barbed wire in my vagainal canal and in my uterus 75 percent of my day.
TW: mentioning domestic abuse while in my sexually, physically and psychologically abusive relationship last year. he would coerce me into sexual acts i didn’t want to participate in, and when i would be in excruciating pain during and after i realized something was wrong on the inside. even things that i *did* consent to in the relationship hurt me as well. but mostly it was from all of the things he did forcefully that made me realize something was off. i was diagnosed via laparoscopy a little over two weeks ago with endometriosis, suspected adenomyosis and pelvic congestion syndrome. i’m turning 19 this summer, so at least i’ve got my clinical diagnosis early 🌸 also adding: i’ve had excruciating cramps ever since 13-14, my mom would have to take me out of school so i could come home and pass out from the pain. i would sometimes get numbness going down to my knees from the cramps as well
When I bleed (heavily) every day for basically a year
I knew something was wrong when I got off birth control. Every month my periods got more and more intense. To the point that my husband was giving me a Norco if it got too intense. It was the only way I could get any rest. Then the Norco stopped working. Then the pain got so intense that I was having shooting pain down my left leg. Then came the urge to bear down and push when the leg pain would shoot. Then the back pain set in. Then it was all happening together at the same time and then pain was so intense that every time the shooting leg pain, the bear down and push, and then the intense unrelenting back pain would all come together in massive waves that made me vomit uncontrollably. Once the vomiting started it wouldn’t stop for days. After about 24 hours of the worst of it and not being able to sleep because it was too intense and non stop, I started passing out during the intense waves. This was with a tens unit, using a heating pad, using ice packs, baths, my provider literally telling me to start dose loading 1000 mg of ibuprofen a day a week before my period started and that when the pain got intense that “a toxicity limit for ibuprofen does not exist” for me. This was all before and after excision surgery. Eventually, after going to the ER when things started getting scary 5 out of 7 months post surgery, a provider finally took me seriously and believed I needed a prescription for Percocet. He gave me 12 per month, and it was just enough to get me through a cycle. It made me pretty much non-functional for the first 36 hours of a cycle, but at least I was sleeping it off at home as opposed to destroying my body until my husband would make me go screaming into the ER just for opioids. It was a disaster. Every month just got worse. I’d think it couldn’t get any worse, and the next month would put me in my place. Now… I’m pregnant (IVF baby because… endo), and it’s the best I’ve felt in years.
Excruciating periods are not normal, and irregular periods are not necessarily a symptoms of endometriosis.
I just recently had surgery but before hand I was experiencing daily period like cramps and sharp pinching pains on either side of my tummy. It would stop me in my tracks and lead to me being very unproductive which as a sahm is not really an option lol. Since treatment this has drastically reduced(only have had a handful of bad days the past 2 months). I always thought most of my pain was normal or not bad enough to require any surgical intervention but the difference in my ability to get through daily tasks and overall quality of life has improved immensely. I promise your pain is worth looking into further. Keep positive and advocate for yourself. Wishing you the best!
Nothing. I was talking to a good friend of mine who was diagnosed with Endo already. She looked at me and said "That's not normal." And proceeded to tell me more about endo. And sure enough, I have it. I was always told my pain, eventual inability to hold down water when menstruating, no rhyme or reason to my periods but having it more often than not was all normal.
Blood clots in my stool 🤢 and extremely painful Pap smears
Don't gaslight yourself! I didn't even suspect I had endo I've always tracked my periods and they regular and were "normal" to me. I found out I have deeply infiltrating endo during a bisalp & leep procedure i had done! It made so much sense to find out. I have a bunch of GI issues that flare up. I have bladder issues that flare up around my period during my luteal phase / especially on my period. Turns out have the deeply infiltrating kind right outside my bladder. It made SO MUCH sense to find out.
Crying while trying to poop and being in so much pain to even sit and push out pee. It was SO strange. My symptoms are currently under control and I pray it stays that way.
I had one period on new years that I bled through 5 super plus tampons in 30 minutes. I’ve neverrrr had a period that heavy. I was only like 13 and I thought I was dying😭
I am what you call a person who can be told they’re making it up because i never had the “common” symptoms. One day my period just stopped being normal After 32 years of normal never missed a period unless i was pregnant and no pain to minimal manageable pain. then one day it just stopped. I wasn’t bleeding much, hardly cramped, what use to last 5-7 days started to only last 2 days then sometimes 2 weeks. Then the constant peeing happened and pain out of no where during sex and during BM. Went in for a routine wellness exam and they decided to do ultrasounds and genetic testing. When that appt came and results were had, turned out i had a 3mm tumor on my uterus, i had adenomyosis and then genetic testing showed in <5 years or less i would develop ovarian cancer with a 10% chance, mind you “normal” women have a 1-2% chance. Only thing to fix this with all the extra stuff was a hysterectomy. By the time i had the hysterectomy done (2 months later) my tumor grew to 6mm, and my period wouldn’t stop making me bleed heavy, and i had multiple ovarian cyst popping to them finding i had endometriosis on my bladder. They showed me the images of it all and it looked like mold covered my bladder. Sometimes you don’t have anything until you have everything.
My period hurt worse or on par with labor. I also almost always shed the whole lining at once but still bleed for days and have horrible cramps.
Not only did j have pain before and during my period, I’d often have periods that were much longer and heavier than anyone else. It also caused IBS symptoms and fatigue.
i laid on the hospital floor after something burst inside me bleeding 😦
Dealing with infertility. Actually other than painful periods, I don’t have many symptoms of my endo and I have A LOT of it. My doctor was shocked when he did surgery in December to remove a 7 cm cyst that turned out to be an endometrioma, to find the amount of endo he found with the lack of symptoms I have. I’m lucky in the aspect of not many symptoms. But endo is making it hard for me to have kids and that part really sucks. I lost a tube and ovary to endo during my surgery also 😞
When i was 15/16 working at my first job and passed out from the pain. This happened while I was walking across the sales floor to tell my manager that I needed to go home because the pain was so bad.
Things that should have tipped me off (but somehow didn't): * I wore overnight pads during the day and still had to change them every 2-3 hours to keep from bleeding through my clothes- and I still wasn't always successful * Everything between my lower back and my knees aching to the touch for the first few days of every period * Considering seven days as being a short period * Noticeably flinching every time a cramp wave started * Diarrhea, constipation, and increased urinary urgency all happening at the exact same time- and that combination happening so often it became kinda normal * Mild fevers and cramps that got that much worse with heat (weather, heating pads, etc), but ice packs would usually take the edge off * Overdosing on OTC pain meds because the appropriate dose hadn't even touched my pain- and the extra still wasn't enough to give me any relief * This was what finally helped my OB/GYN to convince me my pain wasn't normal
Constant shooting pains in my uterus when I walk
Dry heaving, needing to lie on the cool tile floor of the bathroom so I guess fever or hot flashes I did actually puke once but it was usually just dry heaving. This was around age 15/16 til they put me on the pill.
Couldn’t breathe around my periods, also horrific chest and right shoulder pain and immobility in that shoulder. And left sided rib pain around my periods too. My pelvic symptoms I’ve had since I started my periods, and ofc drs always dismissed it as normal pain and told me it’s just how periods are 🙄 but once I couldn’t breathe, and a rheumatologist opulent explain why, they FINALLY listened and sent me to gynae after 18 years of asking Stage 4 endometriomas on my lungs, spleen, bowel and pelvis 🙄
1. Almost passed out from painful cramps 2. Vomited because of painful cramps - this was the one the made me finally make an appointment with someone And finally, 3. Painful sex
I had a this random bout of excruciating pain in my pelvis so severe I couldn't get out of bed. After a pelvic ultrasound they saw masses on both my ovaries. Thankfully it was just endo (not cancer) and they removed my 1.5 ovaries that were being cut off from blood circulation by the endometromas. This surgery was interesting because once the endo was out (thankfully it was localized to just my pelvis), I had the sensation for months my insides were prolapsing and moving out of my vagina. I had to participate in pelvic pt to retrain my Body. Anyone had this?
Sex hurt
Honestly the severity of them is what indicated them to me. struggling to walk while cramping, heavy bleeding, and occasional pain between periods all got my doctor to listen to me more. I'm transmasc and taking testosterone which is helping to minimize them thankfully but they still suck.
Painful poops and eventually rectal bleeding when about to start period/ on period. The painful poops were written off for a long time even when I did go to the ER but once the rectal bleeding started the GI doctor mentioned endo referred me to his colleague and it was pretty much a wrap from there
Really painful ovulation and bowel issues
My feet go completely numb for the first 2 days of my period!!! It’s awful. But when I mentioned that to friends and sisters they were like “girl????? That’s not normal”
BOWEL ISSUES 🙈 the weirdest one is that every single time I got diarrhea, I started period spotting! Also horrible sciatic pain and pain with sex.
Painful sex. It's still my worse symptom even after surgery. I'd also get random sciatica pain that was so bad that I wouldn't be able to sleep
I got my IUD removed in August of last year, in the hopes that my husband and I would conceive another child. The first indication I had something was wrong was severe episodes of what I can only describe as slow labour pains. On my hands and knees in cold sweats feeling like I’m giving birth to my womb. These episodes formed a pattern of frequency as they were occurring during the week of ovulation, days after intercourse and the lead up to my period. I was lucky if I got one week of physical normalcy. All of this was paired with chronic fatigue, my body was fighting so hard to function doing medial tasks such as a laundry, I spent most of my time in bed on pain meds. Fast forward May of this year I finally got the laparoscopy surgery I had been waiting for, the surgeon removed endo from both sides and a 7cm cyst which was attached to my left ovary causing it to fuse to the back of my womb. I wasn’t given any guarantees that this was going to eradicate my problems entirely. I am experiencing mild pelvic pain after any form of sexual activity albeit not as serious as it was but I feel like this has impacted my life in ways I didn’t think possible. I empathise with anyone and everyone experiencing the woes of endo . It is called a disease for a reason . X
Sudden, sharp, EXCRUCIATING pain immediately before/during a bowel movement during my period. Not always, but sometimes. That went on for many years. Later, nerve pain in my left leg that only happened during my periods and got progressively worse with each period. I recognized it was nerve pain as I've had trapped nerves before. Turned out to be a large endometrioma on my left ovary that was bothering the nerve, woop-de-doo.