r/endometriosis

I knew I didn't want biological children before the endo and adenomyosis I always knew I wanted to adopt even as a child I told my parents I wanted to help the kids who were already here. The Endometriosis just cemented that, holy shit. So many women even in western countries are homeless, in abusive relationships, have to choose between food and medication. I've met countless older women who none of the current medication worked for. Many of them are abusing drugs or alcohol simply to be in less pain.I cannot do this to another woman. I hope my non existing daughters are enjoying themselves 🍃

I'm actually mortified and I need someone to tell me it's okay.

Today is/was my first day training as supervisor. Well, I felt myself bleeding so I excused myself to the bathroom and sure enough blood... massive amounts with huge clots.... I go to tell my boss so I can take an early lunch to clean myself up... she SCREAMS at me on the sales floor to clock-out, I stare in disbelief which prompts her to yell louder, mind you we're on a busy sales floor with customers and other co-workers, so naturally I start bawling! The supervisor before me runs over and asks what's happening, I tell her I started my period early (easier than explaining) to which my boss tells her to take me to the back while she's slamming my register, cussing people out, and like I don't blame her but hormones high along with the extreme embarrassment of now bleeding through my pants I just cry more and louder. The (clocked-out mind you) supervisor hugs me and helps me clock-out, she even offered me a ride while reassuring me it's not my fault. After calling my Mom crying, amd later also my Dad, I then slunk away to the parking lot not saying goodbye to anyone and just sorta cried till my grandmother showed up. Which thank goodness she did, because I usually use rideshare and that was not a conversation I was prepared to have.

So least to say I'm extremely embarrassed, first day as shift lead/supervisor and I hemorrhage my ovary leading me to bleeding everywhere. I don't blame my boss, she has surgery tomorrow and was clearly stressed, her anger very much wasn't directed at me I just don't take being yelled at like that well. Plus needing to tell any other grown adult that at my big person age I bled through my pants it's embarrassing as it is. I've been reassured over and over by multiple people it's fine, it literally cannot be helped, but I'm deathly afraid to go to work Monday. Like, I'm supposed to be the supervisor and the first time I'm given a chance I CRY and BLEED all over the service desk.

Worst part is it stopped between the car ride home. I've been procrastinating getting surgery to cauterize the lesion so really it's on me, but I've never had an event like this. I've been spotting but like, I was soaking through a pad in 5 minutes for a good 30 - 45 minutes. I guess I just moved the wrong way, when it started it felt like my insides ripped open, genuinely I was getting woozy. I probably could've gone back to work if I wasn't yelled at, which is what really kills me.

Before anyone asks, yes I called my OB and yes I'm going in ASAP.

Edit: you all are so kind it brought me to tears again lol I'm so grateful for this sub <3

This specific manager will be gone for months so she won't be an issue for the time being, she's usually very nice I think it was just the straw that broke the camels back

You've all made me feel so much better at going back Monday, genuinely I'm so appreciative of all the kind replies! It's made me feel so much better! I wish I could hug all of you <3

I have not officially been diagnosed with endo, but it was confirmed last fall that I have an endometrioma and I have many many symptoms for endo. I was aware of what endo was but not all the symptoms or full extent of the disease. My gyno made it sound like it was only a disease that caused some pain during intimacy and heavy periods.

I have had three flare up episodes in the past 9 months and the most recent one was the most excruciating pain I’ve ever been in. I didn’t realize till the third one a month ago what was going on. I was on the bathroom floor screaming, unable to move, and dry heaving. The next day I couldn’t walk everything was so sore from the flare up. I did some research and figured out what is going on and made soooo many life style changes to be as anti inflammatory as I can be.

I’m at the point in my cycle now where these flare ups tend to happen and I have been fighting off panic attacks for the past two days (ik the stress isn’t helping). On top of the terror of a flare up I’m scared in general and so angry at my gyno. I found out that this “period” disease can grow into any organ in my body, and is consistently ranked one of the most painful conditions to live with.

I guess I post all this to get it off my chest, but to also ask how did you all cope with the realization of the severity of this disease?? I feel overwhelmed and lost, and honestly hopeless. I start grad school in a week and I’m terrified this disease will progress to the point I can’t continue my schooling…

I just received a diagnosis of superficial endo today, after 20 years of severe symptoms. I was told it’s not “surgery bad” and that I need to go on the pill, maybe get the coil and seek out pelvic physio. I’m also frustrated at myself as due to nerves and tension, the scan couldn’t be completed and the bowel was only partially scanned: many of my symptoms are bowel-related, so I’m worried important info was missed.

While I’m thrilled to learn it IS endo and feel vindicated, I was so surprised to learn it’s not “worse” and that my treatment options are so limited. :( I also feel a bit silly that such mild a case is so debilitating for me. I was only mentally prepared for two outcomes: either no findings, or more significant endo. I had never imagined it would be so limited. I was even researching surgeons before the appointment as I am so desperate for relief I didn’t want to wait a minute more to get help.

Just venting. Any thoughts or moral support welcome!

Ok please if anyone has experienced something similar let me know. During the day, I feel fine… but at night, I’ll lie down in bed and after being asleep for a few hours I’ll wake up to terrible radiating/burning/aching lower back pain. Mattress doesn’t matter, I’ve slept on at least 10 different mattresses with the same issue. The only relief I can get is if I sleep in a sitting up position (not lying flat). The pain improves once I get up and move around again.

I was tested for arthritis (negative), inflammation markers (negative), I started to work with a physio on strength and mobility and saw a small improvement? But nothing major. I did note it was potentially worse at different times of my cycle so I thought maybe it was my endometriosis as I know it’s in my pouch of Douglas which sits behind the uterus near the spine. Anyway, I’m currently awake at 5am simply because the pain was absolutely horrible last night. I’m also now 6 weeks pregnant, so I can’t take any anti inflammatory medication.. I’m at a loss! What’s causing this?! Could it be my endometriosis or adenomyosis?! It’s been pretty bad for at least 6 months now.

Does anyone have any tips or tricks for gas pain? And I mean like farting gas, not the stuff that goes to your shoulders.

I have been farting like CRAZY. I didn't poop for 4 and a half days so I took a laxative (even though I've had stool softeners) and now I've pooped SEVEN times. I feel awful. I am typing this from the toilet. I just can't believe that laxatives would cause this much pain. I feel nauseous and my stomach hurts and I am toilet bound.

Advice please 😭​ has anyone else had this issue? I'm afraid to eat anything or leave this toilet tbh

I know I'm mostly just scared and my fight or flight tends to land in fight zone.

But I just wasted $400 on an appointment where they couldn't tell me anything new because they didn't have my images. I already talked for the office staff and had to request extra release fourms. They assured me it was all handled. I offered to do the release fourms at the imaging clinic too, but no, they said it wasn't necessary.

Now I get an email from the doctor explaining that they can't do more with images, and can I please send them. I want to send the nastiest email.

This is a premium clinic with 4.9 stars on Google. Everyone raves about how kind and sweet they are. I don't want kind and sweet, I want results.

I also asked if I should get an MRI beforehand. (Fibroids, Endo and adenomyosis) Office staff said wait until after your appointment. During the appointment I say I'd like a referral to an MRI.

Same email the doctor says she thinks I should get an MRI.

I'm totally at their mercy. I can't just do it myself. There's super limited options. I just wanna scream at them.

This year has been hell between the miscarriages, losing all my friends because they're too busy and happy with their new babies and totally drowning in my own depression. I need this to be over.

I’m 22 and currently 67 days since my last period. I’m definitely not pregnant, but I’m getting increasingly frustrated because my periods have been all over the place for the last couple of years. They’ll be regular for a month, then really late, then regular again, then late.
At the moment I’m also having this weird pressure/pressing feeling around my bladder and needing to wee much more frequently than usual. I’ve also previously posted about my bowel movements because they’ve been alternating between constipation and watery/loose stools, and I’ve noticed blood occasionally.
My periods themselves can be extremely painful sometimes the pain is so bad that I actually vomit. I’ve been trying to get answers for this for a while. I’ve had scans and even a laparoscopy, but apparently nothing significant has shown up.
I’m honestly getting really tired of constantly having symptoms but not having an explanation. I know nobody on Reddit can diagnose me, but has anyone had a similar combination of:
Very painful periods / vomiting from the pain
Irregular or very delayed periods
Bladder pressure and frequent urination
Constipation alternating with diarrhoea/watery stools
Occasional blood in stool
Normal scans/laparoscopy
Could this still potentially be something like endometriosis, or are there other things I should be asking my doctor to investigate?
I’d really appreciate hearing from anyone who has gone through something similar, especially if it took a while to get a diagnosis.

Hello everyone! Got approval from the mods to make this post (thank you!)

My name is Melissa Tapia and I am a producer for the ABC/Disney nationally syndicated talk show Tamron Hall based in NYC - learn more about our show here

I am working on a wellness episode and wanted to report on the new saliva and blood tests in the market used to diagnose for endometriosis. We’ve covered this topic extensively before on our show (really in our medical gaslighting episodes) - and I thought this update was promising enough to share on the show and our viewers.

I am looking for women who have taken either test who are willing to come on the show and discuss their experience, whether it helped or hurt them in their health journey.

If this sounds like something you are interested in - please email me at melissa.tapia.-nd@abc.com or PM me and I can also give you my personal cell.

Thank you so much ladies - hopefully by raising more awareness on our show we can keep pushing for a cure. Much love to you all.

Hi all,

I had a specialist private TVUS this week to explore possible endometriosis and they found some! Based on my report there were endometriotic nodules in the Left sacro-uterine ligament and the recto-vaginal space. Given it was diagnosed via TVUS, I think this means this is deep infiltrating endometriosis although please correct me if I'm wrong, both the bladder and bowel were thankfully fine.

I'm keen for any advice on how I get the NHS to accept this diagnosis and get referred to the right place. My only two symptoms were painful periods (but I can manage these with painkillers) and unexplained fertility which is the reason I decided to pursue it in the first place. I have just completed the first part of a round of private IVF and were waiting to proceed with a frozen transfer and I'm also currently on the waiting list for IVF with the NHS (if I need it). On the symptoms side of things, I also have crohns disease so have some symptoms attributed to that, which we acknowledged could actually be endo related.

The doctor I saw this week said he wouldn't recommend surgery for me at this stage and to proceed with IVF, which I agree with. However, I'm keen to get on the right waiting list (which I am expecting to be very long) with the NHS in case we do need to go down the laparoscopy route if IVF doesn't work for us. I'm London-based, so there are lots of hospitals around but it seems like several of them do have specific location criteria which we don't meet.

Given I'm already under the care of the fertility team at an NHS hospital, I'm not sure if I can let them know about this and if it will allow me to "skip" the queue, or whether I need to be referred again? However, the hospital I am under for fertility care isn't great (and outsources parts of their IVF process), so I feel a bit cautious about having any type of significant surgery with them.

Very keen for any advice anyone has about how to navigate this in the most efficient way!

Hi all - I guess today I hit my last straw and here I am, seeking support and reassurance. I'm 33 years old and for a couple months now, I've noticed a weird feeling in my pelvis, right around my Right ovary area. It comes and goes, it's not always there. It flares up once or twice a day - not even everyday. It' not real pain - it's not sharp, nor acute. It's like a dull ache that ends up feeling like something's pulling deep inside, in that precise spot.
Docs I've seen say it's IBS-related, gas or colon spasms, but I'm really starting to doubt it. I do suffer from IBS flares every once in a while, but I haven't had any changes in my bowel movements - faeces look fine, good shape and all. It really feels like it's located on my ovary, rather than guts.

Thing is... I'm currently 7 days away from relocating internationally. It's a big moment in my life and I've been going through quite a rough and stressful time. I also *do* suffer from severe Health Anxiety, for which I'm in therapy for, which leads me - sadly - to being easily dismissed quite often.

I guess I'm just here seeking reassurance, trying to prove myself that I'm not gonna drop dead anytime soon or that it's not the big C word.

I don't have a history of endo or suspected endo. I do have a bit of PCOS but my cycles have always been very regular and not even that painful at all. Not even a lot of bleeding either. I've had my last yearly ultrasound checkup last September and it was all good - dont have a history of cysts or fibromas, anything at all. Never been pregnant, but I might wanna start trying next year or so.

I know it's impossible to diagnose something through an internet post and I do intend to seek further medical investigation as soon as I'm in my new city (Dublin, Ireland btw), but... it's just a really rough evening and I need to vent- sorry.

Hi all,

I just wanted to share my experience getting the my endometrioma cyst removed and the healing process because this sub has been incredibly helpful for me.

Background: I went to the doctors for chronic pain above my left hip, and after 4 months they were able to determine it was an ovarian cyst, and suspected that I have endometriosis. While my cyst was only about 4cm, they recommend removal since it was so symptomatic (it’s kinda crazy how much pain a 4cm cyst caused).

Surgery: I am now 6 days post-op and the healing process has been a lot smoother than I anticipated.
While I was under, the doctor luckily only had to remove the cyst (she was concerned she would have to take a portion of my ovary). She confirmed that I had endometriosis, but did not find any implants that needed to removed. She only found some deep tissue scarring. I was maybe under for 1.5 hours, but with pre- and post-op I was in the hospital for 6 hours.

I also got an IUD to treat my endometriosis, which has caused some mild cramping/spotting.

Healing: The first 24-48 hours after surgery was by the worst. The soreness in my abdomen was unlike anything I ever experienced, and the gas pain brought me to tears at one point. For the first 4 days I was rotating Tylenol and ibprofuen every 3 hours, per my doctors orders. I could usually tell when I needed my next dose because I would start hurting at the 2.5 hour mark. I also could hardly move because I was so sore. Getting out of bed or off the couch took 10x longer than normal because I had prop myself up to avoid using my core. However, I was able to walk around (hunched over for the first few days) and eat normally. At day 6, I feel pretty much back to normal as far as pain goes. I find myself hunching over sometimes when I walk, but I am taking medicine every 6-8 hours now, instead of every 3 hours. I can get out of bed much easier, with almost no issues at all. Showering is still a hassle because my incisions still have glue/aren’t fully closed.

I have also been more tired than normal, and napping during the day which is not super typical for me. I am still overtly aware of my lower stomach, and have not lifted anything over 5 lbs or really bent down at all. I also still can’t sleep on my side because it hurts my incisions after a while. The biggest issue I’m dealing with now is constipation.

Hopefully this helps someone get a rough idea of what they can expect during / post surgery. Thank you!

Hello all,

Just feeling a bit defeated with finding some answers. I have had bleeding since last month (most days it’s only spotting) with pelvic pain/pressure. I have vaginismus so this has been challenging in terms of getting through exams. I have fibroids and was able to get through a vaginal ultrasound however I was not able to get through a pelvic exam today (doctor wanted to rule out polyps in cervix and do a pap if possible but decided against the pap since I’m bleeding). She said they can also look into endometriosis by doing a biopsy and said that would be even more uncomfortable for me and they can do that in the OR.

Has anyone gone this route?

Overwhelmed and exhausted and grateful to have found this community!

Maybe silly question. They just found an endometrioma on my MRI but I never suspected endometriosis. Thank you :)

Went to see a private gynae yesterday about potential vestibulodynia, but endo was listed as one of his areas and it was a failed TV ultrasound that got me a vaginismus diagnosis so I mentioned it in case it was relevant. The doc was very respectful and nice, but he did seem highly sceptical I had endo as I've had a pelvic MRI that came back with no signs of anything off, uterus looks normal, etc. A previous doctor posited it might be lots of little growths instead of one big obvious growth, but admitted that was just a guess.

This doc also warned against doing the EndoSure test and said the new stuff is just an empty gesture by the NHS to get the complaints about women's health off their back (which I already booked and paid for, uh oh. I'll look into seeing if I can refund it and double check that, though I haven't seen much of it's flaws discussed beyond it being in it's early days outside lab conditions).

The thing that makes me kind of hesitant is that he said I couldn't be experiencing vaginal pain due to endo, when I know penetrative pain is a pretty frequent symptom of endo due to pelvic stress to the points both PTs I've seen have been familiar with it happening. But I don't know if that disqualifies his other points, especially since he did seem earnest and gave me a referral to a doctor he says will be better at investigating the vestibulodynia thing. I feel like I DO keep finding kind doctors, but they keep giving me info that's never fully reliable or act really ignorant in some area (last PT pretty much shrugged off my vaginal pain as maybe just so bad bc I have autism while saying herself she had no clue about autism) and I'm stuck having to weigh up how much to take as warning signs vs ignoring in favour of hoping they know their area. It's so tiring.

I am going to describe this pain in as much detail as I can to see if I can finally find someone who has felt it. For as long as I can remember I have had episodes of leg pain usually 1-2 times a month (weekly at worst, at one brief point 4-5 times a week). I have only ever been able to describe it as a migraine in my entire leg. It is almost always just one leg but the pain doesn’t appear in one side more than the other. The pain has equal chances of being in the right or left but almost never both at the same time. The pain starts all the way up at my hip and goes down into my ankle. It was thought to be growing pain until I reached 18, then we thought it was early stages of restless legs but it did not occur more at night, it was usually during the day.

I started going to specialist after specialist each more confused than the last. They taken a few gallons of my blood and played with my nerves but all tests are normal. I then found out that this can be a symptom of endo (which I had been suspected of having since I was a teen). While not perfect it’s the closest I’ve gotten to a description of the pain. I am on consistent birth control and have been since I was around 16 so I don’t have a period every month. I can’t say my cycle affects it cause I don’t really have a cycle. I got diagnosed with the surgey a few months ago and have not had the pain since. But it came back today.

Another thing people find strange is the only relief I can seem to find when the pain is at its worst is getting my leg as close to my body as I can make it. I often lay where I’m practically doing the splits (painful leg close to my head), or like a turtle where I just kinda curl into a ball, if I’m having to sit in a chair I have the leg up on the chair (however this does not help much). So really the only relief I can get is testing my flexibility to the extreme for a few hours.

Has anyone else had this? like it might not be endo, I might be just blaming endo but genuinely I have nothing and the doctors have even less.

Normally I need morphine. Had tried buscopan before on a friend's suggestion with no luck, but this time tried again because of other stomach/gut symptoms, which meant I started taking it the day before my period which I think made a difference cause it seems to be diminishing the cramps? Like, a lot? The hell? They're not fully gone, and my uterus still feels uncomfortable (like swollen, pressure, cervix is sore) but like thus far I'm not needing the painkillers? Only a couple hours in but it was starting to cramp this morning and when I took the first dose of buscopan it seems to have calmed it tf down? Realise it may not last but also wtf... Why didn't the doctors suggest this before sticking me on increasingly strong painkillers?

ALSO Is this an endo thing or a normal period thing? Like... Has the pain just been my uterus overcontracting this whole time? If this works then like, cool but also now gaslighting myself a bit?

(To clarify, have established possible endo based on symptoms and thickened uterosacral lining but any operation to investigate still probably like a year away. Got a gyno appointment soon to talk about interim options. Feel like there may be more they should be looking at before cutting me open? Are there other things that might be causing the intense pain and gut issues? Is it possible that I don't have this? Am like 50/50 between scared of being dismissed without any diagnosis of what causes it all, and kinda hopeful for if I have something manageable without all that?)

My 21 yr old daughter might have Endo. Bad cramps just started about 2 years ago. Weirdly her period pain is not every month but sometimes she can have normal period cramps, just painful but not as severe as some months. When her cramps are severe they can start 2-3 days before her period begins and can last first 3-4 days during the start of her period. Her cramps are so bad she takes ibuprofen or Aleve every few hours. Her pain is so bad she cries and can’t move. She also gets depressed a week before period starts PMDD.
About 6 mos ago She had her first major episode or attack. It happened 5 days before her period started. Around 5pm after dinner sharp pain under left breast and lower belly around belly button and below all of stomach around belly button and lower stomach and some low back. It was so severe with severe nausea and nonstop vomiting started. She was in pain crying and vomited about every 20-30min next to toilet. EpIsolde lasted about 3hrs until I could finally convince her to go to ER. She hates Hospitals. Finally I took her. We waited for hours until they called her. It was awful running to bathroom from waiting room every 20min to vomit. This lasted until next morning to around 7am. Pain came in waves on & off and ER gave her 3 different nausea medicines and would not stop vomiting in ER. Nothing worked no pain pills or anything. She almost past out and said mom I’m passing out. Sadly ER said she has to go back to waiting room until they could run Catscan. It was awful. I had to request wheel chair for her she couldn’t walk. And they wheeled her in waiting room for 2 more hours. I was so sad for her. ER was so traumatizing for her because she was there for so long in pain and vomiting. Labs came back normal and found Scan found a golfball cyst. And ER dr thought could be Endo or torque (something like that) since Gallbladder was fine. A few days later we went for follow up ultra sound. And a few days later she happen to start her period same day as Ultra sound. And results later showed No cyst. Cyst was gone. They think it could have burst it disappeared with period. Follow ObGyn visit had no real answers to what her episode was.

Fast forward 3 months later. Now 2 weeks after her period ended, around 7pm another painful attack happened. Again not during period. she feels like painful sharp period cramps around belly buttons and below or under left breast/rib. Pain attack is mostly always belly button to lower stomach with nonstop vomiting. This time pain attack started around 7pm- 7am. I could not convince her to go back to ER since she didn’t want to keep vomiting and running to bathroom in pain for hours. Weird cramping comes in waves every few minutes. I notice she feels ok for a few minutes and then sharp pain starts again.

I would describe her pain similar to worst labor pains or gallbladder attack. But today we went for 2nd ultra sound and results show Gallbladder is fine, no cyst. Ultra Sound Results Normal.

Sone periods are worse then others where she can’t get out of bed. And period cramps sometimes starts 3-5 days before period even starts and sometimes she can have menstrual cramps 3-4 days after her period ends.

Has anyone else had any episode like. Her period cramps are painful but nothing like the 2 episodes or attacks she had. She gets nauseated during period but nothing like the nonstop vomiting that happened during those painful attacks. Please anyone with a similar story please help.

My daughter is tiny and petite size xs to small and birth control caused major weight gain and breast size to double within first few weeks. Also bad cystic acne all over her face. We stopped birth control after one month. And not sure where to go

DO NOT LET THIS SCARE YOU FROM YOUR SURGERY: To be clear, i love my surgeon a lot - he is an excision specialist and very knowledgeable. I do not have any of the classic endo symptoms, just pain with sex, and he felt some lesions during the surgery. I woke up and was told they removed endometriosis on my uterus and endosalpingiosis. When i woke up, i had a lot of pain on my belly button to my pubic bone but was discharged that day. The next day, recovery was fine, just very sleepy.

However, my legs had begun to shake and twitch. By four days after my surgery, i was uncontrollably having “spasms” in my arms and legs, sweating profusely, snd struggling to walk. Of course, our phone carrier was having issues so i couldn’t call my surgeon so we just went straight to the ER, where i was immediately seem and diagnosed with Serotonin Syndrome. My body was uncontrollably shaking, i was dripping in sweat, my blood pressure and heart rate were elevated and my pupils were so large. Turns out my normal SSRI that i was clears to take, interacted with the pain medication causing this. I was in the hospital for three days, at one point having a male doctor try to just refer me to psych because he didn’t believe it (being told im faking it in the middle of a health crisis). I’m home now because i’ve begged to go home because the hospital honestly was terrible, but my vision and stability and balance are still bad - my mom has to walk to me the bathroom and my bed and i’ve fallen once.

TLDR: check a million times about if you can take your antidepressants with pain meds, and if you start shaking more than post-anesthesia shakes, call your surgeon