r/endometriosis

fuck this, I am genuinely suicidal over this, life is hard enough to begin with

I’m now a little over 12 weeks out from my excision and hysterectomy at the beginning of April, and I feel like an entirely new person already. I feel like I got at least a decade of my life back and there’s even more improvement to come as my body recovers from surgery and from years of being deconditioned.

Quick context: I’m 33F, had stage 4 DIE.

Here’s a few of the highlights I’ve experienced since surgery:

1. Significant reduction in pain. I can now do many different types of activities without flaring up and my only real pain has come from the surgical recovery, not an endo-type flare.

2. Reduction in fatigue. Most days my level of tiredness is now proportional to my level of activity. I can now go a whole day without a nap or crash out. Before, as much as washing the dishes was enough to destroy my energy level for an entire day.

3. Seriously improved gastro function!! I had a ton of bowel endo which caused lack of motility. I am down to half the dose of laxatives I take daily and even better… I can eat gluten again!!! No more endo belly, gas pain, bloating, nausea, nada! I have been shovelling gluten into my mouth at an alarming rate since about 6 weeks post op and loving every crumb lol

4. Reduced anxiety. I still have anxiety but it’s nowhere close to what it was like before. I feel like I’m free in my body, not a prisoner awaiting the next unexpected torture session.

5. Improved cardio function. This is a by-product, not direct result of the surgery I am sure since I am now able to do more physically, but my Fitbit notified me of a significant reduction in cardio load and BPM now versus pre surgery for the same activities. Basically, my heart doesn’t have to work nearly as hard to do stuff anymore.

6. Improved blood pressure. Likely goes along with cardio function but because of how bad this alone used to affect me, I’m giving it its own section. I used to regularly pass out with standing up, have to wear compression socks, and drink electrolytes or even sometimes just eat pure salt to remain conscious. Now, that’s seems pretty much miraculously fixed for the most part.

7. Improved overall mental health. Besides what I already mentioned about anxiety, I feel like there’s hope in my life again and that the future means something now. I’m taking chances that come my way and saying yes more and more. Life feels like sunshine is coming through the window instead of trying to keep my head above water.

This surgery was the best thing that has happened to me in so long and I genuinely feel like I have been given a new chance of life. My brain and body have been going steadily downhill for so long, I didn’t realise how bad things had truly gotten until recently. To feel this good even 3 months out is nothing short of an actual miracle.

To anyone reading this who is hesitant about surgery - it can absolutely change your life. It changed mine already more than I could have expected, and there’s still plenty of progress to be made. Find a trustworthy and skilled excision specialist and it could change your world. It did for me.

When someone is actively going through infertility, no one would dare to ask when they are having babies or even bring it up without the other person bringing it up(atleast it’s known you shouldn’t). But then when a woman has endometriosis where they have known lower chances of getting pregnant (which has been shared openly) while also actively being on BC because not being on it is hell on earth so getting pregnant is not in the picture right and may never be in the picture. Why do people think it’s okay, knowing your situation, to say “babies when” “what about babies”? Yes I am actively making a decision but I’m doing it for my own health.

What about my healthy and sanity ? Anyone else?

**after thought edit
Thank you for all those responding sharing their similar experiences and thoughts. This can be a very lonely disease but when we share experiences and feelings it makes it just a little be easier 🤍 appreciate you all for sharing and being vulnerable!

Hello, i am 20, ive not yet been diagnosed with endo (i am waiting for exploratory surgery), i am currently suffering from extreme cramps, ive taken the maximum dose of ibuprofen i can, paracetamol doesnt help and my heating pad is not helping, does anyone have any recommendations for tonight untill i can get my pain medication tomorrow?

Been diagnosed with endo since I was 18, currently 25 and on my second surgery. Birth control is driving me nuts, I haven’t been so depressed in a long time until following my last surgery, they recommended restarting on birth control. Currently on the Mirena. Primal Queen is having a sale right now, have been thinking about it on and off for a while but want some opinions on it.

1. Did it help with heavy cramping?
2. Any weight loss?
3. Help with “endo belly”?
4. Will it affect birth control?

If primal queen isn’t it, has anyone had any supplements that have actually helped them out?

Thank you all in advance!

So I hear people saying thats what patients do all the time. But actually in my case it's been the doctors?

I've kinda realised this through chatting to others here. Tangentially not directly. But it feels like my doctors have no interest in looking at other possibilities? Like, I'm not set on it being endo. I'd distinctly prefer it not to be. I would much prefer they rule it out properly via laproscopy BUT LIKE, AT LEAST CONSIDER OTHER OPTIONS FIRST??? Surely it's not the only thing that could be the case, but they've yet to mention a single other option. I get that tests like ultrasound and MRI might pick other things up but none of that's been mentioned so it doesn't feel like anything else is being considered? I've not been told if other things are ruled out? Amd they're insistent on pushing birth control rather than trying to actually resolve the issue? I'm sure intense pain in any other organ would be more urgent than this...

So it's not like I'm desperate for it to be endo, I just want a diagnosis of something so we can start to look at solutions that don't come with a ridiculously high price?

Anyone else experiencing this?

Anyone's suspected endo turned out to be something else?

Has anyone looked into the research of fusobacterium being linked to 64% of endometriosis cases? I've researched natural treatment for fusobacterium and have read that pomegranate husk, green tea and berberine show some good effect to diminish this bacteria.

it’s currently 2:30am monday morning, i slept 3 hours sunday morning. i’m exhausted and i can not fall asleep due to how bad my pain is.

i’ve had to take an extra dose of my prescription painkillers due to being awake so long and still i don’t have enough pain relief to be able to sleep. i recently had a mould issue in my home and had to throw away my heat packs, tens machine and hot water bottles. i can’t have a hot bath or shower because of the time, i do not live alone.

ive spent the entire day just restlessly rolling around in bed, on and off sobbing. my cramps are always in my lower stomach, lower back, butt and thighs but this is the first time my cramps have gone all the way into my calves and feet. nothing is even remotely relieving my pain and i’m bleeding through my super tampons very quickly.

is there anything you could suggest i try that i would have immediate access to do? like any specific sort if stretching or something like that?
i’m so desperate for relief and sleep right now.

I'm in so much pain. Periods are reaching a point where I can't do anything on the first three or fpur days. Combined with the pre menstrual upper back pain which also flares up my asthma and makes me cough a lot, that's a total 5-7 days a month where I can't do anything. I cancel plans, fall behind on work and housework, the cumulative effect fucks up my life, all told.

Codeine slightly lessens it but the amount needed to decrease the pain enough to function pretty much knocks me out, so stops function that way instead.

Theres still at least a year on the waitlist for laproscopy. There's a point at which if I'm having an operation anyway they might as well just take the womb out and dissect it to see if they can find endo. I don't intend using it. I'm 32 so know where I'm at with kids - if I want them it'll be adoption, fostering or via a partner (bisexual so could have kids with either gender, or at this age a partner could bring kids into the relationship with them so like...). What I do know is I'm not going to go through pregnancy. If my body deals this badly with routine maintenance I don't trust it to not make pregnancy horrifying. Not a risk I'm taking. I don't identify as female anyhow - non-binary but leaning more male as time goes on.

I'm inclined to keep the ovaries as truth be told I don't trust the nhs where hrt is concerned and in any case my mental health has had such bad reactions to birth control that the risk inherent in that is pretty high. I think my ideal would be to go on testosterone instead but with the way politics are lately I'm concerned about access in the long term. The idea of taking oestrogen frankly makes me feel sick and I already know how much progesterone screws me up (mental health related risk to life kinda thing) but obviously I dont want to lose bone health.

How the hell do I get this sh!t taken seriously? Gynocologists obviously don't see me when the pain is at it's worst cause it would take a lotta luck to book an appointment for exactly when that hits (not consistent enough) and even the waiting list for a follow up from MRI seems to be long - I keep being told they don't know when they can book it in even though the MRI was at the end of March. Its at the point where if I knew a reliable way to damage my uterus so severely they would be forced to take it out without injuring other organs I'd do it. Sometimes I even wish cancer had shown up on the ultrasound just so they'd do something. I've been in so much pain I sometimes faint or throw up, every month since I was a teenager apart from when I was on birth control which eventually led to severe depression and burnout. I don't know how to go on like this. No one takes it seriously - even the symptoms in my upper back that affect my breathing every month which based on my research could signify partial lung collapse, especially with the level of pain it hit last month and this one. I feel like I'm going to die before they do anything about it. I can't afford private healthcare so I'm trapped. I look young and I think sometimes they presume theyre talking to a teenager or someone in their very early twenties, even if they've bothered to look at the notes it feels like the bias is there. I would go to a&e but can't drive when the pain is at its worst and don't have any friends who both can drive and believe me about how bad it is. Not to mention I wouldn't be able to sit there for hours and I am not sure if they let you lie down...

EDIT TO ADD: if they are able to offer me non hysterectomy options I am super on board - just not open to the ones that are a risk to bone health or mental health because like... Same problem at that point... Honestly if they were bothering to look into other causes for the pain that would also work but it seems like they want to wait the year and a half to do an operation to check for endometriosis BEFORE they bother to check other less invasive possibilities.... Also frustrated because I keep getting "if you're still having symptoms maybe talk to your gp..." When I try to chase up appointments and like... Why would I not still have symptoms when you have done nothing about them???

my pain in my hips and pelvis is now so bad and has impacted my mobility enough that i'm going to have to get a mobility aid. i ordered a single forearm crutch to try first.

is it bad that i almost feel kind of silly for needing one? i'm only 18 and i'm not even officially diagnosed (but endo is pretty likely) and i'm going to have to use a crutch. i know it'll help and i know that it'll be worth it but i'm so nervous about it. i'm nervous that my friends or family will judge me. i'm nervous that other people in public will judge me (i live in the south and people are not always the most understanding with disabilities, especially those that are invisible). i feel like a faker in a way.

i ordered a pink one so that at least it's cute and my favorite color, but i'm still so nervous about it. has anyone else been through this? how did you get past the nerves?

Does anybody else have stomach issues with there endo?
To further explain I had my first surgery when I was 16-17 that supposedly found no endo yet found black spots. They have been treating me for endometriosis for my life since than (I’m 23 now) about to have my second surgery next month. But for the past year and a half I have been having severe stomach issues I went from 125 to 94 lbs fast and it won’t stop dropping no matter what I do. Most of the time I can’t even be around food without it making me nauseous. When I eat I can only take a few bites before I’m full and feeling sick. I don’t know if it’s all in my head like with anxiety but I’m definitely getting sick and tired of ruining vacations and not being able to do what I love anymore

Does anyone else feel this intense, full and bloated/inflamed feeling before (days in advance) your period starts? I feel like it’s edging me bro it’s so stupid like just go ahead and start man. Like I feel full of blood it’s so weird. How do I minimize this feeling before the bleeding actually starts? It’s not necessarily pain, just pressure and discomfort.

Ever since giving birth, I’ve been nauseous and my periods have gotten significantly worse. I feel like I have the flu every time it’s my period but my nausea is pretty much daily now.

I hear lots of endo patients say walking or stretching make them feel better.
Walking 10 minutes flare me up for 3 days.
When I stretch I feel like my insides are gonna burst.

Am I broken? Or some of you actually feel this too?

background information: started my period at 14 and has always been extremely painful that I miss work and school. It makes me vomit and have diarrhoea or constipation. I have pain in the legs, back and anus during ovulation and period. I have bladder issues where I feel urges even when the wee is a drop, painful penetrative sex. Bloating: my tummy bulges even I have not eaten a thing or eat so little and resolves on its own, extreme fatigue. Yet to get a diagnosis of endometriosis.

I have a 8.5cm endometrioma with clusters of small ones around it, this was found in Jan when I was rushed to A&E for a terrible stomach pain that made me vomit multiple times and lasted 10 hours. Since then I have been hospitalised twice for same pain and missed work at least 4 times every month.

2 days ago, I felt this horrible pain more like upper part of my tummy. I started vomiting and sweating. I took Gaviscon thinking it was acid reflux. I felt better after 2 hours but still bloated, tummy hurts when touch throughout the day and could not walk around, could not eat either. I went to the GP and was told to bring in poo sample to test for H.pylori. Fast forward to yesterday morning, while I was cooking at about 9:30am, I felt this sudden pain and I fell to the floor. It is the most excruciating pain ever not to scare you. I vomited 3 times within 30 minutes. Eventually I passed out, my partner called an ambulance and I was immediately taken it to ED. Believe me, I got to the hospital like 10:35 and since then till 5pm all pain medication (paracetamol, dihydrocodeine, morphine) did not work. I cried so much. I could not walk on my own. It was just too painful. I am still traumatised from the pain.

I did a CT scan and one of the small ones had burst which was the reason for the pains. Still on admission as I type this pain now 8/10, reason I can even hold my phone, yesterday it was a solid 10/10. They said the body will absorb the fluid and check me for possible infection which came out negative. I was prescribed antibiotics. I have been on the waiting list for surgery since April with no date yet despite it being expedited. This has really affected my quality of my life because the rupture aside the pains from the endometrioma means I don’t get paid in full every month because I have exhausted my sick pay, another headache in terms of finance. I am scheduled to do a colonoscopy mid July as they would like to check my bowels for endometriosis before surgery. I am getting discharged now with more painkillers even though I can barely walk on my own.

I have been told to consider birth control. Does anyone have experience of this helping?

I have recently being diagnosed with endometriosis although I suspected for years. My worst symptoms are actually around ovulation time with painful bloating and bowel symptoms during the months. Since I remember(the last 20 years) I can’t stand or walk for long periods of time without having extreme leg pain that is connected to my lower back. When I finally sit down I feel the lower back pulling as well. I have had vascular tests and ultrasounds and nothing was found. Chiros/physio/ myo give all a different reason for it but it has never improved. Now I wonder if it’s connected to the endometriosis? Anyone has similar symptoms?

Hi everyone, I’m feeling a bit overwhelmed and would really appreciate some advice

For the past one day, I’ve had worsening left-sided pelvic pain. It started like period cramps, but today it became a constant dull ache with sharp stabbing pains whenever I moved or walked. The pain got so bad (around 7–8/10) that I ended up going to the emergency department.

The ultrasound showed a 10 cm endometrioma. They checked the blood flow to my ovary, and thankfully it was normal, so they didn’t think it was torsion. I was given a Voltaren injection which finally gave relief. My periods due in 3 days so I think it was a case of bad flare up.

I’m now looking for a highly experienced gynecologist who specializes in endometriosis surgery. I know not every OB-GYN has advanced excision surgery experience, so I’m hoping to find someone who truly specializes in complex endometriosis.

If you’ve had surgery in Dubai or Delhi, I’d really appreciate your recommendations.
-who did your surgery?
-would you recommend them?
-how was your experience and recovery?
-how much did it cost?

Any advice or experiences would mean a lot right now, thank you 🙏🏼

Hi all,

I am 2 weeks post-lap today and have been recovering/healing generally okay. For the last week, since removing the second skin like bandages, there have been rather large plastic-feeling things (I'm assuming the stitches) sticking out of my incision sites. If these are stiches, is this normal for them to be poking out? They have been catching on clothes a lot and it's been very discomforting.

I have just came out of the shower and they seem to have dissolved a little, but still there. I tried to attach pics, but it says attachments aren't allowed in this sub?

Any suggestions to get rid of them would be extremely appreciated!

Thanks in advance!

okay this is kinda embarrassing but since like january of this year every time i need to fart or poop it has been actual hell on earth (that’s a bit dramatic but it’s definitely not comfortable) and i get like “butt lightning” or just really amplified pain in my abdomen, more than my regular period pain

I’ve also been to the ER a few times for awful pain not being able to move etc and they did blood tests and ultrasounds and found nothing, since those visits i’ve had a similar spike of about an 8/10 almost every month, but not at the same time as my period, usually between period and ovulation. I’ve also been woken up by the pain a few times and once was throwing up for two hours.

Painkillers don’t seem to work well and i’ve suspected endo for a long time anyway, especially since when i first got my period when i was 14, they would come very irregularly, eg, bleed for four days, break for 8, bleed for another two, break for four days and it was like that for a good 9/10 months, with many of those periods having me basically living beside the toilet throwing up from pain.

Anyway that’s all just background info and i apologise for the long post but i’m embarrassed to tell my doctor about the gas issues 😭 I’m also most likely getting a surgery to diagnose it next summer, but i want to be sure that endo is most likely what it is and not just IBS or something because i haven’t seen painful trapped gas as a symptom anywhere. And also i feel like i’m exaggerating the pain because i haven’t ever passed out from it, but it has been bad enough to send me into tears at school and leave early which i never do.

If you’ve gotten this far into the post thank you! i don’t really know what kind of response i’m looking for but any confirmation that all of those symptoms do or don’t line up with endo or IBS or any other condition would be great :))

I been having this issue lots of orange mucus and it smells like sick. I also feel really nauseas and sometimes get a fever but it does go away. I have no idea what it could be.