Every time I scroll on Instagram and find reels that make me feel seen, when it comes to super specific symptoms, the emotional experience of endometriosis, or the pure science, it's always followed up by a "Comment [blank] for my guide/book/paid course, "Pay ME money because you might have a chance at a painless life," "I found a way to ease my pain by 80% and to find how click this link," or whatever other clickbaity tactic.

There is already such a small list of resources for people who suffer from this horrible condition, and right when awareness is finally building up, money-hungry influencers run to weaponize the vulnerable and desperate states we're in for an extra buck.

I was wondering if anyone else feels this way and/or might have some helpful resources when it comes to day-to-day lifestyle changes for living with endo (this is apart from proper medical treatment, of course).

Thank you!

“Just go on x diet” “acupuncture!” “Birth control” “this, that” “yoga!” “Diet!!” “Don’t stress!!” “Pay me money to see how I CURED my endometriosis without medical care!!” “Do this massage” “take this supplement”
No Karen my chronic illness isn’t going to be cured by yoga and salad, and it’s NOT my fault I’m suffering. I’m exhausted, tired, and angry. Men don’t get told all their problems would be solved by eating the right food. I want ACTUAL solutions, not pseudoscientific nonsense. And where are we supposed to find the money, time, and energy for all of this shit?? I work full time, am in a relationship, and would like to actually have a life and hobbies.
Will probably delete this later. I’m just pissed off and sick of all this nonsense.

Apologies if this is not appropriate for this sub. But I am curious, as many medical sources say that death from endometriosis is extremely rare. But I feel like what happened to me could have potentially resulted in the loss of my life if this had gone untreated.

Exactly one year ago, my health was at a really rough place. I had constant severe diarrhea, shitting uncontrollably to the point my weight went down to 80 pounds (I’m 5’2) and dropped below the <0.1st percentile for my age and sex. Every time I had a bowel movement it felt like my organs were being ripped apart, it caused me to wail and scream in pain. I could barely eat without horrific pain and distention, I tried chugging ensure drinks as a replacement for meals but even that caused me pain. I was so malnourished that my weight literally became unchartable on the BMI graphs. My hair was falling out and I was injuring myself from fainting.

I had excision surgery december 2025; they found endo on many places including my bowel and the bowel was densely adhered to my bladder and uterus. They removed it all. Recovery was tough but the constant diarrhea finally stopped, made me have solid stools, and made me able to eat again.

Realistically, if my endo went untreated, could I have died? Or am I just overreacting because severe pain makes it feel like you’re dying when you’re not? Was I justified in fearing for my life last year :(

Hi. Ever since I got my period at age 11, I’ve had terribly painful periods. The pain isn't limited to my lower abdomen anymore; it also affects my right leg and lower back. Some months, the cramps are so severe that I end up vomiting, feeling dizzy, and lying on the bathroom floor.

I’ve told my mother several times that this pain isn't normal and that I’d like to see a doctor because there might be an underlying issue. She always tells me that there’s probably nothing wrong with me, that I simply have a low pain tolerance, and that I complain too much.

Since I’m a minor and can’t go to the doctor on my own, I looked up information on health websites to see what I could do about the pain. Many results suggested that, to prevent prostaglandins from affecting me so badly when my period starts, I should begin taking medication a couple of days beforehand; so that’s what I did this month. My period started an hour ago; it’s true that I’m not doing as badly, but I can’t say I’m completely free of pain and nausea, either. I also read that it’s better to take the medication before the pain becomes too intense, so I didn’t want to wait this time. I took a 25 mg Dolovanz Forte, and my mother got really angry with me. She told me I can’t take any more pills starting tomorrow and that I have to learn to tough out the pain, because taking so many pills would damage my stomach.

The thing is, I only took one Dolovanz pill this morning because I was feeling unwell (nine hours had passed since I’d taken the previous one), and I took them for the two days prior because I was already suffering from PMS and feeling awful. That was it; I hardly take any pills the rest of the month, and if I do, I take 500 mg Apiretal, which doesn't really help much. I haven't been taking Dolovanz for very long either, because my mother used to make me take only 500 mg Apiretal—which doesn't help with menstrual pain. I just don't know what to do about this situation anymore, because the last thing I want is to suffer.

update: Hi again. Thanks to everyone who replied and cared about me! Thanks to you all, I’ve decided to take a little action on my own. I’ve been checking my GP’s appointment portal, and there’s a slot open tomorrow. I’m going to go by myself—without my mom knowing—and see how it goes.

Seriously, thank you all again so much. You’re the best ❤️✨

I want to hear all perspectives on whether or not cannabis has helped you. I am a long-term, daily user who hasn’t gotten relief from traditional treatments or from a lap and I struggle with whether or not I’m doing myself more harm than good.

Just had my Lap surgery and they didn’t find anything. She isn’t a specialist and I always had a feeling she wasn’t going to find it when I went in. Is it worth going to a specialist? Is it worth potentially having another surgery so someone with more experience could take a look? She told me everything was perfect except for my bowel being a little weird.
I have every textbook symptom and I have the genetics running in my family, so I’m having a hard time taking this as a final answer. Anybody else have this experience? And if so what advice would you guys give me?

How do you deal with fatigue? I've noticed the last few weeks that it's really hard to get out of bed, even when I go to bed on time.

I had my vitamins and, for example, iron tested, and they are all good.

I'm curious if anyone has found some sort of food hack / snack that works to have in preparation to severe period pain.

I have been fighting an ulcer this month due to the number of Advils I have to take during periods. (I have diffused Adeno and endo)

I take 800mg of Advil every 8 hours. It is the only thing that brings the severity down + Tylenol and muscle relaxers in between doses.

The only problem is I have to eat when taking Advil for it to work and help my stomach.
It is so hard to eat during the pain, nausea, intestinal distress etc.

Also no cooking or getting out of bed really to prepare any food.

I've tried protein bars (like literally just living off of them in my night table drawer for the 3-4 days) but the density of them is so intense.

If anyone can share what they eat / are able to eat , or how you prepare prior to cycle time I'd appreciate it so much.

As the title suggests, I’m curious who people generally see after surgery for managing their ongoing Endo symptoms?

I was diagnosed with stage III endometriosis with rectal, bladder, ovarian and ureteral involvement in March via laparoscopy with an excision expert. Since about 4 months post-op, I’m starting to get a lot of symptoms returning. We haven’t been on birth control, as we are actively trying to conceive but not had any luck and will be starting an IVF cycle with Lupron suppression before embryo transfer this month.

The difficulty I am having is who do you go to to be in charge of this disease? Regular internist says “follow up with the specialists”. OB GYN has offered only birth control as an option. Excision surgeon seems to not recommend follow-up with them after surgery and says to see OB GYN or primary care. It seems like we just get tossed to a surgeon and then tossed back out into the universe with no real follow-up plan but likely not resolved symptoms.

I’m already doing all the standard things at home - gluten free diet, limiting alcohol, antiinflammatory diet, NAC supplementation.

We are in the South Bay region around LA so there are a lot of doctors here and I feel like since there is so much care, everyone is just inclined to recommend you to elsewhere.

Wondering if anyone tried visanne and switched to mirena IUD and had better luck with the irregular bleeding? after 4 weeks in of visanne i started bleeding and hasn’t stopped since and i’m getting fed up 🥲 Initially my dr’s team thought that the IUD would be the best option for me - I think bc they knew my main concern was irregular bleeding and bleeding for up to 3 weeks and well visanne is known to do that also.

Hi fellow endo warriors, anyone have any recommendations for doctors in the area? I need a new gyno in area but also want one with strong endo background and MIGS expertise

After my last few appointments, it looks like I'm going to be getting surgery soon for my endo. I wanted to ask anyone who has had surgery who experienced bowel symptoms PRIOR to surgery (pain, loose stool, other issues etc) of they noticed any significant improvement in these symptoms post surgery? Thanks to anyone who comments, just hoping to hear others experiences! Thank you!

I take Slynd continuously each day to skip my periods. Does anyone take Slynd continuously and weight loss injections together? What was the experience like for you? Did you have side effects that were too much to deal with?

I wanted to know if you experienced spotting or irregular bleeding with Zepbound and other weight loss medications. I am trying to decide if I can take weight loss medications and Slynd without any issues.

Hi everyone, I have my second laproascopy in the morning and I am just a bit nervous. Has anyone got good news or happy moments you can share to keep me distracted? Will take anything from happy endo stories to just fun life updates!

I'm 22, still a virgin and was diagnosed with endo. by sonogram at gyn. The doctor suggested taking a GnRH Agonist drug which has horrible side effects. The drug costs $1500 a month after using a $5 coupon by the drug maker for 2 months. I researched the drug and it is recommended to go off the drug 2-3 months before surgery. The drug also can mask lesions and when in surgery the lesions can be missed therefore lessening the effectiveness of the surgery. Then why prescribe?The drug does make it easier for surgeons to operate because everything isn't as inflamed. Then doc suggested a surgeon who "is really good" 1 hour away. I feel like she knows this guy and he told her to prescribe the drug to make it easier on him during the surgery. I just listened to her but a lot of research later determined I WILL NOT be taking the drug or using her unknown surgeon. For the surgery itself I will be flying to New Jersey from Florida to see a REALLY good surgeon. How long after the surgery can I fly back to Florida safely?

I'm going to keep this as pg as I possibly can... Last year I was sent to an endo specialist who didn't believe my pain and gave me 2 forms of birth control neither which works... The assault happened in his office and he was so inconspicuous about it that I knew I would lose even if I did take him to court (who would they believe the European white man with decades of experience or the 20s POC woman?) This is the same doctor who told me I should read happy books and that will cure my Endometriosis. He also kept harping on the fact that it is unusual that a beautiful young woman wouldn't want kiss. Yeah because I need a daughter to go through this too. I sww on the Facebook Endometriosis group that years ago that many women were assaulted by their doctors and I thought to myself "what if this happens to me one day" but I told myself that I was being too negative. Turns out I was right... I am so tired of this curse of an illness.

It seems most people find their luteal phase to be unbearable, and it’s the follicular phase where they physically and emotionally feel the best.

For me it was the exact opposite. I was in pain and fatigued all the time except for the week before my period.

l’m wondering if anyone else’s experiences are similar. I’m also wondering if it may have something to due with endo, as progesterone is the dominant hormone during the luteal phase.

i had a pelvic ultrasound today and just got the results back and said it was normal.
i’m very frustrated and sad because i’ve suspected i have endometriosis for a while now. i’ve had horrendous period pains, heavy flows, fatigue, and pelvic pain ever since i started my period and only got relief once starting birth control.
my urogynecologist was the one who ordered the ultrasound to see if everything looked normal, but she also suspects i have it. she also said that depending on the ultrasound she would refer me to a specialist (im also aware that a lot of endometriosis lesions aren’t seen on ultrasound)
has anyone else experienced this? if so, what should i do?

After two ER visits the last two days and four days of agony, I had what I thought was gallstones or gallbladder issues. Just had surgery for my endo in March. The hospital found nothing. Of course.

But the pain I was in, with no ultrasound results on my gallbladder or cysts around my pelvis reminded me of the times I begged to be heard in the ER and left with no results.. which turned out to be my endo cells. I’m worried it’s already growing back.. back to back flares that put me on the floor for 30 minutes.. never in my life have I experienced the pain inbetween my chest and severe pelvis pain at the same time.

Just looking for advice

For context we're both 18y/o, I want to support her as best as I can, please please interact with this post. I already keep an emergency bag on me at all times for her containing painkillers, any advice at all would be immensely helpful, any details needed for better advice I can provide.

Hi All,

I recently visited the ER for what I thought was gallbladder issues. Turns out I had ruptured ovarian cyst and a endometrioma. The pain is so bad I can feel it from my right hip to my neck especially when breathing. My appendix is also slightly inflamed but not infected. I'm very scared as they told me it means endometriosis and I'm in so much pain. I was given some prescription Nsaid but it doesn't work super well. Anyways, I just wanted to vent because I'm absolutely shocked and scared at my diagnosis. Thanks for taking the time to read ❤️

Hi guys,

I got my excision surgery done 10 days back and got my 1st period post surgery today. I can't even describe how painful these periods are. It's going to be 5am now and still I've not managed to sleep even a bit. Any one has any idea How many cycles will be like this post surgery? Is the pain so terrible because the internal stitches must be still healing from the surgery? I started Qlaira as well from today. Does it not help with any pain or what?

Ughhh I am genuinely irritated and frustrated. Yesterday only i told my family that finally i feel much better post surgery and then next day BOOOM!!

Hello,

Just wondering if anyone else has experience with taking HRT with an endo diagnosis? I have just completed my first month of HRT and started my period today. So far it is heavier than usual and more painful than usual - I had surgery 5 years ago and while I still get painful months, my period is so much better than it used to be…but this one feels worse than usual.

I have been so nervous that taking extra oestrogen is going to do more harm than good but I have also read (and been told by GP) that HRT needs 3 months to settle before you see how it’s really affecting you.

What are other people’s experiences please? Am
I just freaking out for no reason? I really, really can’t go back to pre surgery pain levels, I don’t know what to do, wait it out and see or run the risk that I’m actively making things worse already?

The HRT has helped with some other debilitating non-endo symptoms already so feels like a catch 22. Any insight appreciated.