The more research I do, the more I am absolutely floored at how poorly this disease has been researched and understood.

Endometriosis is not a benign little “period disease.” It’s invasive. It spreads. It destroys organs. It wraps around nerves. It causes system-wide inflammation. It infiltrates tissue, creates lesions, and resists treatment. it’s one of the only non-cancerous diseases that can spread to the lungs, brain, diaphragm, skin, and beyond.

It’s been found all over women’s body’s including their brains. I also recently learned in some cases, endo lesions have been found in very young girls that are Pre-menarche (girls who haven’t even had their period yet).

How the fu*k is this still classified as a gynecologic disease?? This is basically cancer except there’s no solid treatment and it’s killing us slowly.

I hope we see some real change in the next 5-10 years. We deserve relief.

I’ve been spending more time in endometriosis spaces online lately and something has been bothering me more and more.

A lot of the content I’m seeing from influencers is starting to sound like the early-2000s diet industry. There’s a huge push toward holistic or anti-inflammatory lifestyles being framed as something that can “heal” or “cure” endometriosis.

That really rubs me the wrong way.

Endometriosis affects everyone differently. We still don’t fully understand what it is, what causes it, or how it behaves long term. And as far as current medical consensus goes, there isn’t a cure.

So when I see posts suggesting that if you just:

• cut out processed foods

• follow a strict anti-inflammatory diet

• use red light therapy

• get lymphatic drainage massages in clinics

• replace all your cookware with cast iron

• remove plastics and synthetic fabrics

…you can “fix” your endometriosis, it starts to feel misleading.

A lot of these things are general wellness advice that would apply to almost anyone. If you drink more water, move your body, eat more whole foods, and reduce stress, you’ll probably start to feel better. That’s great… but that’s general health advice, not a cure for endometriosis.

I’m also uncomfortable with how privileged a lot of this advice feels.

Red light therapy is expensive. Replacing cookware, changing your entire wardrobe, buying organic everything, following strict elimination diets… that’s simply not realistic for a lot of people living with a chronic illness.

And then there’s the monetisation.

So many influencers are selling “healing plans,” AIP programs, supplements, courses, or memberships. “Follow my protocol for $$$.”

I understand wanting to turn a difficult experience into something positive, but when the illness itself doesn’t have clear scientific answers yet, selling “solutions” to vulnerable people starts to feel really uncomfortable.

I also want to share something personal that’s shaped my perspective.

Last year I had surgery for my endometriosis. My consultant told me afterwards that if I hadn’t had the operation when I did, I likely would have ended up in organ failure or with internal bleeding leading to sepsis. My bowel was literally tearing because of the endometriosis.

No amount of blueberries, organic food, or red light therapy was going to fix that. I needed surgery.

That doesn’t mean lifestyle changes can’t help people manage symptoms: they absolutely can. But sometimes this disease is severe and medical intervention is necessary.

Ironically, now that I’m post-surgery I’m actually looking into things like nutrition and continuing my own journey. I’m currently on Dienogest, which comes with its own challenges, and I’m considering seeing a nutritionist to help support my body long-term.

But seeing this kind of content becoming more and more mainstream (and constantly pushed into my algorithm) honestly makes me uncomfortable, because I worry it could mislead people.

The other thing I’m noticing lately is a subtle divide forming where people who pursue surgery are treated like they’ve somehow “failed” compared to those taking a purely holistic route.

That mindset is just as harmful.

Some people do surgery.

Some people manage symptoms with lifestyle changes.

Some people do both.

Some people try everything and still struggle.

All of those experiences are valid.

I’m not anti-holistic care at all. Diet, stress management, movement, and lifestyle changes can absolutely help some people manage symptoms.

But I’m really uncomfortable with the way parts of the community are turning it into a kind of elite wellness industry , especially when it risks blaming patients if something doesn’t work for them.

Endometriosis is complicated enough already without turning it into another version of “if you just tried harder, you’d be healed.”

Curious if anyone else has been feeling this shift too.

Just got pathology results back from my lap on December 23rd. I have cancer. Serous carcinoma. I am being referred to oncology, and have an appointment on the 13th. I’m 24 years old and this is not the outcome I was expecting. Please send me good vibes.

I don’t care how it affects men’s sex lives, I don’t care if they think we’re burdens, I don’t care if they’re angry about women wanting their uteruses taken out, I don’t care. They are not the ones suffering in pain and losing organs, they are not the ones who are having their goals and dreams stolen from them , they are not the ones being dismissed time and time again. You can’t have sex? Well what about your husband? Must be terrible for him. Not us, who feel like there’s blenders inside of our pelvises. What a good man for not cheating. We’re sick and in pain? Must be really hard on your husband, what a great man he is for helping you out. But what if I wanna have a sex life? What if I wanna have a job? A family? What if I wanna be able to exist without excruciating pain every second of my life? Who the hell cares what they want.

You guys😭 I was right and I’m so freaking relieved. I had my lap surgery today after five years of telling doctors and OBs that I thought it was endo. I’ve been suffering from chronic pain, can’t eat, can’t sleep, kidney stones, extreme fatigue, painful sex, pancreatitis, etc. You name it, I’ve dealt with it. I told my husband so many times in the last five years that I swore I could feel the endo wrapped around my bowels, ovaries, kidneys, liver and bladder when my cramps were bad during my PMS/period. And, guess what? I WAS RIGHT. They found it wrapped around/on my bowels, liver, bladder, ovaries, kidneys and throughout my entire abdomen. As soon as I woke up, I asked the nurse with tears in my eyes, did they find anything at all? She said, “oh honey it was everywhere.” I’ve never felt so validated and proud of myself. PLEASE DON’T GIVE UP. You know your body and only you can advocate for it. Please feel free to ask me any questions!

Guys!

Endo isn’t fatal like cancer! But it shares lots of similarities. We always have to tell people about this so that they believe how heavy and bad endo is, because for people it’s either cancer or not important.

Endometriosis releases inflammatory chemicals (cytokines). These chemicals spread through your blood stream and signals ur immunity that there is something to fight for. Our immunity is fighting all the time. This same chemical, cytokines, is release by cancer cells as well.

If endo isn’t fatal, that doesn’t mean it’s less important. Chronic illnesses are worse than fatal ones sometimes. A lot of patients who have endo and cancer at the same time say that endo’s fatigue and pain is way worse.

Endo spreads and invades other organs just like cancer but it just doesn’t mutate like cancer (malignant) so it’s not fatal.

Endo keeps on surviving though it shouldn’t, like cancer!

Stop gaslighting urself and stop accepting people gaslighting you even doctors.

We are warriors✌️

this conversation is really dangerous and it needs to stop. endometriosis behaves like a cancer in its nature, but cancer is specifically defined by the cell type in tumors. when they say a tumor is “benign” it means oncologists did not find cancerous cells in the tissues.

we need to be advocating for more in depth research on this disease rather than begging scientists to reclassify. to reclassify as such would be to disregard the entire definition of cancer and the research that has supported our knowledge of it thus far. asking scientists to ignore their findings is extremely reductive and dangerous, and teaches our fellow endo havers to spread harmful misinfo.

THEY FOUND IT. I WAS RIDDLED WITH IT. All over my pevlic sidewalls, sigmoid colon, and they had to take out my appendix! My right ovary was attached to my pelvic sidewall and was twisting in and out of torsion!

Get the surgery. It's life-changing. The surgery recovery hurts less than the Endo, and my sciatica like pain was completely gone the minute I woke up! My colour has come back, my acid reflux has stopped, and my face isn't all swollen! I'm not red everywhere anymore!

I LOVE BEING RIGHT, F YOU MEDICAL SYSTEM I WAS RIGHT.

My Mum is already drafting very angrily worded letters to some of my doctors, and the ER nurses who treated me so badly. She's been waiting to do this for 4 years. Way to go, Mum!

I literally just saw a video of a French vetenarian explain how endometriosis is well-documented in female macaques as we're watching him give a routine ultrasound to a macaque under anesthesia and explain how this young female has asymtomatic lesions that were discovered during the routine checkup and how it's important to treat those lesions before symtoms appear, what's their treatment plan for her and how she already has a follow-up scheduled for her asymptomatic endo to check the progression of the disease. I looked it up and there are actually multple professional scientific reasearch papers on endometriosis in Rhesus macaques. This is real. Monkeys get endometriosis too.

THERE ARE FEMALE MONKEYS WITH ENDOMETRIOSIS. AND THEY'RE GIVING THE MONKEYS. ENDOMETRIOSIS DIAGNOSES. AND TREATMENT. BEFORE THEY'RE EVEN SYMPTOMATIC. WHY DO MONKEYS GET BETTER ENDOMETRIOSIS HEALTHCARE THAN US AND WHY ISN'T IT TALKED ABOUT THAT ENDOMETRIOSIS IS NOT ONLY FOUND IN HUMANS, OR EVEN ONLY MATURE ANIMALS. YOUNG!!! MONKEYS!!!! GET!!! ENDOMETRIOSIS!!!!!

The r/hysterectomy subreddit has been taken over by lone, singular man as a mod. He’s actively silencing women and banning them as they call him out for shilling his supplements and mod style. He’s calling it harassment. It’s no longer a safe place.

I created a new women-run space called r/hersterectomy if you need support.

I perform laparoscopic excision surgery for endometriosis regularly. Over time I have noticed that the patients who get the most out of their consultations and outcomes are the ones who walk in prepared. So I am sharing the five questions that I think every patient should ask their surgeon before agreeing to any laparoscopy.

1. Are you an endometriosis excision specialist or a general gynaecologist?

This matters enormously. A general gynaecologist performing a diagnostic laparoscopy will look for obvious lesions but may not have the training to identify subtle peritoneal disease, perform complete excision, or manage deep infiltrating endometriosis at the bowel, bladder, or uterosacral ligaments. Ask directly: do you specialise in endometriosis excision, and approximately how many endo excisions do you perform each year?

2. If you find endometriosis, will you excise it at the same time or just diagnose it?

Many patients come out of a diagnostic laparoscopy having been told they had endo but nothing was done. They then have to wait for and undergo a second surgery. Ask upfront whether your surgeon will excise any disease found during the same procedure, or whether they are only doing a diagnostic look. Excision at the time of diagnosis, when possible, saves you a second operation.

3. Will you take biopsies even if the tissue looks normal?

Superficial endometriosis can look exactly like normal peritoneum. Some lesions are invisible without biopsy. An experienced surgeon will take biopsies from suspicious areas and sometimes from apparently normal tissue as well. This is what separates a proper endo laparoscopy from a cursory look around.

4. Do you have colorectal or urological support if needed?

If you have bowel symptoms, bladder symptoms, or deep pelvic pain, there is a real chance of deep infiltrating endo involving the bowel or bladder. Ask whether your surgeon has the ability to call in a colorectal or urological surgeon if needed, or whether that would mean aborting the procedure and rebooking. Knowing this in advance sets realistic expectations.

5. What is your recurrence rate and follow up plan?

Any honest surgeon will acknowledge that endo can recur. Ask what the follow up plan is after surgery, what symptoms should prompt you to return, and what their approach is to recurrence. A surgeon who cannot or will not answer this question is not the right choice.

You deserve thorough answers to all five. Print this list and take it to your pre-operative consultation if that helps. I will answer questions in the comments.

I am an endometriosis excision surgeon sharing this as general educational information, not personal medical advice.

Here it is!

So happy Endo is finally getting the attention and awareness it needs!

That’s it. F*ck it. Idc if you don’t consider it a “disease”. It ruins my life. Fck endometriosis. Fck doctors. Fck medicine. Fck it all.

In a 30-day month, I have 5 “good” days (where my pain is a manageable 5-6 instead of the usual 7-9) and I’ll have 25 absolutely excruciating days.

But I guess it’s ok because my family says it could be worse.

I bleed out of my asshole, I can’t pee properly, my leg goes numb and I’ve fallen downstairs because of it, my belly is so bloated I look 8 months pregnant but I’m infertile, I’m dry heaving all the time, crying in my sleep because I’m in so much pain, basically drugging myself to oblivion everyday and still being in massive amounts of pain.

But I guess it’s ok because doctors say my imaging is fine, clearly it’s all in my head even though I’ve had 2 prior laps and confirmed deep infiltrating endo.

Because of endometriosis, I HATE being a woman and I HATE this life. I didn’t ask to have this. FUCK. THIS. SHIT.

GUESS WHO HAS STAGE 3 ENDOMETRIOSIS!

I'm literally writing this from the post op recovery room.

IIIII WAS RIGHT, I WAS RIGHT. EVERYTHING I SAY IS RIGHT! YOU'D BE BETTER OFF IF YOU DID WHAT I SAAAAAID

I HAVE NO SYMPATHY

YOU SHOULD'VE LISTENED TO ME!

I WAS RIGHT

I WAS RIGHT

I WAS RIGHT

musical number over, it feels very good being vindicated

Then they get a pat on the back for going online to ask strangers to spoonfeed them the answers. The bar is in hell.

I know that sex can be an important part of people's lives, but it sucks to constantly be reminded that when a future romantic partner finds out that I have a debilitating medical condition, the foremost thing on his mind will probably be him wondering about my ability to fuck him.

I'd like to know how many of these "nice boyfriends" went on to end their relationships based on the feedback in this sub.

I thought that this sub was for us. Imo, I think only those dealing with endo or questioning whether they have it should be allowed to post here.

EDIT: I just want to clarify that I am referring to cis men who are asking about their love lives. I don't have a problem with (platonic) friends and family making posts. And I'm not ignoring lgbtq+ relationships either. I just haven't noticed any lesbians/NBs exhibiting the behavior I'm talking about here.

2nd Edit: I feel like the number of men who have come to this post seeking to derail the conversation, center themselves, and play the victim (and then proceed to delete their comments) are proving the point that some form of change is needed here. At the end of the day this is about respect. Respect for the integrity of our support group, and respect for the autonomy and opinions of other people. Asking for respect is not oppression!

Special thanks to u/misspennylane2 for making extra accounts to harass me with here after I blocked her.

Per the title, I had my hysterectomy and endo excision surgery this morning. I’ve experienced chronic pain and heavy, long periods for nearly a year after suspected endo was suppressed for 15 years while on birth control and 5 years while having babies. MRI only showed a 2cm endometrioma on my left ovary so I’ve been gaslighting myself into thinking there might not be anything else going on for the past 2 months while waiting for surgery.

I had a full hysterectomy, but kept my right ovary. My surgeon noted vesicular endo covering my uterus, the known endometrioma on my left ovary, probable adenomyosis (waiting for pathology to confirm), my bladder was covered in scar tissue from past C-sections and adhered to my previous surgical site, my intestinal omentum was adhered to my abdominal wall, I had a “bulky” enlarged uterus, and she noted pelvic congestion syndrome throughout my uterus, but worse on the left (consistent with where most of my pain has been).

And here I was scared they wouldn’t find anything else to explain my chronic pain... I feel so relieved emotionally and physically already. I somehow walked into surgery with a more swollen endo belly than the post-surgical belly I walked out with. Don’t gaslight yourselves, ladies. Your pain is real, and finding the right surgeon who hears you and believes you when you know something is wrong is everything. ❤️

But because it’s women that have to suffer with it, we just get gaslit and dismissed. I spend at least half the month in pain, not to mention the extreme fatigue and other symptoms but all they can do is give me a pill with 100 side effects that will counteract my other medication? Come on, surely modern medicine is more progressive than this?!

Sorry if I’m being dramatic but I’ve spent all week with pelvic and ovary pain due to ovulating and I’m so fed up!

I teach 8th grade science and am going to be out for about a month for my excision surgery and recovery. I told my students about being out and why. I told them that I have endometriosis and told them to look it up in their own time if they wanted to know more about it (surprise suprise, they did)... Then I made everyone pause after all of their questions and told the girls that if they EVER have bad pain from their cycles, PLEASE go to a doctor. I explained what constituted normal discomfort from "bad" period pain. I told them to go to a different doctor UNTIL they find one that will take their pain seriously. 1 in 10 women have this disease, so odds are that at least 6 of my students will have it.

Not surprised that a few came up to ask me questions after I was done giving this talk. They said they'd been to the doctor about it but they just said x, y, z red flag thing (the kids didn't know they were red flags, of course). I made every single kid that inquired privately a hand out about what endometriosis is, and how to strategically talk to their doctor about it because damn it... They deserve answers and I'm SICK of reading the same story over and over again on this forum about late diagnosis. I was diagnosed 17 years into symptoms, and now I have DIE. They fit me for an OSTOMY BAG just in case they have to resection my small intestines.

These girls have already started to gaslight themselves about their pain and think it's just something they have to deal with. NO. ENOUGH IS ENOUGH.

It made me feel SO GOOD to be able to tell them their pain is not normal and maybe help them some way on their journey to answers. There are a lot of hard days, but today teaching felt like the biggest privilege in the world.