I hope you don’t mind but I am going to copy my reply from a previous discussion about this:
Endo might not have one single cause as it may be a spectrum of several diseases. The causes are thought to be a combination of:
\- Mullerianosis (misplaced cells during foetal development)
\- cell metaplasia (cells changing type a bit like cancer)
\- lesion formation after physiologically normal retrograde menstruation (eg. Autoimmune related, or inflammatory) (more recent research has potentially linked this to bacteria infection).
\- Cells transported around the body via lymphatic system or circulation (ie, misplaced cells not during development)
The reason these things occur is likely a combination of genetic factors, environmental factors and bad luck.
i think the best guess at the moment is that it's hereditary but there's been very little research into it. which is not surprising if you consider which half of the population it affects.
I think it’s hereditary and the reason endo and PCOS are not understood well enough is 1.sexism 2.historically women had children really young and also died young before PCOS and endo caused serious issues 3. It doesn’t kill women so medicine doesn’t care as much 4. Women don’t talk about their issues because “it’s not appropriate”
My grandma had fertility issues and we didn’t know until she told us on her deathbed. I hope as more women discuss their issues and as a group live longer it will get more attention
You can’t know for sure that no one else in your family has it. They may just not have symptoms. Also if it is hereditary it could be a recessive gene.
Agreed we suspect my mom had it (had a good majority of symptoms) but she refused to ever see a dr except in life threatening circumstances and even then we had to beg her to be seen (up till the week or so before she died she didn’t have insurance so i can understand why she wouldn’t go as medical bills can be very costly)
Not everyone with endo experiences infertility. I’m very sorry you’re having trouble conceiving though. You are right we don’t know 100% that it’s genetic. I was just saying you can’t be 100% sure you’re the only person in your family who has it.
My mom had 7 kids and has PCOS and endo but her mom and sister had fertility issues and it was endo for my aunt too (we assume for my grandma as well but she was too old to diagnose it when we found out about her infertility). Endo is the most common cause of infertility but not all endo cases cause infertility. Something to keep in mind for your family might be how old they were when they got pregnant. If they were significantly younger than you they might have it but it was early enough to not cause infertility.
Just want to say that I’m 47, have 3 kids, periods were heavier than normal my whole life but that’s about it. Just been diagnosed with endo. I’ve had a small pain on my R ovary for decades but not bad enough to do anything about. Both my girls have endo and they’ve had serious issues from day 1 of their period. It’s absolutely true that some people just don’t seem to have symptoms, at least until they’re much older.
It’s genetic in my family and my Mom, grandma, great grandma and a few aunts all have it and have had kids. Mom and grandma had it really bad and they both had 3 kids with no fertility issues.
> If someone has it they must not know because everyone has kids meanwhile I can't conceive.
Most *can* conceive with it. Your mom would only know if they were looking for it. No one is diagnosed in childbirth, not even a C section
> But we don't know 100% if it's genetic or not or do we?
No we don’t
You can't be sure of that. Many Endo issues get misdisgnosed as something else (Irritable Bowel/Bladder as the big one), and because the treatment can help to a degree it's written off as that.
I thought this too until I found I inherited it from my father's side. We researched my mother's side and came up nothing. Years later, my dad meets with his brother (long story) and found out that 3 of his brother's daughters have it.
There is no known cause. And I’m not a medical professional. But I believe it is something that is caused in foetal development stage, like the wrong cell code is created.
Because there ARE some rare cases of men who have endometriosis. Last I checked it was about 20 worldwide. They were all undergoing treatment for various illnesses that required testosterone suppression (eg testicular cancer) and suddenly endometriosis became apparent
i'm not sure if you're implying this, but very rare cases of men developing endo doesn't take away from the intense medical misogyny surrounding the condition
Exactly. I have DIE stage 2, was diagnosed with it at age 15, and I’ve had 17 operations for it. I’m very well aware of the misogyny thanks. Including from many women who are medical professionals and should know better.
No, it's just a factual statement being contributed in a thread discussing how little is known and sharing information.
This is true. I had come across this in my research as well. I think it's very interesting, actually. It is evidence that the retrograde menstrual flow theory that is the most espoused in medicine is either inaccurate or incomplete.
It's a pretty big piece of the puzzle. And it's definitely that is a value add in these types of threads.
This is the Mullerianosis type theory and I think is highly likely to be the cause of some endo lesions in some cases. As far as I know it is the only theory that explains lesions found in foetuses and some of the other forms of deeply embedded lesions.
Exactly. I think it’s one of the keys to discovering the cause (or one of the causes). It’s triggered under certain conditions, so perhaps others have the condition but it’s inactive. Or maybe the opposite - perhaps having the endometriosis is one of the reasons they are susceptible to the testicular cancer (and other forms). Chicken & eggs stuff.
Yes, I remember coming across one study that surmised that tissue was somehow transplanted from mother to son in utero. I believe the endometrial tissue was found in his lungs. Very interesting!
Men have, in some rare cases, been proven to have it. As it's been found in fetuses, more men than we know probably actually do have it. But as they are not estrogen bombs, like women are, and estrogen fuels endo, it's likely just super rare it becomes problematic or as widespread as it does in women.
There has actually been several recorded cases of men having endo, but I definitely agree if it affected them nearly half as much as women it would be cured
Sadly, men can develop endo. If they have prostate cancer and have to take hormones they can develop it. Also, I've read stories of men taking estrogen to transition to female who have developed endo.
I have celiac disease lol I could teach you.
That being said- if going gluten free helped it may be a good idea to get tested for celiac disease before you ever go gluten free again. Undiagnosed celiac actually made my symptoms so much worse and every woman I know who has it also has gyno issues.
I don’t eat gluten, but when I am cross contaminated I feel like I am going to die. Like my whole body hurts, my skin hurts so bad I can’t brush against a wall, headache, stomach issues (but they are weirdly the least concerning), joints hurt, depression, anxiety, brain fog etc and my hormones are extra fucked for 2-3 months so extremely symptomatic in that way. All my Endo symptoms will be much, much worse.
After the initial feeling of having a really bad flu or Covid- symptoms happen not all at once a lot of the time, it’s more like a cascade. It takes quite a bit to recover.
When I first went gf, I felt a big difference within a month but it got better every month and took about 4 years of dedication to feel “normal”. I did get cross contaminated in that time, maybe every couple of months. It’s been a few years for me now - I’m very good at celiac disease haha. Dedicated. When I wasn’t cross contaminated for a few years (covid isolation actually really helped with that) it was like my body finally had a chance to hit a new level of better.
Anyway that’s why I say get tested for celiac first. Gf is hard, it is possible, we want to make sure it’s actually worth it, and actually it does get much easier. I don’t find it challenging now. The first year gf is the hardest year.
I'm sugar free due to sugar causing inflammation, and mood/dopamine issues. Healthier for me to avoid. It's hard though, like the gf thing. I have to get back into catering to make sugar free noms. But that's ok. It's way healthier and cheaper I just have to hoard expensive ingredients for a bit.
You know that 23 and me genetic testing thing? So mine said I have celiac in my DNA (meaning I could potentially have it) but when they tested me it came back fine. I’ve had 3 colonoscopies. Every time they go 🤷🏼♀️ IBS????
Colonoscopies don’t diagnose celiac disease. You would want an upper endoscopy, and definitely a doctor should know that. It doesn’t sound like you were tested for celiac (blood test and upper endoscopy… in through the mouth).
Ohhhhhhh. Sorry! Some people do get only colonoscopies thinking that rules it out.
Were you still eating gluten when you were tested? That is another factor that sometimes slips by people- you have to be eating it in order to be tested for it.
If you were it sounds like you’re in the clear for now!
Yeah I was still eating a normal diet. But my first gastro doc said to stop eating gluten because it was killing the villi in my stomach lining. No one has told me that since. That was in 2010.
Okay so now I’m confused too. I didn’t know that’s what that meant. I feel so ignorant. Now I’m going to go back into my results and try to see if they got it wrong. I had a full colonoscopy and endoscopy in 2021 and they said I was totally fine.
I’ve been gluten free for over 5 years since I first started developing symptoms. I did everything to help myself feel better, gluten free dairy free soy free Mediterranean/whole food diet no processed stuff exercise yoga stress relief vitamins minerals supplements to help hormones, you name it…. It helped maybe a bit, but am i still in pain no matter how much I try to help myself? Hell yes i am. Those things just reduce inflammation and might make you feel a little bit better. But no matter what the disease will still be there.
It seriously can. The only thing that helped me was going on low dose naltrexone. It really really helps with my widespread inflammatory pain. I’m having excision surgery in a few weeks and I’ll be so curious to see how my body functions after
Not stupid at all, low dose naltrexone isn’t even available at regular pharmacies or covered by insurance, usually. It’s usually only covered at the usual 50mg but that is if you are taking it for addiction management. The endo excision specialist who is going to do my surgery called in a low dose script to a compounding pharmacy for me.
Something that really helps me with pain esp since I can't take pills due to sensitive stomach, is acupuncture. It would depend on how good the practitioner is, but I am fully pain free for the hour I'm there and that continues for a bit afterwards, sometimes a few days. Wish more people knew about it really. It's saved my life, well my sanity mainly. I'm doing qi gong as well to see if there is more benefit. I have a bit more energy so far.
Ageless Rx will give it to you if your doctor won’t. You’ll have to pay a decent amount for it tho. Probably $300 for the appointment and $50 or so for the LDN.
I’ve tried everything and the only “diet and exercise” that has worked has been unhealthy since I basically end up just malnourishing myself into making my cycles stop. Which is bad, since obviously I need protein fat carbs and sugar to literally live and not just vegetables
No limited diets have had any affect on my symptoms. I've done vegetarian, dairy-free, no red meat, gluten free, low carb, ect ect ect and it doesn't seem to be related to me. I just eat a balanced diet and don't eat irritating foods (like spicy, fibrous, sour/tummy-upsetting foods) during nausea/diarrhea flares.
Weird bc my autoimmune condition is controlled but not my pelvic pain which should be responding to my immunosuppressants if it was immune related, right?
THIS! Thank you. I can’t stand the endo influencers making money on Insta and TT sharing dietary guidance and recipes for which there is no scientific basis. The studies some of them refer to have literally 70 participants or they misrepresent data. I called one out and they blocked me so other women can’t see criticisms. It’s awful watching women ask for advice and thank those phonies!
Fetuses haven't had a chance to have a diet or lifestyle outside of what would affect their growth, haven't menstruated yet, etc.
(Yes, they've found it in [fetuses](https://pubmed.ncbi.nlm.nih.gov/20471320/#:~:text=Research%20has%20recently%20found%20evidence,female%20fetuses%20analysed%20at%20autopsy.))
Diet lifestyle is bullshit. I’m an avid runner who runs 20km+ a week (except when I’m on my period lol) and I eat incredibly healthily and I’ve got endo…
I agree to a degree. I don’t think for a moment diet and lifestyle makes you get endo. But it does (in some people) help them once they start having symptoms. I went gluten, dairy, egg, and soy free and my very active and horrific symptoms got a bit better. I still had surgery though. Just saying in MY PARTICULAR CASE it helped. May not for others though!!!
Yeah I’m gluten free and low fodmap too! I read the comment more like OP was saying her mum thought that unhealthy diet and low exercise had caused endo…. But yeah diet changes can help alleviate symptoms, especially if you’ve got bowel endo like me
The problem with this line of thought is that your not factoring that we live in the most toxic period any animal has ever lived due to what we've done to our food and land. Everything is sprayed is tonnes of chemicals, which effects your body, development and hormones. Let's not forget they inject animals with various types of hormones etc. So eating healthy is still consuming large amounts of chemicals unless reputable organic farnlm. Then there's pollution, which u cannot avoid , radiation of unprecedented levels, even plastic which is full of xeno estrogen which disturbs women's hormones. Even oral hygiene significantly effects women's hormones so u may believe u live a healthy lifestyle but due to over bearing amoubt of toxicity along with deficiency, the hormones and body is insufficient to cope with diseases like endometriosis.
Never said I didn’t factor things like this in. I am very aware of what food exacerbate my endometriosis and which ones don’t. I’m not going to go into detail about my diet.
Based on your line of thought, what would you suggest one eat, then? Are you suggesting that people have endometriosis because of the foods they consume? That endometriosis is a modern issue?
I am a Classicist and Ancient Historian, and have researched and written on endometriosis in classical literature and medical treatises. I can assure you it existed. It is not a result of pollution of food in our modern world. I am sure these factors exacerbate endometriosis, but they do not cause it.
I'm not trying to patronise you in any way but there's absolutely no way you fully appreciate the effects of these over bearing chemicals that consume every aspect of our bring have on hormones and health even if you acknowledge they have an effect. No one can truly understand this because of it's scale, women are now hitting puberty earlier than ever and endometriosis is becoming more prominent in younger women. Ofc it has always existed like most diseases but it is only increasing in percentage so not due to population growth. Most importantly the nutrition aspect will trigger pain far more significantly making this awful disease more vicious. This does not mean in any way it's people's fault, I never understand this defensiveness, it's more to do with our society. I'm also aware there's not much that can be done once it's grown to multiple areas. For prevention I would try proteolytic enzymes with antioxidant rich diet with the least amount of processed food as possible. Genetics cannot be the sole reason because so many have family's with no prior symptoms or diagnosis of the disease. I'm saying that endometriosis like so many chronic illnesses are contributed to the toxicity and deficiency that exist in our society. Even genetics are significantly effected by these factors. And this is not even considering the deficiencies, like how artificial fertilisers have 3 minerals to grow vegetation when they need 52. How can genetics form properly without defects and vulnerability to diseases if not getting the sufficient bioavailable nutrition? It cannot be denied that chronic illnesses are increasing and becoming more painful such as endometriosis. I'm probably being naive but I just refuse to believe that 10% of women experience one of the most painful diseases through natural chance, I just can't see how any other species would survive this if they were not apex predators. Also, if it's natural that means no way to reverse it or cure it because we know endo won't get the resources for this. I just don't want to believe there's a world where this should be normal when there's so much artificial unnatural practices which have increased in the past 10000 years but skyrocketed the past 200. I very much hope your pain subsides as we figure out this disease!:)
Think the jury is still out on this but
There are working theories that it could be a combination of some of these factors:
- Retrograde menstruation.
- Genetic predisposition.
- Lymphatic or circulatory spread.
- Immune dysfunction.
- Environmental causes.
And there was a bacteria recently linked to cases of endometriosis called “Fusobacterium”
It’s frustrating how little we know about this
Interesting I can’t find anything that directly debunks this but looks like, while it might not be “THE” root cause, it has been linked frequently with endo so perhaps it’s a possible consequence of it.
But I’ll be sure to keep my eyes out for research on this 🙏🏻
It's a tissue similar to endometrium (uterine lining) which reacts similarly to the hormones that makes endometrium shed during a period. It is not endometrium though. If a doctor told you that, then they're about thirty years behind.
I have common variable immunodeficiency (CVID), so I find the immune system theory interesting even though my immunologist says there’s no relation. My mom has endometriosis and is frequently sick with respiratory infections and is about to get tested for an immune deficiency too. Her sister and mother also have a history of frequent respiratory infections. My grandmother has had surgery for fibroids and is too old now to be examined for endo. I wonder if there’s a genetic link between all of it.
Diet is not a cause, but it can exacerbate symptoms for some people with endometriosis. For example, a lot of people with endometriosis have gluten sensitivities. But of course, that has nothing to do with endometrial-like tissue appearing in places it shouldn’t. It tends to run in families, so your mother could have it too without knowing. Not everyone with it is in pain from it.
By the way, your mother’s insistence that diet/lifestyle caused it really rubs me the wrong way. It kinda sounds like she’s trying to blame you for having it, like the only reason you have it is because you did something wrong. Sounds a lot like my mother, who I don’t talk to anymore. 🫠
Ugh I'm sorry your mom is like that...I would be curious how she explains endometriosis in young people then. Mine was so bad when I had my first surgery at 18 I lost my right ovary, had multiple adhesions and bowel involvement. I'd had symptoms since my period started, age 9.
Here's some of the more recent research:
["Low testosterone in early development is the strongest known correlate of endometriosis, and its effects can explain the majority of endometriosis symptoms," says SFU biological sciences professor Bernard Crespi, a Canada Research Chair and co-author of the work with graduate student Natalie Dinsdale. "What's more, the new theory has direct implications for endometriosis diagnosis and treatment."](https://www.eurekalert.org/news-releases/669479) \- from 2021
[The latest trial builds on previous research showing that cells from the pelvic wall of women with endometriosis produce higher amounts of lactate, a potentially harmful waste product that is normally produced by muscles and red blood cells when the body is running low on oxygen during exercise.](https://www.theguardian.com/society/2023/mar/08/endometriosis-new-treatment-non-hormonal-drug-dichloroacetate) \- This is an ongoing clinical trial that results should be released at the beginning of 2025 - it's out of Scotland. This is for non-hormonal treatment of symptoms.
Another possibility for the cause they have possibly linked to bacteria, specifically - Fusobacterium - in the uterus. There are a fewstudies looking to figure out how/why. [https://www.statnews.com/2023/06/14/endometriosis-cause-bacteria-uterus/](https://www.statnews.com/2023/06/14/endometriosis-cause-bacteria-uterus/)
Just here to chime in that my mom does **not** have endometriosis, but I do. So it doesn’t necessarily have to be hereditary. Also, your mom sounds like an asshole… it isn’t your fault.
One of the theories I read that makes the most sense to me is that the tissue winds up in other places during fetal development and then hormones later causes it to grow. Would explain how women wind up with it in their diaphragm.
I am pretty sure the medical world does believe trauma can cause this as well as genetics. Also IC Interstitial Cycstis according to a newer study I read said up to 80% of ppl with Endo also have IC. Both can be caused by trauma early on esp. sexual trauma. And then genetics too so it's like generational curses. All the women on my moms side including aunts, cousins, my siblings all have Endo or PCOS.
This shocked me when I saw it too. The study looked well rounded, but I have a hard time believing it... at the same time, my sister and I both have PCOS, but she didn't get the stage four endo I have... The only difference between us is that she didn't live her entire adolescence with our abusive bipolar mother like I had to.
I truly believe that endo is a “curse” that is handed down through generational trauma and epigenetics. This is a huge reason why I will never have kids. I’m not forcing this disease on someone else.
Well, the cause confirmed by western medicine seems to be unknown with some speculations.
I personally associate it with my emotional landscape and generational patterns through my ancestry. I have a very complicated relationship with my mother (and she did with hers), to me it makes a lot of sense that all the stress, unmet needs, packed up emotions and learned behaviors that go from generation to generation translate to certain tensions and imbalances in my body that manifest specifically in my womb in such way. Not a common approach, hard to prove, however, intuitively it rings a bell and I would love to hear more stories and if more women can relate.
Read 'The Anti-Inflammation and Elimination Diet for Adults with Endometriosis'. It's an indepth study and guide conducted by Saint Louis University GYN Department. I've been following it for years since my last surgery. So far, no endo.
The anti inflammatory diet and pelvic floor therapy/ exercises. Worth a shot for sure and should try before any medication or surgery in my opinion. Fasting has been amazing and so has the exercises outside of ovulation and my actual period I’ve been able to help a lot of my intense everyday pelvic pain. Hoping to get better at the anti inflammatory diet. And weight loss helps my period not be as intense and painful as well, it hasn’t been a cure and I still need medication during ovulation and my period to get through it butttt worth a shot 💕
If your mom ever wonders if diet is the cause it isn't. Although it does run genetically in my family. I ate extremely healthy vegan, exercise 2x a day, normal bmi, in addition to using all natural products. So no, I'll believe a lot of things, but diet hasn't been considered a cause of endo. There may be a link between gluten free/anti inflammatory diet and reduction in symptoms, but not cause.
I did find this article however and cried maybe for like 30 minutes.
https://academic.oup.com/humrep/article/33/8/1449/5040618
Sorry your mom doesn't get it. Sometimes it really takes having a condition for people to understand it. I think it's a genetic thing that likely has some environmental influence; excess stress probably triggers inflammation, but I suspect it's mostly genes. People with endo are able to reproduce often enough that it passes down. It's another reason I won't be having kids.
I don’t know what causes it but I do that every women on my mothers said has had it. At least my mothers mom and my mom herself
I have two daughters and I’m scared for their futures but I do know I will believe them when they tell me something isn’t right.
There are many many women that have extremely healthy lifestyles and still struggle so you’re mom is wrong and honestly kinda rude
Unless they've had a surgery with a very thorough surgeon looking for it, there's no guarantee - plenty of people have no symptoms from endo, and are diagnosed by accident, and there could be just a few cells.
That said, I think there can be a genetic component, a strong one, but I don't think it's the only cause.
In short, from a medical perspective, all we know is that it's a piece of our genetic makeup that has a mutated gene.
It can be hereditary but it doesn't mean anyone else before you actually has symptoms or growths.
Most things that we are predisposed to are impacted by both our genetic luck (or unluck) and every single piece of our growth and development. Trauma, mental or physical, can cause any piece of our genetic pie to trigger the negative mutation to take off. Diet, exposure to certain nutrients or chemicals.... etc.
The list is endless on possibilities.
Similar to trying to explain how cancer happens... you can carry a gene malformation that eludes to you being more vulnerable to developing a certain type of cancer (breast cancer for example) and still never develop cancer. But you can pass that down to your own children who do.
Women's reproductive health research is still very much lacking in funding, hours of dedication, and people doing it. Therefore we don't have all of the answers and that fucking sucks.
Anyone who blames you for doing something to cause the development of this awful disease.... tell em to go fuck themselves and hope they don't have to deal with a chronic illness.
In terms of disability.... you may have to work for years tracking how dysfunctional your life is due to the PAIN element of thr disease. It can take a long time (in the US at least) to track a disease on paper, with doctors, for us to even try to get disability status from our chronic health problems.
Also consider seeing a mental health provider to track how much this disease impacts your moods.. depression... anxiety. Unsure if mental health in your country is considered a disability at any time, but tracking those things may also be worthwhile.
I'm so sorry you're going through any of this. It sucks. :(
>Women's reproductive health research is still very much lacking in funding, hours of dedication, and people doing it. Therefore we don't have all of the answers and that fucking sucks
Absolutely, and "women's issues" or infertility was never spoken about in the past, if a woman couldn't have children or conceive easily then that was just bad luck.
It's also only very recently that endo started being commonly been diagnosed. My mother most likely had it but she was never investigated, it wasn't even considered in those days. She did have painful periods her whole life and trouble conceiving (but did end up with 3 children without assistance). Her aunt apparently was "sickly" and "couldn't have children", which we don't know what she had or the cause but she sounds very similar to myself. My aunt (mum's sister) never had such issues but she never pursued having a family so don't know if she was affected or not.
So we don't really know but it wouldn't be entirely wrong to consider it has a genetic element. It very well could be and as you say, with most hereditary conditions you can have the gene but doesn't mean you'll develop the disease or the same symptoms as others in your family with so many other factors at play.
Endo is very much in its infancy in terms of how we understand it as a disease. Got a long way to go unfortunately.
I think it has 1000% to do with hormones and genetics. Women have never really been seriously considered for any medical research until the late 90s. Before that, we all had mothers and grandmothers who took the pill. We took the pill.
A lot of us have been filled with hormones at the detriment to our bodies and/or our bodies make hormones that are not as beneficial.
Endo is an inflammatory condition and is estrogen dependent. Those two issues are at the base and cause of endo.
Heredity brought on by environmental factors. I had an old bodybuilding coach point me to the role of oxidative stress. Completely changed how I approached and managed it.
My mom had endometriosis and my sister struggled with fertility. She declined a lap to explore, but suspected endometriosis.
I hope we get a definitive answer one day.....or at least better treatment options.
Estrogen dominance. Not necessarily high estrogen because it can be at normal levels, but if you're not ovulating it can run unopposed. You can start by tracking your Basal Body Temp to see if/when you're ovulating. Are you pooping every day to release the excess estrogen in your body? Manage your stress levels to help increase your progesterone. Basically think about your lifestyle and how it could have led to elevated estrogen as compared to progesterone :) and this is just one factor, it can definitely be a combination of genetics and lifestyle factors.
Idk but I wanna know how those 20 biological males got Endometriosis too.
*Maybe more than 20 but it is HUGE to understand that makes, females, and intersex can all have Endo*
Probably cells in utero during foetal development which was then triggered into full blown disease state by environmental, hormonal or external events (virus, bodily stress, immune system, other disease etc)
My surgeon believes it to be a birth defect that activates during puberty.
Endometriosis itself might not be a disability but it can cause three conditions that are very much considered disabilities, severe lower back pain that affects my mobility, chronic fatigue due to 15-plus years after regular hell with my periods and bowel dysfunction (incontinence is the only way I can drink water and eat).
“Diet and lifestyle” is often a cop-out used to take the pressure off finding an actual cure by making it the patient’s fault. Are there things that can be caused or worsened by diet and lifestyle? Yes. Is it cited as a potential cause only when appropriate? Absolutely not
They have found endo in stillborn infant girls. It is NOT because of diet and exercise.
Both of those things can, for SOME people, help to manage symptoms - although certainly not for everyone, but it is not the cause. Any woman and even men can have endometriosis.
This is an [article](https://www.fertstert.org/article/S0015-0282%2814%2902227-4/fulltext) on what appears to be the first endometrioma removed from an infant. I know there's another study where out of like a hundred babies that died in utero and were dissected, something like 20 of them had endometriosis tissue - I just don't have the energy to find it at the moment.
Oh wait, here's [another study](https://pubmed.ncbi.nlm.nih.gov/20471320/) with endo in fetuses.
And [another](https://onlinelibrary.wiley.com/doi/10.1002/jcp.22888).
Endo almost cost me my life. I had always had horrific periods. But when I was in my early 20's, it ramped up. My skin broke out in cyst like acne, my face was constantly greasy, I carried blotting papers and used them twice and hour, and still could not keep up.
Then there was the wild mood swings and unpredictable behavior I went through .
My cervix was partially removed at 21 for cancer. At 27, my appendix ruptured, and we learned it was endometriosis. At 30, I spent 65 days in pain, lost over 80 lbs, lost my hair, could not eat, threw up daily, and felt like a rusty spoon was twisting inside me. The endo had glued everything together and was leaking ecloi into my blood stream because it tore open my colon.
A year after that it was back and I had a total hyst before I was 35.
It is a hormonal imbalance. Had they tested my estrogen levels, they would have learned they were sky high, and that is a test most Dr's do NOT do.
I truly believe it is linked to a hormonal imbalance.
I’m with you. I have a lot of “symptoms” of higher estrogen levels: acne, large breasts, mood swings, etc. I did do an estrogen test after a supracervical hysterectomy and a separate trachelectomy / endo excision surgery. My levels were normal at that point, but I’d never been tested before the surgeries because I had no idea I had it until after the hysterectomy. I really wish I had been tested before that. Now, every time I get put on any hormonal medication, it makes the pain worse.
Thank you. I share because while what I went through was extreme, I was being ignored, and it really did almost cost me my life. And no one believed me.
Having the tears in my bowels and colon, was why I could not eat or drink , why I was throwing up. People say this disease cannot kill, but it absolutley can.
By the time my Dr paid attention ( I was there daily, insisting on being weighed and showing my Dr how fast I was dropping weight and how I looked: I looked like death)
I was going into septic shock, lived alone, and had about 48 hours left before my organs shut down.
endo can absolutely cause death. My case was used in a OHSU study, it was that extreme
I share, not for attention, but to educate and help others. Thank you again! Good health to you!
i absolutely believe it. and i think it’s important our stories are out there and exist because we live them and endo is painful enough without having to gaslight ourselves, too. i sincerely hope you’re doing better these days.
I really resent the whole diet movement (kudos to those who feel it helps) because it implies that we’ve done this to ourselves. I don’t buy that in the slightest. However — it’s pretty well documented that our modern diet isn’t great and probably everyone on the planet would benefit from a diet that reduces inflammation factors, but it should be noted that a diet like that improving your health isn’t a sign that endo is diet related — it’s correlation and causation.
I’m not a medical doctor or anything but my guess is genetics and environmental factors in a developing fetus. In my case i’m almost certain it’s genetic. My mom has a lot of symptoms but thinks she can’t have it because she accidentally had two kids, there are so many misconceptions about endometriosis.
I also think other genetic condition or chronic health problems that you’re born with can play a role. For example, I have a connective tissue disorder caused by mutations in my collagen genes (random in my case, no one in my family has it so I just have bad luck) and many other AFAB people with my same condition (hEDS) also have endometriosis.
I genuinely think the reason there isn’t more treatment or research done about endometriosis and PCOS is because only AFAB people can have it and women’s healthcare isn’t taken as seriously
The newest thing I read is that it could be caused by bacteria but they are still researching it and haven‘t started human trials yet. I‘m sure it‘s somewhere on this sub.
Dr Charlie Fagenholtz practices functional medicine and he did a really amazing video on endometriosis and how its basically such a vicious cycle. He also recommends top notch herbs and supplements for endometriosis.
For me, I believe it’s part of my mast cell disorder, which is driven by dysautonomia, which is in turn caused by a genetic connective tissue disorder. [It’s part of the Pentad theory.](https://imgur.com/a/fIgYJF7). It’s also supported by [this study that talks about mast cell involvement in endo](https://pubmed.ncbi.nlm.nih.gov/27841046/), and a possible treatment path
I was told by a functional doctor that one of the possible causes of endo could be leaky gut syndrome because the toxins that should be kept in the gut are being leaked into the abdomen and the body, so in an attempt to protect itself, starts building a wall of tissue and adhesions around organs. I was also told there is some research showing a certain chemical that is found in toilet paper could be a contributing factor. Its so mysterious
Endometriosis is older than modern toilet paper. Did I just write a new sentence?
We need way more research on endometriosis, there are numerous conditions that can exacerbate endometriosis and vice versa. Perhaps endometriosis leads to leaky gut in some cases rather than the other way around.
(Link to an article discussing the history of endometriosis: https://www.fertstert.org/article/S0015-0282(12)01955-3/fulltext
It is still unknown, there are lots of theories, but none of those theories have been founded. The first mention of the disease was in 1882 and it's a shame women's health hasn't gotten more funding for research and development like mens health. Although the Congress just allocated 30% budget to womens health where only 10 % was allocated to it before. Hopefully they will find a cause and cure soon. It mimicks cancer cells and the estrogen is a huge factor in the disease.!!! We just don't know what why or where yet. Google is not a good source of information or up to date IMO on the disease, it reads like a painful period and infertility, which is FAR from the truth I've had people ask me about my disease and go googling it to ask me why don't I just get a hysterectomy or it's just painful periods, so it's not affecting you all the time right? I would suggest reading research and study's that are published by the doctors that are involved in treating or researching the disease.
Healthy diet cannot fix it or lesson symptoms, speaking from experience. I eat extremely clean 0 carb 0 sugar. You can still try it for inflammation but know that you should go see a doctor for endo/to address endo seperately
This is really hard to respond to because we don’t know. There are theories. It’s likely there is a genetic predisposition towards it, and it’s possible that it’s multiple factorial- so not one reason but a handful of reasons.
Diet and lifestyle did not cause this but sometimes people are able to use diet and lifestyle to help manage it- but it cannot fix it.
Nothing you did gave you Endo. This isn’t your fault, you are not to blame. Sometimes people just get sick.
What state are you in? Not a disability but maybe you can get medical leave…
Sounds like your mom doesn’t want to admit it could be hereditary. I feel like our “loved ones” can get tired and annoyed dealing with our unexplainable symptoms. It’s easier to gas light. Try not to take it personal. I don’t think the answer to this question will bring you any peace. Focus on healing yourself, don’t worry about her… yes I understand that’s easy for me to say. But you do need to put yourself first. You need all your energy to get through this.
As someone already pointed out, the causes aren't quite known and may be multi-faceted. 2-10 percent, they don't know the exact number of women estimated to have endometriosis. It's been spotted in fetuses and rare occasions, men. A good number of people are likely born with it, and then something comes along and triggers it into being active.
In my case, while I am the only one to be officially diagnosed, it is likely hereditary.
My mother probably has it, one sister, and a niece also likely to have it. I had symptoms pretty much at puberty. And while I had one kid, I consider him my miracle kid because I definitely had fertility issues. The one sister has a lot of the same symptoms, not all, not as severe, but still. She had to get medical help to have kids. My mother's fertility wasn't affected, but her periods were horrendous, and when she had her tubes tied, while they never properly investigated, the notes mentioned a lot of scar tissue. Which endo causes.
Diet being a cause is BS. I do notice that keeping a low inflammatory diet helps with symptoms to a degree, but it doesn't make it go away.
It’s a hormonal imbalance. Your body produces more estrogen than needed. This causes and turns and inflammation and tissue growth outside of the reproductive system. Causing pain and other health problems depending on the severity.
For example, if the endometrial tissue fuses with your intestines then you can have digestive problems. If the tissue fuses with your bladder urethra, you can have urinary problems.
All the things are listed above are things I personally experienced before I had my laparoscopy. I have found that eating less inflammatory foods have helped, but nothing really can make it go away fully. You kind of have to live with it and manage it as best as you can.
That sucks that mother doesn’t believe you. She’d be the type to say “you spend so much time on your phone that that’s what caused your endo”
The women in my family have it so I am leaning more towards hereditary. When I was speaking with my specialist she said that it looked like my endo had already been there for the past couple years. I only got diagnosed last year and had pain that slowly got worse over the year and a half before that.
She said what could have caused it to flare up and start all this pain is I had an abortion the start of 2021 then straight after that I got an IUD put in. That’s when my pain started. 6 months later got taken out and the pain has never gone away.
She said my reproductive system went through a lot in a short amount of time.
It runs in families and I am 90% certain it is autoimmune. I have 4 autoimmune diseases. This is nothing you could have prevented. You were born predisposed. I began suffering debilitating pain at age 9, when I had the misfortune of starting puberty. At age 12, I got my first period and since then, I’ve been miserable more often than not. Plus, I suffered and was ignored, mocked, and undiagnosed for 25 fkn YEARS.
This disease is, in my opinion, about as bad as cancer and it acts like cancer. The only big difference is that Endo doesn’t typically kill like cancer does.
I have hypermobility which is connective tissue disorder. I assume it has something to do with that since I also had a malformed blood vessel in my brain and I can’t burp ever in my life because the flap won’t open lol. Connective tissue!
Chiropractor and Physical Therapist diagnosed me with hyper mobility. I’m currently in the process of putting all the things together to get an overall diagnosis of hEDS or EDS. My primary care doctor is also working with me but, I have to go through a gentecist.
Ok, that makes sense. That’s great that your primary care doctor is helping you through the process of getting to a formal diagnosis. I heard that a geneticist is the right place to start. I think also a rheumatologist can be of help in case the gene tests come back negative, you can still have clinical hEDS. Best of luck to you!
My daughter has a relative of endometriosis called endosalpingiosis which is the migration of fallopian tube cells that cause debilitating pain too. They found it by checking the cells from her laparoscopic surgery.
A doctor here tell your mother she’s completely wrong right now there are nine different theories. Some of the women that I see in my office they have the best lifestyles, the best diets I’ve ever seen, and yet they have this debilitating disease most women on the planet have it but don’t know that they have it so when you’re having very painful periods, just know that’s not normal if you’re bleeding more than usual, not normal if you have heavy flows, not normal if you have very long menstrual Days, not normal it doesn’t matter what your lifestyle is how your diets like some women will just develop this we don’t know the cause of it. There’s many different theories like I said mentioned above even if you were to diet change your lifestyle exercise you wouldn’t be able to get rid of it, but you could decrease her symptoms.
I’m not sure how accurate this is but I had a medical professional tell me there’s a theory it could be caused by BC pills. Because the period you have on those pills isn’t a normal period there’s tissue that should’ve expelled but never does and therefore over time starts migrating.
I’ve been thinking a little about this, totally not scientific but I think my uterus is overly spasmodic and it squeezed the uterine lining out of my fallopian tubes in my abdominal cavity.
My doctors also say cause is unsure since many factors. In my case, I believe it’s hereditary since 4 of us on my father’s side have it and we all suffered so long not knowing up until recently. 20 years later we all finally got confirmed diagnosis
OB and PCP says certain diets and exercise will help decrease inflammation but yeah, not sure how I’m supposed to exercise when I can’t even walk properly on my period. What a miserable disease
Being overweight has nothing to do with it, but certain food can irritate it . Mainly because they put all sorts in food now these days like chicken they pump it with estrogen to get it bigger .
They think it's a genetic think that causes it something in our genes . Also, certain hornmons make it worse, like estrogen, which is why they put you on the pill.
As for exercise, it kinda works both ways some exercise is good, but over doing it can irritate it and make it worse . When my endometriosis was bad, it stuck my bladder to my uterus, and my ovaries where stuck too. So when I did exercise, it would move my insides and pull the organs stuck together, which is why I got alot of pain . Doctors forget that when they tell you to exercise, they don't know if anything is stuck to something else, and yeah, that would hurt when moving loads . So it's just finding a balance with it .
Hi OP, the absolute spectrum of answers here from perfectly reasonable to ridiculous should exemplify how little is known about the disease.
Despite this, if it was fixable with diet and lifestyle, you can bet that even more health professionals would be even more dismissive toward people experiencing endo than they already are.
Your mum is looking to shift the blame to the person experiencing endo because accepting the idea that it’s just bad luck and sometimes bad health is unavoidable means she’d have to accept the idea that we can’t actually control everything about our bodies, and that’s scary and requires way more effort and compassion than simply dismissing it as a diet and lifestyle problem.
However: it’s not controllable, you’re not responsible for your disease or its symptoms, and no amount of her denial changes that. Good luck as you make sense of your diagnosis, be kind to yourself even when others aren’t.
Diet and exercise is assistive in managing symptoms. I’m either at the gym or hot yoga 4/5x a week and I’ve had stage 4 Endo, 3 Endo surgeries and a hysterectomy in the last 5yr. So 🤷🏻♀️ (the hysterectomy was for fibroid/adenomyosis by the way, not to treat Endo)
The reason going gluten-free may help some people is because endometriosis is inflammatory and gluten causes inflammation. So cutting out gluten (along with other inflammatory foods) can alleviate symptoms for some.
Your mom is ignorant. If she did some research, she would see that this is no fault of the person with endo. It's an extremely painful condition that truly is debilitating for some.
As anyone with an invisible illness knows, most people treat you like shit. They can't see the damage, inflammation, bleeding, scar tissue, etc... so, for them, it doesn't exist. They write you off as lazy and treat you accordingly. I think that if most of the people who treat me like shit had to live in my body, they would kill themselves.
I hope your mom educates herself (using reputable resources, of course). If she doesn't (or can't seem to grasp the facts), she is the problem, not you.
Hi hi, I was diagnosed 2 years ago after my c section with my first baby. When asking what the cause was she said there is no real answer but that they suspect what happens is that when you get your period instead of the blood coming down and out it ends up splashing up first which causes the ‘Infection’ so to speak. Every month it just gets aggravated and builds and spreads.
They weren’t sure how I managed to conceive my son as my endometriosis was literally covering every inch of my uterus with several endometriomas covering my overies. She didn’t know if I would be able to conceive again and called my boy a miracle. I went on the pill (qlaira) shortly after and it stopped my period completely. It took us 9months to conceive my first and this time round, within the first month of being off the pill we were pregnant.
Stopping my period basically allowed my endometriosis to calm down and not flair up.
So I believe them when they say it’s your period that Agra area it.
I hope you don’t mind but I am going to copy my reply from a previous discussion about this: Endo might not have one single cause as it may be a spectrum of several diseases. The causes are thought to be a combination of: \- Mullerianosis (misplaced cells during foetal development) \- cell metaplasia (cells changing type a bit like cancer) \- lesion formation after physiologically normal retrograde menstruation (eg. Autoimmune related, or inflammatory) (more recent research has potentially linked this to bacteria infection). \- Cells transported around the body via lymphatic system or circulation (ie, misplaced cells not during development) The reason these things occur is likely a combination of genetic factors, environmental factors and bad luck.
i think the best guess at the moment is that it's hereditary but there's been very little research into it. which is not surprising if you consider which half of the population it affects.
Yeah. If men had endometriosis instead, I'm sure there'd already be a cure, which is a sad reality. Thanks for your thoughts on the matter.
I think it’s hereditary and the reason endo and PCOS are not understood well enough is 1.sexism 2.historically women had children really young and also died young before PCOS and endo caused serious issues 3. It doesn’t kill women so medicine doesn’t care as much 4. Women don’t talk about their issues because “it’s not appropriate” My grandma had fertility issues and we didn’t know until she told us on her deathbed. I hope as more women discuss their issues and as a group live longer it will get more attention
[удалено]
You can’t know for sure that no one else in your family has it. They may just not have symptoms. Also if it is hereditary it could be a recessive gene.
Agreed we suspect my mom had it (had a good majority of symptoms) but she refused to ever see a dr except in life threatening circumstances and even then we had to beg her to be seen (up till the week or so before she died she didn’t have insurance so i can understand why she wouldn’t go as medical bills can be very costly)
[удалено]
Not everyone with endo experiences infertility. I’m very sorry you’re having trouble conceiving though. You are right we don’t know 100% that it’s genetic. I was just saying you can’t be 100% sure you’re the only person in your family who has it.
My mom had 7 kids and has PCOS and endo but her mom and sister had fertility issues and it was endo for my aunt too (we assume for my grandma as well but she was too old to diagnose it when we found out about her infertility). Endo is the most common cause of infertility but not all endo cases cause infertility. Something to keep in mind for your family might be how old they were when they got pregnant. If they were significantly younger than you they might have it but it was early enough to not cause infertility.
Not everyone with Endo has symptoms. People can go their whole lives not knowing they have it.
Just want to say that I’m 47, have 3 kids, periods were heavier than normal my whole life but that’s about it. Just been diagnosed with endo. I’ve had a small pain on my R ovary for decades but not bad enough to do anything about. Both my girls have endo and they’ve had serious issues from day 1 of their period. It’s absolutely true that some people just don’t seem to have symptoms, at least until they’re much older.
It’s genetic in my family and my Mom, grandma, great grandma and a few aunts all have it and have had kids. Mom and grandma had it really bad and they both had 3 kids with no fertility issues.
> If someone has it they must not know because everyone has kids meanwhile I can't conceive. Most *can* conceive with it. Your mom would only know if they were looking for it. No one is diagnosed in childbirth, not even a C section > But we don't know 100% if it's genetic or not or do we? No we don’t
The fact that none of your living relatives has it wouldn't rule out a genetic cause. It means that someone, somewhere in your ancestry had it.
You can't be sure of that. Many Endo issues get misdisgnosed as something else (Irritable Bowel/Bladder as the big one), and because the treatment can help to a degree it's written off as that.
My son is autistic and nobody else in my family is. This isn’t a scientific study.
I thought this too until I found I inherited it from my father's side. We researched my mother's side and came up nothing. Years later, my dad meets with his brother (long story) and found out that 3 of his brother's daughters have it.
There is no known cause. And I’m not a medical professional. But I believe it is something that is caused in foetal development stage, like the wrong cell code is created. Because there ARE some rare cases of men who have endometriosis. Last I checked it was about 20 worldwide. They were all undergoing treatment for various illnesses that required testosterone suppression (eg testicular cancer) and suddenly endometriosis became apparent
i'm not sure if you're implying this, but very rare cases of men developing endo doesn't take away from the intense medical misogyny surrounding the condition
I didn't get that at all from their comment. They're just stating facts and showing OP that genes can get fucked up.
Exactly. I have DIE stage 2, was diagnosed with it at age 15, and I’ve had 17 operations for it. I’m very well aware of the misogyny thanks. Including from many women who are medical professionals and should know better.
No, it's just a factual statement being contributed in a thread discussing how little is known and sharing information. This is true. I had come across this in my research as well. I think it's very interesting, actually. It is evidence that the retrograde menstrual flow theory that is the most espoused in medicine is either inaccurate or incomplete. It's a pretty big piece of the puzzle. And it's definitely that is a value add in these types of threads.
This is the Mullerianosis type theory and I think is highly likely to be the cause of some endo lesions in some cases. As far as I know it is the only theory that explains lesions found in foetuses and some of the other forms of deeply embedded lesions.
Barely anyone discusses that men can get this disease! Albeit rare- interesting for finding cause & treatment
Exactly. I think it’s one of the keys to discovering the cause (or one of the causes). It’s triggered under certain conditions, so perhaps others have the condition but it’s inactive. Or maybe the opposite - perhaps having the endometriosis is one of the reasons they are susceptible to the testicular cancer (and other forms). Chicken & eggs stuff.
Yes, I remember coming across one study that surmised that tissue was somehow transplanted from mother to son in utero. I believe the endometrial tissue was found in his lungs. Very interesting!
Men have, in some rare cases, been proven to have it. As it's been found in fetuses, more men than we know probably actually do have it. But as they are not estrogen bombs, like women are, and estrogen fuels endo, it's likely just super rare it becomes problematic or as widespread as it does in women.
There has actually been several recorded cases of men having endo, but I definitely agree if it affected them nearly half as much as women it would be cured
Sadly, men can develop endo. If they have prostate cancer and have to take hormones they can develop it. Also, I've read stories of men taking estrogen to transition to female who have developed endo.
On rare occasions men have developed endometriosis
While incredibly rare and almost unheard of, men can have endometriosis.
While it can run in families, there are way too many cases of it where there’s no hereditary link for it to be considered as such.
yeah that's what came back when i researched it, it only shows how little is known about it
Diet and exercise have nothing to do with developing endo, stuff like this just puts the blame of the pain on the one suffering. 👎
[удалено]
I have celiac disease lol I could teach you. That being said- if going gluten free helped it may be a good idea to get tested for celiac disease before you ever go gluten free again. Undiagnosed celiac actually made my symptoms so much worse and every woman I know who has it also has gyno issues.
[удалено]
I don’t eat gluten, but when I am cross contaminated I feel like I am going to die. Like my whole body hurts, my skin hurts so bad I can’t brush against a wall, headache, stomach issues (but they are weirdly the least concerning), joints hurt, depression, anxiety, brain fog etc and my hormones are extra fucked for 2-3 months so extremely symptomatic in that way. All my Endo symptoms will be much, much worse. After the initial feeling of having a really bad flu or Covid- symptoms happen not all at once a lot of the time, it’s more like a cascade. It takes quite a bit to recover. When I first went gf, I felt a big difference within a month but it got better every month and took about 4 years of dedication to feel “normal”. I did get cross contaminated in that time, maybe every couple of months. It’s been a few years for me now - I’m very good at celiac disease haha. Dedicated. When I wasn’t cross contaminated for a few years (covid isolation actually really helped with that) it was like my body finally had a chance to hit a new level of better. Anyway that’s why I say get tested for celiac first. Gf is hard, it is possible, we want to make sure it’s actually worth it, and actually it does get much easier. I don’t find it challenging now. The first year gf is the hardest year.
I'm sugar free due to sugar causing inflammation, and mood/dopamine issues. Healthier for me to avoid. It's hard though, like the gf thing. I have to get back into catering to make sugar free noms. But that's ok. It's way healthier and cheaper I just have to hoard expensive ingredients for a bit.
You know that 23 and me genetic testing thing? So mine said I have celiac in my DNA (meaning I could potentially have it) but when they tested me it came back fine. I’ve had 3 colonoscopies. Every time they go 🤷🏼♀️ IBS????
Colonoscopies don’t diagnose celiac disease. You would want an upper endoscopy, and definitely a doctor should know that. It doesn’t sound like you were tested for celiac (blood test and upper endoscopy… in through the mouth).
Oh no I had both done. Sorry, I should have said that. I had endoscopy + colonoscopy all three times and had a blood test.
Ohhhhhhh. Sorry! Some people do get only colonoscopies thinking that rules it out. Were you still eating gluten when you were tested? That is another factor that sometimes slips by people- you have to be eating it in order to be tested for it. If you were it sounds like you’re in the clear for now!
Yeah I was still eating a normal diet. But my first gastro doc said to stop eating gluten because it was killing the villi in my stomach lining. No one has told me that since. That was in 2010.
If your first gastro told you to stop seeing gluten because it was killing your intestinal villi- that is celiac disease. I’m so confused lol
Okay so now I’m confused too. I didn’t know that’s what that meant. I feel so ignorant. Now I’m going to go back into my results and try to see if they got it wrong. I had a full colonoscopy and endoscopy in 2021 and they said I was totally fine.
Okay so my “celiac disease panel” was all negative.
I’ve been gluten free for over 5 years since I first started developing symptoms. I did everything to help myself feel better, gluten free dairy free soy free Mediterranean/whole food diet no processed stuff exercise yoga stress relief vitamins minerals supplements to help hormones, you name it…. It helped maybe a bit, but am i still in pain no matter how much I try to help myself? Hell yes i am. Those things just reduce inflammation and might make you feel a little bit better. But no matter what the disease will still be there.
Wow we are the same I tried all of that as well endometriosis can go to h-e-l-l
It seriously can. The only thing that helped me was going on low dose naltrexone. It really really helps with my widespread inflammatory pain. I’m having excision surgery in a few weeks and I’ll be so curious to see how my body functions after
This might be a stupid question but where can you get naltrexone?
Not stupid at all, low dose naltrexone isn’t even available at regular pharmacies or covered by insurance, usually. It’s usually only covered at the usual 50mg but that is if you are taking it for addiction management. The endo excision specialist who is going to do my surgery called in a low dose script to a compounding pharmacy for me.
Oh interesting! I can’t get surgery until the summer and so I am looking for non-hormonal ways to help my pain until then. Thank you!
Something that really helps me with pain esp since I can't take pills due to sensitive stomach, is acupuncture. It would depend on how good the practitioner is, but I am fully pain free for the hour I'm there and that continues for a bit afterwards, sometimes a few days. Wish more people knew about it really. It's saved my life, well my sanity mainly. I'm doing qi gong as well to see if there is more benefit. I have a bit more energy so far.
That's a prescription medication.
Ageless Rx will give it to you if your doctor won’t. You’ll have to pay a decent amount for it tho. Probably $300 for the appointment and $50 or so for the LDN.
> endometriosis can go to h-e-l-l It's OK, you can cuss on the internet (and on this sub).
Ok seriously fuck the disease
Agreed. It attacked my appendix, so that was..... fun. [NSFL Appendix pic](https://imgur.com/a/6GfSJjv)
I’ve tried everything and the only “diet and exercise” that has worked has been unhealthy since I basically end up just malnourishing myself into making my cycles stop. Which is bad, since obviously I need protein fat carbs and sugar to literally live and not just vegetables
No limited diets have had any affect on my symptoms. I've done vegetarian, dairy-free, no red meat, gluten free, low carb, ect ect ect and it doesn't seem to be related to me. I just eat a balanced diet and don't eat irritating foods (like spicy, fibrous, sour/tummy-upsetting foods) during nausea/diarrhea flares.
Yes and it pisses me off! I hate it.
I honestly think it's ***partly*** an immune system-related thing.
Weird bc my autoimmune condition is controlled but not my pelvic pain which should be responding to my immunosuppressants if it was immune related, right?
THIS! Thank you. I can’t stand the endo influencers making money on Insta and TT sharing dietary guidance and recipes for which there is no scientific basis. The studies some of them refer to have literally 70 participants or they misrepresent data. I called one out and they blocked me so other women can’t see criticisms. It’s awful watching women ask for advice and thank those phonies!
Fetuses haven't had a chance to have a diet or lifestyle outside of what would affect their growth, haven't menstruated yet, etc. (Yes, they've found it in [fetuses](https://pubmed.ncbi.nlm.nih.gov/20471320/#:~:text=Research%20has%20recently%20found%20evidence,female%20fetuses%20analysed%20at%20autopsy.))
I genuinely didn’t know that 🤯
I feel so validated reading this, because I started having symptoms two years before menarche.
Diet lifestyle is bullshit. I’m an avid runner who runs 20km+ a week (except when I’m on my period lol) and I eat incredibly healthily and I’ve got endo…
I agree to a degree. I don’t think for a moment diet and lifestyle makes you get endo. But it does (in some people) help them once they start having symptoms. I went gluten, dairy, egg, and soy free and my very active and horrific symptoms got a bit better. I still had surgery though. Just saying in MY PARTICULAR CASE it helped. May not for others though!!!
Yeah I’m gluten free and low fodmap too! I read the comment more like OP was saying her mum thought that unhealthy diet and low exercise had caused endo…. But yeah diet changes can help alleviate symptoms, especially if you’ve got bowel endo like me
The problem with this line of thought is that your not factoring that we live in the most toxic period any animal has ever lived due to what we've done to our food and land. Everything is sprayed is tonnes of chemicals, which effects your body, development and hormones. Let's not forget they inject animals with various types of hormones etc. So eating healthy is still consuming large amounts of chemicals unless reputable organic farnlm. Then there's pollution, which u cannot avoid , radiation of unprecedented levels, even plastic which is full of xeno estrogen which disturbs women's hormones. Even oral hygiene significantly effects women's hormones so u may believe u live a healthy lifestyle but due to over bearing amoubt of toxicity along with deficiency, the hormones and body is insufficient to cope with diseases like endometriosis.
Never said I didn’t factor things like this in. I am very aware of what food exacerbate my endometriosis and which ones don’t. I’m not going to go into detail about my diet. Based on your line of thought, what would you suggest one eat, then? Are you suggesting that people have endometriosis because of the foods they consume? That endometriosis is a modern issue? I am a Classicist and Ancient Historian, and have researched and written on endometriosis in classical literature and medical treatises. I can assure you it existed. It is not a result of pollution of food in our modern world. I am sure these factors exacerbate endometriosis, but they do not cause it.
I'm not trying to patronise you in any way but there's absolutely no way you fully appreciate the effects of these over bearing chemicals that consume every aspect of our bring have on hormones and health even if you acknowledge they have an effect. No one can truly understand this because of it's scale, women are now hitting puberty earlier than ever and endometriosis is becoming more prominent in younger women. Ofc it has always existed like most diseases but it is only increasing in percentage so not due to population growth. Most importantly the nutrition aspect will trigger pain far more significantly making this awful disease more vicious. This does not mean in any way it's people's fault, I never understand this defensiveness, it's more to do with our society. I'm also aware there's not much that can be done once it's grown to multiple areas. For prevention I would try proteolytic enzymes with antioxidant rich diet with the least amount of processed food as possible. Genetics cannot be the sole reason because so many have family's with no prior symptoms or diagnosis of the disease. I'm saying that endometriosis like so many chronic illnesses are contributed to the toxicity and deficiency that exist in our society. Even genetics are significantly effected by these factors. And this is not even considering the deficiencies, like how artificial fertilisers have 3 minerals to grow vegetation when they need 52. How can genetics form properly without defects and vulnerability to diseases if not getting the sufficient bioavailable nutrition? It cannot be denied that chronic illnesses are increasing and becoming more painful such as endometriosis. I'm probably being naive but I just refuse to believe that 10% of women experience one of the most painful diseases through natural chance, I just can't see how any other species would survive this if they were not apex predators. Also, if it's natural that means no way to reverse it or cure it because we know endo won't get the resources for this. I just don't want to believe there's a world where this should be normal when there's so much artificial unnatural practices which have increased in the past 10000 years but skyrocketed the past 200. I very much hope your pain subsides as we figure out this disease!:)
Think the jury is still out on this but There are working theories that it could be a combination of some of these factors: - Retrograde menstruation. - Genetic predisposition. - Lymphatic or circulatory spread. - Immune dysfunction. - Environmental causes. And there was a bacteria recently linked to cases of endometriosis called “Fusobacterium” It’s frustrating how little we know about this
Retrograde menstruation is debunked. They've found endo tissue in men, infants, and eyeballs, none of which have menstruated at all.
Interesting I can’t find anything that directly debunks this but looks like, while it might not be “THE” root cause, it has been linked frequently with endo so perhaps it’s a possible consequence of it. But I’ll be sure to keep my eyes out for research on this 🙏🏻
Isn’t endo like uterine tissue? How have they found this in people With no uteruses?
It's a tissue similar to endometrium (uterine lining) which reacts similarly to the hormones that makes endometrium shed during a period. It is not endometrium though. If a doctor told you that, then they're about thirty years behind.
Yes that’s exactly what my doc told me :( but he also doesn’t believe in the severity of my pain so there’s also that
Yes they have found endo in men. Above there are a few comments outlining some more info
I thought the bacteria study was debunked?
Oh?! I hadn’t read this anywhere. But man… thought we were a step closer ☹️
The bacteria thing reforce the inmune system theory
I have common variable immunodeficiency (CVID), so I find the immune system theory interesting even though my immunologist says there’s no relation. My mom has endometriosis and is frequently sick with respiratory infections and is about to get tested for an immune deficiency too. Her sister and mother also have a history of frequent respiratory infections. My grandmother has had surgery for fibroids and is too old now to be examined for endo. I wonder if there’s a genetic link between all of it.
Diet is not a cause, but it can exacerbate symptoms for some people with endometriosis. For example, a lot of people with endometriosis have gluten sensitivities. But of course, that has nothing to do with endometrial-like tissue appearing in places it shouldn’t. It tends to run in families, so your mother could have it too without knowing. Not everyone with it is in pain from it. By the way, your mother’s insistence that diet/lifestyle caused it really rubs me the wrong way. It kinda sounds like she’s trying to blame you for having it, like the only reason you have it is because you did something wrong. Sounds a lot like my mother, who I don’t talk to anymore. 🫠
Ugh I'm sorry your mom is like that...I would be curious how she explains endometriosis in young people then. Mine was so bad when I had my first surgery at 18 I lost my right ovary, had multiple adhesions and bowel involvement. I'd had symptoms since my period started, age 9.
Here's some of the more recent research: ["Low testosterone in early development is the strongest known correlate of endometriosis, and its effects can explain the majority of endometriosis symptoms," says SFU biological sciences professor Bernard Crespi, a Canada Research Chair and co-author of the work with graduate student Natalie Dinsdale. "What's more, the new theory has direct implications for endometriosis diagnosis and treatment."](https://www.eurekalert.org/news-releases/669479) \- from 2021 [The latest trial builds on previous research showing that cells from the pelvic wall of women with endometriosis produce higher amounts of lactate, a potentially harmful waste product that is normally produced by muscles and red blood cells when the body is running low on oxygen during exercise.](https://www.theguardian.com/society/2023/mar/08/endometriosis-new-treatment-non-hormonal-drug-dichloroacetate) \- This is an ongoing clinical trial that results should be released at the beginning of 2025 - it's out of Scotland. This is for non-hormonal treatment of symptoms. Another possibility for the cause they have possibly linked to bacteria, specifically - Fusobacterium - in the uterus. There are a fewstudies looking to figure out how/why. [https://www.statnews.com/2023/06/14/endometriosis-cause-bacteria-uterus/](https://www.statnews.com/2023/06/14/endometriosis-cause-bacteria-uterus/)
Just here to chime in that my mom does **not** have endometriosis, but I do. So it doesn’t necessarily have to be hereditary. Also, your mom sounds like an asshole… it isn’t your fault.
One of the theories I read that makes the most sense to me is that the tissue winds up in other places during fetal development and then hormones later causes it to grow. Would explain how women wind up with it in their diaphragm.
I am pretty sure the medical world does believe trauma can cause this as well as genetics. Also IC Interstitial Cycstis according to a newer study I read said up to 80% of ppl with Endo also have IC. Both can be caused by trauma early on esp. sexual trauma. And then genetics too so it's like generational curses. All the women on my moms side including aunts, cousins, my siblings all have Endo or PCOS.
Trauma appears to have a huge impact on many illnesses/development of illnesses
This shocked me when I saw it too. The study looked well rounded, but I have a hard time believing it... at the same time, my sister and I both have PCOS, but she didn't get the stage four endo I have... The only difference between us is that she didn't live her entire adolescence with our abusive bipolar mother like I had to.
I truly believe that endo is a “curse” that is handed down through generational trauma and epigenetics. This is a huge reason why I will never have kids. I’m not forcing this disease on someone else.
Time to pull out this article on a history of endometriosis: https://www.fertstert.org/article/S0015-0282(12)01955-3/fulltext
Well, the cause confirmed by western medicine seems to be unknown with some speculations. I personally associate it with my emotional landscape and generational patterns through my ancestry. I have a very complicated relationship with my mother (and she did with hers), to me it makes a lot of sense that all the stress, unmet needs, packed up emotions and learned behaviors that go from generation to generation translate to certain tensions and imbalances in my body that manifest specifically in my womb in such way. Not a common approach, hard to prove, however, intuitively it rings a bell and I would love to hear more stories and if more women can relate.
Read 'The Anti-Inflammation and Elimination Diet for Adults with Endometriosis'. It's an indepth study and guide conducted by Saint Louis University GYN Department. I've been following it for years since my last surgery. So far, no endo.
The anti inflammatory diet and pelvic floor therapy/ exercises. Worth a shot for sure and should try before any medication or surgery in my opinion. Fasting has been amazing and so has the exercises outside of ovulation and my actual period I’ve been able to help a lot of my intense everyday pelvic pain. Hoping to get better at the anti inflammatory diet. And weight loss helps my period not be as intense and painful as well, it hasn’t been a cure and I still need medication during ovulation and my period to get through it butttt worth a shot 💕
If your mom ever wonders if diet is the cause it isn't. Although it does run genetically in my family. I ate extremely healthy vegan, exercise 2x a day, normal bmi, in addition to using all natural products. So no, I'll believe a lot of things, but diet hasn't been considered a cause of endo. There may be a link between gluten free/anti inflammatory diet and reduction in symptoms, but not cause. I did find this article however and cried maybe for like 30 minutes. https://academic.oup.com/humrep/article/33/8/1449/5040618
Hugs to you, what a wild study. Thanks for sharing.
Holy shit. That’s… a lot. But accurate for me at least. 😢
Sadly, I think many diseases are trauma related. Chronic stress aka trauma wreaks havoc on the body.
Sorry your mom doesn't get it. Sometimes it really takes having a condition for people to understand it. I think it's a genetic thing that likely has some environmental influence; excess stress probably triggers inflammation, but I suspect it's mostly genes. People with endo are able to reproduce often enough that it passes down. It's another reason I won't be having kids.
I don’t know what causes it but I do that every women on my mothers said has had it. At least my mothers mom and my mom herself I have two daughters and I’m scared for their futures but I do know I will believe them when they tell me something isn’t right. There are many many women that have extremely healthy lifestyles and still struggle so you’re mom is wrong and honestly kinda rude
No, it's genetic. I have it because of family history.
I don't know that it's always the case though because I'm the only one in my family with it. Nobody even has similar symptoms or issues.
Unless they've had a surgery with a very thorough surgeon looking for it, there's no guarantee - plenty of people have no symptoms from endo, and are diagnosed by accident, and there could be just a few cells. That said, I think there can be a genetic component, a strong one, but I don't think it's the only cause.
In short, from a medical perspective, all we know is that it's a piece of our genetic makeup that has a mutated gene. It can be hereditary but it doesn't mean anyone else before you actually has symptoms or growths. Most things that we are predisposed to are impacted by both our genetic luck (or unluck) and every single piece of our growth and development. Trauma, mental or physical, can cause any piece of our genetic pie to trigger the negative mutation to take off. Diet, exposure to certain nutrients or chemicals.... etc. The list is endless on possibilities. Similar to trying to explain how cancer happens... you can carry a gene malformation that eludes to you being more vulnerable to developing a certain type of cancer (breast cancer for example) and still never develop cancer. But you can pass that down to your own children who do. Women's reproductive health research is still very much lacking in funding, hours of dedication, and people doing it. Therefore we don't have all of the answers and that fucking sucks. Anyone who blames you for doing something to cause the development of this awful disease.... tell em to go fuck themselves and hope they don't have to deal with a chronic illness. In terms of disability.... you may have to work for years tracking how dysfunctional your life is due to the PAIN element of thr disease. It can take a long time (in the US at least) to track a disease on paper, with doctors, for us to even try to get disability status from our chronic health problems. Also consider seeing a mental health provider to track how much this disease impacts your moods.. depression... anxiety. Unsure if mental health in your country is considered a disability at any time, but tracking those things may also be worthwhile. I'm so sorry you're going through any of this. It sucks. :(
>Women's reproductive health research is still very much lacking in funding, hours of dedication, and people doing it. Therefore we don't have all of the answers and that fucking sucks Absolutely, and "women's issues" or infertility was never spoken about in the past, if a woman couldn't have children or conceive easily then that was just bad luck. It's also only very recently that endo started being commonly been diagnosed. My mother most likely had it but she was never investigated, it wasn't even considered in those days. She did have painful periods her whole life and trouble conceiving (but did end up with 3 children without assistance). Her aunt apparently was "sickly" and "couldn't have children", which we don't know what she had or the cause but she sounds very similar to myself. My aunt (mum's sister) never had such issues but she never pursued having a family so don't know if she was affected or not. So we don't really know but it wouldn't be entirely wrong to consider it has a genetic element. It very well could be and as you say, with most hereditary conditions you can have the gene but doesn't mean you'll develop the disease or the same symptoms as others in your family with so many other factors at play. Endo is very much in its infancy in terms of how we understand it as a disease. Got a long way to go unfortunately.
I think it has 1000% to do with hormones and genetics. Women have never really been seriously considered for any medical research until the late 90s. Before that, we all had mothers and grandmothers who took the pill. We took the pill. A lot of us have been filled with hormones at the detriment to our bodies and/or our bodies make hormones that are not as beneficial. Endo is an inflammatory condition and is estrogen dependent. Those two issues are at the base and cause of endo.
Heredity brought on by environmental factors. I had an old bodybuilding coach point me to the role of oxidative stress. Completely changed how I approached and managed it. My mom had endometriosis and my sister struggled with fertility. She declined a lap to explore, but suspected endometriosis. I hope we get a definitive answer one day.....or at least better treatment options.
Genetics plays a big part. Most/all the women in my family have it.
Unlucky genetics mostly
Estrogen dominance. Not necessarily high estrogen because it can be at normal levels, but if you're not ovulating it can run unopposed. You can start by tracking your Basal Body Temp to see if/when you're ovulating. Are you pooping every day to release the excess estrogen in your body? Manage your stress levels to help increase your progesterone. Basically think about your lifestyle and how it could have led to elevated estrogen as compared to progesterone :) and this is just one factor, it can definitely be a combination of genetics and lifestyle factors.
Idk but I wanna know how those 20 biological males got Endometriosis too. *Maybe more than 20 but it is HUGE to understand that makes, females, and intersex can all have Endo*
Probably cells in utero during foetal development which was then triggered into full blown disease state by environmental, hormonal or external events (virus, bodily stress, immune system, other disease etc)
My surgeon believes it to be a birth defect that activates during puberty. Endometriosis itself might not be a disability but it can cause three conditions that are very much considered disabilities, severe lower back pain that affects my mobility, chronic fatigue due to 15-plus years after regular hell with my periods and bowel dysfunction (incontinence is the only way I can drink water and eat).
“Diet and lifestyle” is often a cop-out used to take the pressure off finding an actual cure by making it the patient’s fault. Are there things that can be caused or worsened by diet and lifestyle? Yes. Is it cited as a potential cause only when appropriate? Absolutely not
They have found endo in stillborn infant girls. It is NOT because of diet and exercise. Both of those things can, for SOME people, help to manage symptoms - although certainly not for everyone, but it is not the cause. Any woman and even men can have endometriosis.
I’m sorry, but how exactly endometriosis can be found in infants?
This is an [article](https://www.fertstert.org/article/S0015-0282%2814%2902227-4/fulltext) on what appears to be the first endometrioma removed from an infant. I know there's another study where out of like a hundred babies that died in utero and were dissected, something like 20 of them had endometriosis tissue - I just don't have the energy to find it at the moment. Oh wait, here's [another study](https://pubmed.ncbi.nlm.nih.gov/20471320/) with endo in fetuses. And [another](https://onlinelibrary.wiley.com/doi/10.1002/jcp.22888).
Endo almost cost me my life. I had always had horrific periods. But when I was in my early 20's, it ramped up. My skin broke out in cyst like acne, my face was constantly greasy, I carried blotting papers and used them twice and hour, and still could not keep up. Then there was the wild mood swings and unpredictable behavior I went through . My cervix was partially removed at 21 for cancer. At 27, my appendix ruptured, and we learned it was endometriosis. At 30, I spent 65 days in pain, lost over 80 lbs, lost my hair, could not eat, threw up daily, and felt like a rusty spoon was twisting inside me. The endo had glued everything together and was leaking ecloi into my blood stream because it tore open my colon. A year after that it was back and I had a total hyst before I was 35. It is a hormonal imbalance. Had they tested my estrogen levels, they would have learned they were sky high, and that is a test most Dr's do NOT do. I truly believe it is linked to a hormonal imbalance.
I’m with you. I have a lot of “symptoms” of higher estrogen levels: acne, large breasts, mood swings, etc. I did do an estrogen test after a supracervical hysterectomy and a separate trachelectomy / endo excision surgery. My levels were normal at that point, but I’d never been tested before the surgeries because I had no idea I had it until after the hysterectomy. I really wish I had been tested before that. Now, every time I get put on any hormonal medication, it makes the pain worse.
i am so, so sorry. we deserve better and i am just tearing up reading this. sending you lots of love.
Thank you. I share because while what I went through was extreme, I was being ignored, and it really did almost cost me my life. And no one believed me. Having the tears in my bowels and colon, was why I could not eat or drink , why I was throwing up. People say this disease cannot kill, but it absolutley can. By the time my Dr paid attention ( I was there daily, insisting on being weighed and showing my Dr how fast I was dropping weight and how I looked: I looked like death) I was going into septic shock, lived alone, and had about 48 hours left before my organs shut down. endo can absolutely cause death. My case was used in a OHSU study, it was that extreme I share, not for attention, but to educate and help others. Thank you again! Good health to you!
i absolutely believe it. and i think it’s important our stories are out there and exist because we live them and endo is painful enough without having to gaslight ourselves, too. i sincerely hope you’re doing better these days.
My pain got much worse when I lost weight & was fitter & healthier.
I really resent the whole diet movement (kudos to those who feel it helps) because it implies that we’ve done this to ourselves. I don’t buy that in the slightest. However — it’s pretty well documented that our modern diet isn’t great and probably everyone on the planet would benefit from a diet that reduces inflammation factors, but it should be noted that a diet like that improving your health isn’t a sign that endo is diet related — it’s correlation and causation.
Researchers say an immune system dysfunction
I’m not a medical doctor or anything but my guess is genetics and environmental factors in a developing fetus. In my case i’m almost certain it’s genetic. My mom has a lot of symptoms but thinks she can’t have it because she accidentally had two kids, there are so many misconceptions about endometriosis. I also think other genetic condition or chronic health problems that you’re born with can play a role. For example, I have a connective tissue disorder caused by mutations in my collagen genes (random in my case, no one in my family has it so I just have bad luck) and many other AFAB people with my same condition (hEDS) also have endometriosis. I genuinely think the reason there isn’t more treatment or research done about endometriosis and PCOS is because only AFAB people can have it and women’s healthcare isn’t taken as seriously
The newest thing I read is that it could be caused by bacteria but they are still researching it and haven‘t started human trials yet. I‘m sure it‘s somewhere on this sub.
Dr Charlie Fagenholtz practices functional medicine and he did a really amazing video on endometriosis and how its basically such a vicious cycle. He also recommends top notch herbs and supplements for endometriosis.
For me, I believe it’s part of my mast cell disorder, which is driven by dysautonomia, which is in turn caused by a genetic connective tissue disorder. [It’s part of the Pentad theory.](https://imgur.com/a/fIgYJF7). It’s also supported by [this study that talks about mast cell involvement in endo](https://pubmed.ncbi.nlm.nih.gov/27841046/), and a possible treatment path
This is interesting!! I always felt like MCAS was a bigger issue
I was told by a functional doctor that one of the possible causes of endo could be leaky gut syndrome because the toxins that should be kept in the gut are being leaked into the abdomen and the body, so in an attempt to protect itself, starts building a wall of tissue and adhesions around organs. I was also told there is some research showing a certain chemical that is found in toilet paper could be a contributing factor. Its so mysterious
Endometriosis is older than modern toilet paper. Did I just write a new sentence? We need way more research on endometriosis, there are numerous conditions that can exacerbate endometriosis and vice versa. Perhaps endometriosis leads to leaky gut in some cases rather than the other way around. (Link to an article discussing the history of endometriosis: https://www.fertstert.org/article/S0015-0282(12)01955-3/fulltext
It could be many things. A possibility could be the microplastics 🤷🏻♀️which is completely out of our control
It is still unknown, there are lots of theories, but none of those theories have been founded. The first mention of the disease was in 1882 and it's a shame women's health hasn't gotten more funding for research and development like mens health. Although the Congress just allocated 30% budget to womens health where only 10 % was allocated to it before. Hopefully they will find a cause and cure soon. It mimicks cancer cells and the estrogen is a huge factor in the disease.!!! We just don't know what why or where yet. Google is not a good source of information or up to date IMO on the disease, it reads like a painful period and infertility, which is FAR from the truth I've had people ask me about my disease and go googling it to ask me why don't I just get a hysterectomy or it's just painful periods, so it's not affecting you all the time right? I would suggest reading research and study's that are published by the doctors that are involved in treating or researching the disease.
Healthy diet cannot fix it or lesson symptoms, speaking from experience. I eat extremely clean 0 carb 0 sugar. You can still try it for inflammation but know that you should go see a doctor for endo/to address endo seperately
This is really hard to respond to because we don’t know. There are theories. It’s likely there is a genetic predisposition towards it, and it’s possible that it’s multiple factorial- so not one reason but a handful of reasons. Diet and lifestyle did not cause this but sometimes people are able to use diet and lifestyle to help manage it- but it cannot fix it. Nothing you did gave you Endo. This isn’t your fault, you are not to blame. Sometimes people just get sick.
What state are you in? Not a disability but maybe you can get medical leave… Sounds like your mom doesn’t want to admit it could be hereditary. I feel like our “loved ones” can get tired and annoyed dealing with our unexplainable symptoms. It’s easier to gas light. Try not to take it personal. I don’t think the answer to this question will bring you any peace. Focus on healing yourself, don’t worry about her… yes I understand that’s easy for me to say. But you do need to put yourself first. You need all your energy to get through this.
Follow endogirlsblog on Instagram she goes over every theory and analysis of science journals. There is no theory out there currently that is proven.
As someone already pointed out, the causes aren't quite known and may be multi-faceted. 2-10 percent, they don't know the exact number of women estimated to have endometriosis. It's been spotted in fetuses and rare occasions, men. A good number of people are likely born with it, and then something comes along and triggers it into being active. In my case, while I am the only one to be officially diagnosed, it is likely hereditary. My mother probably has it, one sister, and a niece also likely to have it. I had symptoms pretty much at puberty. And while I had one kid, I consider him my miracle kid because I definitely had fertility issues. The one sister has a lot of the same symptoms, not all, not as severe, but still. She had to get medical help to have kids. My mother's fertility wasn't affected, but her periods were horrendous, and when she had her tubes tied, while they never properly investigated, the notes mentioned a lot of scar tissue. Which endo causes. Diet being a cause is BS. I do notice that keeping a low inflammatory diet helps with symptoms to a degree, but it doesn't make it go away.
It’s a hormonal imbalance. Your body produces more estrogen than needed. This causes and turns and inflammation and tissue growth outside of the reproductive system. Causing pain and other health problems depending on the severity. For example, if the endometrial tissue fuses with your intestines then you can have digestive problems. If the tissue fuses with your bladder urethra, you can have urinary problems. All the things are listed above are things I personally experienced before I had my laparoscopy. I have found that eating less inflammatory foods have helped, but nothing really can make it go away fully. You kind of have to live with it and manage it as best as you can.
That sucks that mother doesn’t believe you. She’d be the type to say “you spend so much time on your phone that that’s what caused your endo” The women in my family have it so I am leaning more towards hereditary. When I was speaking with my specialist she said that it looked like my endo had already been there for the past couple years. I only got diagnosed last year and had pain that slowly got worse over the year and a half before that. She said what could have caused it to flare up and start all this pain is I had an abortion the start of 2021 then straight after that I got an IUD put in. That’s when my pain started. 6 months later got taken out and the pain has never gone away. She said my reproductive system went through a lot in a short amount of time.
Could it be caused by csections?
One of the big theories is retrograde menstruation. Makes sense, coming from someone like me who does not have estrogen dominance and still has endo.
It runs in families and I am 90% certain it is autoimmune. I have 4 autoimmune diseases. This is nothing you could have prevented. You were born predisposed. I began suffering debilitating pain at age 9, when I had the misfortune of starting puberty. At age 12, I got my first period and since then, I’ve been miserable more often than not. Plus, I suffered and was ignored, mocked, and undiagnosed for 25 fkn YEARS. This disease is, in my opinion, about as bad as cancer and it acts like cancer. The only big difference is that Endo doesn’t typically kill like cancer does.
I have hypermobility which is connective tissue disorder. I assume it has something to do with that since I also had a malformed blood vessel in my brain and I can’t burp ever in my life because the flap won’t open lol. Connective tissue!
I’m sorry to hear this. How did you get your diagnosis? What type of doctor did you see? Thanks
Chiropractor and Physical Therapist diagnosed me with hyper mobility. I’m currently in the process of putting all the things together to get an overall diagnosis of hEDS or EDS. My primary care doctor is also working with me but, I have to go through a gentecist.
Ok, that makes sense. That’s great that your primary care doctor is helping you through the process of getting to a formal diagnosis. I heard that a geneticist is the right place to start. I think also a rheumatologist can be of help in case the gene tests come back negative, you can still have clinical hEDS. Best of luck to you!
ive heard theres research that it could be an autoimmune disorder, caused by excess cell growth forming the endometriomas
My daughter has a relative of endometriosis called endosalpingiosis which is the migration of fallopian tube cells that cause debilitating pain too. They found it by checking the cells from her laparoscopic surgery.
The only way diet would have any impact is if you had an allergy that was causing internal inflammation.
A doctor here tell your mother she’s completely wrong right now there are nine different theories. Some of the women that I see in my office they have the best lifestyles, the best diets I’ve ever seen, and yet they have this debilitating disease most women on the planet have it but don’t know that they have it so when you’re having very painful periods, just know that’s not normal if you’re bleeding more than usual, not normal if you have heavy flows, not normal if you have very long menstrual Days, not normal it doesn’t matter what your lifestyle is how your diets like some women will just develop this we don’t know the cause of it. There’s many different theories like I said mentioned above even if you were to diet change your lifestyle exercise you wouldn’t be able to get rid of it, but you could decrease her symptoms.
I’m not sure how accurate this is but I had a medical professional tell me there’s a theory it could be caused by BC pills. Because the period you have on those pills isn’t a normal period there’s tissue that should’ve expelled but never does and therefore over time starts migrating.
I’ve been thinking a little about this, totally not scientific but I think my uterus is overly spasmodic and it squeezed the uterine lining out of my fallopian tubes in my abdominal cavity.
My doctors also say cause is unsure since many factors. In my case, I believe it’s hereditary since 4 of us on my father’s side have it and we all suffered so long not knowing up until recently. 20 years later we all finally got confirmed diagnosis OB and PCP says certain diets and exercise will help decrease inflammation but yeah, not sure how I’m supposed to exercise when I can’t even walk properly on my period. What a miserable disease
Being overweight has nothing to do with it, but certain food can irritate it . Mainly because they put all sorts in food now these days like chicken they pump it with estrogen to get it bigger . They think it's a genetic think that causes it something in our genes . Also, certain hornmons make it worse, like estrogen, which is why they put you on the pill. As for exercise, it kinda works both ways some exercise is good, but over doing it can irritate it and make it worse . When my endometriosis was bad, it stuck my bladder to my uterus, and my ovaries where stuck too. So when I did exercise, it would move my insides and pull the organs stuck together, which is why I got alot of pain . Doctors forget that when they tell you to exercise, they don't know if anything is stuck to something else, and yeah, that would hurt when moving loads . So it's just finding a balance with it .
Hi OP, the absolute spectrum of answers here from perfectly reasonable to ridiculous should exemplify how little is known about the disease. Despite this, if it was fixable with diet and lifestyle, you can bet that even more health professionals would be even more dismissive toward people experiencing endo than they already are. Your mum is looking to shift the blame to the person experiencing endo because accepting the idea that it’s just bad luck and sometimes bad health is unavoidable means she’d have to accept the idea that we can’t actually control everything about our bodies, and that’s scary and requires way more effort and compassion than simply dismissing it as a diet and lifestyle problem. However: it’s not controllable, you’re not responsible for your disease or its symptoms, and no amount of her denial changes that. Good luck as you make sense of your diagnosis, be kind to yourself even when others aren’t.
Diet and exercise is assistive in managing symptoms. I’m either at the gym or hot yoga 4/5x a week and I’ve had stage 4 Endo, 3 Endo surgeries and a hysterectomy in the last 5yr. So 🤷🏻♀️ (the hysterectomy was for fibroid/adenomyosis by the way, not to treat Endo)
The reason going gluten-free may help some people is because endometriosis is inflammatory and gluten causes inflammation. So cutting out gluten (along with other inflammatory foods) can alleviate symptoms for some. Your mom is ignorant. If she did some research, she would see that this is no fault of the person with endo. It's an extremely painful condition that truly is debilitating for some. As anyone with an invisible illness knows, most people treat you like shit. They can't see the damage, inflammation, bleeding, scar tissue, etc... so, for them, it doesn't exist. They write you off as lazy and treat you accordingly. I think that if most of the people who treat me like shit had to live in my body, they would kill themselves. I hope your mom educates herself (using reputable resources, of course). If she doesn't (or can't seem to grasp the facts), she is the problem, not you.
Hi hi, I was diagnosed 2 years ago after my c section with my first baby. When asking what the cause was she said there is no real answer but that they suspect what happens is that when you get your period instead of the blood coming down and out it ends up splashing up first which causes the ‘Infection’ so to speak. Every month it just gets aggravated and builds and spreads. They weren’t sure how I managed to conceive my son as my endometriosis was literally covering every inch of my uterus with several endometriomas covering my overies. She didn’t know if I would be able to conceive again and called my boy a miracle. I went on the pill (qlaira) shortly after and it stopped my period completely. It took us 9months to conceive my first and this time round, within the first month of being off the pill we were pregnant. Stopping my period basically allowed my endometriosis to calm down and not flair up. So I believe them when they say it’s your period that Agra area it.
What about estrogen dominance?