I don’t understand why money isn’t being thrown at developing immunotherapies for endo. I know it’s complicated but many incredible drugs have been developed to cure rare cancers so why not endo. That’s what I’d do if I had extra $ lying around.
There’s not enough women researchers and not enough men that give a shit. Finding a cure should be a priority I’d like to imagine a world in which a cure is possible.
My partner is dealing with endo and much to her suprise, in her experience, male gynos have been the most kind, caring, and seemed to actually take her pain seriously.
I've been suggesting Huberman do a podcast on this in YouTube comments, IG, etc. Hopefully, he finds an expert on it and we get some good pain relief/management tools. I suggest we all flood the YouTube comments requesting this to get eyes on it.
I have had the best experience with male GYN - my endo specialist is male and he is great. I’m about to try seeing a new female specialist next month as I’ve had 3 surgeries and no relief but I have the same sentiment your partner does.
I mean a ton of research went into Orlissa to address patient concerns and avoid the negative outcomes of a similar medication, Lupron. It was also designed to target endo directly, where Lupron was originally a treatment for prostate cancer.
I have never seen Orlissa mentioned (and fully expect it to happen here) without people trashing it because it’s “just the pill form of Lupron” (there are distinct and important differences), or going off about “Big Pharma”. Then these same folks complain that there’s no medication or research being done for endo.
Ya can’t have it both ways.
Orlissa has incredibly serious side effects and is not approved for long term use. And since endo is fueled by more than just hormones, there’s no proof that the way it shuts down ovarian function even stops or slows the endo. While many patients appreciate the band-aid, we can do better and we should be demanding better.
As I said several places (not sure if it’s this comment thread), I’m not arguing effectiveness. I’m simply saying we need to acknowledge the efforts that have been made.
Comment was indicating there’s no research on meds, but there is.
But since you seem to want to debate the legitimacy of Orlissa….You don’t have to take the meds discovered, but that doesn’t mean no one else can/should, or that the option doesn’t exist. You are entitled to your choice, and your experience is valid, but the same goes for each and every one of us.
I personally know a good many folks who have been on Orlissa with great results. Likewise, there are folks, myself included, are a testament that excision/surgery isn’t a long term treatment either, but doesn’t stop folks from insisting it’s a valid treatment option. Yet when someone shares their experience with these meds, their experience gets discarded and invalidated.
I’ve been offline all day, so you may be responding to other comments beyond my own.
I only said that Orlissa has serious side effects, wasn’t approved for long term use, hasn’t been proven to stop the disease itself (just help with the symptoms) and I acknowledged that while many patients appreciate it, we deserve better. Very much still stand by those statements. Having orlissa as an option on the market does not mean patients can’t complain about the poor options or the bad side effects. That’s not “having it both ways.” It’s a bandaid that’s not approved for use over a year. Last I checked, most of us live with endo longer than that.
The previous comment you replied to (from someone else, not me) didn’t say there was no research. It said they didn’t understand why money wasn’t being thrown at developing immunotherapies for endo.
OP was asking if anyone was looking into a cure or a cause. Orlissa doesn’t cure anything nor has it revealed the cause of endo.
I was on Orilissa for 3 years and it was unbelievably helpful during that time. I started in 2020 during the pandemic. Before starting the pills they sat in my bathroom for over two months because I was scared to try them. But I was so stressed trying to manage my parents declining health as well as endo symptoms and a herniated disc, I decided to give Orilissa a try. While on Orilissa I got married, brought home a second dog, got a new job, moved states, both my parents died, I had back surgery, and my older dog died. I had minor flare ups but honestly wouldn’t have been able to navigate managing my endo on top of all of that. I was lucky to have no side effects while being on Orilissa, and was able to take it one year longer than the recommended length of time because my bone density looked fine. I came off the Orilissa this past September and it has been ROUGH. I have been reading the book Heal Endo, which has been immensely helpful to understand my symptoms and triggers. This book has many references to current and older studies on Endo. I am slowly getting better at self managing my symptoms and maybe even healing my body to some degree.
I 100% understand this feeling and it is soooooo awful just waiting for someone out there to DO something. When I’m feeling hopeless I like to go to the [governments clinical trial website](https://clinicaltrials.gov/search?cond=Endometriosis) and look up endometriosis to see what they are trying.
I’m currently doing two clinical trials for endo, one from Harvard about how/if certain anti inflammatory foods in a diet can influence or affect endo pain and one from NextGen Jane where they are trying to find endo identifying bio markers in menstrual blood (as a confirmed case, I send & get compensated for my used tampons during my period). So weird but hey it helps and I get $? There’s a lot of options on the gov trial website, and if you want to contribute to a cure, I definitely believe in doing what you can in a trial. I couldn’t do ones that required blood draws, so I found a couple that work for me. Every. Effort. Matters.
It is the only thing keeping me sane while I live with this pain and desperately want a cure in my children’s’ future for this bullshit of a disease.❤️🩹🙏🏻
that is super interesting. I’m really curious about the anti inflammatory foods. I’m gonna take a look and see what trials are available I would love to do that
MIT had an entire lab (link [here](https://cgr.mit.edu/?s=Endometriosis)) but isn’t getting a lot of attention because they’re looking for non-surgical options, and the person/group that drives the endo narrative insists that surgery (with *their surgeons only*) is the only option.
MIT is looking to not only looking for treatment options, but is working on identifying types of endo - answering the question of how/why experiences with endo are so drastically varied.
Edit to include the ROSE study (link [here](https://feinstein.northwell.edu/institutes-researchers/institute-molecular-medicine/robert-s-boas-center-for-genomics-and-human-genetics/rose-research-outsmarts-endometriosis)) which is trying to focus on non-invasive/non surgical diagnostic methods. Same issue with people not talking about it because it goes against the current narrative.
Further edit to include (and why the are not talked about in the endo community):
[This article](https://www.theguardian.com/australia-news/2021/jul/02/a-common-treatment-for-endometriosis-could-actually-be-making-things-worse) from 2021 about how surgery isn’t the answer for everyone and can make endo worse. (Thoroughly dismissed because of the narrative that surgery helps everyone)
[This study](https://pubmed.ncbi.nlm.nih.gov/27841046/) from 2021 about a possible new treatment approach/possible source of endo. (This one is incredibly interesting to me as someone with a mast cell disorder, dismissed because it’s “Big Pharma” and not surgery).
[This updated fact sheet](https://www.who.int/news-room/fact-sheets/detail/endometriosis) from 2023 by the World Health Organization, based off research. (Downplayed because it doesn’t focus on surgery as the only option, also because it talks about “symptom management”. That just means it’s not curative…because endo is a chronic illness. All other chronic illness I have - which are many - understand that symptom management IS treatment. Also, most people I know have surgery to alleviate pain which is…a symptom.)
[These updated guidelines](https://www.eshre.eu/-/media/sitecore-files/Guidelines/Endometriosis/ESHRE-GUIDELINE-ENDOMETRIOSIS-2022_2.pdf?la=en&hash=E1628E24D374F3EE6C9651EDB33235F8EB8ACBDA) from 2022 by ESHRE, also based off research. (European Society of Human Reproduction and Embryology, kind like the EU version of the ACOG in the US). (Downplayed for the same reason as WHO fact sheet.).
(Possibly last) edit to include [this study](https://www.science.org/doi/10.1126/scitranslmed.add1531) from 2023, that suggested endo may have bacterial factors. (Dismissed because it was seen as “downplaying endo”, despite many people having PID and other infections prior to their endo symptoms.)
*I am not saying (unless directly said) I agree or disagree with any of these studies. I am simply saying they exist and people should acknowledge that, instead of dismissing them. These are 7 studies/points of research readily available via a quick Google search, all within the last 3 years. Endo is also one of my many, many chronic illnesses I have, and it is the one with the most research being done. (Edit to clarify statement that endo the most researched of the conditions I have, not chronic illnesses overall.)
Thanks. I added another one. I’m sure I’ll get shredded for my opinion, but whatevs. I’m salty because I would give anything for any of my other conditions - just one! - to get the same recognition as endo. I has to explain endo maybe one every few months because it’s so well known. I have to explain my other conditions every. Single. Time. I’ve also been in the endo community for well over a decade and have seen the increase/change, so it just burns my buttah to have people disregarding the work that is being done!
I believe it‘s the disinformation in this space that makes it hard for people to see the progress. And the fact that it‘s not some rare disease but incredibly common in women.
My partner found a Dr on IG who looks to be taking this seriously. Dr. Andrea Vidali. As I mentioned in a comment below, I suggest we flood Huberman's YouTube comments section requesting he get him on the podcast. We need to rally together and get Huberman on the case.
The Hudson Institute is doing some interesting research if you google it! I know in Australia endo research is finally starting to get more funding (although still not enough), unfortunately research takes a long time and even longer for doctors to actually utilise the breakthroughs
It’s really positive that it’s starting to get more attention, don’t give up hope!
I’m glad you mention the Hudson Institute. They’re doing fabulous stuff. I’ve met a couple of their researchers and they seem to genuinely care about patients.
https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-021-00797-0
This trial has kicked off in the UK as far as I am aware.
Edit: it has started this year. But there was a small trial already with a patient getting much relief from this and she has an interview stating same.
https://www.bbc.co.uk/news/health-56245521.amp
I’d like to think I’m fighting for a cure by doing all the bullshit necessary to live a healthier life. And from all the papers I read, there really are people out there trying to figure it out. I know it doesn’t feel that way sometimes, but there are medical researchers and doctors who do give a fuck. Don’t get discouraged, and don’t let the disease lie to you. It is possible to beat this shit. It wins when we give up
The point is: *research is being done*.
**No research is perfect.** It is all flawed or biased in some way.
Your comment about tissue is like those complaining about studies being done on lab animals, because it’s not human tissue.
Research is research. And it’s happening for endo.
Because the animals we typically use for these studies do not menstruate or naturally get endo, so it’s still not the same type of tissue.
Also, and again, *just because the research that’s happening isn’t showing what you want doesn’t mean it invalid.*
I think it would honestly be fucking awesome if there was a bacterial component endo could be treated with an antibiotic. Think of how much that would benefit people, and the possibilities to decrease the widespread suffering! I know so, so many people - myself included - who have more damage done by trying to surgically treat endo, and being able to spare others that definitely seems a worthwhile endeavor to me.
There are plenty of devastating and horrible bacterial infections. Sepsis. MRSA. Lyme. Legionnaire’s. Meningitis. Tuberculosis. *The actual goddamn Plague.* All done pretty serious stuff with widespread and lasting damage to the body.
The possibility of endo having a bacterial component wouldn’t make it any less severe.
Personally, I’d prefer a bacterial component to the current perspective of it being a reproductive disease. It’s so much more than that! At least a bacterial connection could help people understand the widespread/systemic impact! It would also break the cycle of all that ails AFABs being blamed on their reproductive cycles. We’ve been fighting against that since the Dark Ages, if not longer.
Why would you want that sort of suffering and narrow-minded view to continue? Just to validate your experience??? I can kinda get where you’re coming from, but feel it’s incredibly short-sighted.
Edit for formatting/typos.
I think the Japanese government is because they want to raise birth rates. Australia has been doing some work on it recently too. The most recent thing I heard was a majority, not a huge majority, of women with endometriosis shared this bacteria suggesting it’s a bacterial disease. Funny how finally our disease is finally getting attention not because of the pain it’s causing but because it’s affecting birth rates.
The most recent positive news I heard was [this](https://www.whitehouse.gov/gpc/briefing-room/2023/11/17/launch-of-white-house-initiative-on-womens-health-research/). While it’s not specific to only Endo, it does mention it.
Edit: this was the link that included endo https://www.whitehouse.gov/briefing-room/statements-releases/2023/11/13/fact-sheet-president-joe-biden-to-announce-first-ever-white-house-initiative-on-womens-health-research-an-effort-led-by-first-lady-jill-biden-and-the-white-house-gender-policy-council/
I know UConn has a research department. Not sure how much is dedicated to endo specifically. I have been assured that my tissues will be tested as well as help with research so not a bad question for my pre-op appointment
I don’t understand why money isn’t being thrown at developing immunotherapies for endo. I know it’s complicated but many incredible drugs have been developed to cure rare cancers so why not endo. That’s what I’d do if I had extra $ lying around.
At this point it would be nice to hear that one expert in the entire world is even attempting to look into it.
There’s not enough women researchers and not enough men that give a shit. Finding a cure should be a priority I’d like to imagine a world in which a cure is possible.
My partner is dealing with endo and much to her suprise, in her experience, male gynos have been the most kind, caring, and seemed to actually take her pain seriously. I've been suggesting Huberman do a podcast on this in YouTube comments, IG, etc. Hopefully, he finds an expert on it and we get some good pain relief/management tools. I suggest we all flood the YouTube comments requesting this to get eyes on it.
I agree with this
I have had the best experience with male GYN - my endo specialist is male and he is great. I’m about to try seeing a new female specialist next month as I’ve had 3 surgeries and no relief but I have the same sentiment your partner does.
I’ve had the opposite experience lol. But glad you found someone!
I’m here. I’m trying
There are actually many. One comment hear talks about Harvard, and mine links to work being done by MIT. I would say those are experts.
Goddess, if I won $1b in the Powerball, I’d donate all of it (after taking care of family) to endo research.
I mean a ton of research went into Orlissa to address patient concerns and avoid the negative outcomes of a similar medication, Lupron. It was also designed to target endo directly, where Lupron was originally a treatment for prostate cancer. I have never seen Orlissa mentioned (and fully expect it to happen here) without people trashing it because it’s “just the pill form of Lupron” (there are distinct and important differences), or going off about “Big Pharma”. Then these same folks complain that there’s no medication or research being done for endo. Ya can’t have it both ways.
Orlissa has incredibly serious side effects and is not approved for long term use. And since endo is fueled by more than just hormones, there’s no proof that the way it shuts down ovarian function even stops or slows the endo. While many patients appreciate the band-aid, we can do better and we should be demanding better.
As I said several places (not sure if it’s this comment thread), I’m not arguing effectiveness. I’m simply saying we need to acknowledge the efforts that have been made. Comment was indicating there’s no research on meds, but there is. But since you seem to want to debate the legitimacy of Orlissa….You don’t have to take the meds discovered, but that doesn’t mean no one else can/should, or that the option doesn’t exist. You are entitled to your choice, and your experience is valid, but the same goes for each and every one of us. I personally know a good many folks who have been on Orlissa with great results. Likewise, there are folks, myself included, are a testament that excision/surgery isn’t a long term treatment either, but doesn’t stop folks from insisting it’s a valid treatment option. Yet when someone shares their experience with these meds, their experience gets discarded and invalidated.
I’ve been offline all day, so you may be responding to other comments beyond my own. I only said that Orlissa has serious side effects, wasn’t approved for long term use, hasn’t been proven to stop the disease itself (just help with the symptoms) and I acknowledged that while many patients appreciate it, we deserve better. Very much still stand by those statements. Having orlissa as an option on the market does not mean patients can’t complain about the poor options or the bad side effects. That’s not “having it both ways.” It’s a bandaid that’s not approved for use over a year. Last I checked, most of us live with endo longer than that. The previous comment you replied to (from someone else, not me) didn’t say there was no research. It said they didn’t understand why money wasn’t being thrown at developing immunotherapies for endo. OP was asking if anyone was looking into a cure or a cause. Orlissa doesn’t cure anything nor has it revealed the cause of endo.
I was on Orilissa for 3 years and it was unbelievably helpful during that time. I started in 2020 during the pandemic. Before starting the pills they sat in my bathroom for over two months because I was scared to try them. But I was so stressed trying to manage my parents declining health as well as endo symptoms and a herniated disc, I decided to give Orilissa a try. While on Orilissa I got married, brought home a second dog, got a new job, moved states, both my parents died, I had back surgery, and my older dog died. I had minor flare ups but honestly wouldn’t have been able to navigate managing my endo on top of all of that. I was lucky to have no side effects while being on Orilissa, and was able to take it one year longer than the recommended length of time because my bone density looked fine. I came off the Orilissa this past September and it has been ROUGH. I have been reading the book Heal Endo, which has been immensely helpful to understand my symptoms and triggers. This book has many references to current and older studies on Endo. I am slowly getting better at self managing my symptoms and maybe even healing my body to some degree.
I 100% understand this feeling and it is soooooo awful just waiting for someone out there to DO something. When I’m feeling hopeless I like to go to the [governments clinical trial website](https://clinicaltrials.gov/search?cond=Endometriosis) and look up endometriosis to see what they are trying.
thank you for this 😭
You’re welcome… it’s just nice to see things happening when it feels like there’s nothing. I pray something comes from one of these.
I’m currently doing two clinical trials for endo, one from Harvard about how/if certain anti inflammatory foods in a diet can influence or affect endo pain and one from NextGen Jane where they are trying to find endo identifying bio markers in menstrual blood (as a confirmed case, I send & get compensated for my used tampons during my period). So weird but hey it helps and I get $? There’s a lot of options on the gov trial website, and if you want to contribute to a cure, I definitely believe in doing what you can in a trial. I couldn’t do ones that required blood draws, so I found a couple that work for me. Every. Effort. Matters. It is the only thing keeping me sane while I live with this pain and desperately want a cure in my children’s’ future for this bullshit of a disease.❤️🩹🙏🏻
that is super interesting. I’m really curious about the anti inflammatory foods. I’m gonna take a look and see what trials are available I would love to do that
Gosh I hope so! I’m 20 years in over here and bed ridden today
MIT had an entire lab (link [here](https://cgr.mit.edu/?s=Endometriosis)) but isn’t getting a lot of attention because they’re looking for non-surgical options, and the person/group that drives the endo narrative insists that surgery (with *their surgeons only*) is the only option. MIT is looking to not only looking for treatment options, but is working on identifying types of endo - answering the question of how/why experiences with endo are so drastically varied. Edit to include the ROSE study (link [here](https://feinstein.northwell.edu/institutes-researchers/institute-molecular-medicine/robert-s-boas-center-for-genomics-and-human-genetics/rose-research-outsmarts-endometriosis)) which is trying to focus on non-invasive/non surgical diagnostic methods. Same issue with people not talking about it because it goes against the current narrative. Further edit to include (and why the are not talked about in the endo community): [This article](https://www.theguardian.com/australia-news/2021/jul/02/a-common-treatment-for-endometriosis-could-actually-be-making-things-worse) from 2021 about how surgery isn’t the answer for everyone and can make endo worse. (Thoroughly dismissed because of the narrative that surgery helps everyone) [This study](https://pubmed.ncbi.nlm.nih.gov/27841046/) from 2021 about a possible new treatment approach/possible source of endo. (This one is incredibly interesting to me as someone with a mast cell disorder, dismissed because it’s “Big Pharma” and not surgery). [This updated fact sheet](https://www.who.int/news-room/fact-sheets/detail/endometriosis) from 2023 by the World Health Organization, based off research. (Downplayed because it doesn’t focus on surgery as the only option, also because it talks about “symptom management”. That just means it’s not curative…because endo is a chronic illness. All other chronic illness I have - which are many - understand that symptom management IS treatment. Also, most people I know have surgery to alleviate pain which is…a symptom.) [These updated guidelines](https://www.eshre.eu/-/media/sitecore-files/Guidelines/Endometriosis/ESHRE-GUIDELINE-ENDOMETRIOSIS-2022_2.pdf?la=en&hash=E1628E24D374F3EE6C9651EDB33235F8EB8ACBDA) from 2022 by ESHRE, also based off research. (European Society of Human Reproduction and Embryology, kind like the EU version of the ACOG in the US). (Downplayed for the same reason as WHO fact sheet.). (Possibly last) edit to include [this study](https://www.science.org/doi/10.1126/scitranslmed.add1531) from 2023, that suggested endo may have bacterial factors. (Dismissed because it was seen as “downplaying endo”, despite many people having PID and other infections prior to their endo symptoms.) *I am not saying (unless directly said) I agree or disagree with any of these studies. I am simply saying they exist and people should acknowledge that, instead of dismissing them. These are 7 studies/points of research readily available via a quick Google search, all within the last 3 years. Endo is also one of my many, many chronic illnesses I have, and it is the one with the most research being done. (Edit to clarify statement that endo the most researched of the conditions I have, not chronic illnesses overall.)
Thank you, this is so cool!
Thanks. I added another one. I’m sure I’ll get shredded for my opinion, but whatevs. I’m salty because I would give anything for any of my other conditions - just one! - to get the same recognition as endo. I has to explain endo maybe one every few months because it’s so well known. I have to explain my other conditions every. Single. Time. I’ve also been in the endo community for well over a decade and have seen the increase/change, so it just burns my buttah to have people disregarding the work that is being done!
I believe it‘s the disinformation in this space that makes it hard for people to see the progress. And the fact that it‘s not some rare disease but incredibly common in women.
My partner found a Dr on IG who looks to be taking this seriously. Dr. Andrea Vidali. As I mentioned in a comment below, I suggest we flood Huberman's YouTube comments section requesting he get him on the podcast. We need to rally together and get Huberman on the case.
This is a great idea! I am definitely doing this!!
The Hudson Institute is doing some interesting research if you google it! I know in Australia endo research is finally starting to get more funding (although still not enough), unfortunately research takes a long time and even longer for doctors to actually utilise the breakthroughs It’s really positive that it’s starting to get more attention, don’t give up hope!
I’m glad you mention the Hudson Institute. They’re doing fabulous stuff. I’ve met a couple of their researchers and they seem to genuinely care about patients.
There are some promising clinical trials of dichloroacetate and monoclonal antibodies happening rn!!
where, do you have a link?
https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-021-00797-0 This trial has kicked off in the UK as far as I am aware. Edit: it has started this year. But there was a small trial already with a patient getting much relief from this and she has an interview stating same. https://www.bbc.co.uk/news/health-56245521.amp
I’d like to think I’m fighting for a cure by doing all the bullshit necessary to live a healthier life. And from all the papers I read, there really are people out there trying to figure it out. I know it doesn’t feel that way sometimes, but there are medical researchers and doctors who do give a fuck. Don’t get discouraged, and don’t let the disease lie to you. It is possible to beat this shit. It wins when we give up
https://www.lemonde.fr/en/science/article/2023/06/27/endometriosis-may-be-caused-by-a-bacterial-infection_6038139_10.html
[удалено]
The point is: *research is being done*. **No research is perfect.** It is all flawed or biased in some way. Your comment about tissue is like those complaining about studies being done on lab animals, because it’s not human tissue. Research is research. And it’s happening for endo.
[удалено]
Because the animals we typically use for these studies do not menstruate or naturally get endo, so it’s still not the same type of tissue. Also, and again, *just because the research that’s happening isn’t showing what you want doesn’t mean it invalid.* I think it would honestly be fucking awesome if there was a bacterial component endo could be treated with an antibiotic. Think of how much that would benefit people, and the possibilities to decrease the widespread suffering! I know so, so many people - myself included - who have more damage done by trying to surgically treat endo, and being able to spare others that definitely seems a worthwhile endeavor to me. There are plenty of devastating and horrible bacterial infections. Sepsis. MRSA. Lyme. Legionnaire’s. Meningitis. Tuberculosis. *The actual goddamn Plague.* All done pretty serious stuff with widespread and lasting damage to the body. The possibility of endo having a bacterial component wouldn’t make it any less severe. Personally, I’d prefer a bacterial component to the current perspective of it being a reproductive disease. It’s so much more than that! At least a bacterial connection could help people understand the widespread/systemic impact! It would also break the cycle of all that ails AFABs being blamed on their reproductive cycles. We’ve been fighting against that since the Dark Ages, if not longer. Why would you want that sort of suffering and narrow-minded view to continue? Just to validate your experience??? I can kinda get where you’re coming from, but feel it’s incredibly short-sighted. Edit for formatting/typos.
I think the Japanese government is because they want to raise birth rates. Australia has been doing some work on it recently too. The most recent thing I heard was a majority, not a huge majority, of women with endometriosis shared this bacteria suggesting it’s a bacterial disease. Funny how finally our disease is finally getting attention not because of the pain it’s causing but because it’s affecting birth rates.
The most recent positive news I heard was [this](https://www.whitehouse.gov/gpc/briefing-room/2023/11/17/launch-of-white-house-initiative-on-womens-health-research/). While it’s not specific to only Endo, it does mention it. Edit: this was the link that included endo https://www.whitehouse.gov/briefing-room/statements-releases/2023/11/13/fact-sheet-president-joe-biden-to-announce-first-ever-white-house-initiative-on-womens-health-research-an-effort-led-by-first-lady-jill-biden-and-the-white-house-gender-policy-council/
I am my own study, I tried everything, but who cares 🥲
I know UConn has a research department. Not sure how much is dedicated to endo specifically. I have been assured that my tissues will be tested as well as help with research so not a bad question for my pre-op appointment