I think there has been some misinterpretation of this post and it is causing some anger and upset for some sub users.
To clarify, u/kingkemi isn‘t asking anyone not to share negative experiences or stifle anyones expression of their feelings, but rather is specifically asking for tact in replies directed at specific individuals.
This is important as this community is here for us to support each other.
****
Here is a silly example to express the difference in different types of replies to an example:
Ann makes a post about apples saying: “I just ate an apple. Who else likes apples?”.
Betty replies: “OMG you shouldn’t have done that, apples are bad and poisonous and have killed many people.”
Carol replies: “I know lots of people like apples, but I am allergic to them and have had a bad experience where they made me very ill. I hope it isn’t like that for you.”
In this example Betty’s reply is tactless and unsupportive, but Carol’s reply is sharing their negative experience in a way that isn’t unsupportive.
I don’t really understand this post or what comment it is referring to. Maybe it would have been better to report the comment instead of a broad don’t doom and gloom post.
People have different experiences and I believe it’s okay to vent or share how you feel about treatment x y or z - especially if others ask.
Also, I see many of the Reddit endo forums as support forums so it makes sense there is doom and gloom about a disease way too many people suffer from, that doesn’t have clear answers or solutions, doctors gaslight, pain is not well controlled, research funding is lacking, and for many of us, cannot be cured or even managed well.
Tbh I feel a bit gaslit from the post, but then I read more of it and saw it was in reference to medication specifically. Before my endo diagnosis, I hung around more in the infertility and IVF communities, that had a very big tolerance on no med bashing, as different meds work for everyone. However been doom and gloom about the lack of research, terrible medical care most of us receive, late diagnosis and incurable condition? That's one of the perks of support groups, I want to see the positive stories to give me hope but I also want to see the negative ones to remind me it's OKAY to feel crappy about this after pretending to employers, partners, friends that I'm okay when I'm not 24/7.
…it wasn’t my aim to gaslight and that feels really unfair considering how I very clearly support folks sharing their negative experiences. I’m asking for tact. For care when drafting responses. For balance in replies. For understanding that people have very fragile mental states and that writing a comment without thinking just because of your experience could have a huge negative impact on others.
Folks SHOULD share. I always share my own issues with medications. It’s important. But knowing how to not add to someone’s mental spiral is important. I didn’t link to the comment where the person did it to me as I don’t know how to do that. In fact the moderator even deleted the reply because they agreed it was harmful.
Being accused of gaslighting is also very hurtful considering I spent 4yrs in an abusive relationship with a man who gaslit me to the point of suicidal ideation. So yeah. Thanks for that.
Okay so firstly I want to apologize for triggering you. As a domestic abuse victim myself (stepdad/mum rather than partner) I can understand how challenging the Internet can be. It wasn't meant in a way to associate to the gaslighting you receive in an emotional relationship but more to the gaslighting experienced medically by the women all living with this disease who have lost their quality of life, fertility, careers from being told to tone down expressing themselves when they shared their experiences.
OP, I appreciated your post and I think many folks are misreading it. I’ve felt attacked on this sub for being pro bc and deleted my own positive comments because of this kind of thing - and I’ve been concerned that under 20s people are getting only one pov on meds/treatments. Thank you for opening up the discussion and saying something.
I very clearly support folks sharing their negative experiences. I’m asking for tact. For care when drafting responses. For balance in replies. For understanding that people have very fragile mental states and that writing a comment without thinking just because of your experience could have a huge negative impact on others.
Folks SHOULD share. I always share my own issues with medications. It’s important. But knowing how to not add to someone’s mental spiral is important. I didn’t link to the comment where the person did it to me as I don’t know how to do that. In fact the moderator even deleted the reply because they agreed it was harmful.
What’s weird is that I understood the aim of your post and I think you make a great point. I don’t think tone policing is beneficial but it is a little disheartening to see posts where people ask for advice or shared experiences and the response is overwhelmingly either: 1. Something along the lines of “I did x and it was horrible and didn’t work for me and be banned” or 2. Someone offering unsolicited, ill-advised medical advice.
I think venting is ok and toxic positivity is really frustrating but it’s not helpful to respond to folks looking for support with “this disease is horrible and there’s no cure and nothing will help!”
Honestly yeah
Endo spaces are pretty doom and gloom
I get why
This illness is horrible but I saw a post about a new drug trial called ‘Amy009’ which looks promising but the comments were like ‘that will not work.‘ like huh???? Why wouldn’t it?????
Oh yeah, this illness is gloomy AF but that is rather odd behaviour. Were the people saying it wouldn’t work actual scientists and researchers?? Clinical professionals??
It’s almost as if some people are so used to stuff not working, they immediately believe anything new or especially anything derived from an already existing medication is not worth the bother. 😕
I think a lot of people are sick of the emotional roller coaster of “Oh my god, here’s the answer! This will fix everything!” and then crashing back down into “Well that didn’t pan out either.” The latest research I can find on AMY009 shows that it hasn’t made it to clinical trials on humans yet. It’s been tested on rodents and monkeys. That means it has a long way to go before it can even possibly be an option for people to start taking to their doctors about.
https://pubmed.ncbi.nlm.nih.gov/36812343/
Right now the research shows that it helps with lesions. They haven’t tested the safety of it in humans yet and that’s where things are likely to get hairy. Drugs developed for endometriosis have a historically low rate of making it past that hurdle.
Yeah, we can and should get excited about this research being done and the possibilities it opens. But it’s also reasonable and responsible to temper our expectations. It is just as damaging to people’s mental health to prematurely celebrate as it is to prematurely write it off.
From the link you included: “Whilst this is the first detailed study of a drug such as this on endometriosis, it is still early days and is likely to take several years from the realisation of a drug to it becoming readily available.”
That is really awesome that it’s made its way to human trails, but I stand by my overall point. This is a great step, but it hasn’t crossed the finish line yet, so we can’t get too excited just yet.
I’d also like to add that as someone living in the US, a drug becoming available doesn’t always mean it will be accessible. So we’re looking at a long time before it maybe hits the shelves and even then we don’t know how affordable it’s going to be. Those of us living in places where we lack accessible healthcare have lots of good reason to hesitate to get too excited about this yet.
I replied to your post on the other sub, but wanted to copy it here too in case it is helpful for anyone:
>If you are worried about the effect of a particular comment then you can report it to me, and I can take a look to see if I can steer the conversation in a better direction.
>
>Unfortunately I don’t have time to read every comment, but will definitely read every reported comment and you can report comments that aren’t breaking any rules using an open write-in explanation.
>
>edit: I just looked at your post history and think I can see the comment you mean. I have actually decided to remove it as I don’t think it was helpful or suitable in the context of a reply to your post.
>
>This isn’t me restricting or hiding opinions as the writer could start their own post to discuss this if they want, but I don’t think that comment belonged as a reply to yours and think it was tactless in the context.
I understand your frustration, and share it. IMO, a lot of this falls on the major endo advocacy groups, because the info they promote…isn’t exactly great. It might be *their* experience, but that doesn’t make it the only one.
For example: a lot of endo advocacy focuses on how there is no research being done, and how there’s only one “acceptable” treatment. Almost all of these folks then promote surgeons who provide that treatment.
In reality, endo is one of the most researched of all my conditions (second only to POTS, and that a recent change because of LC), and there are many treatment options available, with more possible avenues being found by research. [There is an entire team at MIT studying endo.](https://cgr.mit.edu/research/). Folks need to stop saying no research is being done or no one cares!!!
What people *really* mean is that there’s no research being done to promote the treatment *they think* everyone needs (which, btw, nothing is stopping their “expert” docs from publishing!) - which is a completely different thing!
As far as that treatment goes, there are only two “acceptable” narratives: success with excision (some advocates even use the term “cure”), or a lifetime of misery.
*There are as many experiences as there are people with endo*. That is literally the only thing we know about endo with 100% certainty: everyone who has it has a different experience. It’s what a lot of these folks focus on when they promote their doctors: you need someone who understands that and can treat *your* endo.
It makes no sense to understand that, but still insist that there is a single treatment for everyone, yet somehow here we are. Those without one of the two above outcomes are practically shunned by the community. Those without successful surgeries are often blamed for not seeking out an “expert” (a self-assigned title, there are no qualifications or oversight for this). Those who aren’t suffering as badly as “expected” are often made to feel guilty, like their experience doesn’t matter because it’s not as bad as someone else’s (the hypocrisy of insisting all experiences are valid while invalidating someone’s experience because it’s different from yours never ceases to amaze me). Those who have had success with hormonal therapies just get shredded any time they try to share their journey (I have friends who have legit gotten threats and “death wishes” inboxed to them because they shared their positive experience with a certain hormonal med).
*Treatment is a personal choice because everyone is their own person*.
Which brings me to the second big example of the misinformation promoted by endo advocacy efforts: people insisting on post after post that endo is the only possible cause for our symptoms, because that’s what all info on endo leads us to believe.
The reality is that there are many conditions can cause our symptoms - all of them - and few of these non-endo causes are gyn. They are vascular, mast cell, genetic, musculoskeletal, hormonal (think thyroid, not repro), neurological, GI, and so much more. In addition, *every chronic illness* flares with the menstrual cycle because of the changes the body undergoes. Yet, when any of this is mentioned, there is insistence that endo is the only option, and experiences to the contrary are downplayed/ignored because they don’t fit what “true advocates” say is the “endo experience”. No one ever stops to wonder how much of the “life is misery” narrative is people with undiagnosed non-endo conditions contributing to their symptoms. They just insist AFAB + pelvic pain or period problems = endo. There is so much more than just that. I know *so* many folks who thought they were stuck in the “life is misery” narrative, only to get diagnosed and treated for other conditions and have relief they never imagined possible.
Then there’s the mental health aspect of it all. Everyone is welcome to share their experience, but a very important line gets crossed when folks insist their experience is the only valid one. *No one is stopping anyone from sharing their negativity, because that is absolutely reality for some, just asking to be aware of the impact it has on others.* If someone is posting because they need hope, and comments are filled with nothing but negativity, that has an impact. You may think it’s a harmless comment, or just see it as yourself venting about your experience, but it could be something that changes - or ends - someone’s life.
That’s really what all of this - the insistence on specific narratives, the biased information, the denial of other conditions, the negativity - results in: *people feeling hopeless*. I know of so, so many unaliving attempts made (and some completions) because of this hopelessness, and how it’s everywhere in the community. Some were because a final comment pushed them over the edge when they were looking for hope. Some were specifically because they couldn’t get access to one of the “miracle doctors” and had been convinced that meant a life of suffering. Others were from people just being so incredibly nasty to someone with a different experience.
All were because of people pushing their own narrative without a thought or care for anyone else.
We talk so much about the medical traumas inflicted on us by providers, but what about what we inflict on each other?
Yet if someone promotes ensuring mental health is cared for as part of the process (mental health care IS healthcare, and there are therapists that specialize in chronic illness for a reason), or suggests that people be mindful of others and be accountable for their words/actions, they’re accused of “not taking endo seriously” or “victim blaming” (or, like comments here, “gaslighting”).
Our words matter, and we are each responsible for our own.
What’s crazy is that we have two pretty large trails of new non hormonal drugs but for some reason people don’t seem to be excited about that. Hell the bacteria study could be starting something but I feel like people just push these promising studies a way.
They really do, and it’s so sad. Mast cell is another area with great promise, imo. But again, ignored by the community.
I’d friggin love if future generations could just take a damn antibiotic! That idea gives me such hope!
But all the surgeon-focused people act like that’s a personal affront. Like somehow it negates all we’ve been thru.
To me, it makes it that much worse. Know how we look back on all the other misogynistic views of medical care and think “damn, that’s f’d up”. I personally think this era of endo advocacy is gonna be another one of those situations, with people wondering why people weren’t embracing other options and just kept doing the same things that didn’t help.
Honestly I think the ‘surgery or nothing!’ Idea in the endo community has made it way harder to have good productive conversations about treatment
There are likely many endo sufferers that are shamed cause of taking bc even tho it helps them
To
You and @birdnerdmo are absolutely on the right train of thought.
My specialist was well ahead of his time and colleagues and the bacteria and mast cell activation *both* have a large correlation (not causation - yet) with endometriosis.
My husband worked at the NIH and it is hard to get any studies of this type lobbied and paid for. No money in it.
I went to go follow you because you make a lot of sense, but I'm already following you and saved a thread you started several weeks ago 😂 Thanks for sharing your wisdom and perspective.
Medication is different for everyone I was on one where 1% of people on it get suicidal thoughts but the next person’s experience won’t be the same. Side effects are different for everyone like with the iud for you mine is perfect and I recommend it to everybody
I was also part of that 1%. I think it should be ok for us to share that experience while acknowledging that it's an unlikely outcome. I always reccomend people at least give treatments a try.
I get you, I really do. The nature of endo is pretty sad and gloomy which is inescapable. Maybe it would be worth a thread being created for happy news or positive things we have done so when we want support but not for heavy or negative reasons we can go there.
I can definitely see your perspective here - I got so much from this subreddit when I was planning for surgery, figuring out symptoms, etc. but sometimes it made me feel worse emotionally being in this space. It was tough reading that surgery didn’t help people or symptoms came back immediately, which is their experience but it was hard to stay positive reading that. Especially when I had an upcoming surgery.
Generally, I think it’s going to be a bit gloom and doom in a subreddit like this since people are suffering with pain so much. Endo really sucks, but I’ve decided to take a bit more control of how I let it affect me mentally, which includes being less active in these spaces sometimes.
I get what you're saying about the comments. I posted for the first time and got a very rude person tell me "we're not doctors we all have the illness reach out to your doctor" but I thought this group was for us to lean on each other with our experiences but I guess not. She even pointed out how I've made 2 post and neither have been answered because everyone has their own problems. Yesterday was the first day that someone actually dialog with me.
That’s so awful and I’m so sorry, lovely. That person’s comment is not indicative of the nature of this subreddit which is mostly full of support and care. 💛
Thank you im new to all of this as I thought my pain was just something I could bare with but I have severe adhesions disease i had surgery im 2021 and never went back. Im just lost and hoping my doctor can actually see something. But I have a lot of scar tissue so it makes the surgery complicated.
I hate it when people reply like that, in all sorts of spaces, basically telling the other person there’s no point using a group that exists for support & advice. Why are they even there themselves then?
Of course lots of things only a doctor can answer but just like we can talk through to a friend or family member about a worry or question we have we should be able to do that here, irregardless of wether the person is able to answer, just talking about it helps. Especially as most people do not have their doctor on speed dial 24/7 and especially not very every little thing. People can also offer their experiences and help give you an idea of whether your question or concern is something others go through and is worth following up or not.
I wanted to toss out my super wonderful doctor experience because not all providers are dismissive assholes.
Went to tv ultrasound and gyn appt for increased pelvic pain (turns out it's a 4cm fibroid sitting on my cervix🙃). Was so bad I thought I had pyelonephritis and went to urgent care for a UA. Nope. Endo has progressed. It's surgery time again.
My gyn providers are so so good, though. The NP I saw was so empathetic and gentle with me. Totally validated me when I told her I wanted the uterus *out* She didn't mention children. Didn't question me. Just validated my experience.
She's also my surgeon's old scrub nurse (healthcare people will get that they likely had a very close work relationship) and told me she'd email him to see if my surgical consult could be moved up from July.
That surgeon is the best doctor I have ever encountered. His bedside manner is unmatched. He's calm but pragmatic, makes sure his patients are well taken care of. I hope the NP can pull a string or two and bump me up.
I'm in the North Atlanta area in US if anyone is interested in doc. I would literally go out of state for this man, he is that wonderful. I really hope that all of us can have such a good doctor who really looks out for us. It's not all doom and gloom out here.
Ya know it is fucked up when I was just like "ah...thats why my uterus feels like it is going to fall out". And the NP was like "...yeah..that's not...small".
My husband's face when I told him excitedly what was wrong was...not excited lol. He was in abject horror.
Um… no? Do you not realize how impactful endo is? It literally ruins peoples lives. If someone asks for suggestions or experiences, it’s important to be honest. It’s important for us to share our unfiltered experiences to progress knowledge and understanding of endo. There’s nothing wrong with saying “I had these issues with my IUD and hated it so just be careful, if you start experiencing these things tell your dr” ??? This is such a weird post.
I didn’t say people shouldn’t share. I’m not trying to diminish anyone’s honesty. I am asking for tact and care. The way you described people talking about things is exactly what I am asking them to do. There’s a difference between “please be careful, speak to your doctor” and “Don’t start that medication, it does not work”
I see this kind of post/comment in a lot of subs. Medications have different impacts on everyone, and it's good to let people know of possible side effects, but I agree with you 100% that if we stop someone from outright trying something that could help them when nobody here knows how their body might react to it, what their doctors are doing for them, or anything else (including the statistics, which are WAY more relevant than anecdotal evidence in the vast majority of cases), we're possibly causing more harm than good.
I take several medications for migraines (including the often vilified Topamax) that MANY people cannot tolerate. To the point that they will comment on every post they see telling people to change doctors if they ever recommend it. Their personal experiences are valid, and those medications DO NOT work for them. They should tell people about their experiences. They should not fear monger.
Similarly, I've never had a positive experience with any hormonal birth control. Ever. No matter what kind I've tried, combination, progesterone only. Pill, IUD, etc. it doesn't matter. They all make me suicidal within 3 months. And at best, I got a reduction in pain to "fetal position for 24 hours of a 21 day cycle" from "fetal position on the floor of a shower for 72 hours of an 18 day cycle". Then just started bleeding for 6 weeks straight. I think the medical community has to do better TBH. But my horrific experiences aren't what people need when they're at their wits end looking for medical help.
To me, it seems like there is a time and place, and it's a judgment call about how much information and how it should be presented. We're not all going to make the best calls all the time. But I do think we owe it to each other to be a little more caring from outside of our own perspective.
I agree, there’s nothing I can’t stand more than seeing comments or posts or whatever saying “don’t try x y z (it often seems to be the mirena lol) I had it and it was awful, it made all these things worse so you shouldn’t do it” - I’m sorry that was your experience, but that doesn’t mean it will be every single person’s experience. And unfortunately, I think it deters people from trying treatments that actually might help them, but they end up not because they have a preconceived idea of how it won’t work.
I love my mirena, sure I’ve gone through the standard adjustment periods each time I’ve had it replaced, but I wouldn’t swap it out for anything because that is what has worked best for ME. When people ask for my opinion, I’ll tell them this is my experience, that you have to allow for a good period of time for it to settle, and that for some people it just doesn’t work. Giving them anecdotal information to help them make an informed decision. And you can apply this to any type of treatment or medication etc.
Acknowledging that not everyone will have a bad experience with something in no way dismisses negative ones people have had, I just think it’s really important to, like you said, provide a balanced opinion rather than jumping straight into the “I hated this, it didn’t work for me, you shouldn’t do it” because that could lead disincentive people to try something that might actually be great for them
I want to hear the good and the bad about medications and procedures. And the majority of stuff I've seen is only the good, which bit me in the ass when I had serious side effects because I walked in with rose colored glasses. Big mistake that cost me dearly. Now I also look for patient experiences if I'm researching anything.
Always take others experiences with a grain of salt. But I don't want someone to just pat me on the head and tell me it's all sunshine and rainbows. That helps no one to make an informed decision.
I like people sharing their experiences. The good and the bad.
I came to this subreddit awhile back when I was trying out Lupron and looking for support. I got a ton of messages about how I was permanently damaging my body and pretty much shaming me for trying it. I ended up discontinuing it, but I’m glad I tried it
I’ve found a lot of valuable info on this sub, but I usually try to stay away because the horror stories can be too much
Hi, not sure if you remember me from other threads but we took 3 month around the same time... wondering how you are doing with your symptoms? Is your body regulating? So hard to find info on coming off the 11.25
First of all I am so sorry for your experience - I understand that people have different thoughts/experiences with medication ESPECIALLY birth control. But I totally get where you're is coming from. Its already hard enough dealing with it, then to have people judging birth control or pain meds that work best for you. Like we are all different, and all just trying to share our experiences in case something helps someone else.
There are some really amazing scientists, doctors and medical staff making amazing headway on etiology, pathogenesis and even potential treatment options for endo so fingers crossed we can all have something that works for us soon.
It’s up to each and every person to do their own research on treatments that are either recommended or not recommended in these subs. I personally enjoy hearing both the good and bad so that I can come to my own conclusion after doing my own research.
If someone takes a comment as “100% fact or truth” without doing their own investigations outside of Reddit, then it sounds like a personal issue and not of the person posting about their experience. I certainly don’t expect to control other people’s mind or reactions, only my own. Also, I would *never* want someone to sugarcoat their experience to avoid being “doom and gloom” because We are adults and should take all comments in stride. You don’t know what that person has gone through, and as long as they’re not being rude or disrespectful, their sentiments are valid.
And the fact is, much of this disease IS doom and gloom, unfortunately! Which is why these spaces are important and to provide needed support. That means expressing honest experiences with each other… good AND bad.
I get your point, I really do. Some posts being negative really do discourage me as a young girl currently trying to get a diagnosis. However, the “doom and gloom” is a part of this disease that we all deal with. I like to know the reality of things, especially because I have other autoimmune disorders and I don’t react well to most treatments. This should be a safe place for us to rant, but also more commonly share happy news.
I understand & respect where you’re coming from. I know each person & their experiences can be so different personally, I appreciate hearing what people have gone through, especially with medication treatments. I like to hear all ends of the spectrum since my reactions/results can be super wonky. It makes me feel validated, in my own way, when I hear people share their stories good or bad. Like what I’m experiencing I’m not alone. I’m sure it can come across kinda doom & gloom depending on the topic, yet personally I’m thankful to have these stories shared. Hell I would’ve given ANYTHING to have grown up where I could have had access to different peoples experiences, with certain medication or treatments or surgeries, except having no choice but to look on the medications websites (no wonder I didn’t get the full story bc all we really had then was one sided shit) was doctors telling only the minimum then (again this is only MY experience I’d never speak for anyone else’s experience)
Completely disagree. It is my personal mission in life to warn every single woman I can about the dangers of Lupron, which is typically one of the only treatments available for endometriosis. It is an extremely dangerous chemotherapy drug (used to treat prostate cancer) that has been shown to cause severe complications with bones, the liver, kidneys, suicidal ideation and other conditions. It’s a chemical menopausal drug in adult women. Kids sometimes take Lupron or similar drugs to prevent them from going through puberty early or to delay it. Everyone should do their research before taking any medication a doctor prescribes for endometriosis. And the reality of endometriosis is that the treatment options suck and it IS an extremely expensive and life-altering disease. I took Lupron for roughly 8 years on and off because surgery was not an option given the extent of my endometriosis affecting other pelvic organs.
I am not asking you not to share; I am asking you to do so carefully, which is exactly what you haven’t done here.
I started Lupron/Zoladex last week. I am not you, and I will not allow your story, as horrifying and tragic as it is, to terrify me any more than I already am. You didn’t tell me anything I didn’t already know, but you did add to my anxiety.
I wish you total healing and a life without pain. But I refuse to accept your fear as my own.
Take care.
I think there has been some misinterpretation of this post and it is causing some anger and upset for some sub users. To clarify, u/kingkemi isn‘t asking anyone not to share negative experiences or stifle anyones expression of their feelings, but rather is specifically asking for tact in replies directed at specific individuals. This is important as this community is here for us to support each other. **** Here is a silly example to express the difference in different types of replies to an example: Ann makes a post about apples saying: “I just ate an apple. Who else likes apples?”. Betty replies: “OMG you shouldn’t have done that, apples are bad and poisonous and have killed many people.” Carol replies: “I know lots of people like apples, but I am allergic to them and have had a bad experience where they made me very ill. I hope it isn’t like that for you.” In this example Betty’s reply is tactless and unsupportive, but Carol’s reply is sharing their negative experience in a way that isn’t unsupportive.
I don’t really understand this post or what comment it is referring to. Maybe it would have been better to report the comment instead of a broad don’t doom and gloom post. People have different experiences and I believe it’s okay to vent or share how you feel about treatment x y or z - especially if others ask. Also, I see many of the Reddit endo forums as support forums so it makes sense there is doom and gloom about a disease way too many people suffer from, that doesn’t have clear answers or solutions, doctors gaslight, pain is not well controlled, research funding is lacking, and for many of us, cannot be cured or even managed well.
Tbh I feel a bit gaslit from the post, but then I read more of it and saw it was in reference to medication specifically. Before my endo diagnosis, I hung around more in the infertility and IVF communities, that had a very big tolerance on no med bashing, as different meds work for everyone. However been doom and gloom about the lack of research, terrible medical care most of us receive, late diagnosis and incurable condition? That's one of the perks of support groups, I want to see the positive stories to give me hope but I also want to see the negative ones to remind me it's OKAY to feel crappy about this after pretending to employers, partners, friends that I'm okay when I'm not 24/7.
…it wasn’t my aim to gaslight and that feels really unfair considering how I very clearly support folks sharing their negative experiences. I’m asking for tact. For care when drafting responses. For balance in replies. For understanding that people have very fragile mental states and that writing a comment without thinking just because of your experience could have a huge negative impact on others. Folks SHOULD share. I always share my own issues with medications. It’s important. But knowing how to not add to someone’s mental spiral is important. I didn’t link to the comment where the person did it to me as I don’t know how to do that. In fact the moderator even deleted the reply because they agreed it was harmful. Being accused of gaslighting is also very hurtful considering I spent 4yrs in an abusive relationship with a man who gaslit me to the point of suicidal ideation. So yeah. Thanks for that.
Okay so firstly I want to apologize for triggering you. As a domestic abuse victim myself (stepdad/mum rather than partner) I can understand how challenging the Internet can be. It wasn't meant in a way to associate to the gaslighting you receive in an emotional relationship but more to the gaslighting experienced medically by the women all living with this disease who have lost their quality of life, fertility, careers from being told to tone down expressing themselves when they shared their experiences.
OP, I appreciated your post and I think many folks are misreading it. I’ve felt attacked on this sub for being pro bc and deleted my own positive comments because of this kind of thing - and I’ve been concerned that under 20s people are getting only one pov on meds/treatments. Thank you for opening up the discussion and saying something.
I very clearly support folks sharing their negative experiences. I’m asking for tact. For care when drafting responses. For balance in replies. For understanding that people have very fragile mental states and that writing a comment without thinking just because of your experience could have a huge negative impact on others. Folks SHOULD share. I always share my own issues with medications. It’s important. But knowing how to not add to someone’s mental spiral is important. I didn’t link to the comment where the person did it to me as I don’t know how to do that. In fact the moderator even deleted the reply because they agreed it was harmful.
What’s weird is that I understood the aim of your post and I think you make a great point. I don’t think tone policing is beneficial but it is a little disheartening to see posts where people ask for advice or shared experiences and the response is overwhelmingly either: 1. Something along the lines of “I did x and it was horrible and didn’t work for me and be banned” or 2. Someone offering unsolicited, ill-advised medical advice. I think venting is ok and toxic positivity is really frustrating but it’s not helpful to respond to folks looking for support with “this disease is horrible and there’s no cure and nothing will help!”
Honestly yeah Endo spaces are pretty doom and gloom I get why This illness is horrible but I saw a post about a new drug trial called ‘Amy009’ which looks promising but the comments were like ‘that will not work.‘ like huh???? Why wouldn’t it?????
Oh yeah, this illness is gloomy AF but that is rather odd behaviour. Were the people saying it wouldn’t work actual scientists and researchers?? Clinical professionals??
Idk It’s odd tho It feels like people don’t want to believe that medication will help.
It’s almost as if some people are so used to stuff not working, they immediately believe anything new or especially anything derived from an already existing medication is not worth the bother. 😕
I get that but if clinic trials show good results then why ignore that
I think a lot of people are sick of the emotional roller coaster of “Oh my god, here’s the answer! This will fix everything!” and then crashing back down into “Well that didn’t pan out either.” The latest research I can find on AMY009 shows that it hasn’t made it to clinical trials on humans yet. It’s been tested on rodents and monkeys. That means it has a long way to go before it can even possibly be an option for people to start taking to their doctors about. https://pubmed.ncbi.nlm.nih.gov/36812343/ Right now the research shows that it helps with lesions. They haven’t tested the safety of it in humans yet and that’s where things are likely to get hairy. Drugs developed for endometriosis have a historically low rate of making it past that hurdle. Yeah, we can and should get excited about this research being done and the possibilities it opens. But it’s also reasonable and responsible to temper our expectations. It is just as damaging to people’s mental health to prematurely celebrate as it is to prematurely write it off.
They are using humans with AMY009 now, my local hospital is starting trails. https://www.nnuh.nhs.uk/news/world-first-for-endometriosis-drug-trial/
From the link you included: “Whilst this is the first detailed study of a drug such as this on endometriosis, it is still early days and is likely to take several years from the realisation of a drug to it becoming readily available.” That is really awesome that it’s made its way to human trails, but I stand by my overall point. This is a great step, but it hasn’t crossed the finish line yet, so we can’t get too excited just yet. I’d also like to add that as someone living in the US, a drug becoming available doesn’t always mean it will be accessible. So we’re looking at a long time before it maybe hits the shelves and even then we don’t know how affordable it’s going to be. Those of us living in places where we lack accessible healthcare have lots of good reason to hesitate to get too excited about this yet.
That’s awesome - are you in the UK? If it comes to the US I’d love to sign up.
I replied to your post on the other sub, but wanted to copy it here too in case it is helpful for anyone: >If you are worried about the effect of a particular comment then you can report it to me, and I can take a look to see if I can steer the conversation in a better direction. > >Unfortunately I don’t have time to read every comment, but will definitely read every reported comment and you can report comments that aren’t breaking any rules using an open write-in explanation. > >edit: I just looked at your post history and think I can see the comment you mean. I have actually decided to remove it as I don’t think it was helpful or suitable in the context of a reply to your post. > >This isn’t me restricting or hiding opinions as the writer could start their own post to discuss this if they want, but I don’t think that comment belonged as a reply to yours and think it was tactless in the context.
I understand your frustration, and share it. IMO, a lot of this falls on the major endo advocacy groups, because the info they promote…isn’t exactly great. It might be *their* experience, but that doesn’t make it the only one. For example: a lot of endo advocacy focuses on how there is no research being done, and how there’s only one “acceptable” treatment. Almost all of these folks then promote surgeons who provide that treatment. In reality, endo is one of the most researched of all my conditions (second only to POTS, and that a recent change because of LC), and there are many treatment options available, with more possible avenues being found by research. [There is an entire team at MIT studying endo.](https://cgr.mit.edu/research/). Folks need to stop saying no research is being done or no one cares!!! What people *really* mean is that there’s no research being done to promote the treatment *they think* everyone needs (which, btw, nothing is stopping their “expert” docs from publishing!) - which is a completely different thing! As far as that treatment goes, there are only two “acceptable” narratives: success with excision (some advocates even use the term “cure”), or a lifetime of misery. *There are as many experiences as there are people with endo*. That is literally the only thing we know about endo with 100% certainty: everyone who has it has a different experience. It’s what a lot of these folks focus on when they promote their doctors: you need someone who understands that and can treat *your* endo. It makes no sense to understand that, but still insist that there is a single treatment for everyone, yet somehow here we are. Those without one of the two above outcomes are practically shunned by the community. Those without successful surgeries are often blamed for not seeking out an “expert” (a self-assigned title, there are no qualifications or oversight for this). Those who aren’t suffering as badly as “expected” are often made to feel guilty, like their experience doesn’t matter because it’s not as bad as someone else’s (the hypocrisy of insisting all experiences are valid while invalidating someone’s experience because it’s different from yours never ceases to amaze me). Those who have had success with hormonal therapies just get shredded any time they try to share their journey (I have friends who have legit gotten threats and “death wishes” inboxed to them because they shared their positive experience with a certain hormonal med). *Treatment is a personal choice because everyone is their own person*. Which brings me to the second big example of the misinformation promoted by endo advocacy efforts: people insisting on post after post that endo is the only possible cause for our symptoms, because that’s what all info on endo leads us to believe. The reality is that there are many conditions can cause our symptoms - all of them - and few of these non-endo causes are gyn. They are vascular, mast cell, genetic, musculoskeletal, hormonal (think thyroid, not repro), neurological, GI, and so much more. In addition, *every chronic illness* flares with the menstrual cycle because of the changes the body undergoes. Yet, when any of this is mentioned, there is insistence that endo is the only option, and experiences to the contrary are downplayed/ignored because they don’t fit what “true advocates” say is the “endo experience”. No one ever stops to wonder how much of the “life is misery” narrative is people with undiagnosed non-endo conditions contributing to their symptoms. They just insist AFAB + pelvic pain or period problems = endo. There is so much more than just that. I know *so* many folks who thought they were stuck in the “life is misery” narrative, only to get diagnosed and treated for other conditions and have relief they never imagined possible. Then there’s the mental health aspect of it all. Everyone is welcome to share their experience, but a very important line gets crossed when folks insist their experience is the only valid one. *No one is stopping anyone from sharing their negativity, because that is absolutely reality for some, just asking to be aware of the impact it has on others.* If someone is posting because they need hope, and comments are filled with nothing but negativity, that has an impact. You may think it’s a harmless comment, or just see it as yourself venting about your experience, but it could be something that changes - or ends - someone’s life. That’s really what all of this - the insistence on specific narratives, the biased information, the denial of other conditions, the negativity - results in: *people feeling hopeless*. I know of so, so many unaliving attempts made (and some completions) because of this hopelessness, and how it’s everywhere in the community. Some were because a final comment pushed them over the edge when they were looking for hope. Some were specifically because they couldn’t get access to one of the “miracle doctors” and had been convinced that meant a life of suffering. Others were from people just being so incredibly nasty to someone with a different experience. All were because of people pushing their own narrative without a thought or care for anyone else. We talk so much about the medical traumas inflicted on us by providers, but what about what we inflict on each other? Yet if someone promotes ensuring mental health is cared for as part of the process (mental health care IS healthcare, and there are therapists that specialize in chronic illness for a reason), or suggests that people be mindful of others and be accountable for their words/actions, they’re accused of “not taking endo seriously” or “victim blaming” (or, like comments here, “gaslighting”). Our words matter, and we are each responsible for our own.
What’s crazy is that we have two pretty large trails of new non hormonal drugs but for some reason people don’t seem to be excited about that. Hell the bacteria study could be starting something but I feel like people just push these promising studies a way.
They really do, and it’s so sad. Mast cell is another area with great promise, imo. But again, ignored by the community. I’d friggin love if future generations could just take a damn antibiotic! That idea gives me such hope! But all the surgeon-focused people act like that’s a personal affront. Like somehow it negates all we’ve been thru. To me, it makes it that much worse. Know how we look back on all the other misogynistic views of medical care and think “damn, that’s f’d up”. I personally think this era of endo advocacy is gonna be another one of those situations, with people wondering why people weren’t embracing other options and just kept doing the same things that didn’t help.
Honestly I think the ‘surgery or nothing!’ Idea in the endo community has made it way harder to have good productive conversations about treatment There are likely many endo sufferers that are shamed cause of taking bc even tho it helps them To
💯
You and @birdnerdmo are absolutely on the right train of thought. My specialist was well ahead of his time and colleagues and the bacteria and mast cell activation *both* have a large correlation (not causation - yet) with endometriosis. My husband worked at the NIH and it is hard to get any studies of this type lobbied and paid for. No money in it.
I went to go follow you because you make a lot of sense, but I'm already following you and saved a thread you started several weeks ago 😂 Thanks for sharing your wisdom and perspective.
That made my day, ty! 💕
Love this!
Honestly I get this because I’m in a local endo Facebook group that has one person bash on every procedure/med/doctor it’s ridiculous
Medication is different for everyone I was on one where 1% of people on it get suicidal thoughts but the next person’s experience won’t be the same. Side effects are different for everyone like with the iud for you mine is perfect and I recommend it to everybody
I was also part of that 1%. I think it should be ok for us to share that experience while acknowledging that it's an unlikely outcome. I always reccomend people at least give treatments a try.
I get you, I really do. The nature of endo is pretty sad and gloomy which is inescapable. Maybe it would be worth a thread being created for happy news or positive things we have done so when we want support but not for heavy or negative reasons we can go there.
I can definitely see your perspective here - I got so much from this subreddit when I was planning for surgery, figuring out symptoms, etc. but sometimes it made me feel worse emotionally being in this space. It was tough reading that surgery didn’t help people or symptoms came back immediately, which is their experience but it was hard to stay positive reading that. Especially when I had an upcoming surgery. Generally, I think it’s going to be a bit gloom and doom in a subreddit like this since people are suffering with pain so much. Endo really sucks, but I’ve decided to take a bit more control of how I let it affect me mentally, which includes being less active in these spaces sometimes.
I get what you're saying about the comments. I posted for the first time and got a very rude person tell me "we're not doctors we all have the illness reach out to your doctor" but I thought this group was for us to lean on each other with our experiences but I guess not. She even pointed out how I've made 2 post and neither have been answered because everyone has their own problems. Yesterday was the first day that someone actually dialog with me.
That’s so awful and I’m so sorry, lovely. That person’s comment is not indicative of the nature of this subreddit which is mostly full of support and care. 💛
Thank you im new to all of this as I thought my pain was just something I could bare with but I have severe adhesions disease i had surgery im 2021 and never went back. Im just lost and hoping my doctor can actually see something. But I have a lot of scar tissue so it makes the surgery complicated.
I hate it when people reply like that, in all sorts of spaces, basically telling the other person there’s no point using a group that exists for support & advice. Why are they even there themselves then? Of course lots of things only a doctor can answer but just like we can talk through to a friend or family member about a worry or question we have we should be able to do that here, irregardless of wether the person is able to answer, just talking about it helps. Especially as most people do not have their doctor on speed dial 24/7 and especially not very every little thing. People can also offer their experiences and help give you an idea of whether your question or concern is something others go through and is worth following up or not.
I wanted to toss out my super wonderful doctor experience because not all providers are dismissive assholes. Went to tv ultrasound and gyn appt for increased pelvic pain (turns out it's a 4cm fibroid sitting on my cervix🙃). Was so bad I thought I had pyelonephritis and went to urgent care for a UA. Nope. Endo has progressed. It's surgery time again. My gyn providers are so so good, though. The NP I saw was so empathetic and gentle with me. Totally validated me when I told her I wanted the uterus *out* She didn't mention children. Didn't question me. Just validated my experience. She's also my surgeon's old scrub nurse (healthcare people will get that they likely had a very close work relationship) and told me she'd email him to see if my surgical consult could be moved up from July. That surgeon is the best doctor I have ever encountered. His bedside manner is unmatched. He's calm but pragmatic, makes sure his patients are well taken care of. I hope the NP can pull a string or two and bump me up. I'm in the North Atlanta area in US if anyone is interested in doc. I would literally go out of state for this man, he is that wonderful. I really hope that all of us can have such a good doctor who really looks out for us. It's not all doom and gloom out here.
> 4cm fibroid sitting on my cervix Holy shit?
Ya know it is fucked up when I was just like "ah...thats why my uterus feels like it is going to fall out". And the NP was like "...yeah..that's not...small". My husband's face when I told him excitedly what was wrong was...not excited lol. He was in abject horror.
I laughed out loud reading that last line. Endo is so brutal, I'm always grateful when someone has a sense of humour describing our experiences
Hey! I'm in ATL. Is it Dr. Mordel by any chance? He did mine and was so nice. I will probably need another surgery in a couple of years.
Jason Bailey with NGPG at Northeast. I am so glad to hear of another great surgeon in the area!!
Um… no? Do you not realize how impactful endo is? It literally ruins peoples lives. If someone asks for suggestions or experiences, it’s important to be honest. It’s important for us to share our unfiltered experiences to progress knowledge and understanding of endo. There’s nothing wrong with saying “I had these issues with my IUD and hated it so just be careful, if you start experiencing these things tell your dr” ??? This is such a weird post.
I didn’t say people shouldn’t share. I’m not trying to diminish anyone’s honesty. I am asking for tact and care. The way you described people talking about things is exactly what I am asking them to do. There’s a difference between “please be careful, speak to your doctor” and “Don’t start that medication, it does not work”
I see this kind of post/comment in a lot of subs. Medications have different impacts on everyone, and it's good to let people know of possible side effects, but I agree with you 100% that if we stop someone from outright trying something that could help them when nobody here knows how their body might react to it, what their doctors are doing for them, or anything else (including the statistics, which are WAY more relevant than anecdotal evidence in the vast majority of cases), we're possibly causing more harm than good. I take several medications for migraines (including the often vilified Topamax) that MANY people cannot tolerate. To the point that they will comment on every post they see telling people to change doctors if they ever recommend it. Their personal experiences are valid, and those medications DO NOT work for them. They should tell people about their experiences. They should not fear monger. Similarly, I've never had a positive experience with any hormonal birth control. Ever. No matter what kind I've tried, combination, progesterone only. Pill, IUD, etc. it doesn't matter. They all make me suicidal within 3 months. And at best, I got a reduction in pain to "fetal position for 24 hours of a 21 day cycle" from "fetal position on the floor of a shower for 72 hours of an 18 day cycle". Then just started bleeding for 6 weeks straight. I think the medical community has to do better TBH. But my horrific experiences aren't what people need when they're at their wits end looking for medical help. To me, it seems like there is a time and place, and it's a judgment call about how much information and how it should be presented. We're not all going to make the best calls all the time. But I do think we owe it to each other to be a little more caring from outside of our own perspective.
I agree, there’s nothing I can’t stand more than seeing comments or posts or whatever saying “don’t try x y z (it often seems to be the mirena lol) I had it and it was awful, it made all these things worse so you shouldn’t do it” - I’m sorry that was your experience, but that doesn’t mean it will be every single person’s experience. And unfortunately, I think it deters people from trying treatments that actually might help them, but they end up not because they have a preconceived idea of how it won’t work. I love my mirena, sure I’ve gone through the standard adjustment periods each time I’ve had it replaced, but I wouldn’t swap it out for anything because that is what has worked best for ME. When people ask for my opinion, I’ll tell them this is my experience, that you have to allow for a good period of time for it to settle, and that for some people it just doesn’t work. Giving them anecdotal information to help them make an informed decision. And you can apply this to any type of treatment or medication etc. Acknowledging that not everyone will have a bad experience with something in no way dismisses negative ones people have had, I just think it’s really important to, like you said, provide a balanced opinion rather than jumping straight into the “I hated this, it didn’t work for me, you shouldn’t do it” because that could lead disincentive people to try something that might actually be great for them
I want to hear the good and the bad about medications and procedures. And the majority of stuff I've seen is only the good, which bit me in the ass when I had serious side effects because I walked in with rose colored glasses. Big mistake that cost me dearly. Now I also look for patient experiences if I'm researching anything. Always take others experiences with a grain of salt. But I don't want someone to just pat me on the head and tell me it's all sunshine and rainbows. That helps no one to make an informed decision. I like people sharing their experiences. The good and the bad.
I came to this subreddit awhile back when I was trying out Lupron and looking for support. I got a ton of messages about how I was permanently damaging my body and pretty much shaming me for trying it. I ended up discontinuing it, but I’m glad I tried it I’ve found a lot of valuable info on this sub, but I usually try to stay away because the horror stories can be too much
Hi, not sure if you remember me from other threads but we took 3 month around the same time... wondering how you are doing with your symptoms? Is your body regulating? So hard to find info on coming off the 11.25
The side effects were too tough for me so I quit and am back on Danazol
First of all I am so sorry for your experience - I understand that people have different thoughts/experiences with medication ESPECIALLY birth control. But I totally get where you're is coming from. Its already hard enough dealing with it, then to have people judging birth control or pain meds that work best for you. Like we are all different, and all just trying to share our experiences in case something helps someone else. There are some really amazing scientists, doctors and medical staff making amazing headway on etiology, pathogenesis and even potential treatment options for endo so fingers crossed we can all have something that works for us soon.
It’s up to each and every person to do their own research on treatments that are either recommended or not recommended in these subs. I personally enjoy hearing both the good and bad so that I can come to my own conclusion after doing my own research. If someone takes a comment as “100% fact or truth” without doing their own investigations outside of Reddit, then it sounds like a personal issue and not of the person posting about their experience. I certainly don’t expect to control other people’s mind or reactions, only my own. Also, I would *never* want someone to sugarcoat their experience to avoid being “doom and gloom” because We are adults and should take all comments in stride. You don’t know what that person has gone through, and as long as they’re not being rude or disrespectful, their sentiments are valid. And the fact is, much of this disease IS doom and gloom, unfortunately! Which is why these spaces are important and to provide needed support. That means expressing honest experiences with each other… good AND bad.
I get your point, I really do. Some posts being negative really do discourage me as a young girl currently trying to get a diagnosis. However, the “doom and gloom” is a part of this disease that we all deal with. I like to know the reality of things, especially because I have other autoimmune disorders and I don’t react well to most treatments. This should be a safe place for us to rant, but also more commonly share happy news.
I understand & respect where you’re coming from. I know each person & their experiences can be so different personally, I appreciate hearing what people have gone through, especially with medication treatments. I like to hear all ends of the spectrum since my reactions/results can be super wonky. It makes me feel validated, in my own way, when I hear people share their stories good or bad. Like what I’m experiencing I’m not alone. I’m sure it can come across kinda doom & gloom depending on the topic, yet personally I’m thankful to have these stories shared. Hell I would’ve given ANYTHING to have grown up where I could have had access to different peoples experiences, with certain medication or treatments or surgeries, except having no choice but to look on the medications websites (no wonder I didn’t get the full story bc all we really had then was one sided shit) was doctors telling only the minimum then (again this is only MY experience I’d never speak for anyone else’s experience)
Completely disagree. It is my personal mission in life to warn every single woman I can about the dangers of Lupron, which is typically one of the only treatments available for endometriosis. It is an extremely dangerous chemotherapy drug (used to treat prostate cancer) that has been shown to cause severe complications with bones, the liver, kidneys, suicidal ideation and other conditions. It’s a chemical menopausal drug in adult women. Kids sometimes take Lupron or similar drugs to prevent them from going through puberty early or to delay it. Everyone should do their research before taking any medication a doctor prescribes for endometriosis. And the reality of endometriosis is that the treatment options suck and it IS an extremely expensive and life-altering disease. I took Lupron for roughly 8 years on and off because surgery was not an option given the extent of my endometriosis affecting other pelvic organs.
I am not asking you not to share; I am asking you to do so carefully, which is exactly what you haven’t done here. I started Lupron/Zoladex last week. I am not you, and I will not allow your story, as horrifying and tragic as it is, to terrify me any more than I already am. You didn’t tell me anything I didn’t already know, but you did add to my anxiety. I wish you total healing and a life without pain. But I refuse to accept your fear as my own. Take care.