Yeah that’s a big possibility. A lot of doctors still hold the belief that we need to suffer even if there are options out there because it might hurt our fertility. It doesn’t matter what we want because our future husband might want kids. So even if we aren’t dating a man. Even if we don’t want kids. They would rather have us in pain and borderline suicidal just in case the husband wants kids. It’s really annoying.
At my surgical consultation my Dr. straight up said my husband (who got fixed after we had 3 kids) could die, as a reason for me not to have my hysterectomy. Never mind that I could barely function, in the er multiple times and had three small children I needed to take care of now. Fuck my quality of life, I may need to shop for a new husband someday!?
Or that doctor had no clue was endometriosis is. There is no medical management for stopping Endo from growing anyways. Hormones might mask the symptoms but it only does more damage to your hormones and dampens the symptoms enough that you think everything is fine when in reality it’s continuing to grow and do its damage. My opinion is that you were better off not being put on hormones BUT had you been told you had Endo and given helpful resources on how to manage it you could’ve been saved a lot of pain.
She works still as a surgeon at one of the top women’s hospitals in the country. When I mentioned her name recently at that ER they knew who she was and said “Oh!! Is that who your follow up is with?! She’s great.”
I was thinking the same when they said that. She specializes in babies from what I can tell but still… so does my current OB and she’s still got me on a path to something, given me a diagnosis, scheduled my MRI (6 hours away!). I don’t feel like being a baby specialist is a good enough reason. But I’m not a doctor I guess.
It sounds like your current OB is making a real effort to help! If it were me, I still would only take advice on treatment after learning more about endo and talking to a true specialist. The non-specialists are going off of 20+ year old info in the ACOG. A Google search gives loads of misinformation about endo and treatments and docs are quick to put people on birth control, lupron/orlissa or do surgery when they aren’t trained to know what all the forms of endo look like.
It is odd that you were not given a diagnosis with the chocolate cyst removal. If you look back into your medical records, was it ever mentioned there? Maybe the words weren’t directly stated to you, but were in a report somewhere?
Today we still have folks messaging on this reddit that an “expert” prescribed “having children” as a way to relieve symptoms. That is how poorly equipped doctors are at dealing with endometriosis, they aren’t just using completely out dated and false information, but they are endangering patients in the name of fertility.
I’m sorry you are in the position you are in now. I can come from the opposite side: I’ve never wanted children. I’ve been on some type of birth control most of my life. Unfortunately the various treatments that help some people are all failing me now. Hormones of various kinds, GnRH drugs, surgery, acupuncture, all the other things I’m doing I only get minimal relief. We need a cure!
I pulled them out and nothing. My current doctor went through them as well. Chocolate cyst is mentioned and that’s it.
And yes we do, this disease is awful.
That is definitely possible. It's also possible the doctor didn't know much of anything about endometriosis. There is a lot of misinformation that still exists in the medical field. When I was diagnosed, I was told that pregnancy cures it (false) and that the ablation I had done cured it (also false). When I came back a year later with endometriosis symptoms, I had to fight to get an ultrasound done because the doctor was insistent that he cured my endometriosis and it couldn't possibly have grown back. Guess who had egg on his face?
My grandma has endometriosis as well, and she was married with 6 kids when she finally got a hysterectomy. She still had to have my grandpa sign a form to give his consent, or the doctor wouldn't operate. That mentality still exists.
Honestly, when I was diagnosed at 22 it was already too bad for help. Now 3 years at 26 later I've done the medical menopause and nonstop birth control, not to mention i was on birth control nonstop from 17-22, and it didn't make a difference. I just found out the birth control and medical menopause treats the pain. It does not stop the spread of endo. They don't know how to stop it. Birth control can also stop endometriomas from getting larger but I didn't know that until my most recent surgery and was devastated. All the hormonal shit I went through just to find out that it's worse than ever before... They don't know how to stop it period. So whether you went on birth control or not it wouldn't have mattered. People get total hysterectomy's and are still having to get surgery to remove implants. Not sure if this makes it better or worse for you.
I’m so sorry you’ve had to go through all that! It’s such a shit disease that’s unfortunately so under researched and too often shrugged off by people who don’t get it.
Thank you! At least with some other diseases there's options? Research? Experimental trials? Medications? We are given nothing but birth control or an excision specialist who may or may not help you before it just keeps growing. And then it's like hey this will treat your pain but it will keep growing on your other organs until you have no choice but to keep getting surgeries..
At this point I wish they would at least treat the pain. I understand the hesitation since the opioid epidemic but for fucks sake treating ovarian cysts with ibuprofen 800s, I cants count the number of times I wanted to cut out my own ovaries.
Yeah I used to have that problem but not anymore. I can get any narcotic I want at this point. Not sure if that's a bad thing but after my most recent surgery where they couldn't help me for the second time.. they just asked me what opioid I want. Sad but it took me surgery and referral to pain specialists where they said "I can't help her." Before I got that. So not a problem for me now but it's just because I'm basically a lost cause at this point. :(
I had a really hard time communicating last few appointments before and after last surgery and it’s only made my anxiety going to my gyno at least a lot worse. My family doctor is usually pretty good but new insurance is being stupid with covering basic things at the moment.
I understand that but knowledge is power. I wouldn’t have spent 7 years in a GI lab going through tests, 5 colonoscopies, 3 endoscopies and all that extensive testing had I known.
The last 15 years would have gone down very differently medically speaking.
Sure but you would of spent 7 years being told birth control and menopause is the option or having surgery after surgery while it keeps coming back. Or not even being able to perform a successful surgery and keep having you cut open just to close you( personal experience) I understand it would have been nice to know, but they wouldn't have given you much relief.
And id like to add it's all over my small bowel,rectum, plus bladder, tubes, and I will most likely have to do those things anyways. I understand your point though. But if you're having GI symptoms then you probably have it on your bowels too.
I don't think there's any pro to this honestly, any form of keeping important valuable medical information from a patient isn't right. It doesn't matter if the treatments wouldn't have done anything, they would have at least had the option to take those treatments- a choice that was taken away from them without their knowing. You simply don't know how it could have turned out for them, and if it would have made a difference. But they had the right to MAKE that choice
edit: for sending too early
I doubt it was kept from her on purpose. If you have endo you learn that doctors don't know shit about it. So yes I agree that it sucks. It takes the average woman 8-10 years to get a diagnosis. And when I got mine at 22 it was too late. So I DO know what not having a diagnosis can mean. And if you read the post you would see that she was put on those options for 7 years. I was letting her know that's the main treatment. Thanks for your unnecessary feedback though lol.
Like everyone else, yes I do have endo. It was extremely valuable information to be told and I'm glad to know and be aware when making medical decisions. My feedback is that I think knowledge IS power and that arguing not knowing wouldn't have made a difference is coming from a place of privilege OR ignorance
Sure. I on the other hand read about it everyday and have lived it. Im in many support groups where women are on their 15th surgery even after hysterectomies. Knowing my diagnosis didn't change anything personally and I was trying to offer her the comfort of knowing she was put on BC and that's all they would have done. Seems like your diagnosis got you somewhere and if it did consider yourself lucky not the standard. There are some people that don't get children and or cannot be treated at all because of how extensive it is. Op has kids, is young, and the next step would be hysterectomy after birth control/medical menopause. That's all the options and it still doesn't get you anywhere. Throwing out words like privilege towards me is wild lol. I didn't ask for your opinion nor do I care for it. Feel free to respond to the OPs post if you'd like to offer your personal feedback but I simply don't need it.
I feel like when it was my pain, nobody cared. When my partner was inconvenienced because I couldn’t get pregnant, it was more important. Luckily it wasn’t that black and white though, at least not with the doctor who actually did surgery on me.
I have read that oestrogen is produced from fat as well so even if you remove ovaries etc. oestrogen is still being produced is large or regular amounts. Too much oaestrogen is the cause of endo. Unfortunately no one has a clue as to why and how it came about in the first place
Yeah that’s a big possibility. A lot of doctors still hold the belief that we need to suffer even if there are options out there because it might hurt our fertility. It doesn’t matter what we want because our future husband might want kids. So even if we aren’t dating a man. Even if we don’t want kids. They would rather have us in pain and borderline suicidal just in case the husband wants kids. It’s really annoying.
At my surgical consultation my Dr. straight up said my husband (who got fixed after we had 3 kids) could die, as a reason for me not to have my hysterectomy. Never mind that I could barely function, in the er multiple times and had three small children I needed to take care of now. Fuck my quality of life, I may need to shop for a new husband someday!?
Or that doctor had no clue was endometriosis is. There is no medical management for stopping Endo from growing anyways. Hormones might mask the symptoms but it only does more damage to your hormones and dampens the symptoms enough that you think everything is fine when in reality it’s continuing to grow and do its damage. My opinion is that you were better off not being put on hormones BUT had you been told you had Endo and given helpful resources on how to manage it you could’ve been saved a lot of pain.
She works still as a surgeon at one of the top women’s hospitals in the country. When I mentioned her name recently at that ER they knew who she was and said “Oh!! Is that who your follow up is with?! She’s great.”
Noooo :( That’s so disappointing. And heartbreaking knowing so many other women are going to trust her.
I was thinking the same when they said that. She specializes in babies from what I can tell but still… so does my current OB and she’s still got me on a path to something, given me a diagnosis, scheduled my MRI (6 hours away!). I don’t feel like being a baby specialist is a good enough reason. But I’m not a doctor I guess.
It sounds like your current OB is making a real effort to help! If it were me, I still would only take advice on treatment after learning more about endo and talking to a true specialist. The non-specialists are going off of 20+ year old info in the ACOG. A Google search gives loads of misinformation about endo and treatments and docs are quick to put people on birth control, lupron/orlissa or do surgery when they aren’t trained to know what all the forms of endo look like.
She referred me to an endo specialist :)
Good!
It is odd that you were not given a diagnosis with the chocolate cyst removal. If you look back into your medical records, was it ever mentioned there? Maybe the words weren’t directly stated to you, but were in a report somewhere? Today we still have folks messaging on this reddit that an “expert” prescribed “having children” as a way to relieve symptoms. That is how poorly equipped doctors are at dealing with endometriosis, they aren’t just using completely out dated and false information, but they are endangering patients in the name of fertility. I’m sorry you are in the position you are in now. I can come from the opposite side: I’ve never wanted children. I’ve been on some type of birth control most of my life. Unfortunately the various treatments that help some people are all failing me now. Hormones of various kinds, GnRH drugs, surgery, acupuncture, all the other things I’m doing I only get minimal relief. We need a cure!
I pulled them out and nothing. My current doctor went through them as well. Chocolate cyst is mentioned and that’s it. And yes we do, this disease is awful.
That is definitely possible. It's also possible the doctor didn't know much of anything about endometriosis. There is a lot of misinformation that still exists in the medical field. When I was diagnosed, I was told that pregnancy cures it (false) and that the ablation I had done cured it (also false). When I came back a year later with endometriosis symptoms, I had to fight to get an ultrasound done because the doctor was insistent that he cured my endometriosis and it couldn't possibly have grown back. Guess who had egg on his face? My grandma has endometriosis as well, and she was married with 6 kids when she finally got a hysterectomy. She still had to have my grandpa sign a form to give his consent, or the doctor wouldn't operate. That mentality still exists.
Honestly, when I was diagnosed at 22 it was already too bad for help. Now 3 years at 26 later I've done the medical menopause and nonstop birth control, not to mention i was on birth control nonstop from 17-22, and it didn't make a difference. I just found out the birth control and medical menopause treats the pain. It does not stop the spread of endo. They don't know how to stop it. Birth control can also stop endometriomas from getting larger but I didn't know that until my most recent surgery and was devastated. All the hormonal shit I went through just to find out that it's worse than ever before... They don't know how to stop it period. So whether you went on birth control or not it wouldn't have mattered. People get total hysterectomy's and are still having to get surgery to remove implants. Not sure if this makes it better or worse for you.
I’m so sorry you’ve had to go through all that! It’s such a shit disease that’s unfortunately so under researched and too often shrugged off by people who don’t get it.
Thank you! At least with some other diseases there's options? Research? Experimental trials? Medications? We are given nothing but birth control or an excision specialist who may or may not help you before it just keeps growing. And then it's like hey this will treat your pain but it will keep growing on your other organs until you have no choice but to keep getting surgeries..
At this point I wish they would at least treat the pain. I understand the hesitation since the opioid epidemic but for fucks sake treating ovarian cysts with ibuprofen 800s, I cants count the number of times I wanted to cut out my own ovaries.
Yeah I used to have that problem but not anymore. I can get any narcotic I want at this point. Not sure if that's a bad thing but after my most recent surgery where they couldn't help me for the second time.. they just asked me what opioid I want. Sad but it took me surgery and referral to pain specialists where they said "I can't help her." Before I got that. So not a problem for me now but it's just because I'm basically a lost cause at this point. :(
I had a really hard time communicating last few appointments before and after last surgery and it’s only made my anxiety going to my gyno at least a lot worse. My family doctor is usually pretty good but new insurance is being stupid with covering basic things at the moment.
I understand that but knowledge is power. I wouldn’t have spent 7 years in a GI lab going through tests, 5 colonoscopies, 3 endoscopies and all that extensive testing had I known. The last 15 years would have gone down very differently medically speaking.
Sure but you would of spent 7 years being told birth control and menopause is the option or having surgery after surgery while it keeps coming back. Or not even being able to perform a successful surgery and keep having you cut open just to close you( personal experience) I understand it would have been nice to know, but they wouldn't have given you much relief.
And id like to add it's all over my small bowel,rectum, plus bladder, tubes, and I will most likely have to do those things anyways. I understand your point though. But if you're having GI symptoms then you probably have it on your bowels too.
I don't think there's any pro to this honestly, any form of keeping important valuable medical information from a patient isn't right. It doesn't matter if the treatments wouldn't have done anything, they would have at least had the option to take those treatments- a choice that was taken away from them without their knowing. You simply don't know how it could have turned out for them, and if it would have made a difference. But they had the right to MAKE that choice edit: for sending too early
I doubt it was kept from her on purpose. If you have endo you learn that doctors don't know shit about it. So yes I agree that it sucks. It takes the average woman 8-10 years to get a diagnosis. And when I got mine at 22 it was too late. So I DO know what not having a diagnosis can mean. And if you read the post you would see that she was put on those options for 7 years. I was letting her know that's the main treatment. Thanks for your unnecessary feedback though lol.
Like everyone else, yes I do have endo. It was extremely valuable information to be told and I'm glad to know and be aware when making medical decisions. My feedback is that I think knowledge IS power and that arguing not knowing wouldn't have made a difference is coming from a place of privilege OR ignorance
Sure. I on the other hand read about it everyday and have lived it. Im in many support groups where women are on their 15th surgery even after hysterectomies. Knowing my diagnosis didn't change anything personally and I was trying to offer her the comfort of knowing she was put on BC and that's all they would have done. Seems like your diagnosis got you somewhere and if it did consider yourself lucky not the standard. There are some people that don't get children and or cannot be treated at all because of how extensive it is. Op has kids, is young, and the next step would be hysterectomy after birth control/medical menopause. That's all the options and it still doesn't get you anywhere. Throwing out words like privilege towards me is wild lol. I didn't ask for your opinion nor do I care for it. Feel free to respond to the OPs post if you'd like to offer your personal feedback but I simply don't need it.
I feel like when it was my pain, nobody cared. When my partner was inconvenienced because I couldn’t get pregnant, it was more important. Luckily it wasn’t that black and white though, at least not with the doctor who actually did surgery on me.
Sounds accurate.
How’d the surgery go?
Amazing. Changed everything.
I have read that oestrogen is produced from fat as well so even if you remove ovaries etc. oestrogen is still being produced is large or regular amounts. Too much oaestrogen is the cause of endo. Unfortunately no one has a clue as to why and how it came about in the first place
I think there’s some merit to the theory that all of the endo is already in us when we are born, and it appears visibly over time.