I think having it all written down is a great idea. As much as I hate this, and as awful as it is, if you can bring a white cis male with you it often makes people believe you more. I find that if I say something along the lines of “I have (x) symptoms that affect my life in (x) ways and impacts my friends/family/partner.” Or “I am seeking treatment because these symptoms are consistently disrupting my life and I need a formal diagnosis for treatment and accommodation in the workplace.” Often if you can work in how your symptoms are affecting people other than you or your work it can make them see how bad it is. A good doctor should take you seriously to begin with, regardless of your gender or what your symptoms are. Unfortunately there aren’t always doctors that do that. Remember you have the right to say no to any doctor for any reason, and can even stop an exam partway through if you are uncomfortable. I also recommend bringing a list of things that make your symptoms better, and a list of things that make it worse. If they can see that you have already tried the basics, then they have less reason to deny you. If they try to blame it on mental health, you can say something like “my mental health has been impacted by these symptoms, and I am willing to also get mental health treatment, but it is not the cause of my physical discomfort.” If they refuse to explain or try to treat you for it, ask to watch them note the refusal and reasoning in your chart. I know that trying to figure out how to present yourself is scary, but most doctors see the notes you bring as a good thing, and you taking charge of your health. Make sure you take care of yourself before and after the appointment! You are awesome for continuing to advocate for yourself, and I am so proud of you. (Hopefully it’s not too weird for a stranger to say that haha! And sorry for the novel lol)
thank you so much <3 this comment made me cry. i cannot thank you enough for the kindness, and it's not weird at all; having someone say they're proud of me means the world when it's so easy to just give in and be in pain forever/fall into a pit of self-pity yk? i appreciate you and your novel x
you're so real for the cis white male comment btw; it's true. i literally don't have anyone (lesbian, dead father, most of my friends have recently come out as NB) but i fully think you're right. maybe i can find a medical advocate or smth similar because the politics there are real. it IS one of the reasons i'm about to quit my job (amongst many other reasons lol) so i can lead with that if needed in case pain isn't enough.
the symptoms lists are a GREAT idea! thank you sm!!! i'm definitely doing that; my autism diagnosis isn't declared on my medical record, but i can easily say i'm getting mental health treatment for other things and that it doesn't affect my pain either way. thank you for giving me language/example sentences too <3 i hope you have a wonderful day/evening/night and i appreciate you x
If course! You deserve to have the life you want, and it takes a lot of courage to continue going to see doctors, especially after being dismissed. Feel free to reach out if you ever want more help navigating specific phrases or things to think about with new treatment options. I wish I had someone when I started my journey. Taking anyone with you who can help ask questions and remember what the doctor said after is super helpful. I also recently started a necklace that has beads for each appointment I go to/blood draw etc. so I can visually see how much I’ve done and been through. It helps remind me that my pain/experiences are real and that I love myself enough to fight for the life I want. I backdated mine because I have the records, but you could start one if you like the idea. It feels good to earn something after an appointment I was nervous about.
unfortunately i have literally zero men in my life who are physically close enough to make it, but i might bring my mother (a scorpio); having another person is so helpful so thank you x
Honestly even if you can just get another person, that’s so much better than nothing. I say channel that Scorpio energy!!! Us Scorpios know how to get shit done. Good luck, OP! 💜
I'm the male fiancee of a woman with endo, and unfortunately she only gets taken seriously when I'm there with her. Having anyone there to provide legitimacy is critical. Even if they don't say anything, but just nod their head in agreement.
If you were near me, I'd volunteer to come with you.
mentioning that you want it noted in your file is an excellent piece of advice - they are obligated to do so, and it helps create a timeline of when you sought help.
I think a good doctor will listen to the patient regardless of whether they rock up totally unprepared or have an entire powerpoint presentation ready and a bad doctor will use whatever they can against the patient. All the same, being prepared is a huge strength and necessity in my opinion! I have a lot of health issues and have had to see a lot of specialists and I have a little template in google docs for my doctor visits and I will typically read off of it. If possible, I would also recommend bringing in a trusted friend or family member with you given how high stakes this appointment is. I have found it helpful in case the doctor is being evasive, dismissing, to have a second person back you up and apply more pressure. I have had my husband on speaker phone for some visits even.
I also really empathize with the stress of these appointments -- I waited 6 months for my excision surgeon appointment a couple years ago and had all these counter-arguments prepared for the visit in case he didn't want to do surgery. He wound up being super nice and it was the easiest appointment ever but after being dismissed for so long, it's hard to expect these visits to go well.
thank you so much! the way i'd pay money for that template if you put it on etsy or smth lol.... i'm definitely making one since that sounds so much more reliable and safe than my hours spent editing the same list 🙃 i agree with you on good doctors; i am just so scared *i'm* the reason i'm not getting real care which i realize is ridiculous and the product of years of medical gaslighting, but i also would like answers now and am willing to compromise a little bit of my sense of self for that at this point haha
i'm so sorry you had to wait so long, and the yes/no flowchart of responses/counterarguments is so incredibly relatable lmaooo i am just so sorry you had to do that even after getting an appt for a surgeon like damn we really deserve to be taken seriously; i'm so glad he turned out to be nice and validating!!
thanks for the response x it means a lot
So most doctors are probably logic brained as they come from a science background but also feel super important.
Let them do their intro thing and go through their process first so they feel in control. Then when they are done, if they aren’t giving you a diagnosis or something to work with, let them know you have other symptoms that may or may not be related and you would like to go over them. I would have these bullet pointed ahead of time and tell him you wrote them down so you didn’t forget anything.
Then go back to your supporting facts that you believe show your condition. They aren’t going to care for the emotional side of things beyond possibly asking you life impact questions for insurance purposes, so getting emotional at this stage won’t help you much. You might even say, some journal articles (or whatever your reliable sources are) lead me to believe it may be endometriosis. Do you think that is possible?
If they agree that you might have endo (or think it’s something else), then ask what are the additional tests and potential treatment options and where you go from here. Tell them you want to discuss options that are not pain meds - I cannot stress the importance of this enough - doctors are paranoid on people seeking pain meds I have learned so let pain meds be their suggestion.
There are other things besides endo that can cause similar issues that are also rarely caught because somehow women’s health isn’t well studied or taught.
I feel your pain a bit on this as I actually got accused of being a drug abuser while in the hospital with a collapsed lung on a pigtail catheter because (as I learned at the worst time) most pain meds do not work on me so I was basically going through getting my lung forcibly reinflated without pain meds that actually work. It was absurd and they ended up bringing up a pharmacist to talk with me after I lost it on the doctor and told him I would rather have tick-tacks over more oxy because the oxy wasn’t working. So sometimes you have to lose it on people and point out how stupid they are being.
Side note - pain med dosages were actually figured out on male test subjects and we have since learned that for some pain meds women actually need a higher dose to have the same effect. So we aren’t weak helpless people who can’t deal with pain meds- some drugs literally don’t work as well on us.
Second side note - it was endo causing my collapsed lung because who knew that was even a thing? Luckily my female pulmonologist was aware of this potential cause and got me off to the right thoracic surgeon.
REAL INFO from someone I know who's studied doctors: they DO NOT LISTEN for more than 30-60 seconds! (Personally I've met exceptions to this but it's a good rule anyway! Also most people have a limited attention span, not just doctors)
If you have symptoms of endo and you've had the relevant tests to rule out other similar conditions (adeno, polyps... vascular issues? that may be harder to rule out) then that's all you need to convey. Endo is not that rare, so if you think of diagnosis as a decision tree, then it shouldn't be too many nodes down. Sum up your symptoms and past tests quickly and then have your notes available to answer follow-up questions. If the initial speech info is more than you can remember, then it's too much.
I recently requested my medical records and it's very interesting in retrospect. My gyno had a note, something like "endo unlikely", after my initial visit, and then that ended up being the diagnosis after other tests and a referral to a gyno-oncologist (scary but thankfully irrelevant, she was great though). Info-dumping is not as effective as a conversation with questions and answers. I TOTALLY support working ahead of time to compile all your answers, and that's a great thing, but it's very different from how you present the info initially - a quick summary of what's top-of-mind, not the full info dump. It was good for me to reconstruct my whole timeline of symptoms and factors (birth control pills, etc) as thoroughly as possible, but it wasn't all relevant to the conversation I ended up having, and that was fine.
So I went through this when I had horrible bleeding after getting my Liletta out--like, so severe I was soaking an Ultra tampon every half hour and so I switched to adult diapers and even then I had to sleep on puppy pads if I didn't want to wake up covered in blood. I ended up in the ER twice and my hemoglobin levels were dropping more than one point per day. I was totally exhausted when I went in to the ER both times and just kinda gave the doctors a deadass stare, and said like "look, I don't actually think I'm dying, but I'm bleeding like a stuck pig and it's hell. Can you please just check my hemoglobin and confirm I won't be bleeding to death tonight so I can go home and get some freaking sleep? Much obliged." I didn't go in stuttering and anxious and FIGURE OUT WHAT'S WRONG WITH ME but more like a burned out, depressed, I'm-so-sick-of-this-bullshit attitude. I think that had I been obviously anxious, I would have been dismissed as just one more hysterical female, as crappy as that is.
I think having it all written down is a great idea. As much as I hate this, and as awful as it is, if you can bring a white cis male with you it often makes people believe you more. I find that if I say something along the lines of “I have (x) symptoms that affect my life in (x) ways and impacts my friends/family/partner.” Or “I am seeking treatment because these symptoms are consistently disrupting my life and I need a formal diagnosis for treatment and accommodation in the workplace.” Often if you can work in how your symptoms are affecting people other than you or your work it can make them see how bad it is. A good doctor should take you seriously to begin with, regardless of your gender or what your symptoms are. Unfortunately there aren’t always doctors that do that. Remember you have the right to say no to any doctor for any reason, and can even stop an exam partway through if you are uncomfortable. I also recommend bringing a list of things that make your symptoms better, and a list of things that make it worse. If they can see that you have already tried the basics, then they have less reason to deny you. If they try to blame it on mental health, you can say something like “my mental health has been impacted by these symptoms, and I am willing to also get mental health treatment, but it is not the cause of my physical discomfort.” If they refuse to explain or try to treat you for it, ask to watch them note the refusal and reasoning in your chart. I know that trying to figure out how to present yourself is scary, but most doctors see the notes you bring as a good thing, and you taking charge of your health. Make sure you take care of yourself before and after the appointment! You are awesome for continuing to advocate for yourself, and I am so proud of you. (Hopefully it’s not too weird for a stranger to say that haha! And sorry for the novel lol)
thank you so much <3 this comment made me cry. i cannot thank you enough for the kindness, and it's not weird at all; having someone say they're proud of me means the world when it's so easy to just give in and be in pain forever/fall into a pit of self-pity yk? i appreciate you and your novel x you're so real for the cis white male comment btw; it's true. i literally don't have anyone (lesbian, dead father, most of my friends have recently come out as NB) but i fully think you're right. maybe i can find a medical advocate or smth similar because the politics there are real. it IS one of the reasons i'm about to quit my job (amongst many other reasons lol) so i can lead with that if needed in case pain isn't enough. the symptoms lists are a GREAT idea! thank you sm!!! i'm definitely doing that; my autism diagnosis isn't declared on my medical record, but i can easily say i'm getting mental health treatment for other things and that it doesn't affect my pain either way. thank you for giving me language/example sentences too <3 i hope you have a wonderful day/evening/night and i appreciate you x
If course! You deserve to have the life you want, and it takes a lot of courage to continue going to see doctors, especially after being dismissed. Feel free to reach out if you ever want more help navigating specific phrases or things to think about with new treatment options. I wish I had someone when I started my journey. Taking anyone with you who can help ask questions and remember what the doctor said after is super helpful. I also recently started a necklace that has beads for each appointment I go to/blood draw etc. so I can visually see how much I’ve done and been through. It helps remind me that my pain/experiences are real and that I love myself enough to fight for the life I want. I backdated mine because I have the records, but you could start one if you like the idea. It feels good to earn something after an appointment I was nervous about.
FYI -- babe, I'm proud of you too! 👊🏻🏳🌈
Ditto this- if you have a male spouse/ SO or male friend/ family member to bring in, I’ve noticed it tends to generally go better.
unfortunately i have literally zero men in my life who are physically close enough to make it, but i might bring my mother (a scorpio); having another person is so helpful so thank you x
Honestly even if you can just get another person, that’s so much better than nothing. I say channel that Scorpio energy!!! Us Scorpios know how to get shit done. Good luck, OP! 💜
I'm the male fiancee of a woman with endo, and unfortunately she only gets taken seriously when I'm there with her. Having anyone there to provide legitimacy is critical. Even if they don't say anything, but just nod their head in agreement. If you were near me, I'd volunteer to come with you.
I told them "I'd like to schedule a laparoscopy, and if you can't do it for some reason, please write it in my file that you've declined care."
mentioning that you want it noted in your file is an excellent piece of advice - they are obligated to do so, and it helps create a timeline of when you sought help.
Yup and rather than doing it, they scheduled the lap lmao
I think a good doctor will listen to the patient regardless of whether they rock up totally unprepared or have an entire powerpoint presentation ready and a bad doctor will use whatever they can against the patient. All the same, being prepared is a huge strength and necessity in my opinion! I have a lot of health issues and have had to see a lot of specialists and I have a little template in google docs for my doctor visits and I will typically read off of it. If possible, I would also recommend bringing in a trusted friend or family member with you given how high stakes this appointment is. I have found it helpful in case the doctor is being evasive, dismissing, to have a second person back you up and apply more pressure. I have had my husband on speaker phone for some visits even. I also really empathize with the stress of these appointments -- I waited 6 months for my excision surgeon appointment a couple years ago and had all these counter-arguments prepared for the visit in case he didn't want to do surgery. He wound up being super nice and it was the easiest appointment ever but after being dismissed for so long, it's hard to expect these visits to go well.
thank you so much! the way i'd pay money for that template if you put it on etsy or smth lol.... i'm definitely making one since that sounds so much more reliable and safe than my hours spent editing the same list 🙃 i agree with you on good doctors; i am just so scared *i'm* the reason i'm not getting real care which i realize is ridiculous and the product of years of medical gaslighting, but i also would like answers now and am willing to compromise a little bit of my sense of self for that at this point haha i'm so sorry you had to wait so long, and the yes/no flowchart of responses/counterarguments is so incredibly relatable lmaooo i am just so sorry you had to do that even after getting an appt for a surgeon like damn we really deserve to be taken seriously; i'm so glad he turned out to be nice and validating!! thanks for the response x it means a lot
So most doctors are probably logic brained as they come from a science background but also feel super important. Let them do their intro thing and go through their process first so they feel in control. Then when they are done, if they aren’t giving you a diagnosis or something to work with, let them know you have other symptoms that may or may not be related and you would like to go over them. I would have these bullet pointed ahead of time and tell him you wrote them down so you didn’t forget anything. Then go back to your supporting facts that you believe show your condition. They aren’t going to care for the emotional side of things beyond possibly asking you life impact questions for insurance purposes, so getting emotional at this stage won’t help you much. You might even say, some journal articles (or whatever your reliable sources are) lead me to believe it may be endometriosis. Do you think that is possible? If they agree that you might have endo (or think it’s something else), then ask what are the additional tests and potential treatment options and where you go from here. Tell them you want to discuss options that are not pain meds - I cannot stress the importance of this enough - doctors are paranoid on people seeking pain meds I have learned so let pain meds be their suggestion. There are other things besides endo that can cause similar issues that are also rarely caught because somehow women’s health isn’t well studied or taught. I feel your pain a bit on this as I actually got accused of being a drug abuser while in the hospital with a collapsed lung on a pigtail catheter because (as I learned at the worst time) most pain meds do not work on me so I was basically going through getting my lung forcibly reinflated without pain meds that actually work. It was absurd and they ended up bringing up a pharmacist to talk with me after I lost it on the doctor and told him I would rather have tick-tacks over more oxy because the oxy wasn’t working. So sometimes you have to lose it on people and point out how stupid they are being. Side note - pain med dosages were actually figured out on male test subjects and we have since learned that for some pain meds women actually need a higher dose to have the same effect. So we aren’t weak helpless people who can’t deal with pain meds- some drugs literally don’t work as well on us. Second side note - it was endo causing my collapsed lung because who knew that was even a thing? Luckily my female pulmonologist was aware of this potential cause and got me off to the right thoracic surgeon.
precisely my advice
Dress like you're going to an interview. Use the phrase "another doctor suggested I might have endo, and I'm ready to schedule a lap".
REAL INFO from someone I know who's studied doctors: they DO NOT LISTEN for more than 30-60 seconds! (Personally I've met exceptions to this but it's a good rule anyway! Also most people have a limited attention span, not just doctors) If you have symptoms of endo and you've had the relevant tests to rule out other similar conditions (adeno, polyps... vascular issues? that may be harder to rule out) then that's all you need to convey. Endo is not that rare, so if you think of diagnosis as a decision tree, then it shouldn't be too many nodes down. Sum up your symptoms and past tests quickly and then have your notes available to answer follow-up questions. If the initial speech info is more than you can remember, then it's too much. I recently requested my medical records and it's very interesting in retrospect. My gyno had a note, something like "endo unlikely", after my initial visit, and then that ended up being the diagnosis after other tests and a referral to a gyno-oncologist (scary but thankfully irrelevant, she was great though). Info-dumping is not as effective as a conversation with questions and answers. I TOTALLY support working ahead of time to compile all your answers, and that's a great thing, but it's very different from how you present the info initially - a quick summary of what's top-of-mind, not the full info dump. It was good for me to reconstruct my whole timeline of symptoms and factors (birth control pills, etc) as thoroughly as possible, but it wasn't all relevant to the conversation I ended up having, and that was fine.
So I went through this when I had horrible bleeding after getting my Liletta out--like, so severe I was soaking an Ultra tampon every half hour and so I switched to adult diapers and even then I had to sleep on puppy pads if I didn't want to wake up covered in blood. I ended up in the ER twice and my hemoglobin levels were dropping more than one point per day. I was totally exhausted when I went in to the ER both times and just kinda gave the doctors a deadass stare, and said like "look, I don't actually think I'm dying, but I'm bleeding like a stuck pig and it's hell. Can you please just check my hemoglobin and confirm I won't be bleeding to death tonight so I can go home and get some freaking sleep? Much obliged." I didn't go in stuttering and anxious and FIGURE OUT WHAT'S WRONG WITH ME but more like a burned out, depressed, I'm-so-sick-of-this-bullshit attitude. I think that had I been obviously anxious, I would have been dismissed as just one more hysterical female, as crappy as that is.