"But surgeons are encouraged to burn the cells rather than cut them out because it’s a simpler procedure—and they can only charge insurers for the cost of ablation. If patients want excision, they almost always have to go out of network. “The unfortunate reality is that not enough patients are offered surgery who would benefit from surgery,” Dr. Melissa McHale, a Maryland-based gynecologic surgeon specializing in endometriosis excision, said. She added that there are not enough “skilled and willing surgeons” to perform the procedure."
The dynamic is the same in some areas of cancer care, for both men and women. If an individual's physician can't provide and has a good faith belief that a type of treatment isn't an improvement over what they can offer (and private insurance won't cover it anyway), they may not tell the patient that it's an option and may even downplay its benefits or exaggerate safety concerns if asked about it (based on their good faith, head in the sand beliefs). It's tragic that people have to figure out treatment options themselves via social media. I think the underlying problem could be as much about money and inter-physician and hospital politics, as gender bias.
Absolutely. When hospitals’ priority is making money—even if the priority is ALSO patient care, but money is tangled up with it—you’re going to have problems.
I love that you wrote about this. I honestly get more medical support and empathy from my acupuncturist then any of my western trained medical doctors and that has me really questioning our entire medical landscape lately.
What really lights a fire under me is that this doesn’t just happen with diseases that primarily or only affect women (which is bad enough), but with literally any disease that a woman could possibly have- even one that is gender-indiscriminate. I was in my early 20s, and was about 99% sure I had Lyme Disease. I had had a recent tick bite, was working at a summer camp where 10 other people had gotten Lymes that summer, and felt like I had been hit by a train. After speaking to the (female) resident at the campus health center for about 3 minutes, she said, “Yep, sounds like Lyme Disease! I’d like to order a test, but just let me check with my attending.” In walks the (male) attending, who says that he disagrees with my assessment of the situation and the resident’s, and needs me to “convince him” that I have Lyme Disease. He goes on to say he gets a lot of people- “especially young women” - who come to him at this time of year with “this ache” and “this pain” and really, “it’s just anxiety.” I remember shaking because I was so mad and afraid to contradict him, but thank goodness I did because two positive Lyme tests, 14 days, and one round of Doxycycline later, I felt a whole lot better 🙄 Women should not have to fight to be taken seriously by the people who are supposed to take care of them.
Caroline, that’s wild. I’m so sorry, and I’m glad you advocated for yourself! My mom got Lyme last year and it was ROUGH. I’d never seen anything like it in terms of the fatigue.
I miscarried our honeymoon baby and armed with my chart and prompts from our creighton provider I was told by a female GP I “knew too much” about my body and it was all in my head. I had just moved to Canada and no one here was going to listen to me. Thankfully I still had a US employer and great gealth insurance so we could travel to Omaha twice for 3 surgeries total. The excision surgery was 10 hours (stage 4 endo-not all in my head) My employer health insurance covered all of my expenses. (My EOBs were over $100,000). We now have two little boys but I need meds to stay pregnant and I’m dreading explaining to my new doctor the situation so maybe she can continue my previous prescriptions so we can try and get pregnant again.
My mom had a bowel obstruction and the general surgeon noticed “white stuff” everywhere 🙄.
Hopefully the more women talk about this the medical institutions might actually look to what is going on with our hormones and uterus’s.
Thank you. I just have realized fertility is not a sign of health in mainstream medicine. Therefore infertility/hormone imbalances isn’t something to heal. When I see the people in my life who get pregnant so easy and carry a baby to term with no complication, it’s just so crazy to me how that’s how it’s supposed to work. Meanwhile our culture tells us if you have more than 2 kids and don’t let your uterus “heal” your doing it wrong. My mantra in the hight of my medical stuff was just to heal my body and figure my hormones out because that’s what a healthy body would do.
I have been personally affected by this from the angle of endometriosis. It took me several years and multiple doctors. And the doctor who finally did my exploratory surgery removed my ovarian cysts, then closed me up without excising the endometriosis lesions, and promptly told me to find a “liberal priest” who could tell me that IVF was fine because that was my only option. My most recent surgery was done by a Catholic surgeon who finally took the time to do a 7 hour robotic excision surgery, but by this time my Fallopian tubes were scarred closed. I most likely would have had a better outcome if my diagnosis had come years earlier. Endometriosis needs to be better researched. The only definitive way to diagnose it is by doing surgery. By the time you get to that point where someone is willing to cut you open, lots of damage could have been done. It is so incredibly frustrating.
Thank you for sharing your story. I am so, so sorry that happened to you. I completely agree...good doctors should try to find the root cause. I don't have first-hand knowledge of this, but anecdotally I feel like much of it has to do with how many patients they're trying to get through in a day. Hospitals put pressure on them for the $$ to hustle, hustle, hustle through patients...it takes so much time to get a holistic view of someone's health.
Well, dang, does this hit close to home right now, or should I say to my uterus, which we've finally decided will be leaving my body in the near future. And why? Because at least 50% of the time the cause of early menopause is unknown so there's no way to stop it. The answer in women's healthcare will give me primary infertility because no one knows why my uterus continuously bleeds. None of my options have been good and many of the opinions thrown at me (including that what I really need are psych meds to make me feel happier about neverending periods) have been downright bad. Ok, personal rant to the side, thank you, thank you, thank you for this.
I just love how you walk confidently through the gray areas. Love that you never land on a “side.” It’s how I’m trying to think about more issues, too. Shockingly, feminism is not a black and white designation. It’s not like one position is the “feminist” position, because the issues affecting women are so nuanced. Our society is just not trained to think this way.
"But surgeons are encouraged to burn the cells rather than cut them out because it’s a simpler procedure—and they can only charge insurers for the cost of ablation. If patients want excision, they almost always have to go out of network. “The unfortunate reality is that not enough patients are offered surgery who would benefit from surgery,” Dr. Melissa McHale, a Maryland-based gynecologic surgeon specializing in endometriosis excision, said. She added that there are not enough “skilled and willing surgeons” to perform the procedure."
The dynamic is the same in some areas of cancer care, for both men and women. If an individual's physician can't provide and has a good faith belief that a type of treatment isn't an improvement over what they can offer (and private insurance won't cover it anyway), they may not tell the patient that it's an option and may even downplay its benefits or exaggerate safety concerns if asked about it (based on their good faith, head in the sand beliefs). It's tragic that people have to figure out treatment options themselves via social media. I think the underlying problem could be as much about money and inter-physician and hospital politics, as gender bias.
Absolutely. When hospitals’ priority is making money—even if the priority is ALSO patient care, but money is tangled up with it—you’re going to have problems.
This is SO IMPORTANT. thank you for writing it.
Went right along with this disturbing story from the free press this week about a woman who struggled to get diagnosed with endometriosis --
https://open.substack.com/pub/bariweiss/p/i-wasnt-hysterical-i-was-sick?utm_source=share&utm_medium=android&r=e7zgp
I saw that!!!
I love that you wrote about this. I honestly get more medical support and empathy from my acupuncturist then any of my western trained medical doctors and that has me really questioning our entire medical landscape lately.
What really lights a fire under me is that this doesn’t just happen with diseases that primarily or only affect women (which is bad enough), but with literally any disease that a woman could possibly have- even one that is gender-indiscriminate. I was in my early 20s, and was about 99% sure I had Lyme Disease. I had had a recent tick bite, was working at a summer camp where 10 other people had gotten Lymes that summer, and felt like I had been hit by a train. After speaking to the (female) resident at the campus health center for about 3 minutes, she said, “Yep, sounds like Lyme Disease! I’d like to order a test, but just let me check with my attending.” In walks the (male) attending, who says that he disagrees with my assessment of the situation and the resident’s, and needs me to “convince him” that I have Lyme Disease. He goes on to say he gets a lot of people- “especially young women” - who come to him at this time of year with “this ache” and “this pain” and really, “it’s just anxiety.” I remember shaking because I was so mad and afraid to contradict him, but thank goodness I did because two positive Lyme tests, 14 days, and one round of Doxycycline later, I felt a whole lot better 🙄 Women should not have to fight to be taken seriously by the people who are supposed to take care of them.
Caroline, that’s wild. I’m so sorry, and I’m glad you advocated for yourself! My mom got Lyme last year and it was ROUGH. I’d never seen anything like it in terms of the fatigue.
I miscarried our honeymoon baby and armed with my chart and prompts from our creighton provider I was told by a female GP I “knew too much” about my body and it was all in my head. I had just moved to Canada and no one here was going to listen to me. Thankfully I still had a US employer and great gealth insurance so we could travel to Omaha twice for 3 surgeries total. The excision surgery was 10 hours (stage 4 endo-not all in my head) My employer health insurance covered all of my expenses. (My EOBs were over $100,000). We now have two little boys but I need meds to stay pregnant and I’m dreading explaining to my new doctor the situation so maybe she can continue my previous prescriptions so we can try and get pregnant again.
My mom had a bowel obstruction and the general surgeon noticed “white stuff” everywhere 🙄.
Hopefully the more women talk about this the medical institutions might actually look to what is going on with our hormones and uterus’s.
I am so, so sorry.
Thank you. I just have realized fertility is not a sign of health in mainstream medicine. Therefore infertility/hormone imbalances isn’t something to heal. When I see the people in my life who get pregnant so easy and carry a baby to term with no complication, it’s just so crazy to me how that’s how it’s supposed to work. Meanwhile our culture tells us if you have more than 2 kids and don’t let your uterus “heal” your doing it wrong. My mantra in the hight of my medical stuff was just to heal my body and figure my hormones out because that’s what a healthy body would do.
I have been personally affected by this from the angle of endometriosis. It took me several years and multiple doctors. And the doctor who finally did my exploratory surgery removed my ovarian cysts, then closed me up without excising the endometriosis lesions, and promptly told me to find a “liberal priest” who could tell me that IVF was fine because that was my only option. My most recent surgery was done by a Catholic surgeon who finally took the time to do a 7 hour robotic excision surgery, but by this time my Fallopian tubes were scarred closed. I most likely would have had a better outcome if my diagnosis had come years earlier. Endometriosis needs to be better researched. The only definitive way to diagnose it is by doing surgery. By the time you get to that point where someone is willing to cut you open, lots of damage could have been done. It is so incredibly frustrating.
Thank you for sharing your story. I am so, so sorry that happened to you. I completely agree...good doctors should try to find the root cause. I don't have first-hand knowledge of this, but anecdotally I feel like much of it has to do with how many patients they're trying to get through in a day. Hospitals put pressure on them for the $$ to hustle, hustle, hustle through patients...it takes so much time to get a holistic view of someone's health.
I should add...I am an RN myself. And I still got sub-par women’s healthcare 😂😢
A good doctor will try to find the root cause behind your problem instead of putting a band-aid on the problem and making assumptions.
Well, dang, does this hit close to home right now, or should I say to my uterus, which we've finally decided will be leaving my body in the near future. And why? Because at least 50% of the time the cause of early menopause is unknown so there's no way to stop it. The answer in women's healthcare will give me primary infertility because no one knows why my uterus continuously bleeds. None of my options have been good and many of the opinions thrown at me (including that what I really need are psych meds to make me feel happier about neverending periods) have been downright bad. Ok, personal rant to the side, thank you, thank you, thank you for this.
Oh, Missy! I will be praying for you. I didn't know that about early menopause!
Here's one source for that 50% statistic (finding it made me feel like I wasn't alone): https://my.clevelandclinic.org/health/diseases/21138-premature-and-early-menopause
I just love how you walk confidently through the gray areas. Love that you never land on a “side.” It’s how I’m trying to think about more issues, too. Shockingly, feminism is not a black and white designation. It’s not like one position is the “feminist” position, because the issues affecting women are so nuanced. Our society is just not trained to think this way.
👏👏👏
Just here to say I appreciate the footnotes feature so much. I love that you cite your sources.
It's the nerd in me. 🤓 The footnotes feature is one of the best things about Substack, IMHO!
I love the citations too. I feel it’s so important to be able to get as close to the primary source for things as possible. Thank you!