Decades ago my father had cancer, and some medical professionals told him he shouldn't get radiation therapy because it might lead to infertility. But since he's a man, it didn't take him much effort to find a doctor who would give him radiation therapy. He ultimately recovered and, ironically, had kids.
I got a bilateral orchiectomy a few years ago. I'm a trans woman, so I faced substantially more gatekeeping than a cis man getting an orchie would face. The most eye-opening moment for me was when a representative from my insurance company said "Yes, we've seen enough evidence that you really need this treatment: we'll pay for almost all of it with a small co-pay," but the hospital staff kept saying (over MyChart) "we don't believe you really need this, so you aren't even allowed to schedule a consultation appointment."
The doctors put more gatekeeping on a *consultation appointment* than a freaking insurance company put on paying for the entire surgery.
I also like to draw comparisons to my cat. She was spayed when she was fairly young and had no children (that we know of). She did not have any serious health complications that required spaying. She did not receive two letters of readiness from psychiatrists asserting that she should be allowed to get spayed. Yet, she was allowed to do it. We give cat guardians more control over their cats' bodies than women and queer people have over our *own* bodies.
I’m so sorry to hear of what you went through - but you raise important points. The lack of control and agency given to women and queer individuals is a systemic and serious problem. I’m not sure how to change things… other than to keep sharing stories and shining light on it.
I also think it’s important for those of us who’ve had these procedures and not regretted them to be willing to share that we reached middle age without regret. Just so young people know that it’s OK to be confident in your choices - not everyone has to follow the same path.
Thank you for sharing - especially given that you a “brood”! I sincerely appreciate it. I’m appalled that it’s 2024 and many people still see women solely as incubators - and see childless women as somehow “less than”. I’m hoping by sharing what I went through I can encourage people to think about this issue a bit differently and with more compassion for people who’s life path is different than their own.
Well said. Thank you for speaking up against medical misogyny. As a physician, a writer, and an intentionally child-free uterus owner, I am actively working and writing against the exact thing that labels women child-like, baby vessels, and in need of pain. Please know there are many feminist patient advocates out there! We must find a way to believe women, together. ✊✊
Thank you for sharing and commenting! It means so much to know there are doctors out there who are pushing back against this behaviour. We are not simply incubators - and it’s a perfectly reasonable choice to be child free.
It’s absolutely a reasonable choice to ask for fail safe birth control if pregnancy will put your life at risk. The years I spent fighting for my hysterectomy were some of the worst of my life because at no point did I feel like my survival was the primary goal. Procreation was. We must change that.
I'm so sorry, BBT. First, do no harm. That is the opening of the oath physicians take. I would quote that to them and say, "You are harming me by not listening to what I am saying and the decision I have made." I had to have a chat with my PCP, whom I adore, but she is young and has to follow the rules. I requested a CA-125 test, the blood test that can show a sign of ovarian cancer, to be put in with my other blood work before my physical. She kiboshed it. So, when I met with her for my physical, I explained that, while I (thankfully) don't have the BRCA gene, I did use talcum baby powder until my early 20s when we first heard that, oh yeah, that can cause cancer (this is after being dusted with it several times a day as infants/toddlers). I reminded her that there is no mammogram equivalent for our ovaries and, in all the time we've had on this planet, that dodgy blood test is the best we've got to catch it early. She agreed, this time, but said we can't do it every time. Oh, really? Well, I'll just ask my GYN, who will definitely do it, because GenX sticks together. I think they sleep-deprive doctors in medical school on purpose to brainwash them. Really. That's about all that makes sense. Thanks for sharing all of this. xo
First off - LOVE that you used the word kibosh. Love so very much!
it’s incredible the amount of harm that was done to me over that period - so few doctors were thinking about their oath. They were thinking about their own feelings about my fertility which should never have factored into things.
I hope in time as I write more about these struggles I can help guide others who are going through it so that they can have an easier time than I did!
Yes and thank you! I’ve seen a change. I have Kaiser and have noticed that the appointments are longer, they ask questions and want to listen…even if, sometimes, you have to address the matter another way. I also have to remember how overwhelmed doctors, nurses, hospital staff, etc., still are. COVID has never stopped. They’ve never gotten a break, and now get to deal with the wonderfulness of all the nutters who no longer believe in science. So I have compassion for them. I also have zero fux and will give them a piece of my mind (politely) to get my point across. I’m fortunate that I don’t have to fight with my insurance company, or my doctors (that much). I do remind them that medical science hasn’t studied women, so maybe listen to us, because we are not hysterical hypochondriacs. Anecdotal evidence matters, too. xo
This is awful and I hate that it doesn’t surprise me. This type of behavior, especially in such a serious situation, should never happen! I’m so sorry you had to fight so hard for something you clearly needed!
I remember going to a new male gyn for an ongoing issue when I was 21. He kept telling me that I’d seen him before and had an abortion. Even after I repeatedly said that I’d never seen him before and never been pregnant, he kept insisting that I was lying. I guess I must’ve looked like another of his patients, cause apparently all black women look alike. There were red flags everywhere.
I had told him during intake that I was gay and he later said the only way to fix the issue I was having was to stop having sex with women. Only sex with men would keep things healthy. He then proceeded to be very rough and hurt me during my internal exam. It was the first time I realized that I couldn’t trust doctors. Never saw a male GYN after that as well.
Oh Keisha I’m so sorry! That’s positively awful (misogynistic, homophobia and racist - he was the trifecta!). It’s terrifying how some doctors treat uterus owners. I wasn’t told that sex with men was the only healthy way - but I was repeatedly told that pregnancy would help fix my uterus (it wouldn’t). Just disgusting advice.
If you’re looking for an article to restore a bit of faith in medical professionals - Zed Zha just posted a beautiful article about pledging to trust women. Highly recommend! https://drzedzha.substack.com/p/i-pledge-to-trust-women
Yeah, that doctor was an all-in-one and it caught me completely off guard because prior to that, I’d only had really kind and caring doctors. There’s been wonderful and horrible medical treatment since then. It’s a crapshoot, but if I’ve learned that if I get the slightest vibe the doctor isn’t up to my standards, I never see them again and keep searching until I find someone I’m comfortable with.
Thank you for sharing that article! It was really good to read even though it was addressing more of the horribleness that’s out there. I know there are great doctors out, just wish it wasn’t so hard for many of us to find them.
It's so hard right now. Finding a good doctor is like uncovering a needle in a haystack. I'm in Canada so if you dislike the doctor you go back to the bottom of a VERY large pile and can easily wait 18 months to see another one. It's needlessly stressful.... and it makes you feel forced to accept unacceptable behaviour.
I want better for ALL of us. Hopefully one day we get there!
Eighteen months!! That’s crazy!! Not exactly the same, but I spent half the day today calling different offices because I need to see an endocrinologist as soon as possible and they were like “we’re scheduling for next year.” It has gotten ridiculous. What do you do when you need to be seen sooner? The only job of the hospital is to keep us alive, they don’t do much else. There are no options. I can totally understand accepting unacceptable behavior because some medical help is better than none…until a year has passed.
The wait times here are really getting out of control. It’s 2+ years for some specialists now… and many will only give you one follow up every 12 months. The rest of the time you have to manage via your GP or the ER. Not ideal. You definitely don’t have much leverage if you dislike your doctor.
If you need to be seen sooner you’re basically hooped and left with the ER. I had an urgent cardiac issue and WAS seen in the ER and I still couldn’t get an appointment. It’s so frustrating. I’m sure it varies across the country and depending how rare your condition is… but I’ve NEVER had a specialist where I could be seen within a 2-3 month window. Ever.
I'm guessing you're considerably younger than I am (67) because most of the world is. I had a tubal ligation at 30, and they gave me a hard time, but eventually agreed because I was an out of control drunk and drug addict who got pregnant despite the Pill and the IUD and they worried about what kind of mother I'd be. I did too, which is why I wanted to make sure I'd never be a mother. I've never regretted that decision, but I did have to put up with my (male) gynecologist telling me that I was "the youngest woman he ever performed that procedure on" for the next twenty years, until I left him for a (female) gyn that focused on post-menopausal women. Today, all my doctors are women, most of them past child-bearing age. I'm so sorry you had to fight, literally, to not risk your life. Sometimes, I just want to bash them all in the face.🩵💙 It also reminds me of how the hordes are "anti-abortion" and "Pro-Life" but don't believe in any help for unwed mothers or mothers under the poverty line. That's not pro-life, that's manipulation and oppression. Bash.
I am younger - and I was younger when I had the surgery as well (24). I also had to put up with my surgeon saying I was the youngest woman she had performed it on! She cried at the first post-op visit and I was gobsmacked. I felt like screaming “I’ve needed this surgery for years! If I’m going to cry it’ll be tears of joy!” Instead I sat quietly and nodded and comforted HER - and then found another doctor.
I also would have been unfit to parent due to my health issues - and it struck me as very odd that they never cared about that. I guess maybe they figured I would give the baby up for adoption… but still it seems wildly inappropriate to force a woman to keep a sick and diseased organ inside her if she doesn’t want it!
Just before I was diagnosed with lupus in my central nervous system, I was seeing a male pcp. He didn’t have a medical diagnosis for all the weird and ongoing symptoms I had. One day he took my hand and told me I needed to get pregnant. He told me it was “natural “ for women to be childbearing and my symptoms were due to my unhappiness of not being pregnant. I was shocked and humiliated. I never went back.
That’s terrible! I’m so sorry. I encountered that as well. Doctors actually told me if I just got pregnant my uterus would “get better because that’s the natural way.”
Of course there’s absolutely no scientific data to back that statement up - and knowing what I now know about my health issues I almost certainly would have died in childbirth.
Thank you for another vulnerable yet so revealing and brave article. It's heartbreaking and enraging that your freedom to choose and your rights as a human were overpowered. Devaluing individuals for any reason is inhumane.
Bearing witness, sitting in pain with you, stoking the fire in my belly with the rage of it all.
It really is. The fact that I was left in that state for three years - with no quality of life and getting sicker and sicker - never stops making me sad and angry. They only did the surgery when it was obvious I would die without it - and they botched it AND dismissed my concerns about my post op bleed. We have so much work to do at believing patients… especially if they’re disabled, marginalized, women, POC etc.
Thank you!! What’s worse is for the last year or so it was obvious it shouldn’t have even been a “choice”… it NEEDED to come out. I was having regular iron infusions and blood transfusions and still constantly in the hospital. Unless I was begging them NOT to remove it (in the hopes I could get better and have kids) they had no business forcing me to keep it in my body when it meant I was that sick.
I only had the surgery at the young age I was because I was dying on the table. It should never be like that.
I'm glad they listened to your boyfriend (?!?!?) and gave you the medical assistance you always knew you needed. Of course you've lost trust in the system, so many years of terrible advice. And we're brainwashed into believing the "experts" over our own feelings.
Advocates are such a blessing! If you can't get someone to go with you, record the visit on your phone. Play it back, it's often a lot of info and no one can remember everything. Play it for others if you feel you're being dismissed. Ask lots of questions if you have them.
He was livid (still is - we aren’t together but we stay in touch). I remember he finally said “stop asking what I want and help HER. She’s the only one who should get a say!”
The fact that a 22 year old kid (he really was just a big manchild) understood how absurd this was and the doctors didn’t has never stopped being horrifying to me.
Completely agree with you about advocates - I wrote an entire article about how to be a good advocate and one of the things I included was recording the conversation if you’re alone. Even video calling a friend can make a huge difference.
Wow! I am so sorry you had to go through all of this! As if dealing with awful health conditions isn't enough already without adding in such attitudes xx
Thank you!!! What’s sad is how common these types of issues are …. They happen to far too many women and I hope by sharing my story I empower others to speak up.
Yes we really do, I've had similar attitudes, actually mine was the other way, wanting to give me a hysterectomy (I had 2 children but it was possible I might have a 3rd) and they couldn't see why I wouldn't have a hysterectomy when actually there was a good chance that it wouldn't solve the problems I had and that major surgery would have a massive impact on my chronic illness.
That’s so frustrating! Did you end up having it? It’s incredible how many doctors feel like they have the right to make decisions about OUR reproductive organs - instead of trusting us to decide for ourselves.
No, I stuck it out knowing how much it would impact me if I had the surgery. Easier to say no to surgery than get it if they don't want you to have it.
It’s such a major surgery - I definitely wouldn’t do it unless there were good odds it would make a difference. I’ve dealt with so many issues after mine - they’re probably worth a whole other post!
Oh I'm sorry to hear that, I'd had a minor gynae op previously and that really knocked me and left me with ongoing complications so I was pretty definite. Though I also had extremely heavy bleeding and adenomyosis and perimenopause has been pretty grim and I can't take HRT, it is pretty hard to win isn't it! It really would be a different story if men were dealing with all these things!
I had to stop lurking in those forums because they were horrifying.
I completely agree with you that we don’t really get closure after something like this. In my case the surgery was so rushed that I didn’t even have helped lined up afterwards - and then I had a severe post operative complication that they of course also dismissed. I had to go to the ER four times before they found it … and then I was rushed for another surgery and spent nearly a month in hospital recovering.
In all that time I never heard “I’m sorry”. Except from ONE intern who seemed to feel genuinely bad about how I had been treated even though it was in no way her fault. She even said “I’m not supposed to say this - but I’m so sorry.”
I’ve never forgotten her face. That ONE moment meant the world to me - and the fact that my care was bungled so badly and no one else showed any compassion has left a mark on me that may never go away.
Wait, WHAT?! Kelly had a hysterectomy at 24 because she was bleeding to death. She was dying, and now can’t have kids even if she wanted them, you’re upset because you like your own child and “don’t want to read about her problems”?
You can quietly unsubscribe without being rude in someone’s comments, you know.
Wow, what a strange and over the top reply. Two people can have different experiences, for starters. But moreover the medical industry IS documented to favour men and discriminate against women in a myriad of way, including with study design and medication roll out. Doing Harm is a great book if you were interested in reading more, which I doubt you are.
I’m disabled myself, so ditto on the “hope you never have to go through” what I have.
Maybe take your own advice though? You too can read something you don’t like without having to always throw your two cents in. You are crapping on someone’s post that took bravery to share. If you don’t want to hear from her, hit unsubscribe. No need to be a dick about it.
That you Jodi! I think posts like these underscore how important it is that we share our stories. People think because THEY had a good experience with healthcare or disability accommodation that it’s that way for everyone. When in reality misogyny in medicine is more common than not - and multiple marginalized people often suffer the worst of it.
We need to shine light on these issues so people will understand and hopefully help us fight for change!
Thank you for telling this story!
Decades ago my father had cancer, and some medical professionals told him he shouldn't get radiation therapy because it might lead to infertility. But since he's a man, it didn't take him much effort to find a doctor who would give him radiation therapy. He ultimately recovered and, ironically, had kids.
I got a bilateral orchiectomy a few years ago. I'm a trans woman, so I faced substantially more gatekeeping than a cis man getting an orchie would face. The most eye-opening moment for me was when a representative from my insurance company said "Yes, we've seen enough evidence that you really need this treatment: we'll pay for almost all of it with a small co-pay," but the hospital staff kept saying (over MyChart) "we don't believe you really need this, so you aren't even allowed to schedule a consultation appointment."
The doctors put more gatekeeping on a *consultation appointment* than a freaking insurance company put on paying for the entire surgery.
I also like to draw comparisons to my cat. She was spayed when she was fairly young and had no children (that we know of). She did not have any serious health complications that required spaying. She did not receive two letters of readiness from psychiatrists asserting that she should be allowed to get spayed. Yet, she was allowed to do it. We give cat guardians more control over their cats' bodies than women and queer people have over our *own* bodies.
I’m so sorry to hear of what you went through - but you raise important points. The lack of control and agency given to women and queer individuals is a systemic and serious problem. I’m not sure how to change things… other than to keep sharing stories and shining light on it.
I also think it’s important for those of us who’ve had these procedures and not regretted them to be willing to share that we reached middle age without regret. Just so young people know that it’s OK to be confident in your choices - not everyone has to follow the same path.
Bravo for your stand for yourself. Your insistence to articulate what is right for you against profound medical misogyny is no mean feat. 🎉
->The ridiculous idea that motherhood is the pinnacle of all women’s lives needs smashing.
(I say this as someone who birthed a brood of kids)
We are ‘able to reason’ (to be reasonable) for ourselves.
Thank you for sharing - especially given that you a “brood”! I sincerely appreciate it. I’m appalled that it’s 2024 and many people still see women solely as incubators - and see childless women as somehow “less than”. I’m hoping by sharing what I went through I can encourage people to think about this issue a bit differently and with more compassion for people who’s life path is different than their own.
Well said. Thank you for speaking up against medical misogyny. As a physician, a writer, and an intentionally child-free uterus owner, I am actively working and writing against the exact thing that labels women child-like, baby vessels, and in need of pain. Please know there are many feminist patient advocates out there! We must find a way to believe women, together. ✊✊
Thank you for sharing and commenting! It means so much to know there are doctors out there who are pushing back against this behaviour. We are not simply incubators - and it’s a perfectly reasonable choice to be child free.
It’s absolutely a reasonable choice to ask for fail safe birth control if pregnancy will put your life at risk. The years I spent fighting for my hysterectomy were some of the worst of my life because at no point did I feel like my survival was the primary goal. Procreation was. We must change that.
We should chat about guest posting!! (If you are up for it, that i!)
I would definitely be up for it! I think a patient/doctor combo could be a fascinating read!
I'm so sorry, BBT. First, do no harm. That is the opening of the oath physicians take. I would quote that to them and say, "You are harming me by not listening to what I am saying and the decision I have made." I had to have a chat with my PCP, whom I adore, but she is young and has to follow the rules. I requested a CA-125 test, the blood test that can show a sign of ovarian cancer, to be put in with my other blood work before my physical. She kiboshed it. So, when I met with her for my physical, I explained that, while I (thankfully) don't have the BRCA gene, I did use talcum baby powder until my early 20s when we first heard that, oh yeah, that can cause cancer (this is after being dusted with it several times a day as infants/toddlers). I reminded her that there is no mammogram equivalent for our ovaries and, in all the time we've had on this planet, that dodgy blood test is the best we've got to catch it early. She agreed, this time, but said we can't do it every time. Oh, really? Well, I'll just ask my GYN, who will definitely do it, because GenX sticks together. I think they sleep-deprive doctors in medical school on purpose to brainwash them. Really. That's about all that makes sense. Thanks for sharing all of this. xo
First off - LOVE that you used the word kibosh. Love so very much!
it’s incredible the amount of harm that was done to me over that period - so few doctors were thinking about their oath. They were thinking about their own feelings about my fertility which should never have factored into things.
I hope in time as I write more about these struggles I can help guide others who are going through it so that they can have an easier time than I did!
Yes and thank you! I’ve seen a change. I have Kaiser and have noticed that the appointments are longer, they ask questions and want to listen…even if, sometimes, you have to address the matter another way. I also have to remember how overwhelmed doctors, nurses, hospital staff, etc., still are. COVID has never stopped. They’ve never gotten a break, and now get to deal with the wonderfulness of all the nutters who no longer believe in science. So I have compassion for them. I also have zero fux and will give them a piece of my mind (politely) to get my point across. I’m fortunate that I don’t have to fight with my insurance company, or my doctors (that much). I do remind them that medical science hasn’t studied women, so maybe listen to us, because we are not hysterical hypochondriacs. Anecdotal evidence matters, too. xo
This is awful and I hate that it doesn’t surprise me. This type of behavior, especially in such a serious situation, should never happen! I’m so sorry you had to fight so hard for something you clearly needed!
I remember going to a new male gyn for an ongoing issue when I was 21. He kept telling me that I’d seen him before and had an abortion. Even after I repeatedly said that I’d never seen him before and never been pregnant, he kept insisting that I was lying. I guess I must’ve looked like another of his patients, cause apparently all black women look alike. There were red flags everywhere.
I had told him during intake that I was gay and he later said the only way to fix the issue I was having was to stop having sex with women. Only sex with men would keep things healthy. He then proceeded to be very rough and hurt me during my internal exam. It was the first time I realized that I couldn’t trust doctors. Never saw a male GYN after that as well.
Oh Keisha I’m so sorry! That’s positively awful (misogynistic, homophobia and racist - he was the trifecta!). It’s terrifying how some doctors treat uterus owners. I wasn’t told that sex with men was the only healthy way - but I was repeatedly told that pregnancy would help fix my uterus (it wouldn’t). Just disgusting advice.
If you’re looking for an article to restore a bit of faith in medical professionals - Zed Zha just posted a beautiful article about pledging to trust women. Highly recommend! https://drzedzha.substack.com/p/i-pledge-to-trust-women
Yeah, that doctor was an all-in-one and it caught me completely off guard because prior to that, I’d only had really kind and caring doctors. There’s been wonderful and horrible medical treatment since then. It’s a crapshoot, but if I’ve learned that if I get the slightest vibe the doctor isn’t up to my standards, I never see them again and keep searching until I find someone I’m comfortable with.
Thank you for sharing that article! It was really good to read even though it was addressing more of the horribleness that’s out there. I know there are great doctors out, just wish it wasn’t so hard for many of us to find them.
It's so hard right now. Finding a good doctor is like uncovering a needle in a haystack. I'm in Canada so if you dislike the doctor you go back to the bottom of a VERY large pile and can easily wait 18 months to see another one. It's needlessly stressful.... and it makes you feel forced to accept unacceptable behaviour.
I want better for ALL of us. Hopefully one day we get there!
Eighteen months!! That’s crazy!! Not exactly the same, but I spent half the day today calling different offices because I need to see an endocrinologist as soon as possible and they were like “we’re scheduling for next year.” It has gotten ridiculous. What do you do when you need to be seen sooner? The only job of the hospital is to keep us alive, they don’t do much else. There are no options. I can totally understand accepting unacceptable behavior because some medical help is better than none…until a year has passed.
The wait times here are really getting out of control. It’s 2+ years for some specialists now… and many will only give you one follow up every 12 months. The rest of the time you have to manage via your GP or the ER. Not ideal. You definitely don’t have much leverage if you dislike your doctor.
If you need to be seen sooner you’re basically hooped and left with the ER. I had an urgent cardiac issue and WAS seen in the ER and I still couldn’t get an appointment. It’s so frustrating. I’m sure it varies across the country and depending how rare your condition is… but I’ve NEVER had a specialist where I could be seen within a 2-3 month window. Ever.
Wow. That's is so unacceptable! I'm so sorry!! It makes me really sad to learn how bad the health system is no matter where you are.
I'm guessing you're considerably younger than I am (67) because most of the world is. I had a tubal ligation at 30, and they gave me a hard time, but eventually agreed because I was an out of control drunk and drug addict who got pregnant despite the Pill and the IUD and they worried about what kind of mother I'd be. I did too, which is why I wanted to make sure I'd never be a mother. I've never regretted that decision, but I did have to put up with my (male) gynecologist telling me that I was "the youngest woman he ever performed that procedure on" for the next twenty years, until I left him for a (female) gyn that focused on post-menopausal women. Today, all my doctors are women, most of them past child-bearing age. I'm so sorry you had to fight, literally, to not risk your life. Sometimes, I just want to bash them all in the face.🩵💙 It also reminds me of how the hordes are "anti-abortion" and "Pro-Life" but don't believe in any help for unwed mothers or mothers under the poverty line. That's not pro-life, that's manipulation and oppression. Bash.
I am younger - and I was younger when I had the surgery as well (24). I also had to put up with my surgeon saying I was the youngest woman she had performed it on! She cried at the first post-op visit and I was gobsmacked. I felt like screaming “I’ve needed this surgery for years! If I’m going to cry it’ll be tears of joy!” Instead I sat quietly and nodded and comforted HER - and then found another doctor.
I also would have been unfit to parent due to my health issues - and it struck me as very odd that they never cared about that. I guess maybe they figured I would give the baby up for adoption… but still it seems wildly inappropriate to force a woman to keep a sick and diseased organ inside her if she doesn’t want it!
Agreed. 100%.
Just before I was diagnosed with lupus in my central nervous system, I was seeing a male pcp. He didn’t have a medical diagnosis for all the weird and ongoing symptoms I had. One day he took my hand and told me I needed to get pregnant. He told me it was “natural “ for women to be childbearing and my symptoms were due to my unhappiness of not being pregnant. I was shocked and humiliated. I never went back.
That’s terrible! I’m so sorry. I encountered that as well. Doctors actually told me if I just got pregnant my uterus would “get better because that’s the natural way.”
Of course there’s absolutely no scientific data to back that statement up - and knowing what I now know about my health issues I almost certainly would have died in childbirth.
I never went back to those doctors either.
Thank you for another vulnerable yet so revealing and brave article. It's heartbreaking and enraging that your freedom to choose and your rights as a human were overpowered. Devaluing individuals for any reason is inhumane.
Bearing witness, sitting in pain with you, stoking the fire in my belly with the rage of it all.
It really is. The fact that I was left in that state for three years - with no quality of life and getting sicker and sicker - never stops making me sad and angry. They only did the surgery when it was obvious I would die without it - and they botched it AND dismissed my concerns about my post op bleed. We have so much work to do at believing patients… especially if they’re disabled, marginalized, women, POC etc.
Right there with you, in the sad and angry of it all. xo
This is absolutely shocking! How dare they not allow you to make that decision for yourself and support you in it.
Thank you!! What’s worse is for the last year or so it was obvious it shouldn’t have even been a “choice”… it NEEDED to come out. I was having regular iron infusions and blood transfusions and still constantly in the hospital. Unless I was begging them NOT to remove it (in the hopes I could get better and have kids) they had no business forcing me to keep it in my body when it meant I was that sick.
I only had the surgery at the young age I was because I was dying on the table. It should never be like that.
I'm glad they listened to your boyfriend (?!?!?) and gave you the medical assistance you always knew you needed. Of course you've lost trust in the system, so many years of terrible advice. And we're brainwashed into believing the "experts" over our own feelings.
Advocates are such a blessing! If you can't get someone to go with you, record the visit on your phone. Play it back, it's often a lot of info and no one can remember everything. Play it for others if you feel you're being dismissed. Ask lots of questions if you have them.
He was livid (still is - we aren’t together but we stay in touch). I remember he finally said “stop asking what I want and help HER. She’s the only one who should get a say!”
The fact that a 22 year old kid (he really was just a big manchild) understood how absurd this was and the doctors didn’t has never stopped being horrifying to me.
Completely agree with you about advocates - I wrote an entire article about how to be a good advocate and one of the things I included was recording the conversation if you’re alone. Even video calling a friend can make a huge difference.
I'm sorry you had to go through all that, and so young too. Thanks for sharing your stories with us.
Thank you - and thank you for reading!
Wow! I am so sorry you had to go through all of this! As if dealing with awful health conditions isn't enough already without adding in such attitudes xx
Thank you!!! What’s sad is how common these types of issues are …. They happen to far too many women and I hope by sharing my story I empower others to speak up.
Yes we really do, I've had similar attitudes, actually mine was the other way, wanting to give me a hysterectomy (I had 2 children but it was possible I might have a 3rd) and they couldn't see why I wouldn't have a hysterectomy when actually there was a good chance that it wouldn't solve the problems I had and that major surgery would have a massive impact on my chronic illness.
That’s so frustrating! Did you end up having it? It’s incredible how many doctors feel like they have the right to make decisions about OUR reproductive organs - instead of trusting us to decide for ourselves.
No, I stuck it out knowing how much it would impact me if I had the surgery. Easier to say no to surgery than get it if they don't want you to have it.
It’s such a major surgery - I definitely wouldn’t do it unless there were good odds it would make a difference. I’ve dealt with so many issues after mine - they’re probably worth a whole other post!
Oh I'm sorry to hear that, I'd had a minor gynae op previously and that really knocked me and left me with ongoing complications so I was pretty definite. Though I also had extremely heavy bleeding and adenomyosis and perimenopause has been pretty grim and I can't take HRT, it is pretty hard to win isn't it! It really would be a different story if men were dealing with all these things!
I had to stop lurking in those forums because they were horrifying.
I completely agree with you that we don’t really get closure after something like this. In my case the surgery was so rushed that I didn’t even have helped lined up afterwards - and then I had a severe post operative complication that they of course also dismissed. I had to go to the ER four times before they found it … and then I was rushed for another surgery and spent nearly a month in hospital recovering.
In all that time I never heard “I’m sorry”. Except from ONE intern who seemed to feel genuinely bad about how I had been treated even though it was in no way her fault. She even said “I’m not supposed to say this - but I’m so sorry.”
I’ve never forgotten her face. That ONE moment meant the world to me - and the fact that my care was bungled so badly and no one else showed any compassion has left a mark on me that may never go away.
Wait, WHAT?! Kelly had a hysterectomy at 24 because she was bleeding to death. She was dying, and now can’t have kids even if she wanted them, you’re upset because you like your own child and “don’t want to read about her problems”?
You can quietly unsubscribe without being rude in someone’s comments, you know.
Wow, what a strange and over the top reply. Two people can have different experiences, for starters. But moreover the medical industry IS documented to favour men and discriminate against women in a myriad of way, including with study design and medication roll out. Doing Harm is a great book if you were interested in reading more, which I doubt you are.
I’m disabled myself, so ditto on the “hope you never have to go through” what I have.
Maybe take your own advice though? You too can read something you don’t like without having to always throw your two cents in. You are crapping on someone’s post that took bravery to share. If you don’t want to hear from her, hit unsubscribe. No need to be a dick about it.
That you Jodi! I think posts like these underscore how important it is that we share our stories. People think because THEY had a good experience with healthcare or disability accommodation that it’s that way for everyone. When in reality misogyny in medicine is more common than not - and multiple marginalized people often suffer the worst of it.
We need to shine light on these issues so people will understand and hopefully help us fight for change!