I had to go through years of try this, try that. Following the medical guidelines that were put in place to make us feel like something was being done. In reality, I think it was just to quiet our questioning. Bleeding so heavy tampons plus a pad couldn’t hold it. Clots that were the size of my hand. Finally, the doctor recommended a hysterectomy and when I say I’d like a second opinion, he comes back with “Do you want to end up with cancer like your mother and grandmother?” Like this whole thing was MY fault! After surgery, he tells me my uterus was over ten times bigger than it should have been - full of fibrous tumors. Made it sound like I deserved a trophy😡
I’m so sorry you had to go through this and so grateful you shared it here. Your story captures something so many women have lived through: being dismissed, blamed, and made to feel like their pain was their fault. If you're open to it, I’d love to include your experience in my book it says so much about the systemic failures we are taught to accept as routine care. With deep respect and thank you so much for your voice, Maryann
Sad, and true wrt so-called women’s pain dismissed as madness or hysterical attention seeking behaviour. What absolute poppycock! What hypocrisy! That a beautiful and talented woman at the top of her game like Venus Williams could be so much as disrespected by “top”
doctors comes as a revelation of horror to me.
However, it’s no surprise, sadly. As an ex-hospital employee, I saw plenty of eating disorder patients: bulimia nervosa, and anorexia nervosa and exercise obsessive compulsive disorder sufferers and so called psychiatric cases who were actually Young beautiful women of all colours and backgrounds and shapes and textures who were crippled by their pain.
Now when I look back I know that my intuition and wisdom weren’t misplaced, these were women in indescribable pain, they were not malingerers or fakes or crazy.
Thank you, Carol Ann. Your perspective is powerful and heartbreaking. You’re right: so many women were never “hysterical”….just hurting. And dismissed.
I was in pain for 7 years before my doctors would even consider a hysterectomy (because I was "old" enough). Meanwhile, I kept trying to function as normal as a runner, wife, lawyer, with times when the pain was too much.
Thank you for sharing this. You shouldn’t have had to suffer that long just to be taken seriously. Stories like yours are why I keep writing and why change is overdue. 🙏🏽
Thanks so much for writing this and raising awareness. It's really interesting to see this story told from the finance perspective, too.
I spent a day in A&E (UK's ER) yesterday with kidney stones... I was given morphine, but more than that I was given compassion and sympathy. I was told kidney stones are "the worst pain, worse than childbirth". I haven't given birth, but I *have* had endometriosis for years, and two rounds of surgery for it. I got quicker, more respectful care and was given way stronger painkillers for a temporary, acute condition (kidney stones) than I've ever had for the appalling cyclical pain from endometriosis that floors me monthly. And while this galls me, I'm aware that being white I'm probably still getting better pain relief and gynaecological care than Black and Brown women coming in with the same issues...
Thank you for sharing this so openly, Gemma. Your experience powerfully underscores the double standards not just in pain management but in whose pain is believed, prioritized, and treated. And yes, the racial disparities in gynaecological care make this even more urgent. I’m grateful you brought this lens into the conversation. It’s exactly why we need a capital system that funds what the system still ignores.
Thank you for highlighting this. 11% of women suffer from lipedema, a connective tissue disorder leading to lymphatic dysfunction and the build-up of diseased, fibrotic fat in the lower body. This understudied condition can impair mobility, cause chronic fatigue and pain and lead to disfigurement. Yet, most doctors cannot diagnose it because it is a ‘women’s disease’ that does not get talked about. Many women suffer in silence and do not get a diagnosis until the disease has progressed severely.
Thank you, Rabbi Esther, for bringing lipedema into this conversation. I wasn’t aware of the 11% figure and you’re right, it’s a striking example of how underdiagnosis and dismissal still shape so much of women’s health. I’m grateful for the link and will absolutely look into this further.
Thank you so much! Please don’t hesitate to reach out if I can be helpful in any way. And thank you for your research and advocacy - it is so important.
Thank you so much for putting this awful struggle into words. Thank you for researching and putting this on a public platform so people can share and discuss this issue.
Hello I am struggling to find your email address. Suffering from an unusual medical complaint, I am often gaslighted and have spent eight years looking for the still elusive cure.
I just want to say to you Maryann: Thank you. Thank you for writing these posts that shed light on problems that we didn’t even know existed. Your writing, passion and dedication towards the mission for a better healthcare for women is making me more eager to pursue medicine and to learn about the business aspect of it. I want to be part of this movement. I want to help as much as I possibly can women to get the healthcare they truly deserve. Thank you once again❤️
Have you read Rebel Bodies by Sarah Graham? It’s about women’s health mainly in the U.K. and some statistics from the U.S it covers the same topics I could only get through 50% as it made me angry and depressed. I imagine it’s worse in the U.S because of what health insurance covers and doesn’t and because of private practise and funding and big pharma has such a big influence.
I’d be interested in reading your book when it comes out- but in small doses.
It’s good that investment in women’s medical tech is getting off the ground and progress is being made.
I had to go through years of try this, try that. Following the medical guidelines that were put in place to make us feel like something was being done. In reality, I think it was just to quiet our questioning. Bleeding so heavy tampons plus a pad couldn’t hold it. Clots that were the size of my hand. Finally, the doctor recommended a hysterectomy and when I say I’d like a second opinion, he comes back with “Do you want to end up with cancer like your mother and grandmother?” Like this whole thing was MY fault! After surgery, he tells me my uterus was over ten times bigger than it should have been - full of fibrous tumors. Made it sound like I deserved a trophy😡
Patricia,
I’m so sorry you had to go through this and so grateful you shared it here. Your story captures something so many women have lived through: being dismissed, blamed, and made to feel like their pain was their fault. If you're open to it, I’d love to include your experience in my book it says so much about the systemic failures we are taught to accept as routine care. With deep respect and thank you so much for your voice, Maryann
Sad, and true wrt so-called women’s pain dismissed as madness or hysterical attention seeking behaviour. What absolute poppycock! What hypocrisy! That a beautiful and talented woman at the top of her game like Venus Williams could be so much as disrespected by “top”
doctors comes as a revelation of horror to me.
However, it’s no surprise, sadly. As an ex-hospital employee, I saw plenty of eating disorder patients: bulimia nervosa, and anorexia nervosa and exercise obsessive compulsive disorder sufferers and so called psychiatric cases who were actually Young beautiful women of all colours and backgrounds and shapes and textures who were crippled by their pain.
Now when I look back I know that my intuition and wisdom weren’t misplaced, these were women in indescribable pain, they were not malingerers or fakes or crazy.
Just sore.
And disrespected.
Thank you, Carol Ann. Your perspective is powerful and heartbreaking. You’re right: so many women were never “hysterical”….just hurting. And dismissed.
I was in pain for 7 years before my doctors would even consider a hysterectomy (because I was "old" enough). Meanwhile, I kept trying to function as normal as a runner, wife, lawyer, with times when the pain was too much.
Thank you for sharing this. You shouldn’t have had to suffer that long just to be taken seriously. Stories like yours are why I keep writing and why change is overdue. 🙏🏽
We have shared interests, I research and write on these topics too! Thanks for bringing attention to these critical issues!
Thanks so much for writing this and raising awareness. It's really interesting to see this story told from the finance perspective, too.
I spent a day in A&E (UK's ER) yesterday with kidney stones... I was given morphine, but more than that I was given compassion and sympathy. I was told kidney stones are "the worst pain, worse than childbirth". I haven't given birth, but I *have* had endometriosis for years, and two rounds of surgery for it. I got quicker, more respectful care and was given way stronger painkillers for a temporary, acute condition (kidney stones) than I've ever had for the appalling cyclical pain from endometriosis that floors me monthly. And while this galls me, I'm aware that being white I'm probably still getting better pain relief and gynaecological care than Black and Brown women coming in with the same issues...
Thank you for sharing this so openly, Gemma. Your experience powerfully underscores the double standards not just in pain management but in whose pain is believed, prioritized, and treated. And yes, the racial disparities in gynaecological care make this even more urgent. I’m grateful you brought this lens into the conversation. It’s exactly why we need a capital system that funds what the system still ignores.
Thank you for highlighting this. 11% of women suffer from lipedema, a connective tissue disorder leading to lymphatic dysfunction and the build-up of diseased, fibrotic fat in the lower body. This understudied condition can impair mobility, cause chronic fatigue and pain and lead to disfigurement. Yet, most doctors cannot diagnose it because it is a ‘women’s disease’ that does not get talked about. Many women suffer in silence and do not get a diagnosis until the disease has progressed severely.
Would you be willing to look into this?
Thank you!
https://www.lipedema.org
Thank you, Rabbi Esther, for bringing lipedema into this conversation. I wasn’t aware of the 11% figure and you’re right, it’s a striking example of how underdiagnosis and dismissal still shape so much of women’s health. I’m grateful for the link and will absolutely look into this further.
A few evidence-based resources for you:
https://www.lipedema.org
https://www.fatdisorders.org
https://lipedemaproject.org
Thank you so much! Please don’t hesitate to reach out if I can be helpful in any way. And thank you for your research and advocacy - it is so important.
Thank you so much for putting this awful struggle into words. Thank you for researching and putting this on a public platform so people can share and discuss this issue.
You are most welcome Judi!
Endometriosis is another disaster story….
yup!
cheers
Thank you so much Judith!
I would like to discuss with you some more but need your email.
Sent you a message Judith
Hello I am struggling to find your email address. Suffering from an unusual medical complaint, I am often gaslighted and have spent eight years looking for the still elusive cure.
I am Judithasullivan3@aol.com
I just want to say to you Maryann: Thank you. Thank you for writing these posts that shed light on problems that we didn’t even know existed. Your writing, passion and dedication towards the mission for a better healthcare for women is making me more eager to pursue medicine and to learn about the business aspect of it. I want to be part of this movement. I want to help as much as I possibly can women to get the healthcare they truly deserve. Thank you once again❤️
Have you read Rebel Bodies by Sarah Graham? It’s about women’s health mainly in the U.K. and some statistics from the U.S it covers the same topics I could only get through 50% as it made me angry and depressed. I imagine it’s worse in the U.S because of what health insurance covers and doesn’t and because of private practise and funding and big pharma has such a big influence.
I’d be interested in reading your book when it comes out- but in small doses.
It’s good that investment in women’s medical tech is getting off the ground and progress is being made.