Women’s health is so undervalued. Im so sorry you went through this for so long, and I’m hoping you have found relief after diagnosis and treatment. If men ever suffered from endometriosis, a cure would have been found decades ago without any hesitation about coverage from insurance.
THANK YOU, thank you thank you!!! for shedding light on this horrible disease! I didn’t even need to read past the first few paragraphs to know you were talking about endometriosis.
I have endo and it went undiagnosed for 15 years. My symptoms manifested in so many ways - but my worst symptom of all has been infertility.
I always knew endometriosis was a potential reason for my infertility struggle. An obgyn in my teens once mentioned it to me after I came in for a visit after passing out in the shower from my period pain. She told me you only get diagnosed with it if you are struggling to get pregnant, but you’ll only officially get diagnosed after you have surgery to see if you even have it. (It never dawned on me that it would be the reason behind so many of my other health issues.)
I spent tens of thousands of dollars over the years on failed fertility treatments after doctors I saw were adamant that IVF was a workaround for endo. They told me excision surgery to remove lesions was likely not worth it and they may not even find anything when they’re in there. They could not have been more wrong.
After my third miscarriage and failed embryo transfer, the IVF doctor suggest another round with a new protocol and I told them I was done throwing good money after bad and called Dr. Seckin (founder of the endometriosis foundation) and scheduled an appointment for surgery consultation. I was under the knife 6 weeks later and they found over 50 lesions of deep infiltrating endo everywhere, also on my appendix, bowels, bladder - all over. I have never been more relieved to be diagnosed with a disease.
I immediately felt better after my recovery, as if I had been given a new body. I didn’t even need Tylenol during my periods. But best of all, 10 months after surgery I naturally conceived my daughter, who turns 1 next month. She is truly a miracle and my biggest blessing in life, and I know I would not have been able to have her if I hadn’t took matters into my own hands and elected to have excision surgery.
It is appalling to me that in an era where we are so concerned about women’s reproductive rights, doctors are SO uneducated about this disease and how it manifests. I’m hopeful in my lifetime we will have more answers and a better treatment for women who are suffering.
It's not only women who are dismissed by the medical profession. If a man doesn't fit the drs. definition of what is wrong, they too are dismissed. Take this drug and if you still have a problem come back. Having undergone 2 botched surgeries, I will never trust another dr. In my 84 yrs. I've met only 1 Dr. who knew what he was doing, a dermatologist, the rest were guessing.
This was an extremely informative article. It’s hard to wrap my head around the psychological roller coaster you were put on. The medical establishment gas-lighted you! I think every single doctor who misdiagnosed you needs to read this article. Every ER doctor needs to read this article. Every medical student should be required to read this. I hope you have support working through any emotional fallout in the years to come. You’re a brave woman.
I'm sorry you went through this. I have been there as have so many women. I have endometriosis, interstitial cystitis, and pelvic congestion syndrome in addition to a connective tissue disorder. I learned that most doctors are useless for chronic disorders. However, good ones that listen to their patients actually do exist. It just takes time to find them. I've had better success with direct patient care doctors that work independent from insurance companies.
First of all, I'm sorry that you had to endure that pain for so long. That had to be miserable as you described. I'll make two points. A good gynecologist (or family physician) would have had this diagnosis in their differential after a few visits. You should not have suffered that long and I would suggest your example is unusual. Secondly, we may be seeing more of this delay in diagnosis in the future because of new guidelines passed about 10 years ago regarding the frequency with which pap smears are required, including not needing one until age 21. There are reasons for that which I wont go into (I'm a family physician- it has to do with HPV, pathology, immunology etc.) but the un-intended consequence is that the public thinks that this means they don't have to see their gynecologist or primary care doctor but every three to five years for their pap smear, and so they are not coming in for their pelvic exam and for an annual gynecological history. This has been a real problem and frustration for physicians, and there has even been a bump in the incidence of cervical cancer diagnosis. Bottom line is that women should still see their gynecologist or pcp annually for the ability to take a history like yours, and perform a pelvic exam if indicated. Best wishes for your future health!
Thank you for a well written, intense consolidation of a very painful and traumatic medical issue that hopefully helps many other women find relief. You actually under played your very horrible experience and that made your writing even more impactful. Wishing you only happiness and success as you move forward in life.
If this happened to a Black woman, Democrats would work as hard as they possibly could to convince her that it was because the doctors are all racists.
The downside for the woman is it results in helplessness and resentment and the medical issue not being addressed. The downside for me is that this psychopathic approach to politics results in people voting for even more communism, which I have to pay for.
Hopefully Abigail will have a full recovery and a wonderfully full life ahead of her. Abigail, you are a wonderful writer. This article makes clear that medicine is not as simple as we all like to think. And makes clear that we need the best and the brightest to be doctors for those of us who have unusual medical issues. Many of us have learned from our own experience that all doctors are not created equally. And yes med schools need to refocus on teaching medicine and science and get the hell out of politics. We all want Dr Gregory House when something really awful is happening to us. And he never even wore a white coat.
God bless you. An ex-girlfriend of mine had endometriosis. I cared for her in the weeks after her surgery.
Unfortunately, misdiagnosis or lack of diagnosis is way too common in allopathic medicine. I've come to learn when I need to consult another doctor or two or three.
This may be on the fringe, but when it comes to auto-immune disease (endometriosis is not currently classified as one but is associated with them), I recommend the work of Gabor Mate, especially his recent book, _The Myth of Normal_. It wasn't until I established firm boundaries with people, even cutting a lot of friends and family out of my life, that my sarcoidosis went into total remission. Coincidence? maybe.
I spent the past five years trying to get doctors to take my reproductive health seriously. I was told everything was fine, multiple miscarriages are normal, it’s in my head, I’m causing the miscarriages myself with worrying - and my favorite - maybe you should try sex in a different position. I don’t know where that last guy got his medical degree.
It took 7 doctors before someone took the time to help me, and within 6 months under her care, I finally got answers and am now pregnant and the furthest along we’ve ever been with a healthy baby boy. NaPro doctors who practice functional medicine are a Godsend.
The vast majority of western doctors are just drug dealers now. Few of them actually care about their patients and they know *absolutely nothing* about nutrition.
I’m so sorry you went through this and yet I’m also glad you have survived it and are now thriving, so that we can learn from you and do better going forward. So many female issues are still just ignored, as you said, despite the profession being 85% female now. Menopausal issues have also been ignored, demonized, minimized. The sad truth is we must all advocate for ourselves medically in all healthcare situations and push hard for what we know we need. This is only going to worsen for the time being because doctors are leaving the profession in droves these days. Thank you for writing this!
I’m disappointed in the comments treating this article as if it’s ridiculous and questioning why TFP would bother with it. Our broken medical system is just as worthy of discussion as everything else that’s broken in our country. These conversations start with anecdotes like Abigail’s. Personally, I would love to see further analysis of broken institutions and systems because it’s all intertwined. The medical system, pharma, agriculture, the crap the FDA allows in our food, how CDC recommendations come about, etc. If you don’t think all of these things are relevant and part of the political mess in this country, you haven’t been paying attention. Remember: you’re easier to control if you’re preoccupied with being sick and poor.
Women’s health is so undervalued. Im so sorry you went through this for so long, and I’m hoping you have found relief after diagnosis and treatment. If men ever suffered from endometriosis, a cure would have been found decades ago without any hesitation about coverage from insurance.
THANK YOU, thank you thank you!!! for shedding light on this horrible disease! I didn’t even need to read past the first few paragraphs to know you were talking about endometriosis.
I have endo and it went undiagnosed for 15 years. My symptoms manifested in so many ways - but my worst symptom of all has been infertility.
I always knew endometriosis was a potential reason for my infertility struggle. An obgyn in my teens once mentioned it to me after I came in for a visit after passing out in the shower from my period pain. She told me you only get diagnosed with it if you are struggling to get pregnant, but you’ll only officially get diagnosed after you have surgery to see if you even have it. (It never dawned on me that it would be the reason behind so many of my other health issues.)
I spent tens of thousands of dollars over the years on failed fertility treatments after doctors I saw were adamant that IVF was a workaround for endo. They told me excision surgery to remove lesions was likely not worth it and they may not even find anything when they’re in there. They could not have been more wrong.
After my third miscarriage and failed embryo transfer, the IVF doctor suggest another round with a new protocol and I told them I was done throwing good money after bad and called Dr. Seckin (founder of the endometriosis foundation) and scheduled an appointment for surgery consultation. I was under the knife 6 weeks later and they found over 50 lesions of deep infiltrating endo everywhere, also on my appendix, bowels, bladder - all over. I have never been more relieved to be diagnosed with a disease.
I immediately felt better after my recovery, as if I had been given a new body. I didn’t even need Tylenol during my periods. But best of all, 10 months after surgery I naturally conceived my daughter, who turns 1 next month. She is truly a miracle and my biggest blessing in life, and I know I would not have been able to have her if I hadn’t took matters into my own hands and elected to have excision surgery.
It is appalling to me that in an era where we are so concerned about women’s reproductive rights, doctors are SO uneducated about this disease and how it manifests. I’m hopeful in my lifetime we will have more answers and a better treatment for women who are suffering.
It's not only women who are dismissed by the medical profession. If a man doesn't fit the drs. definition of what is wrong, they too are dismissed. Take this drug and if you still have a problem come back. Having undergone 2 botched surgeries, I will never trust another dr. In my 84 yrs. I've met only 1 Dr. who knew what he was doing, a dermatologist, the rest were guessing.
Excellent writing, Abigail. Well done! Thanks for sharing your harrowing story and highlighting this important issue.
This was an extremely informative article. It’s hard to wrap my head around the psychological roller coaster you were put on. The medical establishment gas-lighted you! I think every single doctor who misdiagnosed you needs to read this article. Every ER doctor needs to read this article. Every medical student should be required to read this. I hope you have support working through any emotional fallout in the years to come. You’re a brave woman.
I'm sorry you went through this. I have been there as have so many women. I have endometriosis, interstitial cystitis, and pelvic congestion syndrome in addition to a connective tissue disorder. I learned that most doctors are useless for chronic disorders. However, good ones that listen to their patients actually do exist. It just takes time to find them. I've had better success with direct patient care doctors that work independent from insurance companies.
First of all, I'm sorry that you had to endure that pain for so long. That had to be miserable as you described. I'll make two points. A good gynecologist (or family physician) would have had this diagnosis in their differential after a few visits. You should not have suffered that long and I would suggest your example is unusual. Secondly, we may be seeing more of this delay in diagnosis in the future because of new guidelines passed about 10 years ago regarding the frequency with which pap smears are required, including not needing one until age 21. There are reasons for that which I wont go into (I'm a family physician- it has to do with HPV, pathology, immunology etc.) but the un-intended consequence is that the public thinks that this means they don't have to see their gynecologist or primary care doctor but every three to five years for their pap smear, and so they are not coming in for their pelvic exam and for an annual gynecological history. This has been a real problem and frustration for physicians, and there has even been a bump in the incidence of cervical cancer diagnosis. Bottom line is that women should still see their gynecologist or pcp annually for the ability to take a history like yours, and perform a pelvic exam if indicated. Best wishes for your future health!
Thank you for a well written, intense consolidation of a very painful and traumatic medical issue that hopefully helps many other women find relief. You actually under played your very horrible experience and that made your writing even more impactful. Wishing you only happiness and success as you move forward in life.
The country isn’t fixated on reproductive rights, it’s fixated on abortion.
If this happened to a Black woman, Democrats would work as hard as they possibly could to convince her that it was because the doctors are all racists.
The downside for the woman is it results in helplessness and resentment and the medical issue not being addressed. The downside for me is that this psychopathic approach to politics results in people voting for even more communism, which I have to pay for.
Please stop voting for communism.
Your perseverance is remarkable, particularly in the face of zero support (not even from your parents!)
So glad you had the grit to stick it out and get medical care you needed, a bold example of courage and self-advocacy
Hopefully Abigail will have a full recovery and a wonderfully full life ahead of her. Abigail, you are a wonderful writer. This article makes clear that medicine is not as simple as we all like to think. And makes clear that we need the best and the brightest to be doctors for those of us who have unusual medical issues. Many of us have learned from our own experience that all doctors are not created equally. And yes med schools need to refocus on teaching medicine and science and get the hell out of politics. We all want Dr Gregory House when something really awful is happening to us. And he never even wore a white coat.
God bless you. An ex-girlfriend of mine had endometriosis. I cared for her in the weeks after her surgery.
Unfortunately, misdiagnosis or lack of diagnosis is way too common in allopathic medicine. I've come to learn when I need to consult another doctor or two or three.
This may be on the fringe, but when it comes to auto-immune disease (endometriosis is not currently classified as one but is associated with them), I recommend the work of Gabor Mate, especially his recent book, _The Myth of Normal_. It wasn't until I established firm boundaries with people, even cutting a lot of friends and family out of my life, that my sarcoidosis went into total remission. Coincidence? maybe.
I spent the past five years trying to get doctors to take my reproductive health seriously. I was told everything was fine, multiple miscarriages are normal, it’s in my head, I’m causing the miscarriages myself with worrying - and my favorite - maybe you should try sex in a different position. I don’t know where that last guy got his medical degree.
It took 7 doctors before someone took the time to help me, and within 6 months under her care, I finally got answers and am now pregnant and the furthest along we’ve ever been with a healthy baby boy. NaPro doctors who practice functional medicine are a Godsend.
The vast majority of western doctors are just drug dealers now. Few of them actually care about their patients and they know *absolutely nothing* about nutrition.
I’m so sorry you went through this and yet I’m also glad you have survived it and are now thriving, so that we can learn from you and do better going forward. So many female issues are still just ignored, as you said, despite the profession being 85% female now. Menopausal issues have also been ignored, demonized, minimized. The sad truth is we must all advocate for ourselves medically in all healthcare situations and push hard for what we know we need. This is only going to worsen for the time being because doctors are leaving the profession in droves these days. Thank you for writing this!
I’m disappointed in the comments treating this article as if it’s ridiculous and questioning why TFP would bother with it. Our broken medical system is just as worthy of discussion as everything else that’s broken in our country. These conversations start with anecdotes like Abigail’s. Personally, I would love to see further analysis of broken institutions and systems because it’s all intertwined. The medical system, pharma, agriculture, the crap the FDA allows in our food, how CDC recommendations come about, etc. If you don’t think all of these things are relevant and part of the political mess in this country, you haven’t been paying attention. Remember: you’re easier to control if you’re preoccupied with being sick and poor.