Thank you so much for this article. I read it when it was first published and immediately sent it to my 21 yo daughter. She has been experiencing various health issues for years. We thought she had finally found the root cause (allergies) but there was something about reading your story that sparked a feeling of urgency to revisit the nagging feeling I have had off and on since she started her (horrifically painful) periods that she might have endometriosis. Long story short, she just had excision surgery today with one of the top endo surgeons in the country. Your choice to share your experience is without a doubt the reason she was able to get the help she needed instead of going through years of mystery pain and the other potential problems of undiagnosed endo. I believe that God is in the details of our lives and I definitely see it in this circumstance. Thank you to you and to the Free Press for publishing this.
Wow. What the hell? I learned about this condition in 2001 from a good friend who was and had been dealing with it for years. I believe both she and her sister underwent laproscopic procedures to remove ovarian/uteran adhesions on more than one occasion.
Take all of the research you've looked up on the topic and make some print-outs. Deliver copies to all of the... physicians that eyerolled your condition; maybe include a copy of one of those Reading Is Fun booklets they used to pass out at elementary schools.
Do we have data on the percentage of trans women who are affected by this disease? I noticed that information was conspicuously, maybe intentionally, omitted.
I'm in tears. I'm so sorry for your years of suffering. this sounds like a friend who went to battle for her daughter. everyone thought she was crazy (both mother and daughter) and that Lotti was just a lazy teenager but in fact she had a 75% clogged carotid artery. No one would touch her and it was her "pushy" mother that finally found a surgeon in CA that would work with her and do the surgery. It actually made the news.
You know what’s saddest? I would have guessed correctly based on the symptoms. All it took was knowing one person, in this case a college friend, who suffered from this condition. How is it possible to become a practicing gynecologist without being aware?
An outstanding essay providing tremendous material for discussion and ultimately the benefit of the field of medicine, medical training and practice, patient awareness and medical research. One of the many lessons reinforced by this experience is the absolute importance of allowing for time and focus in the conversations between patient and physician - the 20 minute appointments often scheduled these days and enforced upon physicians as part of the larger medical organizations are incapable of providing the necessary time to build a relationship that promotes diagnosis of physical illnesses that cannot be identified through the existing non-invasive methods. Another clear lesson is the absolute importance of medical schools and follow up conferences and training opportunities for physicians - especially family practices and OBGYN practices - to stay current on the growing awareness of these hard to diagnose illnesses whether they occur equally between men and women (boys and girls) or are predisposed to one sex. Essays such as this are essential tools for spreading this knowledge as they provide context and a “story” that can be passed on and remembered by women and by physicians. The practice of medicine is as much art as science and diagnosis and treatment must reflect this truth. I also found the discussions that focused upon the issue of “gender bias” in medicine and especially the comments on male physicians vs. female physicians and the pursuit of treatments reflecting gender bias to be illuminating in their consistent undermining of trust in the practice of medicine as a entire field or vocation. If one assumes that male physicians are incapable of proactively and successfully treating female patients because of the fact that they are male - well 1) how does one explain the fact that medicine exists at all given that according to the accompanying view - the majority of doctors have been men? 2) This means that all women doctors are inherently incapable of treating men successfully simply because they are female. Which is not consistent with current medical practice or experience. 3) such an attitude assumes that male doctors are incapable of establishing a relationship of respect and trust with women patients simply because of their sex - not by choice but rather by the fact that they are born male and so are incapable of this - and a similar assumption must be applied to women physicians towards their male patients. This entire line of “reasoning” reflects not only true gender bias - that because of the fact of one’s sex one is incapable of being a successful physician to 50% of the population, but also completely disregards the entire basis for “education” - that through education we can gain knowledge, understanding, and experience that allows us to build relationships and see truths that exist beyond our own limited personal experience. So once again, many thanks for an absolutely outstanding article and for the lively commentary and discussion. My final personal lesson was that ultimately physicians are humans, temporary partners in our life journey, consultants regarding our health and not God - and as such will be libel to all the amazing strengths and terrible weaknesses of character that afflict us all and that the practice of medicine over the ages reflects the challenge we as a society have and will always face to treat all humans with dignity, seek knowledge so we can respect the life of each person who comes under our care.
The patent portal makes sense for cancelling an appointment and or requesting a routine prescription refill( patient to a staff member) . It is not the way a doctor patient interaction about symptoms should take place.It is not a conversation and by the time the doctor responds things may have changed significantly. It is an illusion to call that “ improving patient care” .
I have Ulcerative Colitis, diagnosed 22 years ago. One of my early GI docs wanted me to see a psychiatrist because I was in pain. That’s when I learned that many medical groups won’t let you change docs inside their practice. Another interesting medical policy. Don’t like your new doc, too bad.
My daughter went through the exact same thing. She had a lot of pain and her female gynecologist just told her to increase her dosage of ibuprofen. She ended up going to PT and then she went to a back specialist because a lot of her pain was in her back. Luckily a friend of hers said it was probably endometriosis because her friend had surgery for it. She went to the endometriosis specialist and indeed she had it pretty severely. She had the surgery and was able to get pregnant no problem. It’s scary to think what would have happened if she had not had a friend who was familiar with it.
I specialize in robotic laser excision of endometriosis. I can attest to everything the author said about the terrible care that exists out there for these women. This is a surgical disease that needs a complete excision to achieve a chance at lasting relief and a possibility of fertility in the future. If anyone is possibly suffering from this disease they need to visit:
Some time ago, I sat next to a doctor on an airplane. Since this is relevant, I should mention that the doctor was a lady. Since this is also relevant, I should mention that she was quite white (non-Hispanic). She had worked for years in the ‘valley’. In Texas, that means the Rio Grande valley. Her clients were entirely young Hispanic women. When she worked in the valley, she thought endometriosis was a myth. Over a period of several years, she never saw a single case.
Then she moved ‘north’ (to Houston) where her clients included Anglo women. Quite a few of them suffered from endometriosis. What was the difference? It was not racial, but age of first childbirth. The Hispanic women tended to have children when they were quite young. The Anglo women did not.
There is evidence that childbirth reduces endometriosis risks / symptoms. The article failed to even mention this issue.
As a gynecologist practicing for over 33 years and specializing in endometriosis, I can attest that Abigail's experience is sadly not uncommon. And as a male physician, I have encountered innumerable patients whose complaints of pelvic pain were dismissed by other physicians - including plenty of female docs, whose attitudes could be summarized as "I have periods, I've given birth, your pain is not that bad."
It turns out endometriosis is a relatively straightforward condition to diagnose - if the doc takes a careful history. It is far and away the most common cause of chronic female pelvic pain. It cannot be detected on physical exam, by a Pap smear, ultrasound, CT scan, or MRI. There is no screening blood test. It can be strongly suspected by a history that includes dysmenorrhea (painful periods), dyspareunia (painful intercourse), and menstrual dyschezia (painful bowel movements, especially at the time of the menstrual period). It should be always suspected if the patient has the above triad of symptoms **despite** menstrual suppression with hormonal contraceptives such as the Pill, the Depo Provera shot, NuvaRing, contraceptive patch, or IUD (intrauterine device).
However, the diagnosis cannot be confirmed without direct visualization of the characteristic lesions by direct inspection using video camera attached to a telescopic instrument known as a LAPAROSCOPE, and more importantly, EXCISIONAL BIOPSY (removal of abnormal tissue) which is ideally performed laparoscopically. Some surgeons simply perform ABLATION using electrocautery or laser but this only destroys the superficial disease, and it is known that endometriosis can be a deeply infiltrating disease. We often liken this to missing the 2/3 of the iceberg that is beneath the surface of the water.
The sad state of affairs as to why few gynecologists have the awareness or expertise to promptly detect and remove endometriosis is because of several factors. One is the somewhat steep learning curve for doing this type of laparoscopic excision. It takes LOTS of practice to become skilled at excising endometriosis safely. Part of why there is a dearth of skilled GYN laparoscopic surgeons is that the total amount of training one gets in Ob/Gyn residency is woefully inadequate for independently performing this type of surgery. Once in practice, unless the new doc has an experienced surgical mentor, they will be hard pressed to acquire such skills. The other elephant in the room is reimbursement, coupled with the risk of that type of surgery. It turns out there is only one CPT billing code for removal of endometriosis, 58662, and it is poorly reimbursed. Couple that with the fact that for complete removal of endometriosis the surgeon often has to operate in very close proximity to vital structures, such as the ureter, the bladder, large blood vessels, the colon and rectum, and in an anatomically challenging space known as the retroperitoneum, with the risk of injury to those nearby structures, plus the time it takes to dissect in those locations, and many GYN docs quickly decide the whole thing just isn't worth the time and anxiety and risk. This is why many of the skilled GYN laparoscopic surgeons who have expertise in endometriosis are intentionally "out of network" with health insurance companies. They often charge exorbitant fees (I've seen between $10,000 and $20,000) and won't file insurance.
Abigail,
Thank you so much for this article. I read it when it was first published and immediately sent it to my 21 yo daughter. She has been experiencing various health issues for years. We thought she had finally found the root cause (allergies) but there was something about reading your story that sparked a feeling of urgency to revisit the nagging feeling I have had off and on since she started her (horrifically painful) periods that she might have endometriosis. Long story short, she just had excision surgery today with one of the top endo surgeons in the country. Your choice to share your experience is without a doubt the reason she was able to get the help she needed instead of going through years of mystery pain and the other potential problems of undiagnosed endo. I believe that God is in the details of our lives and I definitely see it in this circumstance. Thank you to you and to the Free Press for publishing this.
There is an early-stage company called Endosure with a diagnostic device that has gone through clinical trials.
Wow. What the hell? I learned about this condition in 2001 from a good friend who was and had been dealing with it for years. I believe both she and her sister underwent laproscopic procedures to remove ovarian/uteran adhesions on more than one occasion.
Take all of the research you've looked up on the topic and make some print-outs. Deliver copies to all of the... physicians that eyerolled your condition; maybe include a copy of one of those Reading Is Fun booklets they used to pass out at elementary schools.
I am sorry you had to go through the BS.
Do we have data on the percentage of trans women who are affected by this disease? I noticed that information was conspicuously, maybe intentionally, omitted.
Wish you all the best. A terrible tale of unnecessary suffering, but through your advocacy hopefully prevents suffering in others.
I'm in tears. I'm so sorry for your years of suffering. this sounds like a friend who went to battle for her daughter. everyone thought she was crazy (both mother and daughter) and that Lotti was just a lazy teenager but in fact she had a 75% clogged carotid artery. No one would touch her and it was her "pushy" mother that finally found a surgeon in CA that would work with her and do the surgery. It actually made the news.
You know what’s saddest? I would have guessed correctly based on the symptoms. All it took was knowing one person, in this case a college friend, who suffered from this condition. How is it possible to become a practicing gynecologist without being aware?
An outstanding essay providing tremendous material for discussion and ultimately the benefit of the field of medicine, medical training and practice, patient awareness and medical research. One of the many lessons reinforced by this experience is the absolute importance of allowing for time and focus in the conversations between patient and physician - the 20 minute appointments often scheduled these days and enforced upon physicians as part of the larger medical organizations are incapable of providing the necessary time to build a relationship that promotes diagnosis of physical illnesses that cannot be identified through the existing non-invasive methods. Another clear lesson is the absolute importance of medical schools and follow up conferences and training opportunities for physicians - especially family practices and OBGYN practices - to stay current on the growing awareness of these hard to diagnose illnesses whether they occur equally between men and women (boys and girls) or are predisposed to one sex. Essays such as this are essential tools for spreading this knowledge as they provide context and a “story” that can be passed on and remembered by women and by physicians. The practice of medicine is as much art as science and diagnosis and treatment must reflect this truth. I also found the discussions that focused upon the issue of “gender bias” in medicine and especially the comments on male physicians vs. female physicians and the pursuit of treatments reflecting gender bias to be illuminating in their consistent undermining of trust in the practice of medicine as a entire field or vocation. If one assumes that male physicians are incapable of proactively and successfully treating female patients because of the fact that they are male - well 1) how does one explain the fact that medicine exists at all given that according to the accompanying view - the majority of doctors have been men? 2) This means that all women doctors are inherently incapable of treating men successfully simply because they are female. Which is not consistent with current medical practice or experience. 3) such an attitude assumes that male doctors are incapable of establishing a relationship of respect and trust with women patients simply because of their sex - not by choice but rather by the fact that they are born male and so are incapable of this - and a similar assumption must be applied to women physicians towards their male patients. This entire line of “reasoning” reflects not only true gender bias - that because of the fact of one’s sex one is incapable of being a successful physician to 50% of the population, but also completely disregards the entire basis for “education” - that through education we can gain knowledge, understanding, and experience that allows us to build relationships and see truths that exist beyond our own limited personal experience. So once again, many thanks for an absolutely outstanding article and for the lively commentary and discussion. My final personal lesson was that ultimately physicians are humans, temporary partners in our life journey, consultants regarding our health and not God - and as such will be libel to all the amazing strengths and terrible weaknesses of character that afflict us all and that the practice of medicine over the ages reflects the challenge we as a society have and will always face to treat all humans with dignity, seek knowledge so we can respect the life of each person who comes under our care.
The patent portal makes sense for cancelling an appointment and or requesting a routine prescription refill( patient to a staff member) . It is not the way a doctor patient interaction about symptoms should take place.It is not a conversation and by the time the doctor responds things may have changed significantly. It is an illusion to call that “ improving patient care” .
What are your reasons for refusing to use it?
I have Ulcerative Colitis, diagnosed 22 years ago. One of my early GI docs wanted me to see a psychiatrist because I was in pain. That’s when I learned that many medical groups won’t let you change docs inside their practice. Another interesting medical policy. Don’t like your new doc, too bad.
I forgot to mention that the back specialist told her she needed back surgery.
My daughter went through the exact same thing. She had a lot of pain and her female gynecologist just told her to increase her dosage of ibuprofen. She ended up going to PT and then she went to a back specialist because a lot of her pain was in her back. Luckily a friend of hers said it was probably endometriosis because her friend had surgery for it. She went to the endometriosis specialist and indeed she had it pretty severely. She had the surgery and was able to get pregnant no problem. It’s scary to think what would have happened if she had not had a friend who was familiar with it.
I specialize in robotic laser excision of endometriosis. I can attest to everything the author said about the terrible care that exists out there for these women. This is a surgical disease that needs a complete excision to achieve a chance at lasting relief and a possibility of fertility in the future. If anyone is possibly suffering from this disease they need to visit:
spsurgeons.org
We can help you. Don’t delay treatment because this disease only worsens with time.
Thanks for sharing your story with us. It is both heartbreaking and inspiring. Hopefully it will bring a new awareness to the severity of the illness.
Some time ago, I sat next to a doctor on an airplane. Since this is relevant, I should mention that the doctor was a lady. Since this is also relevant, I should mention that she was quite white (non-Hispanic). She had worked for years in the ‘valley’. In Texas, that means the Rio Grande valley. Her clients were entirely young Hispanic women. When she worked in the valley, she thought endometriosis was a myth. Over a period of several years, she never saw a single case.
Then she moved ‘north’ (to Houston) where her clients included Anglo women. Quite a few of them suffered from endometriosis. What was the difference? It was not racial, but age of first childbirth. The Hispanic women tended to have children when they were quite young. The Anglo women did not.
There is evidence that childbirth reduces endometriosis risks / symptoms. The article failed to even mention this issue.
As a gynecologist practicing for over 33 years and specializing in endometriosis, I can attest that Abigail's experience is sadly not uncommon. And as a male physician, I have encountered innumerable patients whose complaints of pelvic pain were dismissed by other physicians - including plenty of female docs, whose attitudes could be summarized as "I have periods, I've given birth, your pain is not that bad."
It turns out endometriosis is a relatively straightforward condition to diagnose - if the doc takes a careful history. It is far and away the most common cause of chronic female pelvic pain. It cannot be detected on physical exam, by a Pap smear, ultrasound, CT scan, or MRI. There is no screening blood test. It can be strongly suspected by a history that includes dysmenorrhea (painful periods), dyspareunia (painful intercourse), and menstrual dyschezia (painful bowel movements, especially at the time of the menstrual period). It should be always suspected if the patient has the above triad of symptoms **despite** menstrual suppression with hormonal contraceptives such as the Pill, the Depo Provera shot, NuvaRing, contraceptive patch, or IUD (intrauterine device).
However, the diagnosis cannot be confirmed without direct visualization of the characteristic lesions by direct inspection using video camera attached to a telescopic instrument known as a LAPAROSCOPE, and more importantly, EXCISIONAL BIOPSY (removal of abnormal tissue) which is ideally performed laparoscopically. Some surgeons simply perform ABLATION using electrocautery or laser but this only destroys the superficial disease, and it is known that endometriosis can be a deeply infiltrating disease. We often liken this to missing the 2/3 of the iceberg that is beneath the surface of the water.
The sad state of affairs as to why few gynecologists have the awareness or expertise to promptly detect and remove endometriosis is because of several factors. One is the somewhat steep learning curve for doing this type of laparoscopic excision. It takes LOTS of practice to become skilled at excising endometriosis safely. Part of why there is a dearth of skilled GYN laparoscopic surgeons is that the total amount of training one gets in Ob/Gyn residency is woefully inadequate for independently performing this type of surgery. Once in practice, unless the new doc has an experienced surgical mentor, they will be hard pressed to acquire such skills. The other elephant in the room is reimbursement, coupled with the risk of that type of surgery. It turns out there is only one CPT billing code for removal of endometriosis, 58662, and it is poorly reimbursed. Couple that with the fact that for complete removal of endometriosis the surgeon often has to operate in very close proximity to vital structures, such as the ureter, the bladder, large blood vessels, the colon and rectum, and in an anatomically challenging space known as the retroperitoneum, with the risk of injury to those nearby structures, plus the time it takes to dissect in those locations, and many GYN docs quickly decide the whole thing just isn't worth the time and anxiety and risk. This is why many of the skilled GYN laparoscopic surgeons who have expertise in endometriosis are intentionally "out of network" with health insurance companies. They often charge exorbitant fees (I've seen between $10,000 and $20,000) and won't file insurance.