On Lena Dunham, and Why it is Hard to Find a Skilled Endometriosis Physician
Recently I read an article by Lena Dunham, describing her life with endometriosis, treatment she has undergone, and how her life has been since. Its a very poignant article about a successful woman who has been held back by her condition, yet also a story of incredible perseverance despite tremendous barriers. Ms Dunham is a successful actress, producer, writer, and director, having created multiple films and the wildly successful (and awesome!) HBO series Girls, both as writer/director/producer and as principal actress. She is also a woman who did these things despite tremendous pain from endometriosis.
While most people reading the article will be focused on its emotional content, as an endometriosis surgeon reading an article about a woman who is still struggling with her disease, I can’t help but consider some technical questions. Based on her writing, Ms Dunham had a single surgery to treat endometriosis, and she describes feeling better for a period of time and then relapsing into symptoms. She went on to be treated with Lupron, a chemical agent that simulates menopause in the body, which ultimately starves any residual endometriosis of estrogen, thus decreasing or eliminating symptoms while on the drug (while also creating a host of undesirable side effects.)
Ms Dunham’s description of getting better for a short period of time and relapsing is a fairly common description from a woman who has had an ablation surgery or incomplete resection of disease. They get better for a while and then they hurt again. I have seen so many of such women in my office, and in the majority of cases we are able to do additional surgery that gets them more lasting relief from their symptoms. Usually these women have been operated on previously by well intentioned physicians who did not have the experience and training to fully resect the disease. As I read Ms Dunham’s editorial, I wonder if her surgery was by such a physician, and if she might get even better with additional surgery by a surgeon more experienced with endometriosis resection.
As an endometriosis surgeon, we are always comparing ourselves to others. Everything we do we record on video, and we share these videos amongst ourselves both as a process of learning and teaching, and also for reasons of ego, to compare ourselves to others and judge what we have achieved over time in skill in ability. Some might deny this last part, but I think its true fairly universally, and its quite natural. In truth, perhaps the surgeon that worked with Ms Dunham did a great job and there is nothing more to do. I’d love to see the video of what was done.
In the past, the majority of physicians operating on endometriosis did what was called ablative surgery. This surgery involved using various energy sources to superficially coagulate endometriosis implants that are on the peritoneum, or the inner skin of the abdominal and pelvic cavities. This technique is relatively easy to learn, not particularly dangerous to the patient, and moderately effective in relieving pain from endometriosis, if only temporarily. In the 80s, pioneering surgeons such as Camran Nezhat and David Redwine suggested that instead of ablating disease, we should entirely resecting (removing) the peritoneum and the endometriosis contained in it, to achieve lasting symptomatic relief. In some cases organ tissue may even be removed, including bowel, bladder, and ureter, with appropriate repairs to restore function. At first these pioneers were treated as radicals, but over time their techniques became much more accepted, and to some extent, more widely practiced. The pioneers themselves went from being criticized to being lauded for their contributions. The problem was that their techniques were very technically challenging, and involve entering into spaces in the body where most gynecologists are not comfortable. So while more and more physicians accept endometriosis resection as the optimal treatment, there are still a very limited number that have achieved the skill to do it. And thus, its hard for a patient with endometriosis to find someone who is really skilled in the management of the disease.
So why is so hard to find a physician skilled in endometriosis resection? It is a complex problem, because it is a complex surgery. Gynecologists spend four years of training after medical school learning obstetrics, office gynecology, and surgery. The first two years of their training is almost entirely about the care of pregnant women and the delivery of infants. In the second and third year of training gynecology residents start to learn basic surgery techniques, and in the fourth year start to do more advanced things. By and large, very few residents get significant exposure to endometriosis resection techniques in their residencies, and if they do its probably not enough that they are comfortable pursuing such techniques in unsupervised practice. And to top it off, most 4 year trained gynecologists have seen a lot of failure in the treatment of endometriosis, leading them to generally not like taking care of the disease. I was there myself in the early part of my career, only developing an affinity for caring for the condition as I developed the skills to effectively treat it.
Endometriosis resection involves entry in the retroperitoneal spaces, the space between in the inner sac of the abdomen and pelvic cavity and the meat and bones of our abdominal walls. Through this space passes the huge vessels of the body, and the large nerves that control our muscles and limbs. These structures, to a surgeon who is not regularly operating in these spaces, are scary. Injuring one of them will really hurt the patient, maybe even kill her. So a surgeon who isn’t very experienced in this type of dissection generally isn’t comfortable trying to do this kind of work. In the end we operate to help patients, and if we are afraid we will hurt the patient with what we are doing, we can’t operate effectively. As such, there is a fair bit of relatively ineffective surgery performed for endometriosis.
Only a subset of gynecologic surgeons achieve the skills and experience to safely do thorough resection of endometriosis. Most of this subset are the gynecologists that went on to do subspecialty training in gynecologic oncology. Oncologic surgery routinely involves entry into the deep retroperitoneal spaces in the pelvis, and every gynecologic oncologist thus has the skill set to effectively treat endometriosis. The problem is that gynecologic oncologists are generally interested in cancer, and generally not interested in building a practice around endometriosis. So you have a population of surgeons who have the skills to be excellent endometriosis surgeons, but generally not the desire to do that. Another subset is the cadre of gynecologists who go on to do fellowships in Minimally Invasive Gynecologic Surgery, a relatively new training program that seeks to expose fully trained OB/GYNs to more advanced surgical techniques, setting them up for careers as referral based gynecologic surgeons. While all of these fellowships advance the minimally invasive skills of the fellow, only a subset of these fellowships deeply expose the fellow to advanced techniques in endometriosis management. So between OB/GYNs, Gynecologic Oncologists, and MIS trained GYN Surgeons, you still only have a small number of people with the combination of skill and desire to be effective endometriosis specialists.
I started on my road to being a referral based endometriosis surgeon about 7 years ago. I had a strong affinity for surgery and a had a busy practice, but I found that there were certain surgeries that were above my head anatomically and technically. It bothered my that I wasn’t able to offer what my patients needed, and that sometimes my patients weren’t getting better, or only temporarily so. My life situation at the time allowed me to make a major change, so I dropped out of full time academic practice and went back to school, entering a fellowship at Emory University. The fellowship was actually more of an oncology fellowship than a minimally invasive fellowship, but it gave me exactly what I needed to fill the holes in my knowledge and technique. I did oncology cases three or four days a week for a long period of time, and it was transformative for me as a surgeon. Subsequent to the fellowship, now as Minimally Invasive GYN faculty at Emory, I was fortunate to be able to see a tremendous number of endometriosis patients, and to collaborate with outstanding colorectal and urologic surgeons in the combined management of complex cases. Over those years I achieved the skills I needed to be able to really help endometriosis patients like I never could before, and to be comfortable with the complex and technically challenging procedures that can benefit them. I also was able to collaborate with the wide variety of non-surgical providers that can be collaborative with endometriosis surgeons, such as acupuncturists, physical therapists, and psychologists. I can say that this was a lot of work, a lot of time, and a lot of dedication to a difficult craft.
So it is difficult to find doctor who is really skilled in endometriosis. We are rare. Some of my colleagues in the endometriosis world have decided to capitalize on the rarity of their skills and charge high fees outside of the insurance system, further limiting access. I can’t really blame them, but it isn’t the path I have chosen for myself at this point.
And so when I read Ms Dunham’s article, my heart went out to her. She seems to really be struggling, and I have to wonder if she is really getting the best care. There are characteristics of her story that make me wonder if she is not. I sent a note to her publicist but never heard back. At the very least, with the severity of what is going on she would do well to have at least one second opinion. I’d be happy to take her call.
Dr Fogelson practices with partner Dr Richard Rosenfield at Pearl Women’s Center, a subspecialty gynecologic surgery practice in Portland, OR.