By Dr. Paul MacKoul
It happens all too often, and it needs to stop.
Female patients, in their mid-30s and early 40s – sometimes newly married and trying to conceive – find out there is little to no chance that they are fertile. There seems to be an endless flow of misdiagnosed and poorly treated patients, who come in to our office for consultations only to hear that there has been a “delay in care” in the management of their endometriosis or fibroids.
Delay in care is, in fact, mismanagement of fibroids and endometriosis, and the result is often infertility. Further, these mature patients begin to realize that their fertility chances are decreasing with time due to deteriorating egg quality. To make matters worse, both of these conditions can cause persistent and incapacitating pain and bleeding with a major impact on lifestyle and normal daily function.
Endometriosis is especially vicious in its progressive and debilitating pain. This pain is often so bad that its victims miss days at work, outings with their families, business meetings and weddings. Their vacations are cut short or miserable around their cycle. It is not that the patient has not complained to the OBGYN about the pain and bleeding; these patients continue to seek help and are told that the pain is simply part of being a woman. The OBGYNs often tell them there is nothing that can be done except to use more pain medications.
This OBGYN concept of managing the symptoms of endometriosis, but not treating the problem early, results in progressive disease requiring the use of narcotics to control pain that most OBGYNs could not even imagine. Additionally, birth control pills, which are routinely passed out by OBGYNs as the way to manage endometriosis, only provide short-term relief, at best. OBGYNs must be educated that endometriosis needs to be diagnosed first, then treatment started dependent on the stage of disease. Birth control pills are not a “one size fits all” solution for all stages of this disease.
Laparoscopy, also known as minimally invasive surgery, diagnoses endometriosis as the cause of pain, and then removes disease and “stages” it. This helps the pain and in some cases helps with fertility. Most importantly, the patient finally has a diagnosis, and understands the impact of the disease on fertility. Sounds like a simple solution. Unfortunately, more often than not the OBGYN does not use laparoscopy to make the diagnosis. And when they do, their lack of surgical skill results in a procedure that, in the vast majority of cases, does not remove all of the disease.
Fibroid management by OBGYNs is typically just as damaging to the patient – as most patients are faced with pain, bloating, distension, frequency of urination, back pain, pelvic pressure and heavy, heavy bleeding, resulting in fatigue and anemia. Finally, when the patient receives an ultrasound, despite years of pelvic exams that have missed the problem, the truth is revealed: massive fibroids that have been allowed to grow by the “watch and wait” approach. By now, though, the uterus is almost destroyed by all these fibroids – sometimes hundreds of them – and the patient might want to become pregnant.
So how does all this mismanagement impact the healthcare system with regard to cost?
Non diagnosis or misdiagnosis is common to both. To be more specific, analyzing the way this mismanagement unfolds during long periods of time shows the impact more clearly.
1. The referral “out”.
With an unknown diagnosis for pain, the OBGYN often orchestrates a search for pain involving referrals to urology, gastroenterology, and others. The result is unnecessary imaging and procedures that do not yield a diagnosis but dramatically increase costs. Meanwhile, the endometriosis progresses.
With endometriosis, the ultrasound is normal due to the inability of this test to detect “small volume” disease. Additional imaging tests are often ordered to identify the source of pain such as CT scans and MRI exams. Imaging for most cases of endometriosis is ineffective, can increase exposure to radiation, AND it delays care and dramatically increases costs. For fibroids, when an ultrasound is finally done it often reveals extensive fibroids. Inexplicably, the OBGYN then precedes with a “watch and wait” approach allowing the fibroids to grow to two, three or four times their size with repetitive ultrasounds being performed often for years after the diagnosis has been made.
3. Pain Management
Time goes by, and the patient has no answers. With increasing pain and frustration, narcotics often come into the picture to relieve the pain. Drug seeking comes into play, jobs are lost and families are destroyed. Currently, the U. S. is experiencing an epidemic of narcotic use and abuse that is unprecedented. Certainly, mismanagement of fibroids and endometriosis, with progressive pain and narcotic abuse, is contributing to that.
AND THEN COMES INFERTILITY. After all those referrals out, multiple imaging studies, progressive disease with watching and waiting, and the sacrifice of precious time lost, infertility now becomes a reality. In the vast majority of patients with endometriosis and extensive fibroids of increasing age, in vitro fertilization (IVF) is a certainty. In the U.S., IVF is a ridiculously expensive proposition, costing many times more than in other countries. Realize that often several cycles of IVF are needed in many of these patients, ranging in cost between 15 and 25 thousand dollars per cycle. And in many states it is not covered by insurance, so the patient has to pay out of pocket. Many simply cannot afford to get pregnant. A reproductive endocrinologist once told me that without endometriosis and fibroids, he would have no income and no practice. I would have to agree.
If this all sounds too dramatic to be real, I assure you that this is truly what is happening to these patients. We see it every day. In addition to all the cost issues mentioned above, think about the healthcare costs associated with loss of work and disability, and then loss of productivity. Think about how this can affect individuals and families. It is clear that the healthcare costs associated with the poor management of both of these conditions is staggering.
From the purely business perspective, ask yourself this question. How would a CEO of a company that managed and treated endometriosis and fibroids solve this problem? Simple, he or she would fire the OBGYNs. They would be replaced with specialists that know how to diagnosis and treat these conditions. In today’s healthcare system that is not possible. Education of the OBGYN is one solution, but these physicians are too Obstetric-centric and just do not have the time or surgical skills to treat these patients adequately.
The burden of finding and getting adequate care falls on the patient. Patients have to be their own best advocates. They need to understand the disease process, and seek the help of a specialist to ensure the best care possible.
It may be that companies need to protect their employees from the burden of pain, infertility, loss of work, and the financial costs of mismanagement of these conditions. Company sponsored educational seminars are a very reasonable and inexpensive option to provide information to employees, and are very much appreciated. These types of interactions are natural team builders, and often create commonality among employees with similar healthcare issues. Physically healthy patients are more productive, and emotionally secure patients are long term assets for any company. Women and men alike need to understand the symptoms of these conditions, and must be their own best advocates to ensure that early and expert care is available to them. After all, the physical, emotional, and financial health of the individual, or the family, is in jeopardy.
Dr. Paul MacKoul is Laparoscopic GYN Surgeon, Co-founder of The Center for Innovative GYN Care.