Endometriosis is a real beast. It can spread everywhere and literally ruin your life if you let it. This is a real universal disease that affects millions and millions of women all around the world. Outside of the United States, it appears that the rest of the world gets it. There are countries that have created award-winning films about it. There are some countries, like Portugal that have even put into law paid time off for endometriosis issues. Then you have the United States, where women go undiagnosed for years and years and women just go on suffering with no solutions.
So, let’s talk about what endometriosis is. Endometriosis happens when menstrual blood flows retrograde out of the tubes and then implants wherever it wants throughout the body. It travels through the bloodstream like a cancer. I have seen endometriosis even in the brain and lungs, not just in the pelvis. It spreads like cancer but doesn’t actually end lives, it just ruins them. It causes pain and heavy periods that are so intense it is debilitating. We still don’t understand why some patients only have one apparent spot in their pelvis and they are debilitated and others have a pelvis full and don’t even realize they have it.
The bottom line is it deserves our attention. I am so happy to see organizations like endofund lately that are actually bringing more attention. I am also glad that multiple celebrities are admitting their own struggles with endometriosis, which has gotten it more attention as well. I am here to tell you right now, endometriosis has mattered all this time even before we knew celebrities had it.
Let’s talk first about how to diagnose it. The first key is LISTENING to the patient! You need to take a thorough compassionate comprehensive history and hear what the patient has to say about their pain, how intense it is, how long it lasts, what aggravates it and where they feel it and if it’s correlated to their period at all. You need to do a comprehensive exam including a pelvic exam and do an ultrasound as well to assess for any additional cysts or endometriomas of the ovary. No, you cannot officially diagnose endometriosis with an ultrasound. You can somewhat suspect it with an expensive mri but the best way to diagnose it is to actually perform a laparoscopy on the patient and be able to see a suspected spot and biopsy it. Here is the trick here. Not all endometriosis looks the same. It can be white, red, black, brown or blue. It can just look like normal peritoneum and 25 percent of the time if you biopsied anyway you would find endometriosis. You also have to look for those empty holes in the peritoneum as well. You also have to look for adhesions that are cobwebby in nature, even if you don’t see a lesion. You put that information together with the patient’s history and physical exam and there’s your diagnosis.
Now, what do we do from there! Well, first, you sit down with the patient personally and validate all their pain and symptoms and let them know that you have found an answer….and have possible treatments! This is a key in their recovery and path to better health. They need this initial validation to even begin to heal. They need to realize that someone has listened and is willing to attempt to help them. I have had patients in tears of joy when I finally gave them that diagnosis that they have been suspecting for a long time, but no one else had looked.
As far as the treatments go, there are several now. The old fashioned method was to go in and resect as much as you could with laparoscopy. The myth out there is that all lesions can be resected. This is not true. Up to 25 percent of the time, normal appearing peritoneum would show endometriosis if biopsied. Also, endometriosis will continue to be fed as long as functioning ovaries are present. So, unless you are removing both ovaries, the food supply remains and more endometriosis will grow even if you resected what you saw at the time of laparoscopy. This is not a promise you should ever make.
I think the role of the laparoscopy should be some resection and ablation, but mostly for diagnosis. There are meds for endometriosis as well. I keep reading about how we are on the verge of a breakthrough, but I am here to tell you, that these meds already exist. There is the traditional expensive lupron, which is a monthly injection that throws a women into instant chemical menopause and can only be used for six months due to bone loss and intolerable menopausal symptoms. There is the oral medication Orilissa, which is an oral daily version of the lupron which also throws a patient into chemical menopause, so has limited use as well. However, there is a third option called Myfembree, which was initially marketed as a medicine for fibroids for patients who wish to keep their uterus. However, it is really a version of Orilissa with hormones added back in so it can serve a dual purpose of suppressing the endometriosis and a use as a birth control as well. In the United States, it has a two year limit of use, but the rest of the world realizes that it can be used indefinitely. I personally am using it indefinitely in my patients with no consequence other than the fact that their pain is gone and their quality of life is restored. If they chose to pursue pregnancy, no big deal. They stop the Myfembree and it goes out of their system, they conceive then the endometriosis is suppressed by the progesterone of the pregnancy itself. Basically my plan is to keep them on it until they transition into menopause when the ovaries stop working and the endometriosis resolves. Thus far it has worked wonderfully and I have had patients even with infiltrating rectal endometriosis that are doing well!
My bottom line is this. Endometriosis deserves our attention. These women deserved the right not to suffer. I think a single procedure only is the key to diagnosis and then we can let medication take over. Yes, the medication can be prices but there is a solution to this as well. Myfembree.com is an excellent resource for coupon cards that should cover up to three months of medication. Then, you can pursue getting another card. Yes, there are often prior authorizations involved, but that is part of our job as physicians. Believe you me, the smile and the satisfaction on a patient’s face and watching them return to their lives is very much worth it.
Have a great day everyone!