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Endometriosis…it’s a real beast and should not be ignored!

Ok ladies, let’s talk about endometriosis. First of all, what is it and why should we care? For those of you lucky ones who don’t know. Endometriosis is a disease where implants of endometrial tissue set up shop all over the body, especially the pelvis and cause pain and painful and heavy periods. For most of us, while most of that endometrial lining sheds out our vaginas during our periods, some of it backwashes up through the fallopian tubes into the pelvis, where nothing happens and it just shrivels up and disappears. In the right unfortunate person, those implants set up shop wherever they want and the havoc ensues. Did you know, that endometriosis behaves almost like a cancer? It can travel through the bloodstream and end up anywhere? We don’t call it cancer because it does not kill you, but it is just as awful. I have even seen endometriosis in brains and lungs! What the hell?!!!

So, how common is it? At first glance, the stats say that it can affect one in ten women. It doesn’t sound like much at first, but when you elevate that to a global level and take into account every country and continent, that amounts to about 190 million reproductive age women who are affected at any one time! Ok, that is a crap ton.

How do you diagnose endometriosis? I have people coming in to see me all the time saying that they know that they have endometriosis and that their doctor told them. I then ask them how they know and what tests that they have had. Most of the time, they haven’t had any or they had one usn and were told that endometriosis was seen on that. AAAAANGH. I am pressing the no buzzer on that one. Besides the instance when you have some gigantic ovarian tumor cluster of endometriosis, you cannot see anything on an ultrasound so that is just not true. The only absolute way to diagnosis endometriosis would be to have a positive biopsy of a lesion or the peritoneum. The other way is to visualize lesions on a laparoscopy. The other possible way is to get a really expensive mri of the pelvis that could possibly see possible lesions that could possibly be endometriosis…or something else. On top of that, sometimes when you do get a biopsy of what appears to be normal appearing peritoneum, 20 percent of the time it could be endometriosis hiding underneath. It is a really sneaky bugger. The realy key is a tissue diagnosis but if I see a bunch of visible classic lesions on laparoscopy, I am going to go for it and treat it.

So, what can we do about it? The ultimate goal in treating endometriosis is removing its hormone food source. That’s right you guessed it ladies. The ovaries themselves provide its main food source. This means that the ultimate permanent treatment for endometriosis is to remove everything: the uterus, cervix, the tubes, and the ovaries. You can also ablate lesions individually or resect them. But, it is practically impossible to remove them completely forever. This usually means a significant surgery with a significant scar and significant down time. On top of that, you are thrown into instant surgical menopause overnight instead of the 6 months to 2 years that it normally takes. Bring on the hot flashes, night sweats, increased farting and bone loss…overnight! Yikes! But at least then it is gone for good, usually about at 6 months after surgery when the last of the hormones have washed out of the system and the microscopic implants that you could not see have resolved.

Now, we have some medical options as well. The old standard was Lupron, an injectable, every month to every three months GnRH analog that shuts down hormone production and puts the patient into medically induced menopause. It can be used for a maximum of 6 to 12 months and maybe can be repeated later if symptoms reoccur. It is expensive and the side effects are kind of awful. We now have more modern oral meds like Orilissa(elagolix) and Myfembree(relugolix). Orilissa is a GnRH antagonist like an oral version of lupron. It also has a bunch of side effects and is not recommend to use beyond 2 years. Myfembree is also an oral med which has some estradiol and norethindrone in it so the menopause side effects are less while still being able to control the endometriosis. It can also be used up to 24 months. It was originally invented to treat fibroids but I have found that it is pretty successful for endometriosis too. Both are costly and you have to jump through multiple hoops and hurdles to get them covered. But, when they work, they can be a real bonus for the patient.

Bottom line is, endometriosis completely sucks, but now there is more than one option out there. Make sure you seek out a physician who is willing to put the time in to help improve your quality of life and help treat the endometriosis in the best way possible and treat you like an individual and be mindful of your particular goals. If you can’t find one near you, come see me. I got ya covered.

Dr. Katz