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It feels like being stabbed with a knife, like fireworks going off inside of your body, thousands of tiny paper cuts, so acidic it ate through my bowels. This is endometriosis in the words of the women who suffer it. My symptoms started kind of out of nowhere. I was driving to work one day, had this really intense pain in the right upper side of my stomach that was like stabbing, take your breath away kind of pain. And had to go to the ER when I got to work. Ran a bunch of tests that came back negative, and then month after month, this pain just kept coming back without any idea of where it was coming from or what it was caused by. The first endometriosis like symptoms were described in ancient medical text almost 4,000 years ago. Today, it affects 1 in 10 people assigned female at birth. Which is roughly the amount of women who are affected by diabetes in the United States. And think about how much awareness there is about diabetes versus endometriosis. On average, it can take 7 to 10 years to get a diagnosis. Some people may not experience any symptoms at all, while others may experience anything from fatigue to severe pain during menstruation, intercourse, or even bowel movements or urination. Because these are common symptoms of many diseases, doctors who aren't trained to look for it may overlook or misdiagnose endometriosis. To diagnose endometriosis, a doctor will ask questions about symptoms and where you feel them. A doctor may also need a pelvic exam or order an MRI or an ultrasound. But the only way to definitively know if you have it is through laparoscopic surgery, where tiny incisions are made to literally peer inside your abdominal cavity. How has something this painful that's affected so many people for thousands of years been overlooked for so long? Well, it's no secret. In the medical field, a woman's pain has historically been overlooked. Pelvic pain and pain for period-related things is kinda normalized. So a lot of people are told that pain around that time of the month is expected. And so it's kind of just not taken as seriously as it should be. In the 17th century, doctors used the term "hysteria" from the Greek word for uterus as an actual medical explanation for women's health problems that they didn't understand. Today, some doctors, even some gynecologists who don't experience menstrual pain don't believe women who do. This can create a toxic environment where women seeking help are getting their symptoms dismissed. I always went in prepared to make my case. I knew that I had to be convincing and that incredible down to like, even if I felt really terrible, making sure I like looked put together so that I was taken seriously. I went into every appointment just like like ready to have to fight for what I knew I needed. So what is endometriosis? Endometriosis is when cells similar to the ones that line the uterus go haywire and end up in places where they don't belong. In a typical monthly menstrual cycle, the uterus grows about a centimeter of spongy living tissue called the endometrium. It's a nice cushy place where a fertilized egg can land to start a pregnancy. But if the egg doesn't become fertilized, the endometrium sheds, and we know that as menstruation or a period. But in endometriosis, cells like the ones in the endometrium are found in weird places like the ovaries, fallopian tubes, or the tissue that lines the pelvis. In even rare cases, they can be found in brain, lungs, even skin. Now, each month, these misplaced cells respond to the same hormones that influence the menstrual cycle, building up and breaking down, just like the endometrial lining of the uterus during a period. But unlike a period where menstrual blood can exit the body, this tissue remains trapped and causes inflammation in surrounding areas. The body responds to this in different ways. I've invited my friend and expert, Dr. Karen Tang, a gynecological surgeon to share what she sees in the bodies of patients with endometriosis. So sometimes in early stages of endometriosis, the lesions can actually be kind of hard to see. So the classic appearance of endometriosis is what we call powder-burn lesions or dark spots. However, oftentimes in early endo, it can be clear blisters, little white spots, or sometimes not even a lesion, but actually little holes or breaks in the tissue. As the disease progresses, it can start to grow underneath the surface and form nodules. What's called deep infiltrating endometriosis, just as it sounds, that the disease is starting to grow into the structures underneath the surface. So in its worst form, what we call stage four endometriosis, it can also start to grow into other organs such as the rectum, the bowel, the bladder, the ureters. And as everything becomes inflamed, things can start to stick together. Severe endometriosis can also take the form of cysts of the ovaries or what's called chocolate cysts. They're named that because they have what looks like chocolate syrup inside. And it's basically old endometriosis and blood. With all of that scar tissue and distortion of the anatomy, this is where things like impact on fertility can happen. So for instance, the ends of the fallopian tubes can become scarred closed, and that can cause problems becoming pregnant. And then the inflammation of endometriosis can, in and of itself, affect your egg pool and your fertility. Now you see why this disease can be so painful. But what are the treatment options out there for people with endometriosis? Well, for some, pain medications can help reduce symptoms. And if you're not looking to get pregnant anytime soon, hormone treatments like the pill or an intrauterine device work by adjusting the levels of reproductive hormones in the body, which slows the growth of endometrial tissues. This can help reduce pain by making your period shorter and lighter. Birth control helps reduce the symptoms of two thirds of people with endometriosis. But that means that one third of people are still left looking for more options. But those other options come with some risk. Gonadotropin-releasing hormone or GnRH causes the ovaries to make progesterone and estrogen. Medications that regulate GnRH can reduce pain in some people by shutting down the ovaries and stopping the menstrual cycle, effectively throwing the body into medical menopause. But it can cause bones to become weak. And if that's not enough, surgery is still an option. Dr. Tang, can you tell us more about what surgery entails? There's an old myth that the treatment for endometriosis is a hysterectomy, or a surgery to remove the uterus. That's actually not true. In fact, a lot of doctors still believe this myth. The exception is, for people who have something called adenomyosis, which is endometriosis of the uterine muscle. So the actual treatment of endometriosis is laparoscopic excision. Laparoscopy is minimally invasive surgery where we make small incisions in your abdomen. We fill your abdomen with gas so that we can see, and we put a camera in and use instruments basically to cut out the endometriosis where we see it. What we're cutting out is usually something called peritoneum, which is a clear coating that covers all the structures of your pelvis. So we pick it up and we cut it out. And then we send that tissue to the pathologist. They look under the microscope and they say, "Yes, it's endometrial tissue." So that's both the diagnosis, how we find the endo, and how we treat it. There's another approach, which is called ablation, which is basically burning the tissue. So a lot of endometriosis experts prefer not to use that technique for several reasons. One is that it's just safer to cut it out. If you're burning, the heat from the burn can actually damage structures around it, including the other organs like your bowel or your bladder. And then the other is that if you just burn it, there's no pathology specimen. So you don't actually know if that spot was endometriosis. And then the third reason is that you have to make sure that there's not deeper disease. So if this is on the surface, you could burn on top but miss the rest of the disease that's underneath. So it's just more comprehensive, it's to make sure that we have found and removed all the endometriosis. And something people don't know is that endo is not just a woman's problem, right? No, it is only found in people who are assigned female at birth, but people who are transgender men or non-binary can still have endometriosis. In fact, transgender men who are on testosterone and not even having periods anymore can still have endometriosis and endometriosis pain. So I operate on a lot of transgender patients. And every year, I diagnose a few people with endometriosis, even if they have not had a period for years. Thank you, Dr. Tang, for your insight. Now, while excision does provide the best chance for a long-term fix, it's not that easy of a surgery. Removing advanced stages of this disease can be as difficult as cancer surgery. Unfortunately, medicine needs more highly skilled surgeons like Dr. Tang. People often have to travel sometimes out of network for these surgeries. And insurance companies don't always fairly compensate surgeons for the highly intense work that needs to be done, leaving patients to pay out of pocket. And right now, endometriosis research is notoriously underfunded. The National Institutes of Health's budget is $45 billion in the 2022 fiscal year. Of that, the estimated funding for endometriosis research is only 21 million, which is less than a 10th of a percent. Back pain gets almost four times as much. What's up with that? Well, don't lose hope now. There's also a growing awareness in healthcare that doctors need to do more to treat endometriosis. And in March of 2022, President Biden signed a bill that would increase federal funding of endometriosis research by $92 million. There's organizations like EndoFound and the Endometriosis Association providing support and research. And there's people out there like Dr. Tang and Jenneh Rishe who are advocating for more awareness about the disease. We need a lot more training programs, a lot more funding, a lot more funding for research. There is a long way to go in order to make sure that every endometriosis patient around the world has access to the care that they deserve. I think social media has helped so much in patients getting information, kind of this crowdsourcing of information. I started sharing about my endo journey in 2016. So to see from then when people didn't really know what the disease was and what I was even talking about to now in 2022, there are so many advocates online in different organizations and just people sharing their stories so that others understand. It's really amazing. And with advocates out there making their voices heard, hopefully, we'll see progress for a cure. You can help build awareness for endometriosis by sharing your story. Someone out there can relate. Or if you have any questions, we're here to help. And be sure to follow both Dr. Tang and Jenneh Rishe on social media to learn more.