The conversation surrounding endometriosis has greatly increased over the last few years. More and more well-known women have opened up about being diagnosed and struggling with it. And one out of 10 women in the United States have been impacted by the disorder.
While we’ve heard of the pain, which has contributed to the large number that is 600,000 women undergoing hysterectomies each year according to the CDC, there’s a lot more to this condition than that. March is the perfect time to learn more because it’s Endometriosis Awareness Month. We wanted to know the the ways in which endometriosis affects fertility, the theories about why it comes about in general, and if it’s true that endometriosis doesn’t just affect the pelvis, so we talked to Zaher Merhi, M.D. He is the director of research and IVF technologies at NYC’s New Hope Fertility Center. He answered all of our questions related to the disorder, beginning with why it’s so hard to identify and treat endometriosis.
“It’s so hard to do because diagnoses are done pathologically, by tissue biopsy,” he said. “It’s not something that you can say, ‘Okay, well let me do an ultrasound and diagnose endometriosis. Someone needs to do surgery, laparoscopy most of the time. Go inside the belly, take tissue, send it to the pathology, and wait for the results in order for you to kind of get a diagnosis. A lot of time we can have suspicion of the diagnosis due to the symptoms, but it’s almost impossible to know if someone has a diagnosis without surgery.”
The process of getting that tissue usually requires the patient to be sleeping so that tissue can be retrieved from the abdominal wall. According to Merhi, “it’s like a minor surgery.”
As for what symptoms lead people to believe they have endometriosis, it’s the inflammation that causes pain, typically in the pelvis.
“They usually have a lot of pain, mostly pelvic pain, a few days ahead of their period,” he said. “And when they get their period, the pain sometimes can be so severe that they cannot even stand up to go to work. The endometriosis is the response to hormones, and it’s a tissue that has inflammation. Basically, as the hormones go up and down during the menstrual cycle, this is when the patients feel the pain.”
“Fibroids are more localized. They’re localized in the uterus, you know where they are, you can take them out,” he said. “Sometimes you can embolize them and it stops the bleeding. I’m not saying fibroids can not be debilitating either, but the pain from endometriosis can be really bad.”
And while most of us think of endometriosis as also being a localized thing, or a nuisance strictly to the pelvis, Merhi said that the inflamed tissue can travel within the body.
“The endometriosis can be everywhere,” he said. “It can be on the colon, in the bowel, even in the lungs, believe it or not. It can be in locations outside the pelvis. It can even be in the chest in rare situations.”
“We don’t know how it happens,” he added. “There are theories. There is no definite etiology. If we knew how it happens, we could have cured it a long time ago. The fact that we don’t know how it happens is why we don’t know why it happens somewhere else, like in the lungs. But some people think it might go in the blood, and some of that tissue goes into the lungs and starts to grow. It’s a response to the hormones and causes cyclical chest pain. But it’s really unknown.”
Endometriosis can also cause scarring and adhesions, which can impact fertility. Imagine the tissue as something like a web that makes it hard for things to move freely in the pelvis. If sperm and an egg can’t meet properly inside the Fallopian tube, conception becomes more difficult. Also, inflammation around the eggs due to the disorder has been associated with poorer egg quality and impacted implantation.
Overall, it’s not always definite that endometriosis equates to the inability to get pregnant, and people who have it have given birth, but according to Merhi, “There is definitely a correlation.”
But there are options, including intrauterine insemination (IUI). (“Getting the sperm, washing it and pushing it up in the uterus closer to the egg,” he said.)
If that doesn’t work, then it’s recommended that patients try in vitro fertilization (IVF). (“Patients get shots, we suck the eggs out,” he said. “The sperm with the eggs make embryos and we put the embryo back inside the uterus.”)
The necessary procedures depend on the patient, their symptoms and their ovarian reserve.
“If someone has a lot of eggs, yes, you have a lot of time to work with,” he said. “But if someone is running out of eggs, we tend to be more aggressive and jump for IVF immediately.”
But if you’re not necessarily thinking about kids at the moment and just want relief, Merhi has some recommendations for dealing with inflammation, which increases pain.
“There are things that improve the symptoms, like drinking less caffeine, avoiding smoking, avoiding caffeinated beverages,” he said. “Using warm compresses, all that can help the pain.”
There are also overall dietary changes that can be made to reduce inflammation. You can even take anti-inflammatory medication like Motrin and ibuprofen to help. That, along with using birth control to calm hormones by stopping the cycling process, are the most commonly used methods for women.
“There are also some shots, medication that is given,” he added. “They put patients in the menopausal state basically for a short period of time. It’s not a long-term treatment plan,” he said.
When those options don’t seem to be enough, patients opt for surgery to get some of the tissue removed. When all else fails, nothing has been shown to be more fool-proof to deal with the hormones, inflammation and pain than a hysterectomy.
Hopefully though, it doesn’t have to get to that point for you. If you’ve been dealing with some intense pain, you now know the symptoms, affects of and treatment for endometriosis and can begin to make informed decisions to find relief — and peace of mind.