Expert Interview

Endometriosis: Whole-Body Effects, Treatments and Infertility

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How does endometriosis affect the whole body, and how often is it misunderstood for another condition?

Dr. Taylor: Far too often, we think about endometriosis as just a cause of bad menstrual cramps. So many times, we miss the signs and falsely attribute symptoms to other diseases. I cannot tell you the number of people who have seen multiple practitioners for other conditions, when the underlying problem was actually endometriosis.

Endometriosis affects the whole body. It can affect the intestines, the bladder, and body weight, and the brain and mood. Endometriosis causes fatigue and inflammation, and in the long run it can lead to an increased risk for cardiovascular disease. When we as physicians do surgery or laparoscopy, we find these little blue and brown lesions in the pelvis, and they certainly do cause pain, but that is not the whole disease.

Endometriosis heightens pain and nerve sensitivity for patients, and we should not dismiss the debilitating effect of these symptoms. Things actually do hurt more. In fact, the pain can spread from beyond the time of the menstrual period and spread to other areas besides the uterus.

We cannot ignore the totality of the effects of the disease and only focus on one part of the problem. More importantly, we cannot be distracted and discount endometriosis or mistake it for another condition. I have seen many patients who went to a gastroenterologist first and may even have had a colonoscopy because of some bowel symptoms, but then we come to find out it was endometriosis irritating the bowels at the time of their period and not another primary disease.

Another example is that the patient may see a urologist and have a cystoscopy to assess bladder pain, especially if the pain comes on around the time of menses. However, that pain is probably due to endometriosis irritating the bladder, not a primary bladder problem.

I have even had patients who were sent to a psychiatrist first because of anxiety that was actually being caused by the endometriosis. It is important to understand that treating the primary problem—endometriosis—should be our focus.

Which effects of this chronic disease can have the most long-term impact?

Dr. Taylor: It is important to understand that endometriosis has long-term effects on the entire body. For example, it affects the brain, increasing anxiety and depression. It causes pain sensitization, fatigue, and body inflammation. Endometriosis can also damage blood vessels or cause atherosclerosis.

A quick diagnosis is crucial because often this disease affects women at the most critical points in their life—either when they are in school, or in the early part of their career, when they need to be able to focus. It is important to get their endometriosis under control early and prevent long-term complications. Unfortunately, the long-term impacts are an aspect we do not focus on enough.

Infertility is another common long-term consequence of endometriosis. The sooner we can diagnose endometriosis, the sooner we can begin treatment and the more likely we can preserve someone's fertility. Our goal is to catch endometriosis early enough, preserve the patient’s fertility, and prevent any damage, so they hopefully will not have trouble getting pregnant or need medical intervention to get pregnant.

What methods do you use to diagnose endometriosis as quickly as possible?

Dr. Taylor: The sooner we can pinpoint the correct diagnosis and begin treatment, the more we can not only relieve patients of pain, but also stop that inflammation and all of these other manifestations of endometriosis so that they are not saddled with this for life.

We used to say you needed a laparoscopy to accurately diagnose endometriosis, and that statement is still true. You cannot see the most common types of endometriosis on an ultrasound or MRI. The endometriosis has to be pretty bad before you see it on an MRI or an ultrasound, and at that point it is often a big cyst in the ovary or a big nodule that is invasive.

However, you can diagnose endometriosis just by listening to your patients. If they have extremely painful menstrual cycles, dysmenorrhea, or painful menstrual cramps that get worse over the years, the problem is most likely endometriosis. You can rule out a few other things, and you can make that empiric clinical diagnosis of endometriosis. You can know with confidence that somebody likely has endometriosis. The treatments are benign. The first-line therapy would be to try a birth control pill. If we had to perform a laparoscopy before beginning endometriosis treatment, I think we would be doing our patients a huge disservice.

In addition to birth control pills, what are the most common therapeutic treatments you use in day-to-day practice?

Dr. Taylor: Birth control pills are still the first-line therapy. We use birth control pills because they are easy, well-tolerated, and inexpensive, but about a third of women will be resistant. Birth control pills are a great option when they work, but they do not always work 100% of the time.

We have a couple of other hormonal treatment options. Rarely, but occasionally, we use something called danazol, which is a mild male hormone. Side effects can be acne or hair growth, but it works well and is inexpensive. We used to give injectable agents, like leuprolide. Leuprolide is a harsh medication with once-a-month injections, and it puts someone in a temporary menopausal state with hot flashes and the possibility of decreased bone mineral density.

Today, we have the new class of GnRH antagonists that are a milder, gentler version of those injectable medications. They are oral, and you do not have to fully suppress estrogen levels all the way down to menopause. Patients can take the GnRH antagonists, stop treatment, and try to get pregnant at their next cycle.

Occasionally, we find that someone does not respond to any medical therapies, so surgery still has an important role. The usual reason for surgery is that you may suppress the active disease with medications, but the old damage is still there causing some pain, which can only be removed with surgery. Surgery is a good way to relieve that pain and it helps improve pregnancy rates for people with endometriosis wishing to conceive.

What does the future look like for endometriosis-related infertility, particularly related to in vitro fertilization (IVF)?

Dr. Taylor: We currently have an IVF trial in the works, in which we are using a hormone-suppressing GnRH (gonadotropin-releasing hormone) antagonist, elagolix, which suppresses endometriosis. The medication is administered before IVF. The goal is to determine if this approach leads to a better pregnancy rate in IVF cycles.

We are also working on nonhormonal medications in the laboratory, but these strategies are not yet ready for human clinical trials. These laboratory trials are investigating the basic biology of endometriosis, with the goal of learning what makes endometrial tissue grow in the wrong place, what makes it grow aggressively, and how it signals to other organs to cause damage.

We are looking at some additional nonhormonal medications that may possibly be used in someone trying to conceive, so that we can increase their chances of becoming pregnant. We are testing these medications in mice, but eventually we hope they progress to human clinical trials. The future for endometriosis therapy is nonhormonal treatments that can be used in somebody trying to conceive. That is what we have on the horizon.

Unfortunately for people with endometriosis wishing to conceive, all the classic first-line medications used to treat the condition are reproductive hormones that interfere with the ability to become pregnant. When we stop these medications, many women with endometriosis get pregnant spontaneously always suggest patients with endometriosis wishing to conceive try this approach, unless we know the endometriosis is very extensive. However, IVF is a good way to correct even the worst cases of endometriosis. As long as somebody has not waited until they are in their 40s and they have run out of eggs, IVF will usually correct endometriosis-related infertility.

Overall, how we treat endometriosis has been revolutionized and we have much better options than we had just 5 years ago. In my day-to-day practice, I recognize the importance of talking more openly about endometriosis, understanding the different symptoms, and not dismissing those connections. We should be able to talk about this important medical problem and all of its manifestations. I published a paper in The Lancet at the end of 2021 about the concept of endometriosis as a systemic whole-body disease and its effects. I think open conversations with patients about endometriosis is making a world of difference for the women with this disease.

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