In Your Business with Dr. B: What Exactly Is Endometriosis, Anyway?

Dr. Rebecca Brightman tells us about what the condition entails and how it can be treated

The term “endometriosis” is one we’ve heard a lot lately, especially as high profile celebrities like Lena Dunham and Padma Lakshmi have spoken publicly about their experience living with the condition. But what exactly is endometriosis, and how do you know if you have it? Lucky for us, everyone’s favorite women’s health expert, Dr. Rebecca Brightman, is here to answer all of your questions… and hopefully provide some clarity about a disorder that has long been overlooked by the medical community.

Wake-Up Call: First and foremost, what exactly is endometriosis?

Dr. Brightman: Endometriosis is a medical condition that affects about one in 10 women in the reproductive age group. It’s the presence of what we call implants, or lesions, that are microscopically similar to the tissue we find in the uterine lining, but we find them outside the uterus— the most common location is the ovaries. They can also present as a cyst, which is called an endometrioma. In addition to the ovaries, these lesions can be seen on the bladder, on the bowel, in the back of the uterus, and have even been found as far away as in the lungs. 

Every woman has a uterine lining, and it grows during the course of a normal menstrual cycle. Endometriotic lesions look quite similar to normal uterine lining, and they also undergo cyclical changes during the course of a normal menstrual cycle. So endometriosis will generally first present itself when a woman first hits puberty, because puberty results in the production of the hormones that stimulate these lesions. In theory, even older women, if they’ve had scarring they may remain symptomatic, but it’s more typical that we see symptoms during a woman’s reproductive years. 

Why do some women get endometriosis and others don’t?

It’s not clear why this happens, but we do know the hormones that are part of a normal menstrual cycle are what cause these lesions to become active. There are a couple of theories; one is that there could be what we call retrograde menstruation, where uterine lining tissue flows back through the fallopian tubes. There’s also a theory that these implants just develop out of nowhere. So we don’t know why it happens. Sometimes it’s genetic, but it’s important for women to speak out because as I always say, women are not their mothers. 

How is endometriosis diagnosed? 

Clinicians typically make the diagnosis based on history, and sometimes physical ultrasound findings. The lesions are usually so microscopic that you really can’t appreciate them clinically. A true, hundred percent diagnosis is made surgically, where a biopsy is taken and you see evidence of the implants under a microscope. But we don’t want to subject every woman to surgery to make the diagnosis, so we largely diagnose based on a woman’s history. This includes the duration of symptoms, what those symptoms are, an exam, and family history.

Ultrasounds are also very sophisticated these days. So if someone has a cyst on their ovary that looks like it may be endometriosis, coupled with a detailed history and a medical exam, we can make a relatively accurate diagnosis. 

What are the symptoms of endometriosis?

The hallmark symptom is extreme pain leading up to your period that persists throughout the period. Painful sex is also common. Some women will have bleeding in between periods, and some have bowel symptoms or bladder symptoms. There are a variety of symptoms, depending on the location and the degree of the endometriosis. Sometimes we’ll talk about the stage of endometriosis, but staging is something that can only be determined surgically. And the treatment is not necessarily based on the stage because we don’t always operate on people— more often than not, we treat based on symptoms. 

But it’s important to note that the difference between endometriosis and just typical cramping pain is that with endometriosis, the pain is debilitating. Women who have it may frequently have to miss work, or miss school. It interferes with your quality of life, whereas with regular cramping, you can take a non-steroidal like Advil or Aleve, and cramps will go away. That’s not typical of endometriosis. 

It can take up to 10 years in some situations for a woman to be accurately diagnosed, which is so unfortunate. I think that’s why there have been many efforts made recently to raise awareness about this. A lot of celebrities have spoken out, because they want to make women aware of this disease so that they can approach their health care professionals and be accurately diagnosed and treated. 

Can you tell us about different treatment options?

At the start of one’s period, or even the day before, start to take a non-steroidal  anti-inflammatory such as ibuprofen or naproxen, if tolerated, to minimize symptoms. That’s the first approach.  For women with really debilitating symptoms, if there aren’t any contraindications, hormonal contraception can really help, because it suppresses ovulation and creates more of a steady hormonal state. So this can be a birth control pill, it can be a ring, it can be an implant, it can be a patch or even an IUD. This won’t make previous scarring go away, but it can halt the progression of the disease. 

Barring any contraindications, women can stay on hormonal contraception through menopause. I think it helps facilitate the menopause transition to keep them on a birth control pill, and there’s no reason why I would take a woman off based on age alone, barring any medical reasons.

While traditional hormonal contraception may not be appropriate for some women, like for those who may have clotting risks, there are certain alternative types that might work, like progestin- only contraception. But these are questions that you have to ask your doctor. 

Is there anything that can retroactively heal damage caused by endometriosis, and does this always require surgery? 

To get rid of scar tissue would require surgery. Women with extreme pain and scar tissue may opt for surgery, such as having their ovaries removed, or having a hysterectomy. But it’s a very individualized approach. There is no “one size fits all” in medicine. Women who are dealing with terrible pain as a result of profound scarring may decide to go ahead and have surgery. 

I think when Lena Dunham shared that she got a hysterectomy because of her endometriosis symptoms, it was wonderful, because she wanted to make women aware of this issue. But most women who have endometriosis do not end up needing to get a hysterectomy. The good news is, there are medications that are available. I would say first-line would obviously be the nonsteroidals, then hormonal contraception. But for those women whose pain and symptoms are not controlled by oral contraceptives, there are other medications that can be used. They are called GnRH analogs, and they keep the ovaries quiet by drastically decreasing estrogen production. Because of the way these medications work, some women may need to do what we call “add back therapy,” because ovarian production diminishes so much that it can trigger symptoms of early menopause. But these drugs can be wonderful for women who may not be able to take hormones. In situations where birth control pills may be contraindicated, a hormonal IUD or implant may still be an option. 

I think it’s also important to mention lifestyle modifications. This is all anecdotal, but some women who have a healthy diet rich in fruits and vegetables, who cut out red meat, who exercise and meditate, claim to have an easier time managing symptoms. 

I would also suggest that every woman who thinks she has endometriosis start a symptom log, that she can then review with her health care provider.

Does a diagnosis of endometriosis automatically mean a woman will have fertility issues? 

The majority of women with endometriosis do not have fertility issues. That’s a very important thing to know. The amount of endometriosis does not always correlate with infertility, and the majority of patients dealing with infertility don’t have endometriosis. Dealing with endometriosis is no cause for panic when it comes to fertility. If necessary, IVF may be a wonderful option. But again, not all women will need it. 

I think the hardest part is the debilitating pain, especially when it’s unpredictable. It doesn’t always occur at the time of one’s period. But I want women to know that they shouldn’t be ashamed. They shouldn’t feel that it’s a shortcoming or anything like that. But for people dealing with chronic pain, there’s an increased risk of depression. So that’s why it’s so important to talk about this.

This story was written and reported by senior producer Emily Pinto.