Endometriosis

Andrea Reh, M.D. from the Shady Grove Fertility Arlington office discusses endometriosis in this short video.

What is endometriosis?

Endometriosis is a common gynecological condition that affects many women during their reproductive years. To explain how endometriosis works, let me give you a little background. During a normal menstrual cycle, the lining of the uterus will grow and thicken in response to hormones. When a woman gets her period, the uterus sheds this lining that has built up over that past month. That’s a normal and important process to essentially restart the body before another cycle.

The difference, is that for women with endometriosis, the uterine lining doesn’t just grow INSIDE the uterus (where is it supposed to be growing every month), but it will ALSO grow and implant OUTSIDE the uterus in other parts of pelvis. That’s where the problems arise. These “implants” can then cause inflammation and scaring, which can lead to pain and/or infertility. Sometimes these implants will grow on the ovaries and form cysts that we call “endometriomas.”

How do you know if you have endometriosis?

The only way to truly know is to have surgery—for a gynecologist to look inside the pelvis, take a biopsy, and confirm it under the microscope. But naturally we don’t want to operate just to answer that question. So, we have to rely on other clues. Patients with this condition may have symptoms of pelvic pain, back or rectal pain, and/or very painful periods. Sometimes these women will have pain with intercourse. Mainly, we can get a pretty good idea of whether someone has endometriosis, at least the most severe forms, with a pelvic ultrasound. On ultrasound we often can see those cysts—or what we call endometriomas.

The tricky part is that there is no one-size-fits-all when it comes to this condition. Not all patients with endometriosis will have pain, and in fact some patients with very advanced endometriosis may have no pain whatsoever. And some patients with very minimal endometriosis will have horrible pain. Does that make sense? It doesn’t always make sense to us physicians either, which is why there is continuing research in this area of our field.

If you do have endometriosis, what do you do about it?

If you are experiencing pain and you are not trying to conceive, there are a variety of hormonal medications that can help alleviate the pain. If you are trying to conceive, do not panic. Having endometriosis does not mean that you will be infertile. That being said, endometriosis is associated with a higher risk of having infertility, and it can get worse over time, so it’s important to have a plan.

Watch: SGF’s New On-Demand Webinar, Getting Pregnant with Endometriosis

When should you see a fertility specialist?

In general, any patient that has been trying to conceive for over 1 year should seek a fertility evaluation. If you are over 35, we recommend testing after 6 months of trying. With a diagnosis of advanced endometriosis, we would recommend an evaluation regardless of your age, particularly if it has been more than 6 months of trying.

How will a fertility doctor help?

Your doctor will make a personalized treatment plan by taking into account your age, the stage of your endometriosis, and the duration of your infertility.

Whether or not to have surgery or more surgery is controversial and a case-by-case decision. Given more recent studies, we are no longer as apt to recommend surgery.  We realize now, that repeated surgery may be detrimental to a woman’s ovarian reserve, and does not necessarily lead to an improvement in fertility.

Women with infertility with advanced endometriosis are likely best served by fertility treatment to increase their odds of conceiving. These options include superovulation with intrauterine insemination (IUI) using oral or injectable medications; the highest chance of pregnancy per cycle results from in vitro fertilization (IVF).

Since endometriosis can take many forms, and the success rates of these treatments varies, your doctor will outline your best treatment options with an individual plan for you.

Editor’s Note: This post was originally published in December 2015 and has been updated for accuracy and comprehensiveness as of March 2019.

If you would like to learn more about endometriosis or schedule an appointment, please speak with one of our New Patient Liaisons at 877-971-7755 or fill out this brief form.

Sharecare, a digital health company, recently interviewed Dr. Erika Johnston of SGF Richmond about the key facts about endometriosis and what she wants every woman to know.

Endometriosis is a diagnosis common among girls and women in their reproductive years. It is a condition in which endometrial tissue (tissue that lines the inside of the uterus) grows outside the uterus and eventually sheds into the abdominal cavity. Inflammation occurs in the areas where the blood pools, forming scar tissue. When the endometrial tissue forms on other reproductive organs aside from the inside of the uterus, it interferes with ovulation, tubal transport, and embryo quality.

Q: What are the warning signs of endometriosis?

Dr. Johnston: “The most common symptom for women with endometriosis is painful periods. Having pain with bowel movements, particularly during menstruation, that’s also a very big red flag. Similarly, pain with urination and pain with deep penetrating intercourse are two more key features of a woman who’s at high risk for having endometriosis. Having these symptoms and also trying to conceive for more than a year without success is an additional red flag that a woman is at high risk.”

Q: How can women distinguish between normal cramps and endometriosis?

Dr. Johnston: “If you talk to any woman she’ll say, ‘Oh, yeah, I have cramping when my menstrual period starts.’ Cramping that can be treated with a localized heating pad and over the counter medication is typical. But it’s not normal when a woman is unable to go to work or unable to go to school at the time of onset of her menstrual period because the pain is so severe and does not respond to typical over the counter medication.”

Q: Endometriosis involves more than just the uterus. Where can endometrial tissue implant in the body?

Dr. Johnston: “Unfortunately, the whole abdominal cavity is at risk when a woman has endometriosis. For most women, we think that not only do they bleed externally when their menstrual period comes vaginally, but also there’s blood that actually goes backwards through the Fallopian tube and can sometimes implant on the outside of the uterus. More commonly, this tissue can implant on the ovaries themselves and on the tissue behind the uterus. It can also travel as far north as the edge of the liver or the lower edge of the lungs.”

Q: Do we know why this happens?

Dr. Johnston: “We think most people actually have blood flow that goes backwards, but not all women have endometriosis. So, there is something on a genetic or cellular level that’s different. There are a few theories behind how it occurs. One is that endometrial tissue can actually spread through the lymphatic system. Another theory is that it travels through the blood vessels. This would help explain some unique cases where women actually have endometriosis tissue in their lungs, or oddly enough, in their brains. A third theory is that perhaps the tissue was always there—even during fetal development. It just got the wrong signal about where it was supposed to go and implanted in the wrong place. It’s not clear which theory is correct but certainly the more investigation we do, the more we understand that this tissue, which looks like the tissue from the inside lining of the uterus, acts a bit differently.”

Q: How is the condition diagnosed?

Dr. Johnston: “The ‘gold standard’ for diagnosis is doing a laparoscopy and seeing a lesion but certainly less invasive investigations can be performed first. We could start very simply by just taking a history. The next step would be an internal pelvic examination just to feel the pelvic structures. Then, if there is a concern about pain related to endometriosis, most OB/GYNs will recommend an ultrasound evaluation of the pelvis. All of these things can be done first before we consider surgery. And in fact, two of our governing groups that give us guidance for good obstetrical care, both in Canada and the U.S., suggest that if someone’s symptoms are likely enough to be related to endometriosis, presumptive medical treatment can actually start before a surgical procedure is performed to confirm the diagnosis.”

Q: Many women struggle for years with endometriosis before they are finally diagnosed. Why?

Dr. Johnston: “It shouldn’t take years to diagnose endometriosis, but it does. All too often women’s gynecologic concerns are marginalized, and people are concerned that their doctor is going to rush right into surgery. I think as healthcare providers we probably have not historically done a very strong job at investigating these concerns. But I have to say, if a woman is aware that it might be a problem or if she’s aware that she is having symptoms, then it shouldn’t have to take years to diagnose it. I think we can do better.”

Q: Does having endometriosis mean a woman can’t get pregnant?

Dr. Johnston: “Not all women with endometriosis are infertile. What we worry about with endometriosis is distortion of the pelvic anatomy that makes it hard for the Fallopian tube to successfully pick up an egg from the ovary. Endometriosis can also implant in the ovaries and form a cyst. Unfortunately, this can lower a woman’s egg count and cause infertility. The good news is that most women with endometriosis don’t have these conditions, so the disease doesn’t have a negative impact on their fertility. My hope for every patient with endometriosis is that she never needs my services for fertility treatment. Seeking care early on is important, so that the disease doesn’t progress to a stage that would involve the pelvic structures, increasing the likelihood of infertility.”

Watch: SGF’s New On-Demand Webinar, Getting Pregnant with Endometriosis

Q: Is surgery the mainstay of treatment for endometriosis?

Dr. Johnston: “There’s a lot of focus on endometriosis now and there are some great minimally invasive surgical strategies for women with high amounts of pelvic pain or distortion of the anatomy within their pelvis because of the presence of endometriosis. But surgery is by no means the only option. In fact, often we discourage it as an option, depending on a patient’s unique circumstances because it may not lead to resolution of their symptoms. We really try and use medication first and defer using surgery until medication has not been effective.”

Q: What medications are used to manage the condition?

Dr. Johnston: “There definitely are really thoughtful medical management strategies that reduce the amount of menstrual cycles that a woman has across her lifetime and improve her pain symptoms and prevent progression of her disease. This may involve continuous birth control pills or injectable contraceptives, or daily oral agents that are taken to try and reduce estrogen levels. Many of those can be very effective.”

Q: Are there any lifestyle changes that could help ease endometriosis symptoms?

Dr. Johnston: “From a non-medication, non-surgical standpoint, I think my view is that engaging in exercise and having supportive social networks can be very helpful. On the difficult pain days, it could result in a reduction in what women perceive as the severity of their symptoms.”

Q: So, there are treatments but no cure for endometriosis?

Dr. Johnston: “I always tell my patients that just like diabetes, this will always be something that they will have to consider and think about, which is unfortunately a little disheartening for people because no one really wants to have a chronic condition.”

Q: Won’t symptoms disappear after menopause?

Dr. Johnston: “Any woman who’s menstruating is at risk for endometriosis, but menopause doesn’t mean you’re going to be free of the condition either. Many of my patients that have been long-term sufferers of endometriosis are thrilled to go through menopause because they assume they finally won’t have to manage the condition anymore. Unfortunately, women who have advanced disease can still have symptoms from their endometriosis even in the menopausal time period.”

Q: What do you want to say to women who are struggling with endometriosis or suspect that they have the condition?

Dr. Johnston: “Many women suffer for years and have normalized their severe symptoms. It’s important to have an open dialogue with your healthcare provider about what you are experiencing, how it’s affecting your daily life, and ability to be productive. If you’re already in the care of a gynecologist who you feel is not responsive to your concerns or questions, don’t be afraid to seek a second opinion as well. A second physician might be able to provide a different perspective or treatment strategy that better resonates with your needs.”

To schedule an appointment with Dr. Johnston or any of our Shady Grove Fertility physicians, please call 1-877-971-7755 or fill out this brief form.

The movement to raise awareness for endometriosis is observed every March around the world. Endometriosis affects 1 in 10 women of childbearing age, which equates to nearly 176 million women and adolescent girls worldwide.

What is Endometriosis?

For women who have this condition, their endometrial tissue (the tissue lining the inside of the uterus) grows outside of the uterus. The endometrial tissue can attach to other organs in the abdominal cavity, such as the ovaries and the Fallopian tubes. The uterus will respond to this tissue the same way it responds to menstrual cycle hormones – it will swell and thicken and ultimately, shed. Unlike menstrual blood though, endometrial tissue has no place to be discharged from the body and may cause inflammation leading to the formation of scar tissue. While some women may not experience any symptoms, many will have painful menstrual periods, abnormal menstrual bleeding, or pain during or after intercourse. Endometriosis may also lead to infertility.

What are the Symptoms and Causes?

You may experience painful menstrual periods, abnormal menstrual bleeding, or pain during or after sexual intercourse. However, you may not have any symptoms at all.

The cause of endometriosis is still unknown. One theory suggests that during menstruation, some of the menstrual tissue backs up through the Fallopian tubes into the abdomen, where it implants and grows. Another theory suggests that endometriosis is a genetic birth abnormality in which endometrial cells develop outside the uterus during fetal development.

What Treatment Options are Available?

Your doctor may want to treat your endometriosis surgically, with medications, or with a combination of both. Medications are mainly used to treat symptoms of endometriosis, shrinking the endometrial tissue and affecting estrogen production. A decrease in estrogen production stops the growth of the tissue; however, surgery is the best option. Surgery involves removing the endometrial tissue from your ovaries or Fallopian tubes and can usually be done during a laparoscopy. If, however, there is severe disease, then your physician may recommend in vitro fertilization (IVF).

To watch our On-Demand Webinar on Getting Pregnant with Endometriosis, click here. During this free, on-demand event, viewers will learn about the causes and symptoms of endometriosis, and the treatments that are now available to help women conceive. With proper counseling and care, the chances of getting pregnant with endometriosis are high for most women.

How Can I Help Raise Awareness for Endometriosis?

Awareness about this disease is growing, with prominent events and organizations working to effect change. World Endometriosis Day on March 24, 2018 will be celebrated with marches around the world. The sponsors of these EndoMarches strive to get the word out that “…endometriosis is not just ‘bad cramps,’ but is actually a serious disease with severe medical consequences if left untreated.” The goals of the EndoMarches are to educate the public and medical professionals about endometriosis; to find a cure and develop non-invasive diagnostic testing; to improve health screenings among young girls and young women in public schools; and to educate the U.S. government and Congress in order to allocate funding for endometriosis.

To register for an EndoMarch in your area, click here. To discover more ways to donate and get involved, visit the Endometriosis Foundation of America.

Editor’s Note: This post was originally published in March 2015 and has been updated for accuracy and comprehensiveness as of March 2018.

To learn more or to schedule an appointment with a Shady Grove Fertility physician, call our New Patient Center at 888-761-1967.