Find Endometriosis Specialists near you

---

---

---

---

---

---

---

---

---

---

---

---

---

---

---

---

---

---

---

---

FAQs:

What is an Endometriosis Specialist?

These practitioners are the most experienced in caring for patients with endometriosis, and they can offer unparalleled guidance on treating and managing the condition. Endometriosis specialists tend to be found in larger teaching hospitals or medical centers, but some are in private practice.

What is Endometriosis?

Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial-like tissue may be found beyond the area where pelvic organs are located.

With endometriosis, the endometrial-like tissue acts as endometrial tissue would — it thickens, breaks down and bleeds with each menstrual cycle. But because this tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.

Endometriosis can cause pain — sometimes severe — especially during menstrual periods. Fertility problems also may develop. Fortunately, effective treatments are available.

When Does Endometriosis Start?

Endometriosis happens when tissue similar to the lining of the uterus (womb) grows outside of the uterus. It may affect more than 11% of American women between 15 and 44.1 It is especially common among women in their 30s and 40s and may make it harder to get pregnant.

What are the First Signs of Endometriosis?

Many people experience pain during periods from endometriosis. This pain is often felt in your abdomen, lower back and pelvic area. Periods can also be heavier than typical, and there can be spotting (light bleeding) between cycles.

What Happens If Endometriosis is Left Untreated?

Over time, the endometrial-like tissue that grows outside of your uterus can cause cysts, adhesions and scar tissue. This can cause you to experience long-term (chronic) pain especially during menstrual periods. Many people with endometriosis may also have difficulties getting pregnant. Treatment can sometimes help with this issue. As you age and go through menopause, the symptoms of menopause may improve. This is related to the hormonal changes your body goes through during menopause.

Can Endometriosis Be Cancerous?

While there are concerns about how endometriosis impacts cancer, it is not a cancerous condition. Abnormal tissues growing outside the uterine lining are not cancerous. However, endometriosis can cause several complications that can increase a person’s risk of cancer.

Who Gets Endometriosis?

Endometriosis can happen in any girl or woman who has menstrual periods, but it is more common in women in their 30s and 40s.

You might be more likely to get endometriosis if you have:

- Never had children

- Menstrual periods that last more than seven days

- Short menstrual cycles (27 days or fewer)

- A family member (mother, aunt, sister) with endometriosis

- A health problem that blocks the normal flow of menstrual blood from your body during your period

Is Endometriosis Very Serious?

Often, endometriosis causes pain far greater than would be expected during a normal menstrual cycle, but even in cases where no pain is experienced, the condition can lead to organ damage, internal scarring and infertility.

Can I Get Pregnant If I Have Endometriosis?

Yes. Many women with endometriosis get pregnant. But, you may find it harder to get pregnant. Researchers think endometriosis may affect as many as one in every two women with infertility. No one knows exactly how endometriosis might cause infertility. Some possible reasons include:

- Patches of endometriosis block off or change the shape of the pelvis and reproductive organs. This can make it harder for the sperm to find the egg.

- The immune system, which normally helps defend the body against disease, attacks the embryo.

- The endometrium (the layer of the uterine lining where implantation happens) does not develop as it should.

If you have endometriosis and are having trouble getting pregnant, talk to your doctor. He or she can recommend treatments, such as surgery to remove the endometrial growths.

How Can I Prevent Endometriosis?

You can't prevent endometriosis. But you can reduce your chances of developing it by lowering the levels of the hormone estrogen in your body. Estrogen helps to thicken the lining of your uterus during your menstrual cycle.

To keep lower estrogen levels in your body, you can:

1. Talk to your doctor about hormonal birth control methods, such as pills, patches or rings with lower doses of estrogen.

2. Exercise regularly (more than 4 hours a week). This will also help you keep a low percentage of body fat. Regular exercise and a lower amount of body fat help decrease the amount of estrogen circulating through the body.

3. Avoid large amounts of alcohol. Alcohol raises estrogen levels. No more than one drink per day is recommended for women who choose to drink alcohol.

4. Avoid large amount of drinks with caffeine. Studies show that drinking more than one caffeinated drink a day, especially sodas and green tea, can raise estrogen levels.

How Common is Endometriosis?

One of the most common gynecological diseases, endometriosis often goes undetected for years because the abdominal pain associated with the condition is mistaken for menstrual cramps, or because there may be no symptoms. On average, women in the United States will suffer from endometriosis for 10 years before receiving a proper diagnosis. Endometriosis affects one in 10 women, and many women who report chronic pelvic pain are found to have it. The condition affects up to half of women who are infertile.

Types of Endometriosis

Endometriosis is also grouped by what area of the pelvis or abdomen it affects. There are four main types:

1. Superficial peritoneal endometriosis. The peritoneum is a thin membrane that lines your abdomen and pelvis. It also covers most of the organs in these cavities. In this type, the endometrial tissue attaches to the peritoneum. This is the least severe form.

2. Endometriomas. These are dark, fluid-filled cysts. They’re also called chocolate cysts. They vary in size and can appear in different parts of your pelvis or abdomen, but they’re most common in the ovaries.

3. Deeply infiltrating endometriosis (DIE). In this type, the endometrial tissue has invaded the organs either within or outside your pelvic cavity. This can include your ovaries, rectum, bladder, and bowels. It’s rare, but sometimes a lot of scar tissue can bond organs so they become stuck in place. This condition is called a frozen pelvis. But this only happens to 1%-5% of people with endometriosis.

4. Abdominal wall endometriosis. In some cases, endometrial tissue can grow on the abdominal wall. The cells may attach to a surgical incision, like one from a C-section.

Symptoms of Endometriosis

The primary symptom of endometriosis is pelvic pain, often associated with menstrual periods. Although many experience cramping during their menstrual periods, those with endometriosis typically describe menstrual pain that's far worse than usual. Pain also may increase over time.

Common signs and symptoms of endometriosis include:

1. Painful periods (dysmenorrhea). Pelvic pain and cramping may begin before and extend several days into a menstrual period. You may also have lower back and abdominal pain.

2. Pain with intercourse. Pain during or after sex is common with endometriosis.

3. Pain with bowel movements or urination. You're most likely to experience these symptoms during a menstrual period.

4. Excessive bleeding. You may experience occasional heavy menstrual periods or bleeding between periods (intermenstrual bleeding).

5. Infertility. Sometimes, endometriosis is first diagnosed in those seeking treatment for infertility.

6. Other signs and symptoms. You may experience fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods.

The severity of your pain may not be a reliable indicator of the extent of your condition. You could have mild endometriosis with severe pain, or you could have advanced endometriosis with little or no pain.

Endometriosis is sometimes mistaken for other conditions that can cause pelvic pain, such as pelvic inflammatory disease (PID) or ovarian cysts. It may be confused with irritable bowel syndrome (IBS), a condition that causes bouts of diarrhea, constipation and abdominal cramping. IBS can accompany endometriosis, which can complicate the diagnosis.

Causes of Endometriosis

Although the exact cause of endometriosis is not certain, possible explanations include:

1. Retrograde menstruation. In retrograde menstruation, menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity instead of out of the body. These endometrial cells stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.

2. Transformation of peritoneal cells. In what's known as the "induction theory," experts propose that hormones or immune factors promote transformation of peritoneal cells — cells that line the inner side of your abdomen — into endometrial-like cells.

3. Embryonic cell transformation. Hormones such as estrogen may transform embryonic cells — cells in the earliest stages of development — into endometrial-like cell implants during puberty.

4. Surgical scar implantation. After a surgery, such as a hysterectomy or C-section, endometrial cells may attach to a surgical incision.

5. Endometrial cell transport. The blood vessels or tissue fluid (lymphatic) system may transport endometrial cells to other parts of the body.

6. Immune system disorder. A problem with the immune system may make the body unable to recognize and destroy endometrial-like tissue that's growing outside the uterus.

Risk Factors of Developing Endometriosis

Several factors place you at greater risk of developing endometriosis, such as:

- Never giving birth

- Starting your period at an early age

- Going through menopause at an older age

- Short menstrual cycles — for instance, less than 27 days

- Heavy menstrual periods that last longer than seven days

- Having higher levels of estrogen in your body or a greater lifetime exposure to estrogen your body produces

- Low body mass index

- One or more relatives (mother, aunt or sister) with endometriosis

- Any medical condition that prevents the passage of blood from the body during menstrual periods

- Disorders of the reproductive tract

Endometriosis usually develops several years after the onset of menstruation (menarche). Signs and symptoms of endometriosis may temporarily improve with pregnancy and may go away completely with menopause, unless you're taking estrogen.

How to Find Out If You Have Endometriosis

To diagnose endometriosis and other conditions that can cause pelvic pain, your doctor will ask you to describe your symptoms, including the location of your pain and when it occurs.

Tests to check for physical clues of endometriosis include:

1. Pelvic exam. During a pelvic exam, your doctor manually feels (palpates) areas in your pelvis for abnormalities, such as cysts on your reproductive organs or scars behind your uterus. Often it's not possible to feel small areas of endometriosis unless they've caused a cyst to form.

2. Ultrasound. This test uses high-frequency sound waves to create images of the inside of your body. To capture the images, a device called a transducer is either pressed against your abdomen or inserted into your vagina (transvaginal ultrasound). Both types of ultrasound may be done to get the best view of the reproductive organs. A standard ultrasound imaging test won't definitively tell your doctor whether you have endometriosis, but it can identify cysts associated with endometriosis (endometriomas).

3. Magnetic resonance imaging (MRI). An MRI is an exam that uses a magnetic field and radio waves to create detailed images of the organs and tissues within your body. For some, an MRI helps with surgical planning, giving your surgeon detailed information about the location and size of endometrial implants.

4. Laparoscopy. In some cases, your doctor may refer you to a surgeon for a procedure that allows the surgeon to view inside your abdomen (laparoscopy). While you're under general anesthesia, your surgeon makes a tiny incision near your navel and inserts a slender viewing instrument (laparoscope), looking for signs of endometrial tissue outside the uterus.

A laparoscopy can provide information about the location, extent and size of the endometrial implants. Your surgeon may take a tissue sample (biopsy) for further testing. Often, with proper surgical planning, your surgeon can fully treat endometriosis during the laparoscopy so that you need only one surgery.

Health Conditions Linked to Endometriosis

Endometriosis can also be associated with several other conditions.

Pregnancy Complications and Infertility

One of the most common complications of endometriosis is impaired fertility. Women with endometriosis may struggle to conceive. This could be due to endometrial growth or scar tissue blocking the tubes connecting the ovaries to the uterus, or from direct damage to the ovaries. There are treatments to help aid fertility in these situations. Endometriosis may also increase the risk of complications during pregnancy, including premature birth.

Ovarian Cysts

Endometriosis can make the development of ovarian cysts more likely. Fluid-filled sacs may develop on the ovaries, where the eggs develop and are stored. These do not cause an issue most of the time, but if they rupture or grow too large they may restrict blood flow to the ovaries or put pressure on the surrounding organs such as the stomach and bladder. This can result in pain, difficulty emptying the bowels, frequent need to urinate, bloating, and abnormal periods. Rarely, the ovarian cyst may be cancerous.

Ovarian Cancer

Several forms of cancer appear to be more common in people with endometriosis. In particular, ovarian cancer may occur more frequently in endometriosis patients compared to the general population. It is important to note, however, that while the risk may be increased, the overall chance of developing ovarian cancer is still very low in endometriosis patients.

Bladder and Bowel Problems

Endometriosis can affect the bowel and bladder. If surgery is required to remove the endometrial tissue, a temporary urostomy or colostomy bag may be required to remove waste products from the bladder or bowel respectively while the body heals.

Autoimmune Diseases

Endometriosis may be associated with a higher risk of developing some autoimmune diseases, where the immune system mistakenly attacks healthy tissues. One study, published in the scientific journal Human Reproduction in 2002, found that the incidence of several disorders, including multiple sclerosis (MS), lupus, Sjögren’s syndrome, and rheumatoid arthritis, was significantly higher in women with endometriosis compared to the general U.S. population. These findings were similar in a study published in 2011  that investigated the frequency of autoimmune disorders in endometriosis in a Danish population. Both studies found that while there was a higher rate of an autoimmune disorder co-occurring with endometriosis than alone, the overall chance of developing a second disorder was very low.

Adenomyosis

Adenomyosis is a similar but distinct condition to endometriosis. However, the two conditions can occur together. Adenomyosis is characterized by endometrial cells developing inside the muscular wall of the uterus, as opposed to lining it. It can cause the uterus to become enlarged, leading to pain and heavy bleeding. It is possible that the two conditions may be associated with each other, as they may have similar risk factors.

Uterine Fibroids

Uterine fibroids are noncancerous (benign) tumors that develop inside the walls of the uterus. They consist of muscle fibers and connective tissue and can vary in size, rapidity of growth, and location. Some studies have suggested that uterine fibroids occur frequently alongside endometriosis.

How Endometriosis is Treated

There is no cure for endometriosis, but treatments are available for the symptoms and problems it causes. Talk to your doctor about your treatment options.

Medicine

If you are not trying to get pregnant, hormonal birth control is generally the first step in treatment. This may include:

- Extended-cycle (you have only a few periods a year) or continuous cycle (you have no periods) birth control. These types of hormonal birth control are available in the pill or the shot and help stop bleeding and reduce or eliminate pain.

- Intrauterine device (IUD) to help reduce pain and bleeding. The hormonal IUD protects against pregnancy for up to 7 years. But the hormonal IUD may not help your pain and bleeding due to endometriosis for that long.

Hormonal treatment works only as long as it is taken and is best for women who do not have severe pain or symptoms.

If you are trying to get pregnant, your doctor may prescribe a gonadotropin-releasing hormone (GnRH) agonist. This medicine stops the body from making the hormones responsible for ovulation, the menstrual cycle, and the growth of endometriosis. This treatment causes a temporary menopause, but it also helps control the growth of endometriosis. Once you stop taking the medicine, your menstrual cycle returns, but you may have a better chance of getting pregnant.

Surgery

Surgery is usually chosen for severe symptoms, when hormones are not providing relief or if you are having fertility problems. During the operation, the surgeon can locate any areas of endometriosis and may remove the endometriosis patches. After surgery, hormone treatment is often restarted unless you are trying to get pregnant.

Other treatments you can try, alone or with any of the treatments listed above, include:

- Pain medicine. For mild symptoms, your doctor may suggest taking over-the-counter medicines for pain. These include ibuprofen (Advil and Motrin) or naproxen (Aleve).

- Complementary and alternative medicine (CAM) therapies. Some women report relief from pain with therapies such as acupuncture, chiropractic care, herbs like cinnamon twig or licorice root, or supplements, such as thiamine (vitamin B1), magnesium, or omega-3 fatty acids.

What to Expect During Your First Visit to an Endometriosis Specialist

We understand that opening up to your doctor about endometriosis, infertility, and frustrating pain isn’t always easy. That’s why we’re here to demystify your first appointment and get you feeling ready to start your journey to a pain-free life.

1. Prepare Questions for Your Doctor

Because your questions are so important to us, we want to hear your concerns and address them thoroughly. So, before you arrive at your appointment, jot down any questions that you have for us so we can make sure you are fully informed. Start by asking yourself, “What are the most important things for me to understand about my symptoms and treatment?” 

2. Prepare to Answer Your Doctor’s Endometriosis Evaluation Questions

We want to get to the root cause of your pain and discomfort, whether it’s endometriosis or another condition. We may ask you questions such as:

- When did your pain start?

- What type of pain are you experiencing?

- How would you describe your menstrual cycles?

- What makes your symptoms better or worse?

- Does your family medical history include endometriosis?

It may be helpful to track your symptoms in a journal to bring with you for your first appointment. 

3. Open and Honest Personal History Intake

We care deeply about our patients and their personal experiences with painful or uncomfortable symptoms. We’ll start our appointment with a detailed patient intake that will go over your family and medical history as well as your vital signs.

We’ll also have an honest and open discussion where you can tell us all about how your symptoms affect your life. Don’t downplay or leave out any symptoms you’re experiencing, even if they seem unrelated to endometriosis. We want to know about anything that doesn’t feel right!

4. Physical Exams

The path to diagnosis is not the same for everyone, which is why we have several diagnostic options. During your appointment, we will identify the necessary tests and imaging needed to develop your care plan. These may include:

- Pelvic exam: Your doctor will feel for endometriosis lesions such as cysts or scars, as well as any other abnormalities in your reproductive organs.

- Ultrasound: Your doctor will look for ovarian cysts as well as other signs of endometrial lesions.

- Blood tests: Your doctor may order blood tests such as CA-125 to rule out certain gynecological cancers and possibly detect endometriosis.

- Hysteroscopy: Your doctor will insert a tiny lighted telescope through the vaginal canal into the uterine cavity to identify abnormalities.

- Laparoscopy: Your doctor may recommend a procedure called a laparoscopy, a keyhole surgery that allows a surgeon to examine your abdomen for endometrial tissue and take tissue samples for further testing. 

Depending on what we discover during our initial discussion, you may undergo one or more of these tests during your first appointment. 

5. Develop a Customized Care Plan

After testing and examination, we will develop a customized care plan with your goals and individual needs in mind. Depending on your diagnosis, we have several treatment options to consider:

- Surgical excision of endometriosis and uterine fibroids

- Botox injections for pelvic pain, overactive bladder, incontinence, and more

- Emsella pelvic floor strengthening

- Hormone treatments, including birth control

- Medications, such as anti-inflammatories

7 Ways to Prepare for Endometriosis Specialist Appointment

Once you have found an experienced endometriosis specialist, it’s essential to prepare yourself for the doctor’s appointment ahead of time. There is no concrete test to diagnose endometriosis (outside of surgery). Therefore, it’s imperative to have a solid understanding of the signs and symptoms of endo and detailed accounts of your own experience ready. Simple things such as medical records or journals that list all your endometriosis symptoms are a vital arsenal that will help you and your doctor determine your treatment plan. 

1. Gather Your Records. 

Unfortunately, most people with endometriosis have had many doctor appointments before seeing an endometriosis specialist. Therefore, you should have some medical records for them to review during your first appointment with an endo specialist. Gather everything from your regular medical history from your general practitioner to your OB/GYN records, testing, imaging, blood work, etc. Even if you think the particular doctor appointment or medical history is insignificant, you might be surprised by the various conditions linked to endometriosis. Bring it all. This information could play a vital role in your endometriosis treatment. 

2. Keep a Journal of Endometriosis Symptoms/Pain.

Write down all the possible endo signs and symptoms you’ve had leading up to the doctor’s appointment. If you get a visit scheduled, and it’s a couple of weeks out, start the journal at that time, but also include the signs and symptoms you’ve experienced leading up to that point. Then, from that date until your appointment, write down all the different types of symptoms you experience. Include everything, even if you don’t think it’s relevant, like colds, headaches, stomach issues, shortness of breath, chest pain, etc. Also, be sure to include your emotions and feelings because endometriosis can significantly impact mental health and can lead to conditions such as depression and anxiety. Emotions and mental health are essential as you might want to include a counselor as part of your holistic endometriosis treatment team.

3. Bring This Printable Guide.

At endometriosis.org, they’ve created a convenient guide that can help you describe your symptoms and know what to ask your endometriosis specialist. Please print it out and answer all the questions. Bring this with you to your doctor’s appointment to help specifically describe your endometriosis pain and other symptoms. 

4. Take All Your Medications With You. 

The importance of this cannot be understated. Even if you have a medication reconciliation (also known as a “med rec” for short) from your doctor, it’s important to realize those are not always up-to-date with everything you take. This inconsistency is especially true if you are on medications from multiple specialists or take supplements as well. The best way for your endo specialist to have a complete picture of all the medicines you are currently taking is by bringing them with you to the doctor’s appointment. You should include any supplements or over-the-counter medications. Bring in the physical bottles along with any medication history records.

5. Prepare Yourself Mentally. 

Go into the appointment with the bold mindset that you will ask every single question you have to gain clarity on your endometriosis diagnosis and treatment options. Endometriosis is an aggressive inflammatory disorder that can have a devastating impact on your quality of life. It would help if you carried an even more aggressive attitude toward trying to stop it dead in its tracks.

6. Bring a List of Questions.

What’s been bothering you the most? Pain? Bowel symptoms? Bring a list of all the important questions that you want answers to. Writing them down will help you not forget during the appointment. Furthermore, when the doctor sees you have a list of questions you want answers to, it makes it harder for them to get up and walk out of the room like the appointment is over. If something like that has ever happened to you, we are sorry you’ve experienced this. That’s why it’s crucial to find a vetted endometriosis expert.

7. Take a Support Person With You.

Finding a good endo expert is no easy task. If you are the type of person who is a bit shy or feels intimidated, you should bring your best support person to the appointment with you. Even if you are not nervous about your first endometriosis specialist appointment, having someone you trust by your side can help you process the information and encourage you along your journey. If no one you would like to accompany you, consider bringing a recorder and taping the visit. Because this can help you go back later and make sure you’ve understood all the information. Most doctors will have no qualms about recording your visit.

Questions to Ask an Endometriosis Specialist

Once you find a physician you think may be “the one,” the Endometriosis Foundation of America recommends you ask the following. (If you live far away, many of these centers will do preliminary work over the phone at no charge.)

Does your doctor …

- Specialize in the care of endometriosis?

- Listen to you when you describe your history and symptoms? Answer your questions in a collegial way? Value your input?

- Explain proposed treatment plans in a comprehensive, understandable way?

- Ask the right questions? He or she should be interested in whether the symptoms flare up around menstruation.

- Work with a team of specialists? When Lee had her surgery, her particular case needed five specialists on hand: a thoracic surgeon, urologist, general surgeon, colorectal surgeon, and Dr. Seckin, an endometriosis specialist and surgeon.

What to Consider When Seeking an Endometriosis Specialist

Here are the things to consider when seeking an endometriosis specialist:

1. Does the doctor specialize in the treatment of endometriosis / adolescent endometriosis?

2. What percentage of their patients are young women and girls?

3. Does the doctor have experience with related conditions?

4. What is the doctor’s attitude about your role in your health care? Is he or she willing to receive input from you?

5. Do they allow ample time for thorough conversation and examination, or do they rush?

6. Are they able to explain surgical procedures and treatment options clearly and in terms you can understand?

7. What is the doctor’s belief on different hormone therapies (oral contraceptives, IUD, etc.)? Can they discuss their reasons for prescribing certain medications, as well as the associated pros & cons?

8. What does your intuition say? Are you comfortable speaking with them? Do they listen to, acknowledge, and address your concerns? This must be someone you can trust and talk to openly!

9. Does the doctor work cooperatively with other specialists who have a history of caring for endometriosis patients (ex. GI doctors, pediatric gynecologists, psychotherapists, etc.)

Sources:

Voluson Club

Center of Endometriosis

iCare Better

Everyday Health

Endometriosis Foundation of America

Mayo Clinic

Cleveland Clinic

OASH

WebMD

Yale Medicine

Medical News Today

Endometriosis News

 

The content herein is provided for general informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Medical information changes constantly, and therefore the content on this website should not be assumed to be current, complete or exhaustive. Always seek the advice of your doctor before starting or changing treatment. If you think you may have a medical emergency, please call your doctor or 9-1-1 (in the United States) immediately.