Endometriosis is a chronic disease in which endometrial-like tissue (tissue similar to what lines the uterus) grows outside the uterus and on other organs. Deep infiltrating endometriosis (DIE) is the most aggressive type of endometriosis, growing more than 5 millimeters into the tissues of the pelvic organs rather than just on the surface (as in superficial endometriosis).
It most commonly occurs in four different areas, says Noor Dasouki Abu-Alnadi, MD, an assistant professor in the department of obstetrics and gynecology and minimally invasive gynecologic surgery at University of North Carolina Health Care in Chapel Hill. These areas are:
DIE is not the same as adenomyosis. Adenomyosis is related to endometriosis (and is often present at the same time) and can be as difficult to diagnose. It occurs when the endometrial lining grows into the muscle of the uterus. DIE describes a different phenomenon, when endometrial-like tissue on the outside of the uterus grows into adjacent tissues.
Early research suggests that DIE lesions tend to enter places that are rich in nerve fibers, causing irritation and pain. Symptoms of deep infiltrating endometriosis may include:
Chronic pelvic pain
Dysmenorrhea (pain with menstruation)
Dyspareunia (pain with penetrative sexual activity)
Painful or bloody bowel movements
Pain with urination
Constipation or diarrhea
Bleeding between periods
Infertility
DEI can also cause something called a frozen pelvis, which refers to when the endometriosis has created so much inflammation and scarring that the organs appear to be locked into place, and often in an incorrect position, explains Dr. Abu-Alnadi.
“Your organs don’t just sit in one place,” says Nicole Noyes, MD, the system chief in the department of reproductive endocrinology and infertility at Northwell Health in New York City. “In reality, they share close quarters and need to be able to move around in order to properly function. With a frozen pelvis, the capacity to rotate is often lost, and that can be painful, particularly around ovulation, when the ovary is swollen with its egg and follicle, or during penetration intercourse, or around the time of the menstrual period.”
Endometriosis is caused by endometrial tissue growing outside the uterus. Experts aren’t sure exactly why this happens but think there are likely genetic, immunological, and hormonal factors at play. Other factors that may increase the risk of DIE include:
A mother, sister, or daughter with endometriosis
Early onset of menstruation (before age 11)
Menstrual cycles shorter than 27 days
Heavy periods that last longer than 7 days
Infertility
Low body fat
Endometriosis is often difficult to diagnose because people commonly experience symptoms that resemble other conditions. Because of this, it’s important to see an endometriosis specialist, who may use several tests to evaluate and diagnose your condition.
Ultrasound
A transvaginal ultrasound allows your specialist to carry out a thorough pelvic examination, where they can see whether your ovaries, bladder, or bowel have been affected by endometriosis. Ultrasounds for endometriosis are not diagnostic in themselves, but they’re an effective and noninvasive way for you and your healthcare provider to learn more about your condition.
CT Scan
A CT scan of your urinary system (CT urogram) or CT scan of your pelvis can sometimes be useful for detecting DIE that is affecting the bowels or bladder.
Magnetic Resonance Imaging (MRI)
An MRI of your pelvis or urinary system is an effective, noninvasive way of diagnosing endometriosis. MRI is more expensive than other imaging methods, but the images offer a more detailed view of your organs.
Laparoscopy
A laparoscopy with biopsy is considered the gold standard for diagnosing endometriosis. Also called keyhole surgery or laparoscopic surgery, this is a minimally invasive procedure where the surgeon makes a small incision in your abdomen and inserts a thin tube with a camera called a laparoscope. This allows your doctor to see the organs inside your abdominal cavity. During the procedure, the surgeon may choose to take a small sample of tissue called a biopsy and analyze it in the lab to confirm endometriosis.There are several treatment options for DIE, including hormone therapy, pain medications, surgery, and complementary treatments.
Hormone Therapy
Hormone therapy for endometriosis has proven very effective and safe in the long term. Hormone therapy may include:
Progestins, or man-made versions of an important hormone for menstruation, which can help stop endometrial tissue growth
Hormonal contraceptives like birth control pills or the ring, which may help decrease pain and reduce the growth of endometrial tissue
Gonadotropin-releasing hormone agonists (analogues) or antagonists, which help shrink endometrial tissue
Aromatase inhibitors, which lower estrogen in your body to help decrease the size of endometrial lesions and ease pain
Medication for Pain Management
Your healthcare provider may prescribe over-the-counter pain relievers such as nonsteroidal anti-inflammatory drugs (NSAIDs), including ibuprofen (Motrin, Advil) and naproxen (Aleve). These can help relieve menstrual cramping, especially if they’re taken one to two days before your period starts. Talk to your doctor before taking NSAIDs, especially if you have a history of kidney problems or stomach ulcers.Medications such as gonadotrophin-releasing hormone (GnRH) analogues and aromatase inhibitors have also been shown to significantly reduce pain in DIE. Your doctor may recommend these hormonal medications if you’re not trying to get pregnant.
Surgery
Surgical options for DIE include laparoscopy and laparotomy. The surgeon will remove lesions and scar tissue without harming the structures or organs the endometriosis has infiltrated. In rarer, more severe cases, lesion removal can’t be done laparoscopically. The surgeon will then have to make a larger incision across the abdomen, a procedure called laparotomy.
Surgery can be complicated, so Abu-Alnadi stresses the importance of seeking expert care: “Most general or gynecological surgeons are not trained enough for this kind of operation. You really need to find someone who is highly specialized in this type of surgery.” Without expert care, there is a greater risk of repeated surgeries due to recurrent disease or incomplete removal of the lesions.
In some cases, a healthcare provider may recommend a hysterectomy, or removal of the uterus. Hysterectomy may be effective but is considered a last resort by many experts.
Complementary and Integrative Treatments
Complementary and integrative treatments for endometriosis may help reduce pain and improve quality of life. These include:
Acupuncture: Research suggests that this traditional Chinese therapeutic approach can help improve chronic pelvic pain and pain with sex for up to two months after treatment.
A healthy diet: This includes eating plenty of vegetables and foods rich in omega-3 polyunsaturated fatty acids and reducing red meat, coffee, and alcohol. The Mediterranean diet is considered a helpful approach.
Physical activity: Stretching, yoga, brisk walking, and other physical activity may help reduce pain and stress associated with endometriosis.
Cognitive behavioral therapy (CBT): CBT techniques may reduce stress and depression that are often associated with endometriosis. This can help decrease pain and improve overall quality of life.
It’s crucial to find a healthcare provider who specializes in treating endometriosis, says Abu-Alnadi. “There are specific specialists out there who are knowledgeable and willing to develop a holistic and comprehensive approach that is targeted to your goals.”
Abu-Alnadi urges people with DIE to be their own champions, too. “If your physician seems to not be listening or not have the right qualifications, you should feel like you can step up and just say, ‘Send me to someone who has more training.’ There is someone out there, waiting to improve your symptoms and quality of life.”
You can start your research with these resources to help you find a trained endometriosis specialist:
Deep infiltrating endometriosis is an aggressive form of endometriosis in which endometrial tissue grows deep into other organs and areas of the pelvis.
Symptoms include pain, especially with sex, urination, and bowel movements.
Treatment may involve medication, surgery, and complementary and integrative therapies to support your care.
It’s important to find an endometriosis specialist for diagnosis and treatment to get the most targeted care for your condition.
