Endometriosis, a chronic disease in which endometrial-like tissue grows outside the uterus and on other organs, is difficult to diagnose because it can present with several kinds of symptoms and stages. In superficial endometriosis, adhesions appear just on the surface of organs; deep infiltrating endometriosis (DIE), on the other hand, is invasive, straying more than 5 millimeters into the peritoneal tissues of the pelvic organs. There is also the presence of chocolate cysts (benign cysts filled with brown fluid, also called ovarian endometriomas).

“We most commonly categorize it into four different areas,” says Noor Dasouki Abu-Alnadi, MD, an assistant professor in the department of ob-gyn and minimally invasive gynecologic surgery at University of North Carolina Health Care in Chapel Hill. These areas are:

Uterosacral ligament (supports the structures that keep the cervix and uterus in the pelvis)
Intestines
Bladder
Vagina

DIE Invasion Can Create a ‘Frozen Pelvis’

Dr. Abu-Alnadi calls a frozen pelvis a surgeon’s worst nightmare. It means that the endometriosis has created so much inflammation and scarring that the organs appear to be locked into place, and often in incorrect positions. “It makes surgery very complicated. How do you remove the disease without harming the surrounding structure?” she says.

“It can sometimes look like a bomb went off, so much so that it’s difficult to find the fallopian tubes or ovaries during surgery. They can become indiscernible from adjacent pelvic structures,” says Nicole Noyes, MD, the system chief in the department of reproductive endocrinology and infertility at Northwell Health in New York City. “Your organs don’t just sit in one place. 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.”

DIE Is Not the Same as Adenomyosis

Adenomyosis is related to endometriosis (and often is present at the same time), and can be as difficult to diagnose. It occurs when endometrial lining grows into the actual muscle of the uterus. DIE describes a different phenomenon: when endometrial-like tissue on the outside of the uterus grows into adjacent tissues.

What Are the Signs and Symptoms of Deep Infiltrating Endometriosis?

As with all endometriosis, disease stage does not always correlate to pain levels. You can have very few adhesions with unbearable cramping pain; you can also have DIE and have minimal symptoms, but that is not the norm. Research published in Human Reproduction found that DIE lesions tend to enter places that are rich in nerve fibers, causing irritation and pain. Abu-Alnadi notes that you should be on the lookout for:

Chronic pelvic pain
Dysmenorrhea (pain with menstruation)
Dyspareunia (pain with penetrative sexual activity)
Bloody or painful bowel movements
Pain with urination
Vaginal bleeding after hysterectomy
Infertility

Diagnosis of DIE is usually made through laparoscopic surgery and imaging.

What Are the Causes and Risk Factors for Deep Infiltrating Endometriosis?

A study published in BMC Women’s Health in December 2019 found these factors in women who were at higher risk for developing DIE:

Married
Older age
Had siblings
Had a prior pregnancy
Longer time since age at menarche on the day of visit
Menstrual and ovulatory disorders
Having had any surgical instrumentation of the uterus such as dilation and curettage (D&C), abortions, and myomectomy (fibroid removal)

Can Deep Infiltrating Endometriosis Be Treated?

“Management of DIE depends on where it is and how badly the organs are affected or degraded,” says Dr. Noyes. Laparoscopic surgery is still the gold standard of care, even though the surgery may be complicated. The surgeon will need to excise lesions and scar tissue without harming the structure they have infiltrated. In some severe cases, this cannot be done laparoscopically. The surgeon must make an incision.

If you are one of the rare women with DIE who have minimal symptoms, and you aren’t concerned with fertility, physicians may recommend a watch-and-wait approach, according to a paper published in OBG Management in May 2018.

Treatment Is Complex; Find the Right Surgical Team

Because the surgery can be so complicated, Abu-Alnadi stresses the need for patients to seek out 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, you up the risk of repeated surgeries due to recurrent disease or an incomplete resection. “I would say that the overwhelming majority of patients that I see tend to be back because of an incomplete resection rather than recurrent disease,” she adds.

Noyes says she has seen DIE patients who have needed four or five surgeries. “They get symptomatic medical relief for three or four years, and then need to do it again. If the patients want to preserve fertility, we can only resect. But at some point, most patients give up and ask to have a hysterectomy.” A hysterectomy, or removal of the uterus, is considered a last resort by many experts.

Women: Advocate for Yourself!

Abu-Alnadi urges women with DIE to be their own champions. “Patients really should advocate for themselves to find the answer for these symptoms. They should know that there are specific specialists who are out there who are knowledgeable and willing to develop a holistic and comprehensive approach that is targeted to their goals. If their physician seems to not be listening or not have the right qualifications, they should feel like they 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.”

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