Deep infiltrating endometriosis (DIE) is a severe type of endometriosis that invades organs in the pelvis and abdomen. It can be very painful and can lead to other symptoms. DIE is not common — it only occurs in 1 percent to 5 percent of people with endometriosis.
Endometrial tissue normally lines the inside of the uterus. Endometriosis lesions are caused by the growth of endometrial-like tissue in locations outside the uterus, in the pelvis, and abdomen. Most endometriosis lesions are found on the surface of pelvic organs, such as the ovaries and fallopian tubes, and do not spread below the peritoneum — the lining that covers the organs in the pelvis and abdomen.
In people with DIE, endometriosis lesions infiltrate, or invade, the tissue beneath the peritoneum. A diagnosis of DIE means invasion of 5 or more mm past the peritoneal lining. In addition, although most deep endometriosis is ASRM (American Society for Reproductive Medicine) stage 3 (moderate) or stage 4 (severe) endometriosis, even mild ASRM stage endometriosis can have deep infiltration.
Although it is similar to the condition adenomyosis, DIE is not the same. Adenomyosis occurs when the endometrium invades the uterine wall from the inside, and DIE invades organs from the outside. DIE can occur alongside other endometriosis lesions and ovarian endometriomas, also known as cysts.
DIE can affect the intestines (bowel endometriosis), vagina and rectovaginal septum, bladder (bladder endometriosis), ureters (the tubes that connect the kidneys to the bladder), and the uterosacral ligaments (connective tissue that supports the uterus within the pelvis).
In addition to chronic pain, DIE can cause any of the symptoms of endometriosis, such as painful menstrual periods (dysmenorrhea), heavy menstrual bleeding (menorrhagia), and also symptoms based on the organs it affects. These symptoms can include:
Inflammation from endometriosis can cause adhesions (bands of scar tissue that make organs stick together) to form, contributing to pain and other symptoms. DIE can cause extensive scarring and adhesions in the pelvis, leading to a condition called frozen pelvis. When a person has frozen pelvis, organs can become fixed in place, often in abnormal positions.
DIE can lead to serious complications including kidney damage (hydronephrosis) and bowel obstruction.
Diagnosis of DIE involves a history and physical exam, laboratory tests, and imaging tests.
A medical history includes finding out what symptoms a person is experiencing and for how long, as well as any history of other diseases or past surgeries. Endometriosis symptoms often ebb and flow during the menstrual cycle, worsening before and during menstruation. Pain symptoms of DIE can be more severe than in other forms of endometriosis.
A physical exam can help identify where the pain is occurring in the pelvis and abdomen. A pelvic exam is an important part of diagnosing DIE. Lesions in certain locations, such as the vaginal wall and rectum, can often be felt as nodules during an exam. Laboratory tests for endometriosis include standard blood tests (for example, a complete blood count).
Imaging tests are a key component of DIE diagnosis. Pelvic ultrasound can identify endometriosis lesions and help determine if they have invaded into tissue. Transvaginal ultrasound is especially useful for finding DIE lesions in the pelvis.
MRI and CT can also be used to see the extent of DIE lesions and how far they have spread into organs. Laparoscopy is often used in the diagnosis of endometriosis, but if DIE is suspected, detailed imaging techniques like MRI can be more useful for making a diagnosis and planning for surgical intervention.
Treatment of DIE can be more complicated than in less severe forms of endometriosis — but not always. Treatment of endometriosis can involve both medication and surgery. Medical management of DIE using medication only can be an effective treatment for some cases. Surgery is often necessary to treat DIE, especially if there are complications like bowel obstruction or blocked ureters that require immediate treatment.
Medications used to treat DIE are the same as those for other types of endometriosis. Pain management is important in endometriosis. Nonsteroidal anti-inflammatory drugs, such as ibuprofen and diclofenac (Cataflam) can help control pain and inflammation. Not only do nonsteroidal anti-inflammatory drugs improve pain, but they can also help reduce other symptoms of endometriosis caused by inflammation. Severe pain may require stronger pain relievers, such as opioid medications.
Hormonal treatments for endometriosis can help control symptoms and reduce the size of endometriosis lesions. Hormonal contraceptives (birth control) are commonly used to treat endometriosis, including oral birth control, injections, patches, implants, and hormonal intrauterine devices. Combined contraceptives, which contain estrogen and a progestin, or progestin-only contraceptives can also be used to treat endometriosis.
Drugs like danazol (Danocrine) and gonadotropin-releasing hormone analogs, such as elagolix (Orilissa), are used to control endometriosis by suppressing the body’s normal production of estrogen. Medication can be very effective for controlling endometriosis symptoms, but it is not a cure.
Surgical treatment for DIE is generally more complicated than surgery for milder cases of endometriosis because the lesions extend deeper into organs. Laparoscopic surgery can be used to diagnose and treat endometriosis. Endometriosis lesions on the surface of organs, such as in peritoneal endometriosis, can be identified and destroyed during laparoscopic surgery using a laser or electrocautery. Hysterectomy (removing the uterus) and/or oophorectomy (removing the ovaries) may also be needed to remove lesions.
Unlike most types of endometriosis, DIE extends beneath the surface of organs and causes damage, which typically requires more extensive surgery to treat. Excision of lesions is the goal of surgery. Depending on where the lesions are found, portions of bowel or bladder may need to be cut out (bowel resection or segmental bladder resection).
Treating a frozen pelvis can require extensive surgery to separate organs bound together by scar tissue. These procedures are usually performed using minimally invasive laparoscopy, but an open surgery (laparotomy) may be required. After surgery, hormonal medications may still be needed to achieve adequate control of pain and other symptoms.
DIE is a severe form of endometriosis with potentially serious complications and a negative impact on quality of life. Although DIE can present more of a challenge to diagnose and treat than milder forms of endometriosis, it is still very treatable. Many people can control symptoms of DIE using medications alone, without any surgery. If surgery is needed, the outlook is good. Surgery has a high success rate of pain relief and relieving other symptoms, including improving fertility.
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