Deep infiltrating endometriosis, or DIE, is a specific and advanced form of endometriosis. In this condition, tissue that behaves like the lining of the uterus grows outside of the uterus, but instead of remaining on the surface of pelvic organs, it penetrates more than 5 millimeters deep. This invasion into the tissue of organs such as the bowel, bladder, and ligaments supporting the uterus is what defines DIE and separates it from superficial or ovarian forms of endometriosis.
This deep growth can cause significant scarring and may lead to organs fusing together, a state sometimes called a frozen pelvis. The presence of these deep lesions often leads to more intense symptoms compared to other types of endometriosis.
Distinct Symptoms and Locations
While general symptoms like severe menstrual cramps and chronic pelvic pain are common, the experience of deep infiltrating endometriosis is often intensified and directly linked to the location of the growth. The pain can be described as sharp or stabbing and may interfere with daily activities, as these deep lesions often grow on or near nerve-rich areas.
When DIE affects the bowel, most commonly the rectum and sigmoid colon, it can cause painful bowel movements, especially during menstruation. Individuals may also experience bloating, constipation, diarrhea, or rectal bleeding. If the lesions infiltrate the bladder or the ureters, symptoms can include painful urination, a frequent or urgent need to urinate, and if a ureter becomes obstructed, flank pain that radiates from the side and back.
Another common site for deep infiltration is the uterosacral ligaments, which connect the uterus to the sacrum at the base of the spine, and the rectovaginal septum between the rectum and vagina. Growth in this area is characteristically associated with deep pain during sexual intercourse and persistent lower back pain.
The Diagnostic Pathway
Identifying deep infiltrating endometriosis often requires more than a standard gynecological assessment. While a doctor may suspect DIE based on a patient’s detailed medical history and a physical examination, standard transvaginal ultrasounds frequently miss the deep, invasive lesions characteristic of the condition.
For a more accurate non-invasive diagnosis, specialized imaging is necessary. This includes a transvaginal ultrasound performed by a sonographer with advanced training in recognizing the subtle signs of deep endometriosis. This expert-level scan can dynamically assess how pelvic organs move in relation to one another, helping to identify adhesions and nodules. A pelvic MRI is another valuable tool, particularly for getting a comprehensive view of the entire pelvis and identifying lesions in areas that may be difficult to see on an ultrasound, such as higher in the bowel or on the diaphragm.
Although these advanced imaging techniques provide a detailed map of suspected disease, a definitive diagnosis is confirmed through a surgical procedure called a laparoscopy. During this minimally invasive surgery, a surgeon can directly see the lesions, determine their depth of invasion, and take tissue samples for biopsy.
Specialized Treatment Approaches
The treatment for deep infiltrating endometriosis is complex, with surgical intervention being a primary approach. The recommended surgical method is excision surgery, which involves cutting out the endometriotic lesions from the root. This differs from ablation, where the surface of the lesion is burned away, which may leave deeper disease behind and lead to a higher chance of symptom recurrence.
Excision of deep lesions is often a lengthy and complex operation that demands a high level of surgical skill and experience. Due to the potential for infiltration into multiple organs, a multidisciplinary surgical team is frequently required. This team might include a colorectal surgeon if the bowel is involved, or a urologist for bladder and ureter disease, working alongside the gynecological surgeon to ensure all visible disease is safely removed.
While surgery is the main treatment for removing the lesions, medical therapies also play a part in managing the condition. Hormonal treatments, such as GnRH agonists or progestins, are used to suppress the menstrual cycle and can help manage symptoms like pain. These medications do not eliminate the deep lesions themselves but are often prescribed after surgery to help prevent the recurrence of new disease.
Impact on Fertility and Long-Term Outlook
Deep infiltrating endometriosis can present significant challenges to fertility. The disease can distort the normal anatomy of the pelvic organs, such as the fallopian tubes, and the chronic inflammation it causes can interfere with reproductive processes. For individuals wishing to become pregnant, specialized excision surgery may improve the chances of natural conception by restoring more normal anatomy and reducing inflammation. While there is no guarantee, studies have shown that surgery can lead to improved pregnancy rates for many women.
Living with DIE requires a forward-looking perspective, as it is a chronic condition with a known risk of recurrence even after successful surgery. Therefore, the long-term outlook depends on a consistent management plan developed with a specialist. This plan often involves regular monitoring for any returning symptoms and may include ongoing medical therapy to suppress disease activity. With a proactive and personalized approach, many individuals can effectively manage their symptoms and lead full lives despite the chronic nature of the condition.