Deep Infiltrating Endometriosis (DIE): The Hidden Cause of Pain

Endometriosis can lead to problems such as severe pain during menstrual periods and infertility. Assoc. Prof. Dr. Cengiz Andan, practicing in Istanbul, aims to improve his patients’ quality of life through early diagnosis and personalized treatment.

Deep infiltrating endometriosis is one of the most advanced forms of endometriosis. In this condition, the endometriosis tissue does not just remain around the uterus; it can also progress to the bowel, urinary tract, vagina, rectum, and even nerve tissues. Therefore, it often manifests with symptoms such as chronic and severe pain, infertility, and difficulty with defecation or urination.

DIE accounts for approximately 10–20% of all endometriosis cases, but its diagnosis is often delayed.

Deep endometriosis is an aggressive disease that can cause severe adhesions behind the bowel, bladder, and uterus. Assoc. Prof. Dr. Cengiz Andan safely removes these lesions via laparoscopic surgery in Istanbul.

What is Deep Endometriosis?

The presence of cells normally found in the inner lining of the uterus (endometrium) in other parts of the body is known as “endometriosis.” However, deep infiltrating endometriosis occurs when these cells:

• Infiltrate deeper than 5 mm

• Settle at a level that causes damage to organs.

Areas that can be affected:

• Rectum and large intestine (bowel)

• Vagina and vaginal wall

• Bladder and urinary tract

• Uterosacral ligaments (ligaments supporting the uterus)

• Nerve networks (especially the pelvic plexus)

The Most Common Symptoms

More than 80% of DIE patients experience complaints that affect their quality of life:

• Severe pelvic pain during menstruation

• Pain during sexual intercourse (dyspareunia)

• Pain and bleeding during defecation

• Chronic constipation or bouts of diarrhea

• Painful urination or frequent urination

• Infertility

These complaints are usually triggered by the menstrual period and can become constant over time. It is often confused with irritable bowel syndrome (IBS), urinary tract infections, or psychological issues.

How is it Diagnosed?

Diagnosing DIE can be more difficult than diagnosing classic endometriosis. It requires an accurate and detailed evaluation:

Physical Examination Your doctor may feel a mass or tenderness during a vaginal or rectal examination.

Ultrasonography (Specialized Pelvic USG) Successful in evaluating the rectovaginal area and areas with bowel involvement.

Pelvic MRI It is the gold standard for showing the detailed locations of DIE. Involvement of structures like the rectum, bladder, and vagina can be clearly identified.

Laparoscopy Used for both diagnosis and treatment if necessary. A biopsy can be taken under direct visualization.

According to the 2021 ESHRE (European Society of Human Reproduction and Embryology) guidelines, the sensitivity of MRI in diagnosing deep endometriosis is 80–95%, and its specificity is over 90%.

Treatment Options

Treatment is planned based on the extent of the disease, the severity of symptoms, the desire for fertility, and age.

1. Medical (Drug) Treatment

• Hormone-suppressing medications (GnRH agonists, progestins, combined oral contraceptives)

• They can reduce pain and menstrual bleeding.

• However, they do not reverse organ involvement and are not an alternative to surgery.

2. Surgical Treatment (Laparoscopic Excision)

Laparoscopic surgery is the most effective method for treating deep endometriosis.

This surgery removes not only the visible lesions but also the foci that penetrate deep tissues. It must be performed by specially trained surgeons because:

• It requires working close to the rectum or urinary tract.

• It requires fine dissection and repair techniques.

• It is sometimes performed together with general surgery and urology teams.

According to research, up to 80% improvement in pain complaints and a 40–60% increase in fertility rates can be achieved after surgery.

Is There a Risk of Recurrence?

Yes, the risk of recurrence is high, especially in cases merely suppressed with medical treatment. However, this rate decreases in cases where the lesions are completely removed surgically. In literature, the average recurrence rate in a 5-year follow-up is reported as 20–30%.

DIE and Infertility

Approximately half of women with deep endometriosis have difficulty conceiving. This is because:

• Adhesions develop around the fallopian tubes, ovaries, and uterus.

• Embryo implantation becomes difficult.

• Ovarian reserve may decrease.

In the post-IVF process, the first few days after embryo transfer are crucial. Assoc. Prof. Dr. Cengiz Andan, serving in Istanbul, provides special follow-up and recommendations to his patients during this period.

Therefore, IVF (In Vitro Fertilization) is recommended for some patients after surgery.

Conclusion

Deep infiltrating endometriosis is a condition that should not be underestimated; it is often overlooked and progresses silently. If you are experiencing severe menstrual pain, pain during defecation, or pain during sexual intercourse that affects your quality of life, DIE may be the underlying cause. A painless, healthy life is possible with the right diagnosis, an experienced team, and appropriate treatment.

Consulting a gynecologist specialized in the treatment of deep endometriosis is critical for your long-term quality of life.