Deeply infiltrative endometriosis is a rare and severe form of endometriosis. Like other forms of endometriosis, it causes uterine lining-like tissue to grow in other parts of the body.
Deeply infiltrative endometriosis is advanced endometriosis that has spread to organs near or inside the pelvic cavity. This can affect the bladder, intestines, reproductive system, and other organs. It causes inflammation that leads to scar tissue called adhesions.
The symptoms of deeply infiltrative endometriosis include excruciating menstrual periods, pain during sex, chronic pelvic pain, difficulty urinating, and digestive issues. It may also affect a person’s fertility. Although the condition can be severe, doctors find it challenging to diagnose, as symptoms are shared with other health issues.
This article explores deeply infiltrative endometriosis, symptoms, diagnosis, and treatment. It also looks at complications and fertility.
Deeply infiltrative endometriosis is a type of endometriosis. If a person has endometriosis, endometrial-like tissue grows in other places outside of the uterus, such as in the pelvis or abdomen.
These tissues behave like the endometrium, meaning that they build up and shed with the menstrual cycle. However, because this tissue has no way out of the body, it becomes trapped, leading to inflammation, scarring, and cysts.
Doctors group endometriosis by type and stage according to its location, depth, and amount of tissue affected.
The four main types of endometriosis are:
- superficial peritoneal endometriosis
- deeply infiltrative endometriosis
- abdominal wall endometriosis
In 1996, the American Society of Reproductive Medicine designated four stages to describe the severity of endometriosis:
- Stage 1 or minimal: In this stage, there are minimal implants with little or no scar tissue.
- Stage 2 or mild: In this stage, there are implants deeper in the tissue, as well as some scar tissue.
- Stage 3 or moderate: In this stage, there are various deep implants, potentially with cysts on the ovaries and thick areas of scar tissue called adhesions.
- Stage 4 or severe: In this stage, there are widespread implants that may be deep with dense adhesions and large cysts on one or both ovaries.
Deeply infiltrative endometriosis is rare, affecting around 1% of women of reproductive age. It is an aggressive form of endometriosis where the endometrial-like tissues invade organs inside the pelvis, abdomen, and other areas, including:
- fallopian tubes
- abdominal surgical scars
With endometriosis, a person’s disease stage does not always match their pain levels. For example, a person may have few adhesions but unbearable cramping pain. A person could also have severe deeply infiltrative endometriosis and minimal symptoms.
Symptoms also depend on the area of the body that endometriosis affects. Lesions associated with deeply infiltrative endometriosis often affect regions that are rich in nerve fibers, causing severe irritation and pain.
People living with endometriosis
They may also experience pain with sexual intercourse and generalized pelvic pain. This pain may be chronic or only happen at certain times during the menstrual cycle.
Deeply infiltrative endometriosis may also affect a person’s fertility due to the way that the condition can alter the anatomy of the pelvis and cause scar tissue to develop.
If a person has endometriosis of the bladder or urinary tract, they may:
- feel pain when the bladder is full
- often feel the need to urinate urgently
- experience burning sensations when urinating
- have blood in their urine
Additionally, bladder endometriosis can cause pelvic and lower back pain.
Endometrial-like tissue can grow anywhere in the bowel, but according to research from 2014, around
- general pelvic pain
- pain during sexual intercourse
- painful bowel movements
Symptoms often vary between individuals and with the menstrual cycle.
Doctors may find it challenging to diagnose endometriosis, as there is no singular test to confirm the condition. Symptoms may also resemble those of other health problems.
A laparoscopy is often the best way to diagnose endometriosis, but this presents significant challenges. Therefore, doctors
- a pelvic exam
- an ultrasound scan
- an MRI scan
- a laparoscopy
- a biopsy
Doctors most commonly use laparoscopy to confirm if a person has endometriosis and determine the extent of the condition. During the procedure, a surgeon inserts a camera or laparoscope through a small incision in the pelvis to visualize the presence of endometriosis.
Endometriosis has no cure, but there are several treatment options that may provide relief from painful symptoms.
Treatment may aim to relieve pain, improve fertility, slow the growth of endometriosis tissue, or prevent it from returning.
With conservative surgery, the surgeon aims to remove only affected tissue and leaves healthy tissue intact.
A surgeon can use various techniques, but laparoscopic surgery (laparoscopic excision) is the gold standard of endometriosis treatment. During this procedure, the surgeon attempts to remove or cut the entire lesion from wherever it is in the body with minimal use of heat and electricity.
Surgeons often use laser ablation to destroy endometriosis lesions, but there is a risk of damaging surrounding healthy tissue. In most cases, ablation is not effective long term. Laparoscopic excision is the best option.
Read more on what to expect from a laparoscopy for endometriosis.
If endometriosis affects a specific site, a surgeon may choose definitive surgery to remove the affected organ. For example, the surgeon may remove the uterus during a hysterectomy. They may also remove the ovaries and cervix. However, it is crucial to understand that a hysterectomy does not cure endometriosis, as the implants have often developed in other areas.
A person may use anti-inflammatory medication such as paracetamol or ibuprofen to ease the pain. However, if these over-the-counter options bring no relief, they may wish to talk with a doctor about prescription options.
A doctor may recommend hormone treatment to limit estrogen production in the body, as this hormone encourages endometriosis tissue to develop.
Hormone treatment options include the combined oral contraceptive pill, progesterone-only options such as the minipill, Depo-Provera, the progesterone intrauterine system, and the contraceptive implant. More powerful hormonal treatments such as leuprolide acetate (Lupron) injections are also an option.
People with deeply infiltrative endometriosis may experience complications, including adhesions and frozen pelvis.
Adhesions are fibrous bands of scar tissue that may form in response to injuries and surgery or as the body reacts to the inflammation from endometriosis implants.
If someone has a frozen pelvis, it means that the organs of the pelvis become tethered to each other by adhesions and “frozen” in position. It is incredibly challenging to operate on a frozen pelvis because the anatomy is distorted, leading to an increase in complications.
Deeply infiltrative endometriosis can affect a person’s fertility. For example, adhesions can prevent eggs from traveling or implanting in the uterus. They may also cut off blood supply to the ovaries or trap blood in the ovaries, causing cysts.
Studies suggest that 30–50% of people with endometriosis experience infertility. However, experts have not yet confirmed the relationship between the two.
Another point worth noting is that if a person with deeply infiltrative endometriosis becomes pregnant, they have double the risk of undergoing a cesarean section compared with people who do not have endometriosis.
If a person has deeply infiltrative endometriosis, it is vital to have a frank discussion with their doctor to thoroughly understand their diagnosis and treatment options.
The following questions are a good starting point:
- Where are the adhesions located?
- Do I have extensive adhesions?
- What are the treatment options?
- Can I have surgery to remove the adhesions?
- Is the surgery risky for my situation?
- Will the endometriosis implants affect my fertility?
People can find support and information to help them advocate for their own health through groups such as the Endometriosis Association. This organization provides help, education, and support for people living with endometriosis.
Deeply infiltrative endometriosis is a rare but severe form of endometriosis.
In endometriosis, tissues that resemble the lining of the uterus grow and implant in other locations, such as the bladder, lungs, and digestive tract.
These implants can lead to adhesions of scar tissue, causing pain and impacting an individual’s fertility.
In deeply infiltrative endometriosis, these implants have spread to areas outside of the pelvis. As a result, it may cause bladder and bowel function issues and chronic pelvic pain, pain with penetrative sex, and severe period cramps.
Various treatment options may ease an individual’s symptoms, such as pain relievers, hormone treatments, and surgery to remove adhesions.