Deep Infiltrating Endometriosis

Deep infiltrating endometriosis (DE) happens when tissue that’s similar to the lining of your uterus embeds deeply into other parts of your body. It often causes severe symptoms.

DE is the most aggressive form of endometriosis. It’s sometimes called stage IV endometriosis. But healthcare providers base staging on many factors. DE can occur in earlier or later stages.

It affects around 1 in 5 women with endometriosis.

DE can invade tissues in your pelvis and abdomen, including your:

• Pouch of Douglas — the space between your uterus and rectum
• Pelvic sidewall — where your pelvic nerves are
• Uterosacral ligaments and cardinal ligament
• Vaginal wall
• Ureters (urine tubes)
• Bladder
• Colon
• Rectal wall

DE is an invisible disease — everything is happening on the inside of your body. But that doesn’t make your symptoms or pain any less real. You deserve to be heard and to get relief. Medication and/or surgery can help. It just might take some time to find what works best for you.

Symptoms of deep infiltrating endometriosis

The symptoms of DE can vary based on which body parts it affects. Symptoms may include:

• Chronic pelvic pain or tenderness
• Painful intercourse
• Very painful period cramps

Urinary symptoms may include:

• Peeing frequently or an urgency to pee
• Pain while peeing
• Blood in your pee
• Flank pain

Bowel symptoms may include:

• Diarrhea or constipation
• Intestinal cramping
• Pain while pooping, even if your poop is soft
• Bloating

These symptoms may come and go. The pain can range from mild to severe. It’s typically worse during your period.

It may help to keep a journal of your symptoms. Write down when they happen and how severe they are. That way, when you talk to your healthcare provider about them, you’ll have a lot of information.

Deep infiltrating endometriosis causes

Researchers don’t know for sure what causes DE. They think many factors may contribute to it, like your genetics and hormone issues.

Researchers are studying possible roles of immune system changes and intestinal permeability (“leaky gut”). But these aren’t proven causes.

Complications of this condition

The main complications of deep infiltrating endometriosis can include chronic pain and infertility. But not everyone develops these complications.

DE can greatly affect your quality of life. It may be difficult to predict when you’ll get hit with pain or other symptoms. This can make working and socializing difficult, as well as affect sexual intimacy. All these complications can take a toll on your mental health, too.

How doctors diagnose this condition

Your healthcare provider will ask about your symptoms and medical history. They’ll do a physical exam and pelvic exam.

Your provider will likely recommend more tests to confirm a DE diagnosis. They’ll look to see where endometrial growths are in your body and how deeply they’re embedded in tissues. The tests may include:

• Pelvic or transvaginal ultrasound
• MRI
• Cystoscopy to check urinary system issues
• Laparoscopy and biopsy to test the tissue that your provider suspects is endometriosis

Your provider may also recommend specialized imaging if they think DE affects your bowels.

How is it treated?

Your healthcare provider will help create a treatment plan for endometriosis based on a few factors, including:

• Which body parts DE affects
• If you want to get pregnant
• Your age
• The severity of your symptoms

Your treatment plan will focus mainly on managing your pain, improving your quality of life and improving fertility issues (if applicable). Your healthcare provider may recommend medication and/or surgery.

It’s important to consider mental health therapies, too. DE can cause you to carry a heavy emotional load.

Medication

Medications may help stop the growth of endometriosis lesions and help them go away. This can help improve your symptoms. Many of them involve hormone therapy.

Medications include:

• Progesterone
• Combined oral contraceptives (COCs)
• Gonadotropin-releasing hormone (GnRH) analogues
• Aromatase inhibitors (AI)

Surgery

Your provider may recommend surgery if medication isn’t helping and you have severe symptoms. The goal is to remove as much of the endometriosis lesions as possible while sparing healthy tissue.

Minimally invasive surgical options include laparoscopic surgery and robotic-assisted laparoscopic surgery.

Your healthcare provider may consider a hysterectomy if other treatments haven’t worked and your symptoms are severe. But this procedure doesn’t cure endometriosis outside of your uterus.

When should I see my healthcare provider?

Endometriosis is a long-term disease. So, it’s possible for it to come back, even after surgery. Talk to your healthcare provider if your symptoms return or get worse. Pain with sex or bowel/bladder changes are important red flags.

Also, let them know if you have any side effects from medications.

It may be helpful to ask your provider these questions:

• How can I tell if endometriosis is growing again?
• What are the long-term risks of hormone therapy?
• How can I manage pain during sex?
• What’s the best way to handle bowel symptoms — should I see a GI specialist, too?
• Are there any clinical trials for DE?
• What are my chances of conceiving?
• Should I consider a hysterectomy?

What can I expect if I have this condition?

With the right care, many people see major improvement in pain and quality of life. You’ll likely need continuous treatment to manage symptoms. It’s important to keep a regular appointment schedule with your healthcare provider. You can work together on managing DE long-term.

It may be difficult to explain to loved ones how much your symptoms affect your life. Consider joining a support group. It can help to talk to others who “get it.”