Genital Lymphedema

What is genital lymphedema?

Genital lymphedema is a buildup of fluid that causes swelling in the soft tissues of the genital area. Lymphedema is due to blockage or damage to the lymph system. This condition can affect both males and females.

What parts of the lymph system are involved in genital lymphedema?

• Lymph: A clear to slightly yellowish fluid that delivers immune system cells (white blood cells) to the bloodstream. Lymph removes bacteria and certain proteins from the blood. It also circulates fat from the small intestine.
• Lymph vessels: Thin tubes that carry lymph throughout the body and return it to the bloodstream through a large vein near the heart.
• Lymph nodes: Small, bean-shaped structures that store white blood cells and filter lymph. They’re found all along the lymph system but in greater number under the arms and in the pelvis, groin, neck and abdomen.

What are the two types of genital lymphedema?

• Primary: This type is a result of abnormal development of the lymphatic system. Symptoms may occur at birth or years later.
• Secondary: This type is caused by something outside the person’s body. Causes include:
  • Treatment (surgery or radiation) of malignant tumors in the genital region, such as the prostate, bladder, testicles, penis, cervix, ovaries, vulva or rectum.
  • Surgical removal of lymph nodes.
  • Long-term infections of lymph nodes and vessels from bacteria, viruses, fungi or threadlike worms called filarial.
  • Injuries.
  • Sexually transmitted infections.
• Less common causes of secondary genital lymphedema include:
  • Crohn’s disease (irritation, swelling and inflammation of the intestines).
  • Sarcoidosis (lesions on the lymph nodes).
  • Vasculitis (inflammation of the blood vessels).
  • Rosacea (chronic skin inflammation).
  • Lymphadenitis (inflammation of lymph nodes).

What causes genital lymphedema?

When the lymph system is operating normally, it circulates lymph throughout the body via a series of vessels and ducts. After that, it returns lymph to the bloodstream. A blockage or breakdown in this system in the genital area can lead to leakage of lymph into the surrounding soft tissue.

What are the symptoms of genital lymphedema?

• In men there is swelling and pain in the penis, scrotum or both. There may also be generalized lymphedema in the lower limbs.
• In women there is pain and swelling in the pelvis and labia. There may also be generalized lymphedema in the lower limbs.
• In both sexes, the following may occur:
  • Trouble with urination.
  • Infections.
  • Thickening or hardening of the skin.
  • Trouble with sexual function.
  • Overall decline in quality of life due to pain during urination, everyday movement and sexual intercourse.

What are some possible complications of genital lymphedema?

• Repeated bouts of cellulitis (inflammation of the connective soft tissue beneath the skin) are common and can result in disfigurement and loss of elasticity in the skin.
• Elephantiasis (a condition in which the skin becomes extremely enlarged, thickened and hardened) can develop in advanced cases.
• Erysipelas (a bacterial infection marked by fever and inflammation of the skin and underlying tissue) can also develop.

How is genital lymphedema diagnosed?

• Physical examination and discussion of health history.
• Lymphoscintigraphy: Injection of a small amount of radioactive substance that can be tracked through the lymph system with a scanner to see if it follows a normal path.
• Magnetic resonance imaging (MRI): A technique used to obtain pictures of soft-tissue structures in the body.

How is genital lymphedema treated?

The standard first treatment approach is known as “complex decongestive therapy.” This kind of treatment is done with the following steps:

• Complete cleaning and sanitizing of the skin.
• Manual lymph drainage, a type of massage performed by a lymphedema therapist (not a regular massage therapist). It involves light rubbing, tapping and stroking of the swollen area. The aim is to move lymph out of the swollen area into an area with working lymph vessels. Patients can be taught to perform this type of massage themselves. However, the massage should not be performed in cases of broken skin, bruising, blood clots or skin recently exposed to radiation therapy.
• Use of special compression bandages and pumps that inflate and deflate on a timed cycle, helping pump lymph through vessels and preventing fluid buildup.
• Physical exercises as prescribed by a certified lymphedema therapist.

Surgery

In some cases, despite decongestive therapy, the lymphedema progresses. If this happens, or if repeated bouts of infections or significant deformities or disfigurement with pain and decreased quality of life happen, surgery is the next option.

The goal of surgery is to reduce pain and restore function. Surgery involves removing all of the involved tissue and covering the area with healthy skin.

What can be expected after treatment for genital lymphedema?

At the start of complex decongestive therapy, patients may receive daily treatments for as long as six weeks. Afterward, they can assume responsibility for performing the therapy for themselves, with follow-up visits to the doctor as recommended.

How can genital lymphedema be prevented?

Damage to the lymph system cannot be repaired. However, proper treatment can help control the swelling of genital lymphedema and reduce the chance of complications. The following are general guidelines to keep genital lymphedema under control:

• Alert your doctor at the first signs of genital lymphedema. Leaving it untreated or waiting too long before starting treatment may lead to more serious problems that cannot be reversed.
• Keep the skin clean and moisturized to help prevent infection, as fluid buildup makes it easier for bacteria to grow.
• Call a doctor if any signs of infection appear. These signs include redness, pain, swelling, heat, fever or red streaks under the skin.
• Make sure body fluids are able to flow easily. Do not cross the legs when sitting. Change position at least every 30 minutes. Avoid tight clothing or elastic bandages.
• Do not expose the genitals to heat, such as that found in hot showers or saunas.
• Take part in slow, carefully controlled exercises. An exercise plan should be designed by a certified lymphedema therapist.
• Maintain your ideal body weight.