Genital Lymphedema

Genital lymphedema (JEN-i-tl lim-fi-DEE-muh) is a buildup of fluid (lymph) in the soft tissues in your genital (crotch) area. It’s a chronic (long-lasting) type of lymphedema. Lymphedema occurs due to blockage or damage to the lymphatic system. Your lymphatic system is part of your immune system, and it helps balance your body fluids and defend against infections.

Genital lymphedema is a rare condition, but it can affect anyone. It accounts for less than 1% of all lymphedema cases worldwide.

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

The following parts of your lymphatic system contribute to genital lymphedema:

• Lymph. Lymph is a clear or slightly yellowish fluid that delivers immune system cells (white blood cells) to your bloodstream. Lymph removes waste products, bacteria and excess proteins from tissues and returns them to your bloodstream. It also transports absorbed fats from your intestines to your bloodstream, especially after digestion.
• Lymph vessels. Lymph vessels are thin tubes that carry lymph throughout your body and return it to your bloodstream through a large vein near your heart.
• Lymph nodes. Lymph nodes are small, bean-shaped structures that store white blood cells and filter lymph. They’re all along your lymph system, with clusters under your arms and in your pelvis, groin, neck and abdomen.

What are the types of genital lymphedema?

There are two types of genital lymphedema:

Primary genital lymphedema

This type is a result of abnormal development of the lymphatic system. Symptoms may occur at birth or years later.

Secondary genital lymphedema

Something outside of the body causes secondary genital lymphedema. Causes may include:

• Treatment (surgery or radiation therapy) of cancerous (malignant) tumors in the genital region, including the prostate, bladder, testicles, penis, cervix, ovaries, vulva or rectum
• Surgical removal of the lymph nodes (lymphadenectomy)
• Long-term infections of the lymph nodes and lymph vessels from bacteria, viruses, fungi or threadlike worms (filariasis)
• Injuries
• Rarely, sexually transmitted infections (STIs)

Less common causes of secondary genital lymphedema may include:

• Irritation, swelling and inflammation of the intestines (Crohn’s disease)
• Lesions on the lymph nodes (sarcoidosis)
• Inflammation of the blood vessels (vasculitis)
• Long-lasting (chronic) skin inflammation (rosacea)
• Inflammation of the lymph nodes in the abdomen (mesenteric lymphadenitis)

Symptoms of genital lymphedema

Genital lymphedema symptoms may include:

• Trouble with urination (peeing), including dribbling and pain while peeing (dysuria)
• Infections
• Thickening or hardening of the skin
• Sexual dysfunction, including painful intercourse (dyspareunia), erection problems or low sex drive (low libido) due to physical and emotional discomfort
• Overall decline in quality of life due to pain or difficulties peeing, everyday movement and sexual intercourse

In females, symptoms may include:

• Pain and swelling in the pelvis and the folds of skin on both sides of the vaginal opening (labia)
• Generalized lymphedema in the lower limbs

In males, symptoms may include:

• Swelling and pain in the penis, the sac behind the penis that normally holds the testicles (scrotum) or both
• Generalized lymphedema in the lower limbs

What causes genital lymphedema?

When your lymphatic system operates normally, it circulates lymph throughout your body through a series of vessels and ducts. After that, it returns lymph to your bloodstream. A blockage or breakdown of the lymphatic system in your genital area can lead to a buildup of lymph in the surrounding soft tissue.

Is genital lymphedema contagious?

No, genital lymphedema isn’t contagious, and it isn’t an STI. You can’t spread it to another person.

What are the complications of genital lymphedema?

Genital lymphedema complications may include:

• Recurring cellulitis. Cellulitis is inflammation of the connective soft tissue beneath the skin. This can result in scarring and loss of elasticity in the skin.
• Elephantiasis. Elephantiasis is when the skin becomes extremely enlarged, thickened or hardened. It typically develops in advanced cases of genital lymphedema.
• Erysipelas. Erysipelas is a bacterial skin infection similar to cellulitis. It can develop quickly and cause fever, pain and discoloration (red, purple, brown, black).
• Psychological effects. Genital lymphedema is a long-term condition that can affect your appearance. This may cause you to experience low self-esteem, anxiety, depression and stress.

How is genital lymphedema diagnosed?

A healthcare provider will first review your health history and perform a physical examination. If they suspect you have genital lymphedema, they’ll order additional tests to help confirm their diagnosis.

What tests will be done to diagnose genital lymphedema?

A healthcare provider may order the following tests to help diagnose genital lymphedema:

• Lymphoscintigraphy. During a lymphoscintigraphy, a provider will inject you with a small amount of a radioactive substance (radiotracer). They can track the radiotracer through your lymph system with a scanner to see if it follows a normal path.
• Magnetic resonance imaging (MRI). An MRI is a type of imaging test. It uses a large magnet, radio waves and a computer to produce detailed images of the soft tissues in your genital area.

Is genital lymphedema curable?

There’s currently no cure for genital lymphedema. But treatment can help you manage the symptoms.

How do you get rid of swollen lymph nodes in the pubic area?

The standard first-treatment approach is complex decongestive therapy. The following steps make up complex decongestive therapy:

• Complete cleaning and sanitizing of the skin. A healthcare provider will clean the area with antibacterial soap, warm water and a skin cleaner such as iodine or isopropyl alcohol.
• Manual lymph draining. A provider who specializes in reducing lymphedema swelling (lymphedema therapist) will massage the area. The massage involves light rubbing, tapping and stroking. The aim is to move lymph out of the swollen area into an area with working lymph vessels. A lymphedema therapist can teach you how to perform this type of massage yourself. But you shouldn’t massage the area if you have broken skin, bruising, blood clots or if you recently had radiation therapy in the area.
• Special compression garments and pumps. The bandages and pumps inflate and deflate on a timed cycle, which helps pump lymph through vessels and prevents the fluid buildup.
• Physical exercises. A lymphedema therapist will prescribe specific exercises to promote the flow of lymph through the area.

In some cases, genital lymphedema gets worse, even with complex decongestive therapy. A provider may recommend surgery if:

• Your genital lymphedema progresses
• You have repeated infections
• You have significantly misshapen skin in the pubic area with pain
• Genital lymphedema affects your quality of life

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

How soon after treatment will I feel better?

At the start of complex decongestive therapy, you may receive daily treatments for as long as six weeks. Afterward, you may perform the therapy on yourself, with follow-up visits as recommended.

Genital lymphedema surgery typically requires you to stay in the hospital for one to two days after the procedure. Most people recover within six weeks. A healthcare provider will give you a more accurate timeline according to your specific situation.

Can genital lymphedema be prevented?

You can’t reduce all lymphedema risks, and healthcare providers can’t repair damage to the lymphatic system. But proper treatment can help control swelling and reduce the chance of complications. The following guidelines can help keep your genital lymphedema under control:

• Monitor your body. Alert a healthcare provider at the first signs of genital lymphedema. Going without treatment or waiting too long before starting treatment may lead to more serious problems that a provider can’t reverse.
• Take care of your skin. Keep your skin clean and moisturized to help prevent infection. As fluid builds up, it makes it easier for bacteria to grow.
• Call a healthcare provider at the first signs of an infection. Common infection signs include discoloration (red, purple or brown), pain, swelling, fever or discolored streaks under your skin.
• Make sure your body fluids can flow easily. Don’t cross your legs when you sit. Change your position at least every 30 minutes. Avoid tight clothing or elastic bandages.
• Limit or avoid exposing your genitals to heat. This includes hot showers or saunas. Extreme heat can increase your risk of genital lymphedema.
• Take part in slow, carefully controlled exercises. Follow an exercise plan that a lymphedema therapist designs for you.
• Maintain a healthy weight for you. A healthcare provider or dietitian can help you establish healthy eating patterns.

What can I expect if I have genital lymphedema?

Genital lymphedema is a chronic condition. Treatment and lifestyle changes won’t cure it, but they can help effectively manage your symptoms.

Is there anything I can do to feel better?

Healthy eating habits may help you control genital lymphedema swelling. Your lymphatic system is more effective when you incorporate eating patterns that include plenty of fruits, vegetables, lean protein and whole grains. It’s also a good idea to:

• Limit your salt intake. Salt can increase the amount of fluid in your body. Fresh herbs, garlic, oregano, chili powder and dry mustard can season your food without causing fluid retention.
• Drink lots of water. Drinking water helps flush fluids out of your body. You should aim to drink 64 fluid ounces (eight 8-ounce glasses) each day.

When should I see a healthcare provider?

Schedule an appointment with a healthcare provider if you have symptoms of genital lymphedema. Without treatment, it can get worse and may lead to other complications.

You may wish to ask the following questions at your appointment:

• How do you know I have genital lymphedema?
• If I don’t have genital lymphedema, what other condition might I have?
• How severe is my genital lymphedema?
• What other lifestyle changes should I make?
• Can you recommend a mental health professional, support group, dietitian or lymphedema therapist?

When should I go to the ER?

Go to the nearest emergency room if you have signs of an infection, including:

• A fever over 100.4 degrees Fahrenheit (38 degrees Celsius)
• Increased pain
• Warmth in the area
• Discoloration, including streaks that lead away from the area