Genital Lymphedema - Causes, Symptoms And Treatment

Genital Lymphedema

When we speak about lymphedema, the conversation typically involves the more commonly experienced forms of lymphedema such as that which occurs within the extremities, such as lymphedema of the arms and hands, or lymphedema of the legs and feet. While generally observed in the extremities, lymphedema can also develop in the truncal region, head and neck (facial lymphedema) and even the genitals (genital lymphedema). Often overlooked during the lymphedema conversation, likely due to the extremely personal nature of the condition, genital lymphedema is never less a debilitating condition that should be understood and properly treated.

What Is Genital Lymphedema?

Genital lymphedema is a condition marked by a buildup of lymph fluid that is caused by disruption in the lymphatic system's ability to drain fluid due to blockage or damage which results in swelling in the soft tissues of the genital area. Genital lymphedema can affect both males and females and can lead to various complications, including mobility limitations, urinary difficulties, and changes or decrease in sexual function.

What Causes Genital Lymphedema?

There are two types of genital lymphedema: Primary and Secondary.

• Primary genital lymphedema is the less common form of lymphedema and is a condition that people are born with. Primary genital lymphedema is characterized by developmental defects within their lymphatic system which causes fluid buildup. Symptoms of primary lymphedema may occur at birth or years later as developmental growth occurs.
• Secondary lymphedema is much more prevalent and often occurs after specific events such as cancer treatment (surgery or radiation) or infection of organs within the genital area, such as the prostate, bladder, testicles, penis, cervix, ovaries, vulva or rectum. Secondary genital lymphedema may develop when the lymphatic system's ability to drain lymphatic fluid is impacted, resulting in lymph fluid build up.

What Are The Symptoms Of Genital Lymphedema?

The physical symptoms of genital lymphedema include swelling in the abdomen or genital region (for men, swelling and pain in the penis and/or scrotum, and for women pain and swelling in the pelvis and labia), difficult or painful urination, leakage of urine or vaginal fluid, thickening or hardening of the skin, skin breakdown and sores. Genital lymphedema may also be accompanied by generalized lymphedema in the lower limbs.

In addition to the direct symptoms, genital lymphedema may also lead to an increased risk or occurrence of infections (cellulitis). Additionally, genital lymphedema may result in the decline of the overall quality of life due to pain caused by walking, sexual intercourse or other movements. Beyond the physical impact, genital lymphedema may also have an emotional impact due to the psychological distress and impact on intimacy that it causes.

How Can Genital Lymphedema Be Treated?

Early diagnosis and treatment of genital lymphedema are crucial to helping minimize complications associated with the condition, and to help improve the overall quality of life. If you have any of the symptoms of, or feel that you may have genital lymphedema, it is important to discuss your concerns about genital swelling with your healthcare professional.

The standard first treatment approach towards lymphedema is known as Complete Decongestive Therapy (CDT). As part of CDT, a course of manual lymphatic drainage (MLD), which is a specialized massage technique to help move fluid through the lymphatic system will likely be performed. In addition to MLD, your healthcare provider will likely also use lymphedema bandaging using specialized bandaging supplies for lymphedema wrapping to provide gradient pressure that will help drain fluid from the affected area and help reduce swelling.

Once you have completed the Complete Decongestive Therapy (CDT) phase of treatment, you will likely need to use compression garments, such as compression leggings and capris, compression shorts or compression pantyhose to help reduce swelling and improve lymphatic drainage. Specialty foam and padding, as well as swell spots and compression pads designed specifically for genital lymphedema treatment can also be used in conjunction with compression garments to provide targeted compression to the genital region. Exercise as prescribed by your healthcare provider can also help improve lymphatic function and reduce swelling.

Can Genital Lymphedema Be Cured?

Damage to the lymph system cannot be repaired and there is no cure for genital lymphedema. However, proper treatment can help control the swelling associated with genital lymphedema and help reduce the chances of related complications.

The following is a list of simple guidelines that you can follow to help keep your genital lymphedema under control:

• Contact your healthcare provider if your genital lymphedema should worsen. Leaving genital lymphedema untreated or waiting too long before seeking help may lead to more serious problems that cannot be reversed.
• Carefully manage your condition by adopting and practicing careful hygiene practices. Keep the skin in the affected area clean and moisturized to help prevent infection, as fluid buildup makes it easier for bacteria to grow. Dry or damaged skin also has a higher risk of being susceptible to health complications including infection.
• Make sure that body fluids are able to flow easily. Do not cross your legs when sitting and change your sitting position at least every 30 minutes. Although compression will help maintain swelling, avoid tight clothing or elastic bandages that may constrict the flow of body fluids.
• Do not expose the genitals to higher levels of heat, such as that which is commonly found in hot showers, saunas or hot tubs.
• Ask your healthcare provider to develop a personalized exercise plan that includes slow, carefully controlled exercises which you can add to your daily routine.
• Maintain your ideal body weight.