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Genital Lymphedema and Sexuality: Empowerment Through Self-Care

Published: 11 September, 2023

This is a 7-minute read.

Genital lymphedema impacts many areas of your life—including sex. For those living with lymphedema, things like intimacy may seem challenging. However, given the right resources and support, you can empower yourself to succeed in managing your genital lymphedema and affirm your sexuality. 

The month of September is Gynecologic Cancer Awareness Month, which brings attention to genital lymphedema. Also, March is Lymphedema Awareness Month, which is an opportunity to raise awareness about lymphedema and educate people everywhere about it. However, awareness is important all year round.

This article explores the causes and most common symptoms of genital lymphedema. We will describe the connection between genital lymphedema and sexuality, in addition to providing helpful resources to support you in living a full and active life. 

What is Genital Lymphedema and How Does it Occur?

Genital lymphedema involves a significant buildup of fluid in the genital region and is considered one of the rarer forms of lymphedema. Of the approximately 1 in 1,000 Americans who have lymphedema, available statistics report fewer than 1% have genital lymphedema. It is important to acknowledge that genital lymphedema is often underdiagnosed and the percentage of those affected may actually be higher.

Men represent the majority of cases of genital lymphedema, in which the presentation is typically swelling and pain in the penis and scrotum. This may occur in addition to swelling that is in the thighs and lower legs. 

In women, the symptoms involve pain and swelling in the pelvic region and labia, with or without the same symptoms in the lower limbs. Anyone with genital lymphedema is at a higher risk of infections, thickened/hardened skin, urinary problems, and reduced sexual function.

Many people with genital lymphedema develop it after experiencing a significant health event such as cancer, surgery, or an infection. Therefore, treatment for genital lymphedema may coincide with, or follow, cancer treatment and other types of medical intervention.

Treatment for genital lymphedema ranges from debulking/volume reduction surgery, lymphatic microsurgery, and conservative treatment. Debulking focuses on reducing the excess fluid and swelling in the genital region. Lymphatic microsurgery involves lymphatic reconstruction to restore lymphatic drainage. 

Conservative treatment is a first-line approach that focuses on techniques including compression, complete decongestive therapy (CDT), physical or occupational therapy, pneumatic compression therapy, and self-care. If you are considering surgery, you may be advised to start a conservative treatment regimen before or in addition to your surgical treatment.

Genital Lymphedema and Sexuality

Because genital lymphedema may lead to discomfort and swelling in the genital region, it could interfere with sexual function. If left without proper treatment, people with genital lymphedema are at an elevated risk of developing other complications that may also interfere with the function of the sexual organs, such as:

  • Cellulitis and other skin infections
  • Elephantiasis
  • Erysipelas, a bacterial infection marked by skin inflammation and fever
  • Sexual function and arousal problems
  • Urinary issues, including severe pain
  • Overall reduced quality of life

After a diagnosis of genital lymphedema, your doctor may discourage you from engaging in certain activities that could aggravate your condition. For example, doctors often recommend avoiding extreme temperatures from hot showers, saunas, and ice packs.

Similarly, you may be discouraged from engaging in strenuous exercise or certain forms of sexual activity for your own comfort and safety. Often, extreme discomfort and pain are associated with penile-scrotal lymphedema. There are also psychosocial components that may impact the dynamic with sexuality and comfort with yourself and partner, including self-image and confidence. 

Lymphedema comes with a heavy emotional and psychological impact that can make it challenging at times to optimize quality of life. Some individuals find it difficult to maintain body positivity with a life-changing condition like genital lymphedema.

However, lymphedema does not preclude having a healthy and satisfying sex life. You can still feel happy, healthy, energized, and sexual while living with genital lymphedema. 

You may find it helpful to start with low-impact decongestive exercises to stimulate healthy fluid flow throughout your body. Yoga, for example, has a proven positive impact on mobility and quality of life for people with lymphedema.

The muscle-pumping action in lymphatic decongestive exercises and pelvic floor exercises can positively impact the cardiovascular system and genito-sexual tract. Physical and occupational therapy may also be an effective method of encouraging lymphatic fluid movement. Of course, always consult your doctor before starting any new treatment plan.

Another important preventative measure is to keep the skin clean and moisturized to help reduce the risk of infection, and wearing clothing that is soft and breathable.

Lympha Press: Supporting Your Lymphedema and Sexuality With Innovative Therapy Options

By empowering yourself to take control of your condition, you may feel more strength and confidence in all aspects of your life. 

Lympha Press offers innovative therapy options for people with genital lymphedema. Many people with genital lymphedema enjoy the ease and comfort of Lympha Pants, which treats the entire lower body, including the abdomen, lower back, hips, and the genital area.

For more information about your lymphedema treatment options, please take a look at the Lympha Press blog. You’re surrounded by a community of doctors and patients who care about helping you live life to its fullest, including your friends at Lympha Press!

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