Lymphedema hinders many aspects of life, including intimacy and sex. While many lymphedema patients feel that intimacy and sex acts are simply too challenging to attempt while dealing with the condition, the truth is that with the right tools and resources, even with lymphedema, some intimate connection and pleasure can indeed be found!
How does Genital Lymphedema occur?
When a significant amount of fluid build-up occurs in the genital region of the body, this is genital lymphedema. This is a rare form of lymphedema, but numbers have been rising in recent years (WHO). Updated last in 2023, studies from the NIH show that one in one thousand Americans with lymphedema have genital lymphedema (NIH). Many specialists believe that these numbers are not correct, as many are not diagnosed with the condition or do not bring it up to their medical care team (WHO).
Males most often represent the load of genital lymphedema cases, where the condition presents with pain and varying levels of swelling in the penis and scrotal area. This can also accompany swelling in the thighs and lower legs. For females, the labia may become painful and swell, with or without lower leg swelling.
Anyone with lymphedema is at a higher risk for infections, skin issues and changes, thickened or hardening skin, urinary problems, and sexual dysfunction (Lymphedema Education). This condition can also develop after or coincide with other medical issues like cancer treatment, injury, or accident with any type of medical intervention.
Treatment for genital lymphedema ranges per case and individual. Treatments might range from debulking and reduction surgery, microsurgery of the lymphatic system, or other conservative treatment (NIH). Microsurgery involves lymphatic reconstruction to restore proper lymphatic drainage. Most specialists begin with a first line, least invasive approach with compression, CDT therapy (complete decongestive therapy), physical and/or occupational therapy, pneumatic compression therapy, and lots of time spent on self-care.
Sexuality with Genital Lymphedema
Lymphedema of the genitals is often painful, causing nearly constant discomfort and swelling in the pelvic region. While it can feel isolating, discouraging, and cause body image issues for the individual, it is vital that treatment is sought quickly to avoid further issues. When left untreated, genital lymphedema creates an elevated risk of these possible issues:
- 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 your initial diagnosis, you may be advised to avoid certain things that could irritate your condition. Sometimes this might mean avoiding extreme temperature changes in hot showers, saunas, or towards the cold side of the bar- with ice or cold packs.
An individual might also need to refrain from heavy activity or certain types of sexual acts. Penile-scrotal and labial swelling can be extremely painful, so stimulation in these areas could trigger more swelling, pain, or discomfort. If this occurs, stop the activity and rest the area until you can talk with your medical care team.
Body image issues are a first line issue for lymphedema patients as their self-image is often tarnished. The emotional and psychological side of lymphedema might require mental health therapy or counseling to help keep the individual on track and in a positive light. Body positivity can be a hard thing to work towards, but finding acceptance and empowerment can help your healing journey.
Even with lymphedema, a healthy intimacy and sex life are still fully possible! There are many things that you utilize to make things “easier,” or more cohesive for your situation. For sexual dysfunction issues like severely dry genital skin, using silicone-based lubrication will help you to have a longer lasting friction barrier to protect your skin, and increase sensitivity. Having trouble bending or reaching areas of your body for pleasure? There are a variety of sexual health and wellness tools that exist to help people with all kinds of limitations and disabilities find the pleasure that they desire!
Empowering Intimacy is here to help with that! If you need guidance on which devices, tools, or positioning furniture might be beneficial for your situation, please reach out to our team.
Citations:
City of Hope
World Health Organization
National Cancer Research Foundation
Lymphie Strong
Lymphedema Education
National Institute of Health and Human Services