Connect with others who understand.

sign up log in
Resources
About myHSteam
Powered By

Genital Swelling With HS: Understanding Lymphedema

Posted on June 23, 2022
Medically reviewed by
Ariel D. Teitel, M.D., M.B.A.
Article written by
Sarah Winfrey

Living with hidradenitis suppurativa (HS, or acne inversa) can be hard — especially dealing with the condition’s side effects. One of the rarer potential side effects of HS is lymphedema (swelling) in the groin area. This kind of swelling can be extremely uncomfortable, and it can negatively affect a person’s overall well-being and quality of life. Luckily, there are treatments for this symptom.

In this article, we will discuss what lymphedema of the groin is, how it can affect people with HS, and how it may be treated. If you experience genital swelling with HS, talk to your dermatologist or health care provider. They will be able to diagnose the cause and recommend the right treatment.

What Is Lymphedema?

The lymphatic system plays a key role in the body’s immune system. This system carries a fluid called lymph throughout the body. Lymphedema is a specific kind of swelling, or edema, that occurs when the lymphatic system cannot drain lymph as normal.

Lymph nodes are structures in the lymphatic system that filter out germs, cancer cells, and more. Lymph flows through lymphatic channels, which are like veins for lymph. When lymph nodes or lymphatic channels aren’t working properly, lymph cannot drain from the body as usual. It builds up and causes lymphedema. Lymphedema can lead to swelling, pain, a heavy feeling, restricted range of motion, repeated local infections, and more.

How Does Lymphedema Affect the Genital Area in People With HS?

When people with HS experience lymphedema, it usually occurs in the genitals. It affects men three times more often than women. Genital lymphedema can occur in the groin (where the inner legs meet the abdomen), scrotum, penis, buttocks, perineum, labia majora, vulva, and more.

Genital lymphedema usually causes significant swelling. It can also cause hardening of the skin from inflammation (induration), as well as bumps on the skin that may be confused with a sexually transmitted infection. Lymphedema in the groin will look different for different people. In some cases, it may be confused with HS outbreaks.

Inflamed Lymph Nodes vs. Lymphedema

Groin pain and swelling are common with HS. Sometimes, the lesions or comedones (blocked hair follicles) caused by HS can affect the lymph nodes. As one myHSteam member shared, “Right now, I have an abscess in my groin, and my lymph nodes are all inflamed.”

Though the lymph nodes are part of the lymphatic system, lymph node inflammation is not the same as lymphedema. If the lymph nodes remain swollen for a long time, a person may eventually develop lymphedema.

What Causes Lymphedema for People With HS?

Lymphedema usually occurs in people who have a long history of HS and have experienced chronic or recurrent swelling in their genital region. While researchers are not sure exactly how HS leads to lymphedema, they believe it has to do with inflammation.

Long-Term Inflammation

Long-term inflammation may destroy lymph drainage channels, or it may block them and make them unable to work properly. When inflammation cannot be reduced, lymphatic fluid will build up in the area, causing swelling.

Physical Damage to the Lymphatic System

Many of the signs and symptoms of HS — fistulas, lesions, nodules, cysts, recurrent abscesses, ulcers, and more — can damage the lymphatic system. Since HS commonly occurs in the groin, this damage can occur in the groin as well.

Dilated Lymphatic Channels

In 2011, researchers studied a case of genital swelling due to lymphedema in a person with HS. They determined that the condition seemed to cause dilated (widened) lymphatic channels.

Dilated lymphatic channels are usually seen in people diagnosed with and treated for cancer. They can cause many lymphatic drainage problems. However, this is a very rare result of HS.

Surgery for HS

Some people have their lymph nodes removed as part of their treatment for HS. Several myHSteam members have had this procedure. As one explained, “I have been battling HS for over 30 years now. I’ve had multiple surgeries, and one removed my right armpit and lymph nodes.” Another shared, “My last surgery removed lymph nodes from one side of my groin and the infected tissue.”

While surgery can be an effective treatment for HS, removing lymph nodes is associated with an increased chance of lymphedema. Most of the research connecting lymph node removal with lymphedema has focused on people with breast cancer or other cancers. However, research has established a connection between lymph node removal and swelling. People who choose to have their lymph nodes removed to help control HS should be aware that lymphedema could occur as a result of the surgery.

How To Manage Lymphedema Related to HS

There are many ways to deal with lymphedema related to HS. You should always talk to your dermatologist or doctor if you think you may have lymphedema or if your HS is not under control. They can help you find solutions that will work best for your body and needs.

Take Steps To Prevent Lymphedema

People who have HS should be aware that lymphedema is a possible side effect of the condition. They should take precautions to help avoid developing lymphedema in their genital region. This is even more crucial for those who have had their lymph nodes removed.

To help prevent lymphedema in the groin:

  • Avoid tight clothing in the area. Looser underwear may help prevent the condition.
  • Keep skin in the area moist with unscented lotion or moisturizer that does not exacerbate HS.
  • Exercise appropriately, like with light stretching. Ask your doctor which exercises are right for you.
  • Maintain a healthy weight. Obesity can tax the lymphatic system.

Find an Effective Treatment for HS

Since lymphedema usually occurs after years of HS, managing your HS is key to preventing lymphedema. Talk to your doctor, dermatologist, or other HS specialist to determine the best way to treat the condition and keep it from becoming more severe.

Some of the medications used to treat HS, including biologics, may prevent lymphedema. However, they will likely not help if you have already developed the condition.

Consider Surgical Management

Surgery to remove the affected tissue seems to be the best treatment option for people diagnosed with lymphedema caused by HS. Removing the affected tissue has a high success rate of both treating the negative side effects of lymphedema in the groin and increasing quality of life.

Different surgical treatment techniques may be used, depending on different factors. According to some research, the majority of people who undergo these surgeries return to full function — including sexual function. They also report an improved quality of life.

Find Your HS Team

When you have questions, myHSteam is a safe place where you can share your story and connect with other people who understand what you’re going through. Here, you can ask questions, join conversations, and meet others who are navigating life with HS. It won’t be long before you have a network of people from around the world who will support you on your journey with HS.

Are you dealing with lymphedema caused by HS? Share your thoughts or experience in the comments below or by posting on myHSteam.

All updates must be accompanied by text or a picture.
Ariel D. Teitel, M.D., M.B.A. is the clinical associate professor of medicine at the NYU Langone Medical Center in New York. Review provided by VeriMed Healthcare Network. Learn more about him here.
Sarah Winfrey is a writer at MyHealthTeam. Learn more about her here.

Related articles

People living with chronic skin conditions like hidradenitis suppurativa (HS) are at higher risk...

Depression and HS: Ways To Cope

People living with chronic skin conditions like hidradenitis suppurativa (HS) are at higher risk...
Pain from hidradenitis suppurativa (HS) can make getting a good night’s sleep difficult. Also...

Sleep and Hidradenitis Suppurativa: 6 Ways To Manage Nighttime Pain and Get Better Rest

Pain from hidradenitis suppurativa (HS) can make getting a good night’s sleep difficult. Also...
If you’re living with hidradenitis suppurativa (HS), you know that lesions can appear anywhere on...

Perianal HS: Symptoms and Management

If you’re living with hidradenitis suppurativa (HS), you know that lesions can appear anywhere on...
Hidradenitis suppurativa (HS, or acne inversa), a chronic inflammatory skin condition, results...

Managing Discharge With HS

Hidradenitis suppurativa (HS, or acne inversa), a chronic inflammatory skin condition, results...
Hidradenitis suppurativa (HS), also known as acne inversa, is a chronic, inflammatory skin...

Hidradenitis Suppurativa on and Under the Breasts: Symptoms and Management

Hidradenitis suppurativa (HS), also known as acne inversa, is a chronic, inflammatory skin...
Hidradenitis suppurativa (HS) causes pain that can be difficult to treat. In fact, pain is one of...

Can Cognitive Behavioral Therapy Help Chronic Pain in Hidradenitis Suppurativa?

Hidradenitis suppurativa (HS) causes pain that can be difficult to treat. In fact, pain is one of...

Recent articles

Hidradenitis suppurativa (HS) is a condition that causes painful, swollen bumps and scarring on...

HS and Diabetes: Understanding the Connection

Hidradenitis suppurativa (HS) is a condition that causes painful, swollen bumps and scarring on...
Although as many as 13 million people1 live with hidradenitis suppurativa (HS) in the U.S., not...

Is Your Doctor an HS Expert?

Although as many as 13 million people1 live with hidradenitis suppurativa (HS) in the U.S., not...
Early signs of hidradenitis suppurativa (HS) may be hard to detect. Symptoms can be as mild as...

QUIZ: Is This Acne, HS, or Something Else?

Early signs of hidradenitis suppurativa (HS) may be hard to detect. Symptoms can be as mild as...
Hidradenitis suppurativa (HS) is a skin disease that causes painful, recurring bumps that may...

What Is Hidradenitis Suppurativa?

Hidradenitis suppurativa (HS) is a skin disease that causes painful, recurring bumps that may...
Living with hidradenitis suppurativa (HS) can sometimes mean looking for answers that aren’t easy...

How To Feel Better With HS: Diet

Living with hidradenitis suppurativa (HS) can sometimes mean looking for answers that aren’t easy...
Living with hidradenitis suppurativa (HS) can be a challenge — especially in the work...

Managing Hidradenitis Suppurativa at Work

Living with hidradenitis suppurativa (HS) can be a challenge — especially in the work...
myHSteam My hidradenitis suppurativa Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close