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.
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.
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.
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.
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 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.
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.
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.
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.
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.
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:
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.
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.
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.