Does this myHSteam member’s story sound familiar to you? “I’ve been trying for a baby and haven’t been successful time and time again. I’m beginning to think I’m not having luck because of my HS. Did anyone else have this problem? Is there anything I can do about this?”

Women with hidradenitis suppurativa (HS) may have a harder time becoming pregnant than most. It may be due to the skin condition itself, its treatments, or other related conditions.

In this article, we'll discuss the factors of HS that may play a role in infertility. We’ll also cover how to talk to your dermatologist (skin specialist) about planning your pregnancy. Infertility is difficult to go through, but your health care providers can help.

Infertility Is Common In Women With HS

HS is an inflammatory skin condition that causes painful lumps, nodules, or lesions to form underneath the skin. Mayo Clinic reports that HS commonly affects women of childbearing age — usually teenagers and young adults in their 20s. According to the American College of Obstetricians and Gynecologists, a woman’s fertility also peaks around the same time.

In recent years, studies have found that women living with HS often experience infertility. A study published in the journal Dermatology looked at how HS affected fertility in 312 women. The authors found that 41.5 percent of the participants who had ever tried becoming pregnant (conceiving) experienced one or more years of infertility. It’s worth noting that the infertility rate in the U.S. general population ranges from 6 percent to 8 percent.

Most of the women in the study who experienced infertility didn’t try any fertility treatments. Some were worried that the fertility treatments might make their HS symptoms worse. Fortunately, most who chose to use these treatments said their HS symptoms stayed the same.

Causes of Infertility With HS

The inflammation from HS also affects your body’s other systems. Studies show that people with HS have higher levels of inflammatory markers. One marker — tumor necrosis factor (TNF) — may play a role in HS and infertility. The good news is that blocking TNF with biologics, which are medications made from living organisms, may help treat fertility problems. Talk to your doctor about what treatments are safe to use while trying to conceive or while pregnant. They can help you understand the possible risks and benefits of using biologics during pregnancy.

Polycystic Ovary Syndrome and HS Infertility

One myHSteam member posed this question to others: “Does anyone know if HS is linked to infertility issues? Did it in any way make it harder to conceive?” Another member replied, “I believe so because it can also be triggered by hormones. It took me a while to have my daughter.”

Many women living with HS also have a hormonal condition known as polycystic ovary syndrome (PCOS). This comorbidity (when you have two or more health conditions at the same time) is associated with high TNF levels, inflammation, and infertility.

Long-term inflammation triggers the ovaries to make too much of the male sex hormone androgen. Women need a healthy level of androgens for normal bodily functions. However, if androgen levels are too high, it interferes with ovulation — when an egg is released from the ovary.

High androgen levels in PCOS stop your eggs from maturing properly. As a result, they’re not regularly released during your menstrual cycle (period). This is why many people with PCOS have irregular periods. Without proper ovulation, the egg can’t reach the uterus for fertilization and pregnancy.

Those with PCOS also have problems using the hormone insulin properly — known as insulin resistance. Insulin is important for using sugar in the blood to make energy. In PCOS, too much insulin can also trigger the ovaries to make more androgens. Research from the International Journal of Molecular Science shows that insulin resistance is common in people with HS.

Body Image and Sexual Health With HS Infertility

Living with an inflammatory skin condition like HS can negatively affect your confidence, self-image, and mental health. Adding infertility into the mix can complicate your feelings even more. You’re not alone if you feel embarrassed by your HS lesions in your sexual relationship. Reaching out to a therapist can help you work through these difficult feelings so you can have healthy intimate relationships.

Depending on where your symptoms are, you may also experience pain or discomfort. According to the American Academy of Dermatology Association, HS can develop on:

• The inner thighs
• The groin
• The breasts or below them
• The buttocks
• The skin between the genitals and anus
• The armpits

All of these factors can lead to sexual dysfunction, which negatively affects your efforts to conceive. Remember, you’re not on this journey by yourself. Reach out to your dermatologist or a fertility specialist to talk about managing your symptoms. There are also many infertility treatments available to help you start a family of your own.

Obesity and HS Infertility

Another risk factor for infertility is obesity. High body weight is a risk factor for HS, and it may make HS symptoms worse.

Fat cells can also make hormones — particularly estrogen. If you have a high body weight, you might make too much estrogen, which can trick the body. It may think you’re already pregnant or taking hormonal birth control. This might cause you not to ovulate and to have an irregular period. Certain fertility treatments are also less effective in people with higher body weights.

The same study of 312 women with HS found that obesity rates were similar in women who experienced infertility and those who didn’t.

Changing HS Treatment Plans To Avoid Infertility

If you’re planning to become pregnant, you may need to change your HS treatment first. Many medications used to manage HS symptoms and flares may not be safe to take when trying to conceive. They might not cause infertility, but they can cause birth defects or complications during pregnancy.

Examples include:

• Hormonal birth control pills
• Spironolactone
• Methotrexate
• Oral antibiotics like doxycycline, minocycline, and tetracycline
• Oral retinoid medications like isotretinoin

Your doctor can recommend safer treatments to take while trying to conceive. This way you can prevent symptom worsening and HS flares.

Pregnancy Complications With HS

Women with HS are also at an increased risk of pregnancy complications. One study found that pregnant women living with HS were more likely to have:

• Miscarriages
• Preterm births
• Health complications like diabetes and high blood pressure during pregnancy

Talk To Your Dermatologist About Planning Your Pregnancy With HS

When living with HS, it’s important to include your doctors and specialists when it comes to family planning. Be sure to let them know that you’re interested in becoming pregnant. They’ll assess your HS treatment plan to help avoid complications and encourage a healthy pregnancy.

If you’re facing infertility, tell your reproductive health specialist about your HS. They can recommend treatments and lifestyle changes that may help you become pregnant. With so many options available to treat infertility — including medications, surgery, and in vitro fertilization (IVF) — it’s possible to conceive with HS.

Working with your health care providers is key to treating infertility and improving your quality of life.

Talk With Others Who Understand

On myHSteam, the social network and online community for people with hidradenitis suppurativa and their loved ones, more than 40,000 members come together to ask questions, give advice, and share their stories with others who understand life with HS.

Have you experienced infertility while living with hidradenitis suppurativa? What treatments or lifestyle changes did you find helpful? Share your advice in the comments below, or start a conversation by posting on your Activities page.