Reclaiming Intimacy with Hidradenitis Suppurativa: New Scientistific data and a Guide to Healing

My name is Jaap, and I am a biomedical scientist that also used to live with severe Hidradenitis Suppurativa, the kind that takes over your life. Today, I am completely asymptomatic because I learned how to heal Hidradenitis Suppurativa from within. More importantly, I’ve had the privilege of helping many other individuals with HS get their lives back, too.

Introduction

Let’s talk about something incredibly personal, something that often gets hidden behind the physical pain of Hidradenitis Suppurativa (HS): our sexual health and intimacy. If you’re reading this, chances are you know the struggle. The pain of lesions in sensitive areas, the feelings of shame or self-consciousness about wound and/or surgery scarring or active inflammation and drainage, the fear of rejection, the sheer exhaustion, it all weaves together, often making intimacy feel like another battleground in this already difficult war.

You might feel isolated, wondering if you’re the only one whose relationships are impacted, whose desire has faded, or whose body image makes closeness feel impossible.

I want you to hear this loud and clear: you are not alone. The scientific community is finally catching up to what we, as individuals living with HS, have known for years. Research is increasingly shedding light on the profound impact HS has on sexual health, validating our experiences and offering clues for a path forward. We’re going to explore some of that science today, not just to understand the problem, but to uncover the hope embedded within that knowledge. Understanding why HS affects intimacy is the first step toward reclaiming it, moving beyond just managing symptoms to truly healing from the inside out.

The Stark Reality: HS and Sexual Health by the Numbers

It’s not just in our heads. Study after study confirms that HS significantly impacts sexual well-being. Researchers like Dr. Slyper and colleagues found that people with HS, particularly younger adults aged 18-44, have a notably higher incidence of diagnosed sexual dysfunction compared to those without the condition.

Subsequent research, including work by Dr. Krajewski and colleagues using specific questionnaires like the Female Sexual Function Index (FSFI) and the International Index of Erectile Function (IIEF), has put concrete numbers on this: reported rates of significant clinical sexual dysfunction in women with HS can be as high as 71.8%, and erectile dysfunction in men as high as 63.8%. A systematic review by Nigro and colleagues summarized findings showing prevalence rates of sexual dysfunction ranging broadly from 42% to 71.8% across different studies.

Interestingly, gender seems to play a role in how this manifests. As studies reviewed by Dr. Yee and colleagues suggest, women with HS often report higher levels of sexual distress, the emotional and psychological burden, the anxiety, the unhappiness surrounding sex. Men, while also experiencing distress, show higher rates of measurable physical dysfunction like erectile dysfunction, as noted in the studies by Janse and colleagues and others. But let’s be clear, the impact is profound for everyone.

Why Does HS Interfere with Intimacy?

Understanding why this happens is crucial. It’s not one single factor, but a complex interplay of physical and psychological elements.

• The Physical Barriers: This is often the most obvious challenge.
  • Pain: Active lesions, particularly in the groin, buttocks, inner thighs, or under the breasts, can make physical touch and certain positions incredibly painful. The thorough qualitative research by Dr. Thomson in her thesis vividly captured how devastating this pain can be for couples.
  • Location: As found by Cuenca-Barrales and colleagues and Krajewski and colleagues, involvement of the anogenital areas is strongly associated with greater sexual dysfunction and distress.
  • Drainage and Odor: The unpredictable nature of draining lesions and associated odor can lead to significant self-consciousness and anxiety during intimate moments. Cuenca-Barrales and colleagues found suppuration was a primary interfering symptom reported by men, while pain was primary for women.
  • Scarring: While sometimes thought of as “inactive,” scarring can cause physical restrictions, discomfort, and contribute to negative body image.

• The Psychological Toll: This is often the heavier, more insidious burden.
  • Shame and Self-Disgust: Dr. Thomson’s work powerfully highlighted feelings of self-disgust and shame among patients, making them feel unworthy or “gross.” This directly impacts the desire for and comfort during intimacy.
  • Body Image: Visible lesions, scarring, and the perceived “uncleanliness” associated with drainage can severely damage body image and self-esteem, making individuals hesitant to be seen or touched. Dr. Yee and colleagues emphasized the role of body image in sexual health impairment.
  • Fear of Rejection: The fear that a partner (or potential partner) will be repulsed by the physical signs of HS is a major barrier, especially for single individuals, as documented by Cuenca-Barrales and colleagues.
  • Depression and Anxiety: We know HS carries a heavy mental health burden. Dr. Slyper and colleagues found that depression and anxiety significantly modify the risk of sexual dysfunction in HS patients. It’s a vicious cycle: HS contributes to depression/anxiety, which in turn impacts libido and sexual function, which can then worsen mood.

• Impact on Relationships: HS doesn’t just affect the individual; it impacts the partnership. Dr. Thomson’s research explored the concept of “dyadic coping,” highlighting how couples navigate the challenges together, from managing pain during flares to finding alternative ways to express intimacy when intercourse isn’t possible. However, it can also lead to strain, guilt (on the part of the patient feeling like a burden), and frustration. For single individuals, Cuenca-Barrales and colleagues found HS negatively impacts the willingness to meet new people and the perceived chances of forming relationships.

• Fertility Concerns: Particularly for women, concerns about fertility add another layer of complexity. Research by Masson and colleagues highlighted that women with HS report high rates of infertility and worry about how both HS and its treatments might affect their reproductive health.

The Severity Paradox

You might assume that more severe HS (e.g., Hurley Stage III) automatically means worse sexual function. However, the research, as summarized by Nigro and colleagues, suggests it’s not always that simple. While severity can play a role, factors like pain levels, the presence of odor, lesion location (especially anogenital), and psychological distress often seem to have a stronger correlation with sexual dysfunction than the overall Hurley stage. This tells us that even “mild” HS can have a devastating impact on intimacy if it involves significant pain or affects psychologically sensitive areas.

The Knowledge Gap: Why Aren’t We Talking About This?

Perhaps one of the most consistent and frustrating findings across multiple studies, including those by Janse and colleagues, Yee and colleagues, and Cuenca-Barrales and colleagues, is the profound silence surrounding sexual health in the clinic. Patients consistently report that their doctors rarely, if ever, ask about sexual health. Only a tiny fraction feel their concerns are adequately addressed.

This is a critical failure. It leaves patients feeling even more isolated and ashamed, unsure where to turn for help. It reinforces the idea that these struggles are just something “you have to live with.” This silence prevents a truly holistic approach to care, ignoring a fundamental aspect of human well-being and quality of life.

The HS Arma Philosophy: Healing the Root to Reclaim Intimacy

So, how do we move from this place of frustration and silence toward healing? This is where the HS Arma philosophy offers a different path. We start by acknowledging the Fire/Smoke Alarm reality of HS.

Conventional treatments (pain medications, antibiotics, even biologics) are often focused on managing the immediate symptoms: the pain, the inflammation, the drainage. They are like silencing the smoke alarm. They can provide crucial, temporary relief, allowing you to function. But they rarely address the fire, the underlying systemic inflammation and immune dysregulation that causes the physical lesions and contributes significantly to the psychological burden (depression, anxiety, negative body image) that devastates sexual health.

At HS Arma, we focus on putting out the fire. Our approach centers on highly effective, evidence-based nutrition and lifestyle changes, natural therapies, and supportive practices designed to:

1. Reduce Systemic Inflammation: By identifying personal food triggers, adopting an anti-inflammatory diet, managing stress, optimizing sleep, and using targeted natural therapies, we calm the body-wide inflammation that fuels both the physical lesions and the psychological distress. Less inflammation often means less pain, less drainage, and fewer flares, directly reducing the physical barriers to intimacy.
2. Support Mental & Emotional Well-being: Calming systemic inflammation has a direct positive impact on mood and anxiety levels. Combined with stress management techniques and the support of a community that understands (addressing isolation and shame), this helps lift the psychological weight that crushes libido and self-esteem.
3. Heal the Skin Barrier: While working from the inside out, we also focus on gentle, natural skincare and wound care to soothe active lesions and support the skin’s healing process, reducing odor and improving comfort.
4. Empowerment Through Understanding: Knowledge is power. Understanding the why behind HS and its connection to sexual health shifts you from feeling like a victim of your body to being an active participant in your healing.

We view pharmaceuticals and surgeries as powerful shields, at moments definitely necessary to protect you during the worst of the battle or to remove irreversibly damaged tissue, but they are not the foundation. The foundation is building a resilient, balanced body where the fire simply doesn’t have the fuel to burn. This foundational work addresses the root causes impacting all aspects of life, including intimacy.

Key Takeaways

• HS Profoundly Impacts Sexual Health: High rates of sexual dysfunction and distress are scientifically documented in both men and women with HS.
• It’s Multifactorial: Physical symptoms (pain, location, odor) and psychological factors (shame, body image, depression, anxiety) are deeply intertwined and contribute significantly.
• Severity Isn’t the Only Factor: Pain, location, and psychological state often correlate more strongly with sexual dysfunction than the overall Hurley stage.
• Clinicians Need to Break the Silence: There’s a critical gap in care; doctors must proactively and sensitively address sexual health concerns with HS patients.
• A Root-Cause Approach Offers Hope: Focusing on reducing systemic inflammation through nutrition, lifestyle, and natural therapies addresses the underlying drivers of both physical and psychological barriers to intimacy, offering a path to lasting improvement.

Conclusion: Reclaiming Your Whole Life

Living with Hidradenitis Suppurativa can feel like parts of your life are constantly being stolen, your comfort, your confidence, your social life, and yes, sometimes your intimacy. But I want to leave you with a message of hope grounded in science and lived experience. Healing is possible. Achieving remission, a state where HS no longer dictates the terms of your life, is possible. And that includes reclaiming your sexual health and the ability to connect intimately with others without pain or fear.

The journey starts by understanding that HS is a systemic issue, a sign of an internal imbalance. By shifting the focus from just silencing the symptoms to addressing the root cause, the underlying inflammation, you embark on a path that heals not just your skin, but your whole self. You are not defined by this disease. You have the power to change your internal environment, calm the fire, and rebuild your health from the foundation up. In the HS Arma community, we walk this path together, supporting each other with knowledge, compassion, and proven strategies. Intimacy is a vital part of a full life, and it’s a part you deserve to reclaim.

---

References

1. Thomson, K. (2022). The Experiences of Individuals with Body Dysmorphic Disorder: A Systematic Review and Thematic Synthesis, and The Experience of Living with Hidradenitis Suppurativa for Affected Individuals and their Partners: An Interpretative Phenomenological Analysis [Doctoral thesis, Cardiff University]. https://orca.cardiff.ac.uk/id/eprint/152970/2/LSRP%20-%20Kathryn%20Thomson%20-%20post%20viva%20corrections%20edition.pdf
2. Slyper, M., Strunk, A., & Garg, A. (2018). Incidence of sexual dysfunction among patients with hidradenitis suppurativa: a population-based retrospective analysis. British Journal of Dermatology, 179(2), 502–503. https://doi.org/10.1111/bjd.16483
3. Janse, I. C., Deckers, I. E., van der Maten, A. D., Evers, A. W. M., Boer, J., van der Zee, H. H., Prens, E. P., & Horváth, B. (2017). Sexual health and quality of life are impaired in hidradenitis suppurativa: a multicentre cross-sectional study. British Journal of Dermatology, 176(4), 1042–1047. https://doi.org/10.1111/bjd.14975
4. Krajewski, P. K., Strobel, A., Schultheis, M., Staubach, P., Grabbe, S., Hennig, K., Matusiak, Ł., von Stebut, E., Garcovich, S., Bayer, H., Heise, M., Kirschner, U., Nikolakis, G., & Szepietowski, J. C. (2024). Profound Sexual Dysfunction Among Patients with Hidradenitis Suppurativa: A Cross-sectional Study. Dermatology and Therapy, 14(7), 1823–1838. https://doi.org/10.1007/s13555-024-01196-y
5. Nigro, A. R., Osman, A., Cleland, E., Povelaitis, M., & Handler, M. Z. (2025). The Impact of Hidradenitis Suppurativa on Sexual Health: A Systematic Review. Dermatologic Therapy, 2025, Article 2247169. https://doi.org/10.1155/dth/2247169
6. Cuenca-Barrales, C., & Molina-Leyva, A. (2020). Sexuality in Patients with Hidradenitis Suppurativa: Beliefs, Behaviors and Needs. International Journal of Environmental Research and Public Health, 17(23), 8808. https://doi.org/10.3390/ijerph17238808
7. Masson, R., Shih, T., Park, S., De, D. R., Gierbolini, A., Alavi, A., Garg, A., Micheletti, R. G., Shi, V. Y., & Hsiao, J. L. (2023). Patient Perspectives on Hidradenitis Suppurativa and Infertility: A Survey Study. Dermatology, 239(5), 732–737. https://doi.org/10.1159/000531727
8. Yee, D., Collier, E. K., Atluri, S., Jaros, J., Shi, V. Y., & Hsiao, J. L. (2021). Gender differences in sexual health impairment in hidradenitis suppurativa: A systematic review. International Journal of Women’s Dermatology, 7(3), 259–264. https://doi.org/10.1016/j.ijwd.2020.10.010

Important Medical Disclaimer

1. Not Medical Advice: All content and information on this website is for informational and educational purposes only. It does not constitute medical advice and is not a substitute for professional diagnosis, treatment, or consultation with a qualified healthcare provider.

2. My Role and Qualifications: I am a biomedical scientist and PhD candidate and share information from that perspective, combined with my personal experience as a patient with Hidradenitis Suppurativa. However, I am not a medical doctor, physician, or registered healthcare professional. Do not consider our relationship a doctor-patient relationship.

3. Consult Your Doctor: Always seek the advice of your medical doctor or another qualified health professional with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you have read on this website. If you suspect you are experiencing a medical emergency, or a severe infection, do not rely on this website or the HS Arma community, please call your local emergency services or go to the nearest emergency room immediately.

4. A Critical Warning on Medication: Pharmaceutical drugs are a crucial tool in managing Hidradenitis Suppurativa for many people. Under absolutely no circumstances should you ever alter, reduce, or stop taking your prescribed medication without the explicit direction of the doctor who prescribed it. Doing so can be dangerous. Always consult with your doctor before doing anything related to your treatment plan.

5. No Liability: Your use of this website and reliance on any information provided is solely at your own risk.

6. Individual Results May Vary: Every patient’s biological baseline, genetics, and adherence to the protocol is different. Therefore, I cannot guarantee specific results, cures, or timelines for your Hidradenitis Suppurativa.

7. Scientific and Expressive Freedom: The articles published on this blog are distinct from formal peer-reviewed academic literature. They serve as an independent platform for my personal viewpoints, scientific hypotheses, and philosophical reflections as an independent scientist and HS patient. While grounded in biomedical research, I exercise a degree of expressive freedom to translate rigid academic data into insights from a patient perspective. These writings are my personal meditations on the science of HS and should be read as my individual perspective, not as universally accepted clinical consensus or formal peer-reviewed literature.