Intimacy and Sexuality with Acne Inversa: An Honest Guide

Written by Dr. rer. nat. Dennis Alexander Kwiatkowski

Hidradenitis suppurativa (HS) is unique among common skin diseases in how directly it intersects with sexuality. The most frequently affected anatomical sites — groin, perineum, buttocks, inner thighs, axillae, breasts and chest — are also the body areas most involved in sexual contact and most subject to clothed-versus-unclothed visibility. The condition can be painful precisely where touch should be pleasurable, visible precisely where most people are most self-conscious, and chronic precisely in a domain where unpredictability is hardest to live with.

Despite this, sex and intimacy are largely missing from standard HS care. Dermatology appointments rarely address them; patient leaflets stop at vague language about “quality of life.” This article takes the topic seriously and addresses it directly. It is not a substitute for individualized conversation with a clinician, a sex therapist, or a partner, but it covers what the published research and clinical practice actually say.

Key takeaways

• Sexual dysfunction is significantly more common in people with HS than in the general population, including reduced desire, pain with intercourse, difficulty with arousal, and reduced sexual satisfaction. The effect is more pronounced in women and in patients with more severe disease.
• The drivers are both physical (pain, lesion location, drainage, scarring) and psychological (body image, anticipation of rejection, fear of pain). Both deserve attention.
• Communication with partners is the single most consistently helpful factor identified in the literature and in clinical practice — and the one most patients consistently underuse.
• Practical adaptations — timing around flares, positioning, lubrication, hygiene routines, lesion management — meaningfully improve sexual experience and are rarely discussed in clinical settings.
• Sex therapy, couples counselling, and pelvic floor physiotherapy are legitimate professional resources for HS-related sexual concerns and are underutilized.

What the research actually shows

The studies that exist on sexuality and HS are consistent in their main findings, even though the literature is smaller than for other dermatological conditions.

Multiple cross-sectional studies in HS populations have documented elevated rates of sexual dysfunction across standard instruments — the Female Sexual Function Index (FSFI) in women, the International Index of Erectile Function (IIEF) in men, and various measures of sexual distress. Rates of clinically significant sexual dysfunction in HS populations are roughly two to three times higher than in matched controls without HS. The effect is more pronounced in women than men, and worsens with disease severity (Hurley stage, lesion count, pain scores).

The same studies consistently identify the contributors:

• Physical pain at affected sites during or after sexual contact
• Active drainage or odour from lesions
• Visible lesions or scarring in areas exposed during intimacy
• Reduced libido secondary to chronic pain, fatigue, and depression
• Anticipatory anxiety about partner reactions, pain, or visible flares
• Avoidance of sexual situations leading to relationship strain

The contributors interact. A flare in the groin makes intercourse physically painful, which produces anxiety about future sexual encounters, which reduces desire, which reduces sexual frequency, which can be misread by a partner as loss of interest, which strains the relationship, which increases stress and may worsen the disease — a cycle that is documented in qualitative HS research and recognizable in clinical practice.

The physical dimension

The honest assessment of what physical adaptations actually help.

Timing. HS activity is rarely constant. Most patients can identify periods when active flares are present and periods when the disease is relatively quiet. Sexual activity during quiet periods is, predictably, more comfortable. This is straightforward in principle and harder in practice: relationships do not always run on the timeline of disease activity, and “let’s wait until I’m not flaring” can become indefinite if active periods predominate. The realistic goal is not to confine intimacy to symptom-free windows but to acknowledge that adaptation is reasonable when flares are present.

Position and pressure. Different sexual positions place different amounts of pressure and friction on different anatomical regions. For groin or inner-thigh lesions, positions that reduce direct lateral pressure on the inguinal region tend to be more comfortable. For axillary lesions, positions that avoid sustained pressure on the affected arm are easier. For perianal or gluteal lesions, side-lying positions often work better than positions with weight on the buttocks. These are not prescriptive — different bodies and different lesion patterns require different solutions — but the principle is worth stating explicitly: it is reasonable to prioritize positioning based on what the disease is doing, rather than treating positions as fixed and discomfort as inevitable.

Lubrication. Many people with HS, particularly women with genital or perineal involvement, find that the area is more sensitive to friction than before the disease developed. Generous use of high-quality water-based or silicone-based lubricant is a simple and meaningfully helpful adaptation. Avoid lubricants with added warming agents, glycerin (in those prone to thrush), or fragrances that may irritate inflamed skin.

Pre-intimacy hygiene routine. A predictable pre-intimacy routine — gentle cleansing, fresh dressing on any active lesions if exposure is a concern, pain medication well before activity if needed — reduces unpredictability. This is not romantic in the conventional sense; it is practical, and most patients find that a settled routine reduces anxiety more than it disrupts spontaneity.

Lesion management. A small absorbent dressing over an actively draining lesion is a reasonable practical step before intimacy. It is not a substitute for medical management of the underlying lesion but it reduces the immediate concern about drainage during sexual contact. For patients with significant scarring, gentle exploration of which scars are sensitive (some are anaesthetic, some are hypersensitive) and which are not is useful information for both partners.

After-care. A short cleansing routine after sexual activity — particularly for vaginal, anal, or oral contact with affected areas — is reasonable to reduce post-intimacy irritation. Specific antiseptic use is not generally needed if no open wounds are involved; ordinary gentle washing is sufficient.

The psychological dimension

The psychological obstacles to sexual intimacy with HS are often heavier than the physical ones, and they are systematically underaddressed in clinical settings.

Body image. People with HS commonly describe a sense that their body is “wrong” in ways that make sexual confidence difficult. This is reinforced by the locations of disease (the areas most associated with sexual attractiveness in cultural representation), the visible markers of disease (scarring, draining lesions), and the unpredictable course (which makes any sense of “being in control” of how one appears difficult to sustain). A separate article in this series covers shame and body image in HS in more detail.

Anticipation of rejection. A consistent theme in qualitative HS research is the fear of how a new sexual partner will react. The expected sequence — the difficult disclosure conversation, the moment of physical exposure, the partner’s facial expression — produces anticipatory anxiety that is often disproportionate to what actually happens. Most disclosures, in the actual experience of patients, go better than feared. This is not a guarantee for any individual situation, but it is worth knowing that the dread tends to be worse than the reality.

Pain memory. Patients who have experienced significant pain during a sexual encounter often develop conditioned anticipation of pain, which can affect arousal independently of any current physical limitation. This is biologically normal — pain memory is a real, well-characterized phenomenon — and it is amenable to intervention. Pelvic floor physiotherapy and sex therapy both have specific approaches to addressing pain-anticipation patterns.

Depression and reduced desire. Depression — which is significantly more common in HS, with prevalence of approximately 21% to 27% in HS populations versus 7% in general populations — directly reduces sexual desire. This is a chemical effect of depression itself, not a moral failure. Addressing the depression often improves sexual function independently of any change in skin disease.

Communication with partners

The single most consistently helpful factor across the patient experience literature is open communication with the partner about what the disease involves, what is currently happening, and what would help. The same literature consistently shows that this is the area patients find hardest.

What “open communication” actually means in practice:

Tell the partner what is happening physically. “My groin is flaring this week and pressure there is painful, so let’s try X position instead” is far more useful information than a vague “I’m not really feeling it tonight.” Specificity reduces the partner’s tendency to read avoidance as personal rejection.

Tell the partner what would help. Most partners want to be helpful and lack any way of knowing what helps absent direct guidance. “Could you avoid touching this area tonight” is actionable. “It would help if you didn’t say anything when you see this dressing” is actionable. Vague signals are not.

Make space for the partner’s reaction. A partner of someone with HS lives with the disease too, in a less direct but real way. Their concerns, fears, and questions deserve their own conversation rather than being suppressed in the name of not adding to the patient’s burden.

Distinguish disease from desire. “I am too sore today” is different from “I don’t want to be intimate with you.” The conflation of these is a source of significant relationship strain and is usually unintended. Saying which is which matters.

Address disclosure with new partners deliberately. When and how to disclose HS to a new sexual partner is one of the most stressful aspects of dating with the disease. There is no universally right answer. Some patients prefer early disclosure (before any sexual contact) to filter out partners who cannot handle it. Others prefer later disclosure after some connection is established. Both approaches have real costs and benefits and are individual choices. What does not work, almost universally, is concealing the disease indefinitely; the eventual discovery is harder than appropriate earlier disclosure.

A separate article in this series addresses the partner’s perspective specifically.

When to seek professional help

The standard dermatology pathway often does not address sexual concerns adequately, even when the disease is medically well managed. The following situations warrant active escalation to a clinician who can address the sexual dimension specifically:

• Persistent pain with intercourse that does not improve with positioning, timing, lubrication, and disease control. Gynaecological or urological assessment is appropriate; pelvic floor physiotherapy may help.
• Loss of sexual desire that has not responded to improvements in disease activity and that is causing personal distress or relationship difficulty. This warrants assessment for depression, hormonal contributors, and medication side effects.
• Anxiety, panic, or avoidance specifically around sexual situations, beyond what physical adaptation alone can address. Sex therapy is the relevant specialty; many therapists have specific experience with chronic illness.
• Relationship strain that has not improved with open communication. Couples counselling is a legitimate resource and does not require a clinical “diagnosis” to be useful.
• Specific physical impairments following surgery — for example, scarring that limits movement or sensation, or surgical changes that affect anatomical function. Plastic surgical or specialist physiotherapy review may help.

In Germany, sex therapy is offered through both private practitioners and, in some cases, through statutory health insurance (GKV) when integrated with psychotherapy for an appropriate clinical indication. Pelvic floor physiotherapy is widely available with a prescription. Couples counselling is largely a private-pay service in the German healthcare system, though some workplace programs or church-affiliated services offer reduced-cost options.

What partners of HS patients find helpful (from the limited research)

Studies of partners’ perspectives on chronic skin disease, including the small literature specific to HS, identify a few consistent themes:

• Most partners report less concern about the appearance of the disease than the patient assumes.
• Most partners want to be helpful and feel inadequate without specific guidance.
• Most partners struggle with the emotional toll on the patient more than with the physical features of the disease itself.
• Partners value being included in clinical conversations where appropriate and where the patient consents.

This does not mean every partner is supportive; HS, like any chronic illness, can be a stress point in fragile relationships and can occasionally reveal partners whose support is conditional. But the default assumption that “they would leave if they really knew” is, in the available evidence, more often a projection of the patient’s own fear than an accurate prediction.

A note on dating with HS

Dating with active HS is genuinely difficult and the difficulty is rarely well-acknowledged. Some practical points:

• Online dating profiles do not need to disclose HS. No medical condition needs to be disclosed in the first contact stage.
• Early conversations about chronic illness in general can be useful in identifying partners who can handle complexity, without specific disclosure.
• Disclosure timing is your decision. The “right” time is the time that fits your sense of safety, the relationship trajectory, and your assessment of the specific person.
• Disclosure is not confession. HS is a medical condition, not a moral failing. Framing the disclosure as factual information (“there’s a chronic skin condition I have that I want you to know about”) rather than apology or confession sets a different relational tone.
• Rejection happens. Some people will not be willing to date someone with a chronic visible skin condition. This is a filter rather than a personal verdict. Partners who would leave at disclosure are often partners who would not have managed the relationship over time anyway.

Frequently asked questions

Will my partner find me less attractive?

The empirical answer is: usually less than you expect. Partners’ reports about attraction to spouses with chronic skin disease are generally far more accepting than patients anticipate. This does not eliminate the question, but it suggests that the anticipated catastrophe is not the most likely outcome.

Can sexual contact spread HS?

No. HS is not an infectious disease and is not transmitted by sexual contact. It is a chronic inflammatory disease with strong genetic and immunological components. A partner cannot catch HS from sexual contact with someone who has it.

Is it safe to have sex with active draining lesions?

For the person with HS, direct pressure or friction on active draining lesions is often uncomfortable and can worsen the lesion, so avoidance of the specific affected area is reasonable. For the partner, exposure to the drainage is not specifically dangerous — HS drainage is not infectious — but is reasonable to manage with a dressing or by avoiding the immediate area for comfort and aesthetic reasons. Use of barrier protection (condoms) is sensible for vaginal or anal contact, both for general health reasons and to reduce introduction of skin bacteria into mucosal areas.

Does sex affect HS activity?

There is no evidence that sexual activity worsens HS as a disease. Local mechanical trauma to an inflamed area can aggravate that specific lesion in the short term, but sex does not drive disease activity in any meaningful broader sense.

What about pregnancy with HS?

Pregnancy and HS interact in complex ways — some women experience improvement during pregnancy and worsening postpartum; some experience the opposite. Biologic therapy decisions in pregnancy are individualized. This deserves a dedicated article and a dedicated clinical discussion with both dermatology and obstetric input.

Can HS surgery improve sexual function?

For patients whose sexual dysfunction is primarily driven by pain from active lesions or by significant scarring affecting function, surgical management of the underlying disease can meaningfully improve sexual function. For patients whose dysfunction is primarily psychological — body image, anxiety, depression — surgery alone is unlikely to resolve the issue and is not the primary intervention.