I was diagnosed withhidradenitis suppurativawhen I was 15.
This chronic condition causes extremely painful lesions that commonly appear on the bust and around the groin1.
You might even avoid romantic relationships because youre embarrassed aboutyour flares, which can sometimes have an odor.
Talking about hidradenitis suppurativa and sex can feel really intimidating.
But trust me, youre not alone.
There are other people with hidradenitis suppurativa, and many of them enjoy active, healthy sex lives.
Heres what they said.
Talk about hidradenitis suppurativa well before having sex whenever possible.
I had a very painful sexual experience with someone who didnt understand my condition.
I tried explaining my condition, but he left, and my confidence was shattered.
It took several years before I felt comfortable trying to have sex again.
My partner was very understanding and game to have sex when we went back to his place that night.
Danielle DiCamillo2, LCSW at Cohesive Therapy NYC, works with people who have chronic health conditions.
Additionally, the other person has time to process and understand your condition, too.
And sometimes, thats just a few minutes before she actually has sex.
I usually just say, So, I have a skin condition that leaves red marks and some cysts.
They can be painful so yo avoid them, but its not infectious and theres nothing to worry about.
Most people just say okay and get on with things, Sophie says.
Actually let your partner know about your boundaries.
For example, you might not like having partners get too close to scars from old lesions.
That plan could be different for everyone, DiCamillo says.
Hidradenitis suppurativa is a part of that discussion, Alex tells SELF.
Do your best to avoid irritating lesions during or after a flare.
Lesions can also become infected, so its important to be really careful when you have flares3.
Sreedhar Krishna4, MBBS (an international medical degree equivalent to an M.D.
Its important to let your partner know of areas that are tender for you, Dr. Krishna tells SELF.
Explore other forms of pleasure with your partner.
Lets just say it: Sometimes, having sex can feel really awkward.
Alex reiterates that talking about hidradenitis suppurativa early on helps with any potentially awkward situations.
It was pretty messy, but because I had already explained hidradenitis suppurativa, they were really understanding.
We still went home together and had sex and were careful to focus on other areas, Alex says.
Consider talking to a therapist if you might.
They really helped me overcome feelings of shame and open up to new people.
Im now in a happy long-term relationship with a partner who understands, John says.
She started individual therapy and also went to couples counseling with her boyfriend.
And dont think you have to be in a relationship to benefit from this kind of help!
Or, it’s possible for you to find therapists who offer reduced-fee sessions on websites likeOpen PathandThero.org.
You may also find it helpful to join a group likeHope for HSthat offers monthly online meetings.
Talk to your physician about whats bothering you.
