Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition that causes boil-like lesions to form around the armpits, groin, buttocks, breasts, and upper thighs. These painful wounds sometimes fill with a foul-smelling liquid that can leak without warning.
Due to the sensitive nature of the condition, it can be embarrassing to discuss HS with others. As a result, many people with HS go undiagnosed and fail to receive the treatment that could provide them relief.
If you’ve been diagnosed with HS, you may have questions about the condition you’re afraid ask. But talking openly with your doctor about your HS is the first step towards properly managing its symptoms.
The following guide will help you to prepare for your first HS appointment with your doctor and get the conversation going.
Before your appointment
There are a number of things you can do before your appointment to make sure you get the most out of your visit.
Using a notebook or the note-taking app on your phone, write down all of your symptoms. Include where they appear on your body, when you first noticed them, and any notable circumstances that were happening when they first appeared.
Even though it might feel awkward, don’t be afraid to take photos of your lesions so that your doctor knows what it looks like when you’re experiencing a breakout.
It’s also a good idea to make a list of all the medications you’re currently taking, including any over-the-counter (OTC) treatments, vitamins, and herbal supplements. If you’ve tried using HS treatments in the past, make a note of those, too.
In many cases, HS is a genetic condition, so bring a record of your family medical history, if possible. Also let your doctor know if you smoke, since smoking is a common risk factor for HS.
Finally, plan to wear loose-fitting clothing to your appointment so that it’s easier to show your doctor your symptoms.
What to ask
Before heading to your appointment, think about what questions you’d like to ask. Your doctor’s office is a judgement-free zone, so don’t be afraid to get detailed about your symptoms. Every case is different, and the more specific you can be about your experience with HS, the easier it will be for your doctor to treat you.
Here are a few questions you can use to get the conversation started:
How severe is my HS?
Your doctor needs to know how severe your HS is to help them decide what treatment options might be best for you. This is where your notes on your symptoms and the circumstances surrounding your breakouts will be most useful.
What can I do to manage my symptoms?
Ask your doctor about the measures you can take to manage your symptoms at home and reduce any discomfort you’re feeling. If you’re already using some form of HS treatment, check in with your doctor about whether or not it’s working effectively.
Should I restrict certain physical activities?
HS breakouts typically affect areas of the body where skin touches skin. Certain physical activities may make you more prone to breakouts if they generate a lot of friction in these spots.
If you participate in any high-intensity sports, ask your doctor if they might be exacerbating your symptoms.
What are the long-term treatment options?
For more severe cases of HS, your doctor may recommend long-term treatment like injections or surgery.
Ask your doctor to explain the various long-term treatment options currently available, and discuss whether any of them might be right for you.
What are the possible side effects of HS treatment?
Some HS treatments do carry the risk of possible side effects. After your doctor gives you a rundown on the available treatment options, make sure to go over any potential side effects so you can be prepared with ways to manage them.
Are there any specific medical supplies I should buy?
Ask your doctor if they can recommend any specific medical supplies to help manage your symptoms, like ice packs or absorbent pads. Also, find out where the best place might be to purchase them. It’s also worth asking about whether your medical insurance covers any of these items.
How should I explain my HS to a partner?
Since breakouts are common around the genitals, it can be uncomfortable to talk about HS with a new partner. Ask your doctor for advice on the best way to explain HS to someone who may not be familiar with the condition.
The examples above are a useful starting point for discussing HS with your doctor. Don’t feel constricted to only these questions if there are other things you’d like to address as well.
The key is to go into your appointment without the fear of being judged or shamed. It’s your health. Having a deeper understanding of your condition will help make you better equipped to manage it.