I. Introduction

Whether it is your first doctor’s visit for HS or your tenth, it can be challenging to cover all the topics and questions you hope to discuss. With a condition as complicated as HS, it is important to use your time with your healthcare provider as efficiently and effectively as possible to explain your concerns and receive the advice that fits you best. This chapter shares strategies and resources you can use to get the most out of your visits with your healthcare provider.

II. Telling Your Story

To make the most of your clinic visit, it is helpful to be familiar with the sorts of questions your healthcare provider might ask, and the way your healthcare provider may be thinking about your HS and evaluating your response to treatment.

• How active has your HS been over the last few months (or since the last visit)?

People with HS and their healthcare providers understand that the condition has its better days and its worse days. In other words, your HS might be acting up at the time of a visit, or it might happen to be doing better that day. Healthcare providers understand this. They care about how things are doing the day you see them, but they are most interested in what the overall trend has been.

When your healthcare provider can understand how your HS is trending – if things are going overall better or overall worse (and how much better or worse) – they can more effectively determine if a change in treatment is needed.

• What are your symptoms, and how is HS affecting you?

Symptoms like pain, itch, swelling and drainage help convey how “active” your HS is. Describing how severe the symptoms are also provides a sense of how much the condition is affecting you. Be sure to mention all your physical symptoms associated with HS, if present.

It is also helpful to know how HS may be impacting your work, your personal life, or your mental health. If you are having trouble sitting or performing certain tasks, or if you find yourself skipping important work or life events because of your HS, your healthcare provider should know about that. HS can impact many aspects of your life, including friendships and intimate relationships. It can also contribute to feelings of depression and anxiety. Sharing the way HS burdens your life will help your healthcare provider understand your condition better.

• What are you doing to treat your HS?

To prepare for your first visit with your healthcare provider, make a list of the medications and other treatments you have used in the past, including topical, oral, and injectable medicines, and any surgical procedures. Try to be specific about the name and dose of each medication, as well as the length of time you were using it. Other helpful information includes how consistently you took the medications, whether there were any side effects, and whether you found them helpful. Your healthcare provider will use this information to help create your treatment plan going forward.

For follow-up visits, be prepared to describe how your HS has changed since the last visit, if at all.

Keep track of how your symptoms change over time, and if you have noticed any potential triggers or anything that seems to alleviate your symptoms.

If you began a new medication since your last appointment, tell your healthcare provider if it helped, and about how long you were taking the medication before you saw an improvement. If you have developed any new symptoms, share these with your healthcare provider as well, in case they would like to consider alternative or additional treatments for your HS.

You should also include information about any complementary and alternative therapies you may have tried, such as special diets, vitamins or supplements, or cannabidiol (CBD), and whether or not you found them helpful. Providers are generally supportive of patients using complementary and alternative therapies to supplement traditional HS treatments, so you should feel comfortable sharing this information. It is important for your healthcare provider to know about these alternative therapies to determine whether they are safe or effective, or if they might potentially interact with your other medications.

III. The Physical Exam

Your healthcare provider will need to see and evaluate your HS lesions in order to help determine your most appropriate treatment options. This is a very important part of your visit. Think of the physical exam as your chance to show your healthcare provider what you are dealing with. Whether your HS is mild, moderate, or severe, there are treatment options for you. Your healthcare provider will use the information you provide, along with the physical exam, to help you choose the right treatments.

Be prepared to show your healthcare provider the areas where you have HS. Your healthcare provider may also ask to examine other areas of your body, even if they are not problem areas for you. These areas include places where HS tends to occur, such as the underarms, groin, buttocks, and under the breasts to look for early signs of disease, as well as places where skin conditions associated with HS appear, such as your face or back for acne. Please see Chapter 6 for more information on skin diseases associated with HS.

The areas often affected by HS can be sensitive or private. While it is normal to feel a bit embarrassed, remember that your healthcare provider is a professional who has seen this before, and is on your side. This condition is not your fault, and there is no reason to feel ashamed.

Wear clothing that will be comfortable during your visit, and easy to take off and put back on. Plan to change into a patient gown to help make it easier to examine your skin. You can ask for an extra gown or sheet to help you cover up. It is also okay to ask to have a chaperone (usually a clinic staff member) or loved one in the room with you during the exam.

IV. Communication and Expectations

Healthcare is a partnership between patient and healthcare provider.

We must communicate with one another effectively to be successful. Clinic visits can be stressful. It can be hard to remember everything you want to discuss, and harder still to take in everything the healthcare provider says. It may be helpful to make a list of questions to bring with you to the visit (please see the Q&A section at end of this chapter for some ideas). It may also help to ask a loved one to accompany you or listen in by phone. Ask your healthcare provider for a printed summary of instructions to take home with you.

Be prepared to commit to a plan and course of treatment for at least three months.

HS is a chronic condition that needs long-term treatment. The goal is to find something that works well and that you can continue over time to prevent new lesions. You may have to try a few different therapies to find the treatment(s) that work best for you. Usually, a healthcare provider will want you to stay on a treatment regimen for at least three months before determining if things are on the right track and making any adjustments. Stopping early or switching before the three month period ends can be counterproductive. This is because if you stop before a medication has had an adequate chance to take effect, you may never know if it would have worked. Please see Chapter 12 for further discussion regarding HS treatment goals.

That said, you are never locked into a treatment if it simply is not right for you. If you think you might be experiencing a side effect of a medication, or if you do not see much improvement in your condition by the 3-month mark, let your healthcare provider know so adjustments can be made. If you think you may want to stop a treatment, please let your healthcare provider know right away so you can discuss it.

We hope these recommendations help you plan and make the most of your time with your healthcare provider. HS is a challenging disease and successful treatment can take time, but there is hope for better days ahead when we work together.