Have I Been Properly Diagnosed? A Conversation Guide for You and Your Doctor

Hidradenitis suppurativa (HS) is a long-term, painful inflammatory skin condition that can impact all aspects of your life. Although the symptoms of HS appear on the skin in the form of sores or lesions, the condition is not just skin-deep. The irritation from the disease happens deep inside the body and can cause other problems within the body.

While HS causes obvious skin sores on the body, getting a diagnosis is not easy. Some studies have shown that it takes an average of 7 years to diagnose HS, with multiple misdiagnoses along the way.1

This can have a destructive impact on your quality of life. Not only could it possibly take years for a proper diagnosis, you could potentially see numerous doctors and have multiple therapies before a correct diagnosis. You may have felt ashamed or embarrassed of your symptoms, avoiding doctors or therapies for years.2

Being your own advocate

The combination of these factors lead to the fact that HS can be difficult and complicated to diagnose. Being your own advocate and having a doctor you trust and can talk to are key to helping you on your path to the correct diagnosis.

If you are unsure if you have been properly diagnosed, we hope you can use this as a guide to help you talk to your doctor about getting the diagnosis you need to improve your quality of life.

Document your symptoms over time

It may be difficult to remember all your symptoms over time, especially if your symptoms are mild. You might find it easier to keep track of your symptoms by writing them down or documenting them with a digital app on a mobile device. When your doctor asks you about when a specific symptom starts, you will have a better idea and can recall the date by pulling the information you wrote down or documented.

Discuss your different therapies and health history

If you are seeing a new doctor for another opinion or have seen other doctors previously for your symptoms, make sure to tell your new doctor about any medicines or therapies you have previously tried. This will give your new doctor an idea of what worked and what did not work. This will also help to decrease the risk of having treatments or procedures you do not need.

Ask to see a specialist

Your general doctor will likely be the first doctor you see when you have symptoms of HS. While very knowledgeable, this doctor is likely not well-versed in all skin conditions and may or may not be able to recognize HS. If you feel your symptoms are similar to those of HS, ask to see a specialist. This is usually a dermatologist, a doctor specializing in disorders and diseases of the skin.

Early recognition and diagnosis of HS is important to prevent unnecessary pain and suffering, increased costs, and overall burden of the disease. Delays in diagnosis can lead to problems with your employment if you miss or have to take time off of work.

Finding a doctor who you can talk to and who listens to you is an important step to proper diagnosis. While this may take time, the hope is that the time is short and you are able to manage your HS symptoms quickly and improve your quality of life.

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Written by: Katie Murphy | Last reviewed: December 2020