What To Ask Your Doctor After A Diagnosis Of Hidradenitis Suppurativa?

Hidradenitis suppurativa is a chronic skin condition that causes the development of small and painful lesions underneath the skin. These bumps can eventually burst open, leaking foul-smelling liquid or cause tunnels to form underneath the skin. These skin lesions typically occur because of inflammation and/or an infection of the sweat glands. Hidradenitis suppurativa mainly affects parts of the body where the skin rubs against each other, such as the groin, upper thighs, buttocks, breasts, and armpits. Due to the sensitive nature of this disease, many people often feel embarrassed to discuss their doubts or questions with others. As a result, many people with hidradenitis suppurativa often go undiagnosed, failing to receive treatment that can help them manage their symptoms. If you have been diagnosed with hidradenitis suppurativa, you are bound to have many questions about the disease, but you may be embarrassed to ask them. However, asking your doctor openly is the first step to getting proper treatment and getting relief. Read on to find out about what to ask your doctor after a diagnosis of hidradenitis suppurativa.

Overview of Hidradenitis Suppurativa

Hidradenitis suppurativa, also known as acne inversa, is a chronic skin condition that causes painful and fluid-filled lesions to develop on certain parts of the body where the skin rubs together, such as the armpits, breasts, groin, breasts, and upper thighs.(1,2,3,4) These fluid-filled lesions can become infected, in which case pockets can form underneath the skin, and they can become filled with pus. These bumps smell bad once they break open and can also leave scars. The lesions may also look like bumps or boils. This condition tends to develops after a child has reached puberty and is believed to run in families. If anyone in your family has been diagnosed with hidradenitis suppurativa, it increases your risk of developing the condition. The disease is also three times more likely to affect women than men.(5,6,7)

Due to the sensitivity of this condition, many people find it embarrassing to discuss their doubts or questions with others. Due to this, many people with hidradenitis suppurativa end up remaining undiagnosed and do not receive the treatment that could have helped alleviate their symptoms and provide relief.

If you have been diagnosed with hidradenitis suppurativa, it is natural to have many questions about your condition, but you may be afraid or embarrassed to ask.(8) However, remember that talking openly with your doctor about the disease is going to be the first step you take towards properly managing your symptoms.

Here are some tips to help you prepare for your first appointment with your doctor and some helpful questions you can ask your doctor.

Things To Do Before Your Appointment With Doctor For Treating Hidradenitis Suppurativa

It is best to be prepared before your appointment itself to ensure that you can make the most out of your visit. Use a notebook or a note-taking app on your smartphone, write down all of your hidradenitis suppurativa symptoms, their severity, where they appear on the body when they first appeared, and any other noteworthy condition that was happening when the lesions first appeared on your body.(9)

It is understandable that it might feel awkward, but it will help if you take photos of your lesions so that your doctor is able to know exactly what the lesions look like when you have a flare-up or breakout.

It is also recommended that you make a list of all the medicines you are currently taking for hidradenitis suppurativa and also make sure to include any over-the-counter treatments, herbal supplements, and vitamins you may be taking. If you have taken any treatment for hidradenitis suppurativa in the past, write that down as well.

In many cases, it has been found that hidradenitis suppurativa is a hereditary condition. So, if possible, bring along a record of any family member who has the condition. Let your doctor know if you smoke because smoking is a known risk factor for hidradenitis suppurativa.(10,11)

Plan to wear loose-fitting clothes when you go for your appointment to make it easier to show the lesions and other symptoms to your doctor.

Questions to Ask Your Doctor After a Diagnosis of Hidradenitis Suppurativa

Before going to the appointment, make a list of all the questions you would like to ask. Remember that a doctor’s office is a judgment-free zone. You can ask any type of inquiries you want and also provide a detailed description of all your symptoms of hidradenitis suppurativa. As every case of hidradenitis suppurativa is different, and every person experiences different symptoms of hidradenitis suppurativa, the more specific you are about your individual symptoms and experience, the easier it will become for your doctor to come up with the most suitable treatment plan for you.

Here are a couple of questions you should definitely ask your doctor.

Q1. What Is The Severity Of My Hidradenitis Suppurativa, And Will It Affect My Treatment Options?

Your doctor will first of all need to understand how severe your condition and symptoms are in order to help them decide what treatment options will be best for you. This is where the notes you have taken and the circumstances/triggers surrounding your flare-ups will come in handy.

Hidradenitis suppurativa is typically categorized as mild, moderate, and severe. While there is no cure for hidradenitis suppurativa, each stage of the disease does have a wide range of recommended treatment options.

In the mild form of hidradenitis suppurativa, you are likely to have only one nodule or abscess that tends to come and go. Meanwhile, in the severe form of the disease, you are likely to have numerous interconnected passages or tracts of the lesions that lead to drainage of foul-smelling fluids.

For a mild form of the disease, topical treatments are usually prescribed, which can be accompanied by occasional steroid injections in the areas where disease activity is most. However, as you pass from mild to moderate and then severe stage of the disease, you will to take oral and, in severe cases, even intravenous antibiotics, along with topical treatments for the inflamed and active spots.(12,13)

In severe cases of hidradenitis suppurativa that is marked by large areas of damaged or inflamed skin, it is common for doctors to prescribe biologic therapies. These are drugs that block a certain pathway in the immune system that can cause inflammation. Biologic drugs are administered either through injection or infusion. As of now, the US Food and Drug Administration has only approved one biologic drug, adalimumab, for the treatment of hidradenitis suppurativa. However, doctors may also consider prescribing other drugs belonging to this family.(14,15)

Other treatments may also include skin washes similar to those used for acne. These skin washes typically contain benzoyl peroxide. Topical antibacterial washes can also be used.(16) Your doctor may also discuss the option of a bleach bath and will direct you on how to do this procedure safely at home to decrease the growth of bacteria on the skin.(17)

Q2. How Can I Manage My Symptoms Of Hidradenitis Suppurativa?

You should ask your doctor about the various measures you can take to manage and alleviate your symptoms at home to reduce the discomfort caused by the disease. If you are already using some type of treatment for hidradenitis suppurativa, you should double-check with your doctor about whether the treatment is working effectively or not.

Q3. What Are The Goals Of My Treatment For Hidradenitis Suppurativa?

The primary goal of treatment for hidradenitis suppurativa is to reduce inflammation, redness, and pain. However, this is unlikely to help people who are at a stage of the disease where they already have tunnels under their skin that are persistently draining and leaking, and getting blocked. In such cases, addressing this drainage is the main concern.(18)

Apart from addressing the overall fluid drainage and pain in hidradenitis suppurativa, your doctor will also take a closer look to see how the disease is affecting other aspects of your life, such as interruption in your work, sleep, etc. If hidradenitis suppurativa is impacting a specific area of your life, your doctor will discuss treatment options to address that problem. This may include finding better ways to sleep or an overall change or modification in your current treatment plan.

Since hidradenitis suppurativa is a progressive disease and will eventually progress from mild to moderate to severe, the goal of the treatment when a patient comes with a mild form of the disease is to provide treatment that will ensure that the condition does not progress to a severe stage or to a stage where they may need surgery.(19)

Q4. After a Diagnosis of Hidradenitis Suppurativa Can I Continue With My Regular Physical Activities, Or Do I Need To Follow Some Restrictions?

Flare-ups of hidradenitis suppurativa tend to affects parts of the body where the skin rubs together. There are some physical activities that make you more susceptible to breakouts because they generate a lot of friction in these parts of the body.

If you participate in any kind of high-intensity sports, it is a good idea to ask your doctor if that activity is aggravating your condition and causing the flare-ups.

Q5. How Will I Know If My Treatment Plan for Hidradenitis Suppurativa Needs To Be Adjusted?

Your doctor will discuss making changes to your treatment plan whenever you start experiencing excessive or prolonged flare-ups or new, bothersome symptoms. If it seems like you are still having a lot of drainage or pain, then your doctor will talk about switching to other treatment options or change the dosage of your present treatment.

It is important to know that the biggest factor under consideration while changing your treatment for hidradenitis suppurativa is what treatment or medications you have been on in the past, whether the disease responded to the previous treatment, and how severe your disease currently is.

In cases of mild hidradenitis suppurativa, you may want to bring up a change in your treatment with your doctor if you start to experience recurring symptoms that are causing discomfort. In cases of moderate to severe disease, you may require a change in treatment if you continue to experience large areas of inflamed and painful skin or if the damage to the skin causes continuous drainage of foul-smelling fluid from the site.(20)

Q6. What Are My Options For Long-Term Treatment of Hidradenitis Suppurativa?

In more severe cases of hidradenitis suppurativa, doctors are more likely to recommend long-term treatments like surgery. You should ask your doctor to explain all the long-term treatment options that are currently available. Also, discuss all the pros and cons with your doctor to determine which of these treatments could be better suited for you.

Surgery might sound like a dramatic or scary option for treating hidradenitis suppurativa, but for this condition, the term surgery actually refers to a large number of procedures that take place. This includes draining a single inflamed lesion to removing large areas of the damaged skin.(21)

In mild cases of the disease, surgery involves carrying out an excision of a hidradenitis suppurativa nodule that keeps reoccurring. Even though this might not help stop the development of newer nodules or more areas of inflammation from developing, but it can prevent the skin of that area from getting further damaged.

Usually, though, surgery for hidradenitis suppurativa is performed to address the damage to the skin that has already occurred. This means that the structure of the skin in that particular area has already changed because of scarring and inflammation. This disfigured or damaged skin usually has tunnels underneath that refuse to go away with any type of medical treatment and continue to fill up and drain continuously.

Surgery is an option that allows your doctor to cut these large hidradenitis suppurativa lesions/nodules from the skin, but this may also leave deep wounds on the skin that may need to be covered up with a skin graft.(22)

Q7. Are There Any Possible Side Effects Of These Treatments for Hidradenitis Suppurativa?

Some treatments for hidradenitis suppurativa do carry the risk of side effects. Once you have understood all the available treatment options from your doctor, you should also enquire about any potential side effects of these treatments so that you are prepared to manage them if they should occur.

In severe cases, your doctor may recommend more aggressive treatment options that may be more effective for your condition, but they are also likely to come with more side effects. So always discuss the potential benefits and risks of the various treatments with your doctor.

Q8. Should I Buy Any Particular Medical Supplies?

You can also ask your doctor if they recommend you to purchase any kind of specific medical supplies that will help you manage your symptoms. This may include absorbent pads or ice packs. You should also find out the best place to buy these from and enquire about whether your medical insurance covers any of these medical supplies.

Q9. Can I Practice Any Alternative Or Home Remedies for Hidradenitis Suppurativa To Reduce My Discomfort?

Asking your doctor about whether there is anything you can do at home to reduce your symptoms can help you manage your condition better. Some of the home remedies you can enquire about include:

  • Ways to frequently clean the wound – can you use non-soap cleansers, or should you get antiseptic cleansers? How often should you change the dressing?
  • Can you apply a hot compress? Some people find relief in their pain by applying heat to the area. Heat also helps draw out the pus from the lesions.
  • Can you continue shaving? Remember that shaving can irritate your skin further, allowing bacteria to enter any broken skin. Ask your doctor for advice on how to remove hair in the safest manner from around the affected area.
  • What can you do to reduce friction in the affected area?

Q10. How Can I Explain My Condition To A Partner?

Breakouts and flare-ups of hidradenitis suppurativa are common around the genitals. Due to this, it can become uncomfortable and embarrassing to talk about hidradenitis suppurativa with a new partner. You don’t need to feel shy or embarrassed to ask your doctor for advice on how to best explain hidradenitis suppurativa to a new partner who might not be familiar with this disease.

Conclusion

The questions mentioned above can serve as a practical guide to start off the discussion on hidradenitis suppurativa with your doctor. However, you don’t need to feel restricted to only ask these questions. If there are other things, you would like to clarify or address, you can ask that as well.

Remember that the important point here is to go into your appointment without feeling scared of being judged or shamed. It is a matter of your health, after all, and having a better understanding of your condition will help you make better and more informed decisions about how to best manage it.

References:

  1. Jemec, G.B., 2012. Hidradenitis suppurativa. New England Journal of Medicine, 366(2), pp.158-164.
  2. Revuz, J., 2009. Hidradenitis suppurativa. Journal of the European Academy of Dermatology and Venereology, 23(9), pp.985-998.
  3. Alikhan, A., Lynch, P.J. and Eisen, D.B., 2009. Hidradenitis suppurativa: a comprehensive review. Journal of the American Academy of Dermatology, 60(4), pp.539-561.
  4. Jemec, G.B., Heidenheim, M. and Nielsen, N.H., 1996. The prevalence of hidradenitis suppurativa and its potential precursor lesions. Journal of the American Academy of Dermatology, 35(2), pp.191-194.
  5. Sabat, R., Jemec, G.B., Matusiak, Ł., Kimball, A.B., Prens, E. and Wolk, K., 2020. Hidradenitis suppurativa. Nature Reviews Disease Primers, 6(1), pp.1-20.
  6. Dufour, D.N., Emtestam, L. and Jemec, G.B., 2014. Hidradenitis suppurativa: a common and burdensome, yet under-recognised, inflammatory skin disease. Postgraduate medical journal, 90(1062), pp.216-221.
  7. Von Der Werth, J.M., Williams, H.C. and Raeburn, J.A., 2000. The clinical genetics of hidradenitis suppurativa revisited. British Journal of Dermatology, 142(5), pp.947-953.
  8. Alavi, A., Farzanfar, D., Lee, R.K. and Almutairi, D., 2018. The contribution of malodour in quality of life of patients with hidradenitis suppurativa. Journal of cutaneous medicine and surgery, 22(2), pp.166-174.
  9. Slade, D.E.M., Powell, B.W. and Mortimer, P.S., 2003. Hidradenitis suppurativa: pathogenesis and management. British journal of plastic surgery, 56(5), pp.451-461.
  10. Fitzsimmons, J.S., Guilbert, P.R. and Fitzsimmons, E.M., 1985. Evidence of genetic factors in hidradenitis suppurativa. British Journal of Dermatology, 113(1), pp.1-8.
  11. Ingram, J.R., 2016. The genetics of hidradenitis suppurativa. Dermatologic clinics, 34(1), pp.23-28.
  12. Clemmensen, O.J., 1983. Topical treatment of hidradenitis suppurativa with clindamycin. International journal of dermatology, 22(5), pp.325-328.
  13. Jemec, G.B. and Wendelboe, P., 1998. Topical clindamycin versus systemic tetracycline in the treatment of hidradenitis suppurativa. Journal of the American Academy of Dermatology, 39(6), pp.971-974.
  14. Włodarek, K., Ponikowska, M., Matusiak, Ł. and Szepietowski, J.C., 2019. Biologics for hidradenitis suppurativa: an update. Immunotherapy, 11(1), pp.45-59.
  15. Lee, R.A. and Eisen, D.B., 2015. Treatment of hidradenitis suppurativa with biologic medications. Journal of the American Academy of Dermatology, 73(5), pp.S82-S88.
  16. Leiphart, P., Ma, H., Naik, H.B. and Kirby, J.S., 2019. The effect of antimicrobial washes on antibacterial resistance in hidradenitis suppurativa lesions. Journal of the American Academy of Dermatology, 80(3), pp.821-822.
  17. James, S.M. and Wilson, B.B., Treatment Options for Hidradenitis Suppurativa.
  18. Ring, H.C., Sigsgaard, V., Thorsen, J., Fuursted, K., Fabricius, S., Saunte, D.M. and Jemec, G.B., 2019. The microbiome of tunnels in hidradenitis suppurativa patients. Journal of the European Academy of Dermatology and Venereology, 33(9), pp.1775-1780.
  19. Banerjee, A.K., 1992. Surgical treatment of hidradenitis suppurativa. British journal of surgery, 79(9), pp.863-866.
  20. Alavi, A., Farzanfar, D., Lee, R.K. and Almutairi, D., 2018. The contribution of malodour in quality of life of patients with hidradenitis suppurativa. Journal of cutaneous medicine and surgery, 22(2), pp.166-174.
  21. Ritz, J.P., Runkel, N., Haier, J. and Buhr, H.J., 1998. Extent of surgery and recurrence rate of hidradenitis suppurativa. International journal of colorectal disease, 13(4), pp.164-168.
  22. Aad.org. 2021. Hidradenitis suppurativa: Diagnosis and treatment. [online] Available at: [Accessed 8 March 2021].

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