HS and PCOS: My Experience Having Both and Why They Might Be Related

PCOS, or polycystic ovarian syndrome, is a common comorbid condition for those that have Hidradenitis Suppurativa. I have both and want to share my experience trying to treat them both for anyone else trying to juggle these two conditions.

What is polycystic ovarian syndrome?

First, let's talk about what PCOS is. Polycystic ovary syndrome is a condition that affects a person who has ovaries in terms of hormone levels, fertility, and menstrual cycle. People with PCOS produce higher-than-normal amounts of male hormones like androgen and testosterone, which can cause symptoms like excessive hair growth (also known as hirsutism) on places like arms and face while also causing baldness.

PCOS can cause weight gain, specifically around the abdomen and lower stomach, and is also a risk factor for diabetes and heart disease. It causes irregular periods (either happening too frequently, happening too infrequently, or happening in an odd pattern) and heavy bleeding during menstrual cycles. It also commonly causes acne, specifically cystic acne, which might be part of its relation to those of us that also suffer from HS!

As per the Mayo Clinic, its causes are unknown but may relate to the following:¹

• Excess insulin production
• Low-grade inflammation. This term is used to describe white blood cells' production of substances to fight infection. Research has shown that people with PCOS have a type of low-grade inflammation that stimulates polycystic ovaries to produce androgens. This low-grade inflammation may also worsen HS symptoms!
• Heredity causes
• Excess androgen produced by the ovaries

It is diagnosed via a pelvic exam, blood tests to check hormone levels, and a series of ultrasounds to check for an abnormal amount of cysts and follicles in the ovaries. Medical history such as any genetic factors and a list of symptoms are also used to help diagnose PCOS.

How does PCOS relate to HS?

According to NIH, the National Center for Biotechnology Information, “The prevalence of PCOS among patients with HS was 9.0%, compared with 2.9% in patients without HS. The likelihood of patients with HS having PCOS was 2.14 times that of patients without HS, and PCOS was associated with HS across all subgroups.” Why could this be?²

Well, for a number of reasons. Firstly, some people (Like myself) definitely have a hormonal component to their HS breakouts. I always break out or flare during my menstrual cycle, as do many people with HS. Also, excess androgen causes an increase in clogged pores and cystic acne all over the body, which in people who already have HS or are predisposed to HS can lead to major flares.

The most common treatment for PCOS is to be put on birth control to help control the hormonal aspect, but hormonal birth control can cause issues for HS as well.

Treating both HS and PCOS

In terms of treating them both, it can be amazingly tricky. I tried 8 types of birth control, all of which affected my HS in negative ways. Luckily, I’ve found that a lot of the dietary restrictions I follow for my HS help my PCOS as well! Eating too much sugar can cause both to flare, so I avoid sugar and sugar replacements like aspartame. Eating too much red meat can be an issue for some people with HS and can cause hormonal flares in people with PCOS, so I adopted a vegan diet to great success.

Gentle exercise can help regulate hormones, so I work out in a way that’s safe for my HS and it helps regulate my periods and PCOS pain as well! Seeing an endocrinologist alongside my dermatologist was a great help in figuring out how to manage my PCOS and HS together As always, it is important to remember that this does not replace the advice your specific medical team gives you. This is just my experience!

I hope sharing my experience and the research I’ve done can help make you feel a little less alone in battling both of these diseases.