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hidradenitis suppurativa: what it feels like
"i just cried in their office for an hour because it was the first time in my life that they knew what it was."
jul 7 2022
7 minute read
krystle sutherland co-founded hs heroes to raise awareness of hidradenitis suppurativa.
as a young teenager, krystle sutherland was embarrassed to talk about the painful cysts developing in her groin area. and doctors wrongly claiming it was because of bad hygiene didn’t help, especially as the developing tracts and scar tissue began to impact sutherland’s mobility.
hidradenitis suppurativa (hs) is a painful condition where abscesses form in areas of the body that have a higher concentration of sweat glands and where skin tends to rub together, such as the armpits, bottom, groin and breasts according to the nhs . the boils that form can also burst and become infected . this progressive condition occurs more commonly in women and is not contagious.
as many as four per cent of canadians are thought to have some form of hs, however, because the condition is often misdiagnosed it is difficult to get a clear picture of how many people are affected.
when sutherland, 40, sat down to talk with healthing, she had just wrapped up hs awareness week as co-founder of hs heroes . she opened up about her experiences with an often misunderstood, but fairly common, condition, being told it was her fault, and how there are so many more options for canadians thought to have hs — if only they knew what it was.
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this interview has been edited for length and clarity.
what led to your hs diagnosis?
i got hs in 1996, but you couldn’t get on the internet and google it — there was nothing. it was only really in my groin and then it started progressing into my buttocks and under my breasts. when it started on my breasts, i googled lesions, breast, groin and buttocks and that’s when hidradenitis suppurativa finally came up. i asked my doctor about it [but] at that point there still wasn’t very much information out there. i was sent to a gyno (gynecologist) and then to a couple of different derms (dermatologists), and then finally, my gp [found] a specialist in edmonton. i was one of four or five patients with hs at the time, but now he has over a thousand patients just with hs alone.
it seems wrong that there are so many patients with this condition but it’s not something we talk about.
it’s because of the areas it can affect. there are open lesions that are [painful], and sometimes they leak a foul odour and pus. some people, i think, are too embarrassed to come out, especially [because it] usually comes on in puberty. i didn’t even tell my mom i got my period — i didn’t want to tell her i had lesions and boils. plus, if you google the symptoms, often they are related to an sti, and that’s embarrassing.
awareness has grown over the last few years, and now folks are like ‘o h, this is what i have , and i’m not alone. i didn’t cause this, this isn’t my fault.’ the minute you get your diagnosis and find that you’re not the only person that has this disease … it just really changes your whole perspective.
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having open lesions sounds awful.
nodules, cysts, boils, lesions are the terms that are most commonly used. and when it progresses, they make tunnels under the skin. when mine were at its worst, i could press on one area of my skin and stuff would come out of different areas because it had just spread under the skin.
is it painful?
yes. imagine having a ping-pong ball in your groin, under the skin. there’s not a lot of skin there. it’s literally all-consuming — it’s all you can think about. i have thought about taking a kitchen knife and trying to open it just to relieve the pressure — it’s that much pressure. when they are opened them up, it’s instant relief because the pressure just goes away.
when my disease first began, i would get hard nodules that would either open on their own or i’d have to get an incision and have them drained. as the disease progressed and i had the tracts, they would just never heal — they would always be open.
you mentioned that as a teenager, hs is embarrassing and hard to talk about. what led to you getting treatment?
well, for years, i just had the incisions and drains. the doctors would tell me, ‘y ou’re prone to [developing] cysts and boils,’ and that was it. but when it started to progress and spread on different areas of my body … by then i was in my 30s; i have had it since i was 14. i’m 40 now and i only got diagnosed maybe eight or nine years ago.
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the scarring can stop mobility. i had a cleaning business, and i was having a hard time bending down because of the scarring in my groin and under my breasts, so it affected my work.
also, when you’re intimate with someone and you have sores everywhere, it’s hard to explain what it is — especially when i didn’t know what it was. i used to tell people, ‘ oh, i got [a burn] from waxing.’
i waited a year to see a gynecologist. i got really lucky that day because it was a med student that i saw and she said, ‘i think you have this thing called hs and it’s a really progressive disease. y ou’re going to have to fight this and hit it hard and get it under control.’ but then i saw a dermatologist who said had bad hygiene [and that i should take a bleach bath].
hang on. so you have a medical condition you’re getting help for and a doctor says that it’s because you have bad hygiene?
it hurt my self-esteem, but i at least knew that this doctor didn’t really know what they were talking about. they gave me some information on hs that they had photocopied, and i thought, nobody’s photo copying out of books anymore — there’s no way this is the latest information on it. so i asked her to give me a referral to a dermatologist who at least knew what hs was.
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we started doing kenalog treatments*, but it wasn’t until the dermatologist i’m with now came along, who does the routine surgical procedures and was able to prescribe the medication that i’m on now.
*editor’s note: kenalog is a steroid used to treat many types of conditions, including joint pain, blood disorders, hormone problems, asthma and rheumatic fever
once i finally found a doctor who knew [how to treat it], i just cried in the office for an hour because it was the first time in my life that someone knew what hs was. i did three years of back to back surgeries to get all the tracts removed and then started a biologic medication. that was a game-changer because the surgery removed all of the scar tissue and the medication has helped new ones from developing. and i haven’t had to have a surgery in over three years.
i also changed some of my lifestyle. so i stopped eating dairy and a lot high sugary foods, because this is an inflammatory disease. that really helped me as well.
is hs a chronic disease?
it is. it’s chronic and it’s progressive.
with the medication i still get tiny, little outbreaks and then i need a kenalog injection — a steroid injection. and if i did have a big outbreak, i know that they would be able to surgically remove it right away before it spread. but i’ve been really lucky, i haven’t had one since, i think, the stress of my wedding caused an outbreak in 2019.
how common is hs?
i started a patient support group called hs heroes with my partner, but one of the challenges is that there’s not a lot of gps who really know and understand hs. it would be really beneficial if they did because that could mean an earlier diagnosis, and [a patient] could least start treatment of antibiotics while they wait to see a dermatologist.
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i always tell patients that it took me years to find someone who knew about hs. yes, it may take you a year or few months to get into see a dermatologist, but now, there’s like eight or nine different biologics and biologics indicated for hs, and there’s more on the horizon. there’s so much research and every year there’s more and more information available for patients.
hs is never a good thing, but there’s never been a better time to have it because there is so much information and so much help available for patients.
readers interested in learning more can check out hs heroes and the canadian hs foundation.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn .
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