What is Hidradenitis Supparativa?
Have you ever tried to explain something to someone, and they have no idea what you are talking about? You might as well be speaking a foreign language. That is how it feels to live with Hidradenitis Suppurativa, or HS, when its shortened.
You might ask, what is HS? Hidradenitis Suppurativa is a chronic inflammatory skin disease which causes boil like lumps, blackheads, cysts scarring and channels within the skin which leak pus under the skin in areas of the body which rub together. This includes between the thighs, under armpits, buttocks, under breasts. Sometimes you can get them around intimate areas, ears and even eyelids. Some lumps can become infected with bacteria which can cause a secondary infection which requires antibiotics to treat the infection. Those who have HS also develop a pilonidal sinus which is a tunnel or small hole within the skin. There are no known causes of Hidradenitis Suppurativa, however it is known that the lumps develop due to blockage of hair follicles.
When Does HS Occur?
Hidradenitis Suppurative can occur at any age, but it can normally begin around puberty. It is seen as less common before puberty and after menopause which shows that hormones contribute to it. Those who live with HS may also suffer from acne and excessive hair growth which is also known as (hirsutism). Getting diagnosed with HS will involve a doctor or dermatologist examining the affected areas and they might take a swab of the infected area. This can help support making an official diagnosis as the condition isn’t usually linked with the occurrence of bacteria which cause skin infections.
How Is HS Treated?
There are different ways of treating hidradenitis suppurativa, it depends on the individual. During the early stages it can be controlled with medicine, so you may be given antibiotics or steroids which can be taken as tablets or cream form. For more severe of persistent cases surgery might be required. Antiseptics washes such as 4% chlorhexidine can be used to wash the affected area daily, this is usually prescribed with other treatments. Hidradenitis Suppurative can persist for many years, if it has been diagnosed early on the symptoms can be improved with treatment.
My Experience With Hidradenitis Supparativa
I personally had never heard of hidradenitis suppurativa until I was diagnosed with it and even then, I didn’t really understand. It’s hard to pronounce hidradenitis suppurative but it’s harder to live with than anything. While I was working away in America, I had this weird looking spot/ pimple on my inner thigh so went to the camp nurse and she recommended I went to urgent care. After being examined by a nurse they told me it was hidradenitis suppurativa, prescribed me with antibiotics and an information sheet about it. I followed the advice given to me and soon after it disappeared until I got home in September, it came back and I thought “Huh,” and put a warm/hot compress on it to try get it to come to a head. This occurred on and off every few months, until around March 2020 it got really bad, so I phoned my doctor. She prescribed with me with antibiotics for three months without seeing me but that was due to the pandemic.
Next Steps
I made the decision to join a couple of Facebook support groups, which was the best thing I could have done! Everyone is so supportive and give each other advice and tips on living with HS or if you just want to vent about a rubbish day! There have been times where I’ve been in so much pain and put a post on asking for advice and been given amazing tips! Including using warm/hot compress, using Vicks Vapor rub to help bring the lump/boil to a head. Using sterile wound dressings to cover the area completely. I recently was recommended to try medicated talcum powder as it soaks in the sweat and to wear men’s boxers. This might sound odd, but they are longer and wont rub as much as women’s underwear. Tea tree oil is another alternative for bringing a lump/boil to a head.
Poly Cystic Ovary Syndrome
Last year in July, I was diagnosed with Poly Cystic Ovary Syndrome PCOS. Which is a condition that affects the way woman’s ovary function. There are three main features of PCOS which include irregular periods, excess androgen which means you have a high level of male hormones in your body. Which leaves me with excess facial and body hair which would be seen as abnormal for a young woman of 22. Ovaries can become enlarged and contain many fluid-like sacs which surround the eggs. Despite the name, you don’t have cysts if you have PCOS. I recently found out that having PCOS and HS are both interlinked with each other, which makes a lot of sense. Having PCOS can also be the cause of infertility but there is lots of support and services to help women through tough times.
Staying Active
I have recently joined the gym and my goals are to lose weight and become a stronger young woman. I also hope that losing weight will reduce the amount of HS flare ups I experience and symptoms of PCOS will also reduce. I know that losing weight will most likely not stop my flare ups but will most certainly help decrease them. However, with PCOS it is said that losing weight will help your symptoms of PCOS, but I have heard that this isn’t the case, I guess it just depends on each individual.
Bringing Awareness to HS
HS is not spoken about nearly enough and we need to raise awareness as so many people suffer in silence feeling embarrassed or ashamed. Living with HS makes you stronger and allows you to push through pain that can be unbearable at times! When I have a flare up, being honest I struggle to walk but I push through it. When I apply a dressing over my flare up and put vicks vapour rub on a flare up before it bursts. It allows me to walk with no pain as it stops my legs from rubbing which would cause more friction and then more flare ups. Since I started using the medicated talcum powder, I have reduced the amount I am sweating which will reduce flare ups occurring. Hidradenitis suppurativa has limited research and is very misunderstood which can be frustrating when speaking to medical professionals as they have a limited understanding of this condition. Which is why we need to speak about HS and raise awareness, so more people have an understanding and those people with HS don’t feel embarrassed or ashamed to speak about it.
Myths and Misunderstandings About Hidradenitis Supparativa
HS is NOT contagious
HS is NOT acne
HS is NOT caused by poor hygiene
HS is NOT an STD
HS is NOT caused by smoking and struggling with weight
For more information regarding hidradenitis suppurativa and PCOS check these websites out:
https://www.nhs.uk/conditions/hidradenitis-suppurativa/
https://www.hsconnect.org/2021-awareness-week
https://www.hsconnect.org/post/hs-stigmas-separating-fact-from-fiction
https://www.hsconnect.org/post/abscesses-boils-lesions-oh-my
https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/
