How I deal with Hidradenitis Suppurativa

Hello Everyone;

I hope you are all doing well and keeping safe.

I am so sorry for not posting for such a long time. I have only recently gone back to work after taking 3 weeks off for my mental health. Before I went back to work they informed me that I would be doing wake nights instead of day shifts. So I have had to completely change my sleeping pattern. I am having to stay awake from 8 pm until 8 am so I am not sleeping properly during the day which is why I haven't had the motivation to post. To be honest I haven't had the motivation to do anything recently.

In this, I will be explaining how I deal with my Hidradenitis Suppurativa. If you don't know what Hidradenitis Suppurativa is I will give you a brief explanation;

Hidradenitis Suppurativa (HS) is a painful, long-term skin condition that causes abscesses and scarring on the skin.

The exact cause of Hidradenitis Suppurativa is unknown, but it occurs near hair follicles where there are sweat glands, usually around the groin, bottom, breasts and armpits.

For reasons that are unknown, more women than men have the condition. It's thought to affect about 1 in 100 people.

There are some myths around Hidradenitis Suppurativa, I have listed some below and put in the truths to them:

MYTH: Hidradenitis Suppurativa is a rare disease.

FACT: HS was once thought to be a rare disease, but now we know that it is quite common.

MYTH: HS is contagious.

FACT: HS is NOT contagious, and it is NOT related to poor hygiene. HS is an inflammatory skin condition that is characterized by painful bumps and abscesses typically in the armpits, groin and buttocks that recur. Bumps and abscesses can become tunnels under the skin that drain fluid. Because of its appearance and location, HS may be misdiagnosed as acne, folliculitis (inflammation of the hair root), a skin infection, or a sexually transmitted disease. Unlike these conditions, HS is a chronic condition that does not yet have a cure.

MYTH: HS is a disease that is caused by being overweight and smoking tobacco.

FACT: While we are not exactly sure what causes HS, we do know that people of all shapes and sizes can develop HS. Tobacco use has been associated with HS, but a direct link between smoking or chewing tobacco and HS has NOT been found yet.

MYTH: There are no good treatments for HS.

FACT: Although no single medication works for every HS patient, several medical and surgical treatments are available for HS. And researchers are working every day to develop new therapies. The most important step is to find a doctor knowledgeable about HS to help you better understand all the treatment options that might be right for you. You need to be on the right treatment to be able to get the best possible results. Everyone's body is different.

MYTH: No one can understand what I am going through and no one can help me.

FACT: People suffering from HS may feel embarrassed to talk about their condition and may keep it hidden from their family and friends, and even their doctors. They may not know what is happening to their bodies and they may not know that it is called HS. They may think that the painful nodules and abscesses they are getting are their own fault.

How I deal with my Hidradenitis Suppurativa, I am currently on a medication called Humira, this is an injection that I have to do weekly in the thigh area. I do have to swap legs every week to ensure that the injection site doesn't get irritated or infected. This sometimes helps the already-formed HS sites but not always. HUMIRA is a TNF blocker medicine that can lower the ability of your immune system to fight infections. This means if I develop any form of the cold or flu I cannot inject the medication until it is out of my system. This is because it can cause my immune system to not be able to fight off infections etc.

I have also been on multiple Antibiotics throughout my journey with HS, unfortunately, due to being on them for long periods my body has become immune to them so they no longer work. Here are some of the Antibiotics that I have been on over these few years:

- Amoxicillin

- Clindamycin

- Doxycycline

- Azithromycin

I have been put on other medication also but this was years ago through the first stages of finding out I had Hidradenitis Suppurativa. Recently I was put on a new Antibiotic but I have had to contact the specialist as it was giving me severe stomach pains it was unbearable.

Whilst having Hidradenitis Suppurativa I found some of the following things to do that would help calm down the flare-ups;

- Warm compress to the flare-up site - this draws up the flare-up and might help with draining the flare-up sight quicker than just waiting for it to burst.

- Vicks; with this, I found that applying Vicks to the infected site and putting a large plaster or bandage around it would bring out the flare-up. This also somehow helped with the pain, but it didn't completely get rid of the pain somehow it managed to calm down the worst flare-ups so that they were manageable.

- A mild topical steroid can sometimes reduce inflammation (redness, swelling and pain). These were given to me by the doctors, and many times over the years I have had to use these. Sometimes they help up sometimes the flare-up is too painful.

- Surgery; Over the years I have had around 5-6 surgeries because of how painful and large my flare-ups have gotten. This means I am put to sleep for them to cut the flare-up open and drain the inside of it. I then have to go through several weeks of wound changes. This consists of them packing the surgery site, I will then have to have district nurses out to change the bandage. This depends on where the surgery site is, if the surgery sight isn't in my groin or legs then I will have to attend my local doctors to have this changed. This can become very painful and very stressful.

During my first few surgeries, my body wasn't used to having the surgery sites cleaned and packed. This caused me an awful lot of stress, during the wound cleaning and bandage change there would be many occasions where I would be in tears and sometimes I would often swear.

I hope everyone has a wonderful day.