Living with Hidradenitis Suppurativa

This is my story of how I live with Hidradenitis Suppurativa (HS for short)

About Hidradenitis Suppurativa:

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 this condition. It's thought to affect about 1% of the population today.

This is not down to people being unclean or dirty, it is simply down to your hair folicules and sweat glands.

Symptoms:

The symptoms of hidradenitis suppurativa range from mild to severe. It causes a mixture of boil-like lumps, blackheads, cysts, scarring and channels in the skin that can sometimes leak pus from the wound itself. The condition tends to start with a firm pea-sized lump that develops in 1 place. This will either disappear or rupture and ooze pus after a few hours or days.

New lumps will then often develop in an area nearby that may have come infected. If these are not controlled with medicine, larger lumps may develop and spread. Narrow channels called sinus tracts also form under the skin that break out on the surface and leak pus.

Hidradenitis suppurativa is very painful. The lumps develop on the skin in the following areas:

- around the groin and genitals.

- in the armpits.

- on the bottom and around the anus.

- below the breasts, around the breast area.

The abscesses may also spread to the nape of the neck, waistband and inner thighs. Other isolated areas that have known to be affected include the front or back of the legs, the sides, the back area and the face. Some of the lumps may become infected with bacteria, causing a secondary infection that will need to be treated with antibiotics. Many people with Hidradenitis Suppurativa also develop a pilonidal sinus, which is a small hole or "tunnel" in the skin.

My Story:

I started noticing small pea sized lumps forming under my skin when I was about 13 maybe 14 years old. I went to my old doctors surgery and they didn't know what it was so they put it down to puberty so I just didn't think anymore of it, until they started to get worse. When we moved homes when I was 17ish I had to change doctors and I immediately got it seen too, which was the best thing I had done. I was diagnosed and got referred to a specialist in London in the same day. I finally had a diagnosis, I could finally get the help that I needed.

It took a while to see the specialist in London which was the worst part, with my body and the flare ups getting worse, I was getting more lumps and they started to get bigger and more painful. This made my self confidence and mental health decline a lot more than I expected it too. I had people around me that supported me and loved me no matter what and thats what kept me strong.

I started to reach out to other people who suffer with HS, I started to ask for help and I received some amazing online support which lifted my spirits up.

When I started dating my boyfriend of 5 years, I was so ashamed of my body that I barely showed my skin, whenever he would ask about myself I never told him that I was struggling. I then started to feel more confortable around him and eventually told him and showed him my scars and wounds, I honestly thought he was going to run but he told me that he loved me and he didn't care that I had lumps and bumps. He to this day is still loving every part of me which has been a massive confidence boost. He also dresses the wounds and makes sure they are clean and dressed before he goes to work. He has been there for me through 4 operations, he has been the one I see when I wake up from surgery. I honestly cant thank him enough, so if your reading this, Thank you.

If you are ever unsure about anything going on with your body get it checked, I wasn't going to and then decided that it was the best for me and it was. I finally know how to deal with the flare ups, I know how to keep the wounds clean and disinfected. I shower every day and carry baby wipes with me to ensure that I am clean and tidy.

I am now 23 years old and I am finally coming to the terms with the fact that this is a skin condition, I am getting help for it and I am managing it.

Thank you for taking the time to read this.

- Much Love x -