What does my pain feels like?
The pain is like nothing else I’ve felt in my life before. It’s stinging, not only physically painful – going to the bathroom, getting into the bath – but mentally getting through each day.
The pain can be quite complex. With stage 3 I’m dealing with open wounds pretty much every day of my life. It usually takes about 14 days before an open wound heals. I can look at 6 months for a boil that’s opening and bleeding and pussing.
Mobility is very hard especially if I have them underneath my arms. Doing simple things like dusting or cleaning floors can be very painful. If I have it in the groin area – walking is very hard. Sitting is very hard. I had them on the side of my stomach and rolling over at night would make me wake up screaming because I just busted a boil that was inside.
When I have bigger lumps that are deep, under the surface, I have this pulse, like a migraine, but it’s in my stomach, and I can’t necessarily see where it is, but I feel it, and the migraine part is like somebody’s stabbing me and it stops me dead in my tracks. I can be on the floor, crying, unable to move. Breathing hurts. The more my pulse is going the more I actually feel that throbbing feeling of agony.
What are my challenges living with HS?
I will probably never be seen in a white T-shirt. It’s possible that all of a sudden I can have a boil that busts and my shirt is all full of blood. I’ve had to go change quite a few times.
Proper bandages are something I had to learn about. Early on I didn’t know anything about it.
The pain, the disfigurement, most of my skin was harshly scarred.
At the beginning when my friends wanted to go clubbing and dancing I wasn’t usually one of them. I can’t wear tight clothing when going out. If I start sweating, I will break out and I will pay for it.
I missed a lot of days at work because of surgeries, pain, not being able to function at all.
How do I manage HS?
The weight loss helped. I’ve changed my lifestyle, the clothes I wear, my diet, my wound care – I change my bandages 3 times a day.
Different treatments may not have all helped but many did. Corticosteroid injections at the beginning really helped bring down the inflammation.
Learning proper wound care helped the most compared to when I first started. Knowing how to change dressings, proper washing techniques, the importance of hygiene, drinking lots of water.
I think I’ve been on every antibiotic that’s known. I’ve had sores lanced from one side of my groin to the other, armpits, and breasts. I’ve never gone through a surgery – that’s my choice, I just don’t want to do that. I’ve been in and out of hospitals a lot, a lot of bandages, being packed with materials to get the drainage out.