Looking for experience with HS
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So, since I was at least 14 (now 27), I can recall getting these pea sized bumps near the crease of my thigh, between my butt cheeks, not on my vulva but close to- purple/blue in color, that would drain then leave these ugly purple scars that are soft and indent into the skin. At 14, I was scared to talk to anyone about it, so I just dealt with it.
They seemed to slack off for a while, and I would only get one or two. I would have flare ups and then none for a while. Some were so painful that it hurt to walk or sit on them. I found that as I've gotten older they don't drain anymore unless they are small. If they are large, it's like they are deeper in the skin and so painful. Ones that I've tried to pop myself, will just bleed, or occasionally release a small amount of pus/blood mix. I've also noticed they will go away, then reoccur months later. I've seen multiple Mds who say, an abscess, folliculitis, cysts, that aren't candidate for drainage or lancing. Just gave me oral antibiotics and sent me away. One gave me topical mupirocin for one that had opened up. Told me to stop shaving with razors in the area.
I was finally referred to a surgeon. In July, I had a place excised with local anesthetic and closed with two sutures. They sent it to pathology and it came back as a chronic abscess. The site healed fine. I didn't have another one until a couple days ago. It's so painful and just tender and is about 0.5 inches from my labia, right in the crease of my thigh. There aren't any HS specialty clinics in my area and I looked on the Hs website but no dermatologist listed for my area that specialize in Hs.
My peri area is scared with all sorts of purple scars. This whole thing makes me feel like I'm nasty (even though I know I'm not) & embarrassed. I'm paranoid that I'll pass them to my husband or that I need to bleach the tub after soaking in Epsom salt to prevent my children from catching it. I just don't know what to do. I have an appointment with the surgeon who excised the last place on January 9th, & I plan to to bring up HS to her.
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pagal_4200 Nurseonthego
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Nurseonthego pagal_4200
Posted
lilyyy1113 Nurseonthego
Posted
I'm so sorry you're going through this. If it's any comfort, I have one in a very similar spot. Going the surgery route as well.
I've found that even though antibiotics are a temporary fix, they do bring them down in a few days.
Some people swear by tumeric and zinc supplements to help aid their hidradenitis. I personally didn't have much luck with it but different things seem to help different people.
I know that there are so many experimental types of treatment that people are trying but so far the only thing to have helped me permanently is surgery.
That being said, have you looked into dietary changes and food sensitivities? Some people go into remission when they cut out nightshadea or dairy.
I'm currently trying the contraceptive pill which may help regulate hormones and lead to less severe cysts.
Again I'm so sorry you're going through this. HS can be a very exhausting disease, however know that you aren't alone in this.
Nurseonthego lilyyy1113
Posted
I did antibiotics several times from January - June, & it did reduce them for a time, then it came right back, same spot and all. So, that's when I saw the surgeon. Since the surgeon removed that place, it didn't come back. I just feel nervous this time, since it's literally right near my labia. The one she removed prior was on the opposite leg, & 1.5inches from my labia, but still considered on my thigh.
I plan to try the zinc starting tomorrow, & see how that goes.
I briefly assessed the dietary changes that people had made, & I don't know if I'll be able to cut dairy. I do plan to try to cut out the nightshades.
I was on oral contraceptives for at least 5-6 years, and I will say, the places that came up were smaller than what they were when I came off of the pills to have children. I haven't started pills back because we'd like more children soon.
I'm sorry you are dealing with this, also. Thank you for your advice and encouragement. I hope the pills work for you.
lilyyy1113 Nurseonthego
Posted
I completely understand your feeling, same situation and spot for me! God help us!
Did zinc and cutting out nightshades give you any improvement?
And definitely look into tumeric as well. It seem to have aided many others.
Just a side note; I have found that the contraceptive pill has made my cyst flare ups more common and intensely, although it could be the extreme heat wave going on in Aus at the moment. So maybe it could be a good thing not to start the pill back up.
Another option would be seeing a homeopath. I've got an appointment in a couple of days to see if there is anything they can do. Surgery is a last resort for me! I'll let you know if some sort of regime is found with the homeopath that could aid with your hidradenitis too.
Hope you're holding on alright!