Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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/ Hidradenitis Suppurativa Support Group

long time sufferer of HS

gennit
gennit
After I started my period and hit puberty at the age of 12, I received my first boil under my arm pit. I remember looking at it and felt ashamed. I didn't tell my mother as I thought it was my fault. It popped and it turned into this horrifying experience with me. I kept this from my mom even longer until it got really painful and that's when I finally told her and showed her it. Ever since, boils showed up here and there but nothing extremely crazy. Finally my mom had enough with me suffering in pain and embarrassment so we saw my doctor and finally got a name for this. It was clear I had HS. I am now 30 years old and expecting baby #2 in septber. This disease has changed my whole life to where I didn't wear short shorts or skirts being too afraid others would are my scars or even tank tops for hot summer days. Sometimes going to work was a chore when I could barely walk or move my arms. I this HS has a big deal with my depression as I don't feel beautiful as I should feel. All the doctors tell me to do is shower daily and hand out antibiotics and we know that's just short relief from the pain this disease causes emotionally and mentally. 18 years is a long time to deal with these things and wish there was advanced medical teams trying to figure this disease out and find better treatments and medicine. I am just another human that this disease has taken control over! We need a cure!
ckeyport
ckeyport
I got my first sign of HS at age 9 and am now 23. after 14 years I still struggle everyday trying to understand and cope with my body. The amount of times I have cried for seemingly no reason because the pain is too much but I don't want to admit that anyone is countless. It is a great relief of sorts to know that I am not alone in the frustration of HS and would like to send you a virtual hug because I understand the struggle. You say you are going to have a second child? I applaud you for that. The health and bodily changes of pregnancy and HS together terrify me and this is something I know I will have to face in the future. How did your HS do during pregnancy? Worse? Same?
deleted_user
deleted_user
I was also wondering about how pregnancy was with HS. I want to carry a child but I've been mostly leaning towards adopting because I'm so afraid of how bad it might get...
RonFetty
RonFetty
As a male long time sufferer I wish all God's peace, and pardon. I can see where woman would be fearful of being pregnant. I hope God will give His guidance. Children are such a blessing. Basically I'm saying too, hang-in there!!!
deleted_user
deleted_user
I've had three boys and I didn't have any HS during my pregnancies. I started at 20 years old with a boil under my arm, followed by 3 consecutively until antibiotics stopped them. The HS came back in my twenties, then baited off. I had our third boy at 34 and went a few years again. It's been over several years now that it's here and playing havoc. I'm on my fourth abscess in about two weeks and this one is refusing to burst. I know how you feel.

I hope my HS free pregnancies gives you ladies some hope here. I've heard that other ladies are the same as me. I'm adamant it's related to hormones as my menstrual cycle is involved here and when we're pregnant, our hormones change. I think you'll be okay ckeyport x.

Gennit, I can't say this enough but to know we are many who suffer this, softens the blow for me but it doesn't stop me wishing there was a cure for us.

All the best to you all.
deleted_user
deleted_user
I've had HS since I was 5...I'm 57 now. I wasn't diagnosed until 1997, and like the rest of you I suffered in silence. I've been through the surgeries, meds, been patted on the head and told I wasn't clean etc. Sometimes I feel like the embarrassment is worse than the pain!
I try to cope and some days are better than others, it is nice to see others like you coming forward to share your story! I would like to share a few things that have helped when dealing with the outbreaks. I stopped using perfumed laundry soap. This has helped with the outbreaks in my private area. I have also noticed that prior to a flare up the area begins to itch, bad. One day, out of desperation, I applied cortisone cream to the area. It stopped the itch and the area didn't flare. I'm in stage 3 now...I can no longer shave my armpits, I have scars, sores all over, and drainage on a daily basis. HS is horrible, but trying to stay positive is a must. Thanks again to everyone who has shared their story. Hugs to all