Hidradenitis Suppurativa Support Group

I am so thankful for this site!

Hi,

My name is Nina Im a 28 yr old female that has been dealing with HS since puberty. It is so great to have a place to come and share experiences with those who know exactly what I am going through. I battled my HS alone, thinking I was doing something wrong. It wasnt until my gyno told me of my condition when I was explaining some scarring in between my legs. The happiness I felt to just be able to put a name to what I was going through felt amazing. To make matters worse, I also have hyperhydrosis. This makes keeping problem areas dry almost impossible to do. Recently, my HS has decided to move away from my thighs and infiltrate my underarms. This new development has shocked me to my core, because I try so hard to do everything to prevent these suckers from popping up. Most days I try to focus on the good things in life and how I am "lucky" in other ways. Like everyone I have a lot of bad days too. Days when I feel I cant go through another flare up, or when my thoughts drift to "what if I have children and pass this along, what then?". I try not to go into this type of dark thinking. When I read the posts of the survivors on this site I feel hope. And I thank everyone for having the courage to talk about your experiences and share your knowledge.

Welcome Nina. I agree, it is really good to know that you are not alone. I am sorry to hear that you have hs in conjunction with hyperhydrosis which would not be helpful to hs. Everyone in the group is different and may have other things with hs so that is why some treatments work well with some but not with others and we are all looking for what will work for us and to share so that we might help others. I know what you mean about the up days and down days. I have depression and sometimes I feel so negative that I am afraid I will be bringing everyone down. But this group has really helped me to pull out of the depression when I am reminding myself that everyone here is going through what I am going through and maybe even worse and they have been there for me. So I am trying to pay it forward as best I can. Having a good attitude like you described most of your days is awsome because it helps to have a good attitude to bring down the stress levels and I believe that most of my worst breakouts were when I was stressed. This is a nasty disease because it seems for me that when I have a flare up I get stressed and the stress causes more -- so I have to remind myself to take a breath and count my blessings and say a prayer. By the way, I just found out that my mother may have been the one who had it (she died recently and I could not ask her after I found out I have hs and my dad died when I was young) I have three sisters and two brothers and none of them have hs. I had three children myself and none of them have it either (the oldest 32 and youngest 22). So even if you have children, you may or may not pass it to them. Just a thought to keep you from worrying too much about that.

Gwenda

My dad had another skin condition that caused him to have cysts on parts on his body (mostly his back)and my derm told me that HS is in that "family" she told me that those 3 conditions (sorry forgot the other name) can be genetic. My son is 12 and I do worry that I have passed "something" on to him. You are in no way alone and Welcome to the group!! My HS is contained to my bikini line and groin area. It's been that way for over 20 years now 41. Temperatures here are in the high 90's again with high humidity...I live in MD. Stay Cool!!!!

Welcome to the group Nina

It too bad you had to endure for so long with nobody to understand what you were going through. What an awful time to have to deal with HS and especially all alone.

I remember so well how happy and relieved I was to have a name for what I had. Even when I read that is had no cure or treatment It was still good to know what I had. "I don't know" was never a good response when anyone asked me why I was limping or holding my arm out like a statue.

Like the majority of HS sufferers, no known person in my family has had HS. And none of my 4 children have it and they are all middle-aged now. There seems to be more than one category of HS and the least common one is thought to run in families somewhat, but not thought to be "hereditary" in the actual sense. More studies are needed to get a real idea of that, however.

The odds are with you though, so hope you take this into consideration when thinking about having a family.

I have HS in my armpits only. I have had surgery on both "pits" to remove the layer of skin where the apocrine glands are. The surgeries went well, but are not a 100% solution. I now have 2-3 flare ups a year instead of many many more. If I catch the flare early I can call my dr and he'll call in some antibiotics for me, otherwise it's in for a lancing I go. I've also been restricted from wearing tight clothing (yeah no bra!!) and deoderant. (I use a Crystal stick which kills odor but allows sweat) I'm also supposed to only shave with an electric razor to prevent clogging of pores and accidental cuts. Hang in there!!

Hello Nina & welcome to our little family!

I am turning 28 in about two weeks, so we are about the same age! I am in Oklahoma & due with my first child in September. I recall asking myself the exact same question: "What if I pass this onto my baby girl?!" but (as Karen stated) I also do not have a single personin my family with HS: I am a loner-ha! So, I am not going to worry about it because I believe that chances are slim that she will have it too. I have 4 siblings and 6 nieces/nephews & none of them have it either so I am not going to worry myself with something that I cannot control, nor that I know will actyally happen.

It's great that you try to focus on the good things in your life & to remember those good days/times & how blessed we truly are- when we are going through the rough times & bad days. I know how difficult it can be to see the light at the end of the tunnel when you are layed up on the couch/in bed, or forcing yourself to go to work when you are in intense pain & walking like a bow-legged cowboy! It's even worse when you are having to change bandages every hour & the tape rips your skin off... ugh. Luckily, I am not ashamed & have made it a point to become my own activist to make people aware of HS because so few are aware that there is a disease out there like this. I have educated all of my friends/ family/ co-worker's & anyone that will listen! I also have an amazing supportive husband who knows that I am a go-getter & like to do things on my own, so when I physically can't, he knows things are really bad. I am OCD & not being able to clean the house really annoys me, but sometimes I just have to let things go because the more I stress about not being able to do something- the less I am able to do them due to another flare-up from the stress! Such a vicious cycle.

I am saddened that there are things I can no longer enjoy (well, while we live in Oklahoma & during the summer specifically) like hiking, camping & spending all day at the river/lake. Just being in the heat/humidity alone trigger's new aliens, but our lakes/rivers are SO dirty & I am not going to risk infection in the open aliens. Ugh.

Anyway, sorry for my rant- I just wanted to welcome you to the griup & to let you know that you are absolutely not alone! <3 Candace

Thank You all for your positive words. Really, words can not express how great it feels to know that even as we suffer, there IS good in the world! I look forward to being that smidgen of positivity in your lives as well <3

Nina, I am so glad to hear that there are others who try to stay joyous in their battle with this horrible disease! Others let it take them down with it and we have got to put a STOP to that!

Now, don't get me wrong, there are days when I am "dying" on my deathbed & feel that there is no hope... those are my bad days & we all have them. But, I am generally a happy person, so I am TRY my hardest to stay that way when I am dealing with a new alien. <3 Candace Hooray for Happiness!