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12/04/2011 08:49 PM

Finally a group that understands.

HyperHoney
HyperHoney  
Posts: 9
New Member

Hi, My name is Haley. I just turned 20 and i have been dealing with this for most of my life. My doctor when i was a child really had no idea what this was, leaving me to be alone and scared of it at a very young age.

I can remember growing up, my family not knowing what it was always saying clean better, but no matter how many showers or lotions i used it just hurt so much more. Living in a very humid area does not help at all. and Actually as i write this, im in serious pain and dont want to move at all, which led me to find this group.

I am too young to think about drastic things like surgeries (although i could really use it) but my dermatologist recommended "Botox shots". But she only has two other patients with this one being a middle aged woman who just does a bunch of surgeries and a much older man who is a truck driver, which causes them for him. im neither of those, im just a college student with a part time job just trying to live life and be comfortable with myself, as i am with this.

Recently i was in the hospital for 3 months unrelated to my HS (which i had to explain to most, if not ALL of the doctors and/or nurses) While i was in there i was on alot of meds. including inflammatories and antibiotics. Honestly those months and the months following while on the medication, were the best i had ever had. There were NO new spots, no pain, no more scars.. NOTHING. it was amazing. then once i got off the meds. they slowly came back, and now worse then ever. I dont know anyone else with this. and having to explain it to all the doctors i meet, just makes me feel even more alone. Wish this would just go away.

-HyperHoney

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12/05/2011 12:15 PM
HSvictim
HSvictim  
Posts: 101
Member

Haley;

Welcome to the group. It's amazing how alone this disease can make you feel. Have you talked with your dermatologist about maybe starting you on antibiotics, like you were on when you were in the hospital? They really seemed to help. You could also try to find a dermatologist that is more experienced in HS.

Things that help me are hand sanitizer (applied to the areas that are affected), and hot packs when I have a flare up.

You mentioned explaining to the nurses at the hospital what it was - that's a great thing. The more people who know about it, the more it will be correctly diagnosed.

I haven't had any botox shots yet, but a few other members have. I hope they stop by to share their experiences.

Just remember, you are not alone.

Casey


12/05/2011 06:45 PM
HyperHoney
HyperHoney  
Posts: 9
New Member

Thank you for the tips. I will try them out. I heard the Botox shots are very painful though. I just dont need any more pain. also, hand sanitizer? that seems interesting.

12/06/2011 04:14 AM
HSvictim
HSvictim  
Posts: 101
Member

That's what I thought about hand sanitizer, but I've found it really helps keep the area dry. I understand what you mean about the pain. We're here for you if you need anything.

Casey


01/03/2012 11:44 AM
CanFizzle
CanFizzle  
Posts: 1470
Group Leader

Hello Haley! Very nice to meet you and am so happy that you found our little family! I have been away for too long and now I am back and tryng to catch up on a SCARY amount of new threads-ha! W00t

So, first of all, I am so sorry that you are suffering. But, I am pleased that you have found us here! This support group has been the foundation for me, to personally learn to be my own advocate to spread awareness about this horrible, embarrassing disease. I think we all know what you mean when you say that you were told to "clean better" or use extra soaps, etc. So, I am curious if you actually know what meds you were on while you were in the hospital? If they were really helping, than perhaps trying that exact coctail of medicines can help you in the future. Also, I do not mean to be pushy on our first introduction, but what were you hospitalized for? Perhaps you may not think it's HS-related, but what I have discovered, is that all things involving my body are now directly linked to everything that goes on with my HS. Ugh. Devil Anyway, do not feel pressured to answer any questions that you do not feel comfortable with, but I also like to remind people to feel free to ask away with questons! We are not modest here! Grin Also, you said that you live in humid climate? Me too! Blink I live in Tulsa, Oklahoma and Oh jeez, does it ever get hot & sticky here... yuck! Anyway, very nice to meet you & I hope I get to hear from you again soon! <3 Candace


01/03/2012 05:03 PM
HyperHoney
HyperHoney  
Posts: 9
New Member

Well i was in the hospital because when i was 7 i was also diagnosed with ulcerative colitis, i was in the hospital bc after 10 years it flared up again and i had some sort of infection (one reason why i was antibiotics that helped the HS) i believe it was called flagyl. they had put me on bed rest and i couldnt even go out of my hospital room and everyone has to wear gowns and gloves. so i was laying in a bed all day. my grandfather had passed away which the stress caused my UC to flare up. So when i got out the the hospital the next day i flew with his ashes to Illinois. THAT was a big no no the laying down continusly and then flying caused me to have blood clots in my lungs. it was very painful and led me back into hospital. but yes the flagyl i think also mixed with Sulfasalazine (for my UC, brings down inflamation)was the reason why my HS was pretty much gone. BUT flagyl is very stone and was only perscribed at limited amounts each time. also this might not be related but i also have PCOS which actually reading up about it sounds like and was discribed to me like it was similar to HS just inside your body.

so yeah thats my long story, it just all hit me at once after my grandfather passed away.


01/03/2012 06:29 PM
RedSoxSalem
Posts: 44
Member

Hey Haley! It's interesting to read your long story, though. So it didn't seem long at all. One important thing to remember with HS is that you are NOT alone. It can feel like that sometimes but just think about the support system you really do have. Not only everyone here, but your friends and family too. Even my pets (three dogs) help me with my HS. Even the worst things that can happen to you really are not that bad, because the good will always outweigh the bad.

As for the hand sanitizer, I can also vouch for that and I do suggest you give it a go if you've not already. =) It's really cool and feels good during application, and afterward leaves the area very dry. Stock up on it!


01/03/2012 10:09 PM
HyperHoney
HyperHoney  
Posts: 9
New Member

i will try the hand sanitizer Smile and yea i have my yr old golden with me. Its like she knows when im in pain and sometimes cry bc the pain hurts, so she always cuddles up next to me and makes me feel better. this is the only place where i pick up tips and talk to people who have it just like me. it helps me get through alot. Smile

01/05/2012 11:50 AM
CanFizzle
CanFizzle  
Posts: 1470
Group Leader

Hello again Haley! I am so sorry to hear of all that you have been through, but I will start with stating that many researchers believe that HS & UC are linked (but have no idea how/why and cannot yet prove these theories) as well as other diseases/illnesses like Chron's Disease, Grave's Disease etc. It is not certainty, but sometimes when you think something is not related to HS, and then it turns out to be!? Blink I recently found out that my HS moved to another location on my body. What was frustrating was that 10 months before I had a doctor look at this exact area to ask if it was my HS spreading and she told me no. So, here I was thinking that they were not related and she diagnosed it as eczema, and then I find out that it is HS! SO they are related & that blew my mind!

Anyway, enough about me! Back to you and the fact that you had to live in a sterile room at the hospital for 3 months? Yikes! So, the fact that you have a hormone definiency (PCOS) and the UC makes complete sense that you would have HS also... if they can actually prove how/why these are all linked??? Oh and I also wanted to add that my two pitts are my babies and they also seem to know when I am hurting. They are soooo much better behaved and quiet & not as rowdy when they can see me wincing in pain on the couch or in bed. Anyway, hope to hear from you soon! <3 CandaceLaughing


01/05/2012 12:30 PM
HyperHoney
HyperHoney  
Posts: 9
New Member

Wow if they are linked i wonder if they can come up with something to control it. also i think its amazing how animals know Smile i must admit im a bit nervous to try the sanitizer others have mentioned helps.
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