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04/16/2012 12:50 PM

Just introducing myself...

prettybrown
prettybrownPosts: 2
New Member

I have been an avid reader of this board, off and on. I have been dealing with HS since about 11 or 12 years old. I have a twin sister and she has this annoying condition as well. I think its passed down to us from our grandmother. Our symptoms showed up at the same time and in the same places. It affected our underarms first and stayed there for about 8 or 9 years and here over the past couple of years it has spread to our groin and breast regions. My sister's situation got a little worse than mine last year and she ended up having surgery to remove the damaged tissue in her groin. Her surgeon wanted her to heal from the inside out so she stayed in the hospital for 3 in a half weeks. She is recovering well and is doin quite fine now. I am fearing that, I too, may have to go down the same path as she did. My groin region and "lady" parts have been recently affected and our getting out of hand. . . . This condition has made me feel very insecure about myself and very hesitant when it comes to meeting guys and dating. It was very easy to hide the scars/drainage under my arms but now its not so easy to hide the scars on my breasts or lady parts. I feel like I have a real life chasity belt because I'm fearful to get intimate with a guy due to this condition. I'm pretty sure i'm not the only one who feels this way. .Unlike most of you, I atleast have someone to share this experience with (my twin sister)...she knows what i'm going through and I know what she's going through..I just cant quite figure out how to deal with H.S and the Dating Scene. . .well, I'm Lamonda, im 25 years old and i teach high school. That's my story summed up.
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04/19/2012 01:05 PM
CanFizzle
CanFizzle  
Posts: 1476
Group Leader

Hello Lamonda & welcome to our little family! W00t I ame excited to meet you & pleased that you have decided to chime in, after being an avid reader. I am also pleased to hear that your twin sister also has HS, and that you are not alone in the battle against this disease! But I am saddened at the same time, that both of you have to endure the heartships involved with the daily pains of HS & being a high school teacher on top of it all! Silly

I wanted to inform you about the HS Institute of Westlake, Ohio (if you were not already aware of it) because Dr. Hazen & his team could be able to help you go around surgery, if that is indeed what you want to do. They have several options for treatment methods & it all depends on what stage you are on with HS on what areas of your body. I know that the groin & breasts have to be the most painful/embarrassing areas to be affected. I have HS on both sides of my groin & my buttocks too! Sick It gets harder each summer to hide the scars on my legs for a swimsuit or even shorts anymore. I can understand your worries about dating- but you should not be ashamed! There is nothing that you can do about having this disease, so you should not feel embarrassed about it. I know that if you are wanting to be intimate, well that should give you a great reason to be be certain that you trust that person first! Or you can hide in the dark/lights off & no one will have any idea. Whistling Regardless, I am so glad that you have joined our family & I hope to hear back from you again soon. Please let us know any other questions that you may have for us here! We would love to be able to help you out in any way that we can. ::hugs:: <3 Candace Smile


04/20/2012 08:08 AM
oregonnative
oregonnative  
Posts: 5766
Group Leader

Hi Lamonda Smile Welcome to the HS family. That is what we are here really as we can all relate to what the other is going through. Like Candace, I am so sorry you have to deal with this terrible disease and sorry for your sister too. But glad you haven't had to go through it all alone.

I hope your sister continues to do well, and really hope you don't wait TOO long to have yours considered for surgery. It's so much easier before it gets way out of hand.

All the best and glad you found us! I am not around much lately, but I do check in so hope to see you here often so we can get to know you. Smile

Karen


04/20/2012 08:47 AM
prettybrown
prettybrownPosts: 2
New Member

Thank you ladies for your responses. It feels good to be able to network with people who ginuinely understand. I checked out that HS Institute, it looks very INTENSE! My sister's surgery was pretty much intense as well since the doctor wanted her to heal from the inside out. On the flip side of that, she is pregnant and recovering very well so it's safe to say her pain and long days/nights were worth it. I will definitely keep visiting this site. Every little thing helps. Thanks ladies.

04/20/2012 06:43 PM
oregonnative
oregonnative  
Posts: 5766
Group Leader

If your HS is still in stage 1 or early stage2, surgery by a dermatologist or plastic surgeon to remove the apocrine glands and follicles in your trouble areas is not nearly as intense and does not usually require the wide excision and healing from the inside out, as it does once it reaches late stage 2 or stage 3. It's all the sinus tracts and scarring which make the surgery so much more extensive and deeper in the later stages. Plus all that infection with abcesses also make it harder.

I sure don't want to scare you but think you would want to know anything we know. I have had HS for over 30 years now and have learned quite a lot from my own experience and from the hundreds of HS sufferers (survivors Smile ) who I have talke to here. I have learned oodles more here than in any of the research papers and studies I have checked out.

Anyway, just really glad to have you here and posting! Smile

Karen


05/01/2012 11:17 AM
CanFizzle
CanFizzle  
Posts: 1476
Group Leader

Hello again Lamonda! I was wanting to let you know that, on top of what Karen added, Dr. Hazen at the HS Institute has several treatment method options provided and only he & his team can decide which is best for you in your current stage of HS. So, that does not necessarily mean that you would even need to have a large surgery- or surgery at all? Silly

I hope that we get to hear from you again soon. I am glad that you like to pop in & read others' discussions, but I would love to hear from you to see how you as a person cope with HS being a teacher! That was my original major and even though I have flip-flopped, I cannot help but think about HS getting in the way of providing education to others. What advice would you have for someone like me, who wants to follow in your shoes? Grin <3 Candace


08/23/2012 05:56 PM
caressieauna
Posts: 2
New Member

I am in the same boat as you and your sister. . all I can say is have fith that God will send you an understanding and supportive man. That thought is what keeps me going. .

08/28/2012 08:01 AM
CanFizzle
CanFizzle  
Posts: 1476
Group Leader

Crissy- that is great that you have faith that a good man will come your way! I also believe that he will land in your lap & possibly even go to your school. You never know! Tongue <3 Candace
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