Looking for advice on how to reduce HS scars

Hi Dita

I nearly cried then. Just because it's so nice to talk. This is the first time I've ever shared anything on a forum about my HS and your reply means so much to me and so thank you.

The only think I can't think of that helped with my HS was weight loss because I shed 4 stone from 13 stone to 9 stone over 2 years. But up until a month ago I was a full on smoker!!

One month ago I got a break out in one area on my inner buttocks and it's still here. But it's the only one I've had, touch wood. Antibiotics haven't helped. It's my first breakout in two years. I read about the possibility of wintershade foods causing a problem for autoimmune cases, one of which is chillies and I have been eating them a lot recently in home made Thai curries and so I'm gonna cut them out and see if it makes a difference because before a month ago I hardly ever ate them.

xxx

My marriage ended 2 years ago due to my HS and so I'm starting out from scratch with online dating. It's a subject I haven't been willing to share with any dates and so I just shy away and say goodbye. Also my rapid weight loss together with the scars on my buttocks means the area looks even more ugly. I really want cosmetic surgery but am scared it'll look even worse.

It's so lovely that you have a guy who goes through it with you. He's a good'n and obviously loves you so very much.

Would be good to share all info we. Have you tried cutting out the wintershade foods? I only read about it yesterday and so am cutting them all out!! Except for potatoes because I've been eating those all the time for the last 2 years without flare ups. xxxx

Hi Sarah,

To make you feel better, I too am new to the forums. I found that I loved reading and learning from everyone but I knew I needed to contribute in my own small way. This disease takes sooo much from all of us (it is so much bigger than the disease). I feel like HS has stolen sooo many wonderful years with family and friends. Moments where I couldn't participate in lifes joyous moments; and as I kept reading I thought about how isolated we all felt. Grasping at straws to make a connection with anyone who can fully understand.

I'm sorry about your marriage. He wasn't strong enough or worthy enough to be in your light. It is sooo great to hear that you have lost the weight and quit smoking. You goooooo woman *clap clap clap*

It's great that nightshade foods are not a trigger for you. I don't know which one's are for me I just have quit on eating starches. I am sticking to chocolate (not a problem food at all). Unlike you I have put my life on hold becuase the disease has dominated my behind for the last three years. Of all the places I've ever had it this would be the one area that has kicked my ass and done a number on my personality and my weight. I too smoke but I had these things before I smoked so i'm not sure that smoking is an issue, but I'll keep trying.

Meeting you online is wonderful. Making a connection with another person who gets it is wonderful.

P.S. so I tried the Clinda/Rifampin combo yesterday and un fortunately I had a severe reaction to Rifampin. So back to the drawing board . Looking forward to chatting again.

I will tell you with 100% accuracy that HS is caused by ingesting what is known as "Nightshade" vegetables. I am NOT a doctor, but a sufferer of the disease since I was 18 (now 44). I have it everywhere underarms, groin, buttocks, under breast, etc. Look them up and stay away from them. I am currently trying to quit smoking as tobacco is a nightshade.

Yeah it's just so depressing and embarrassing and I'm drained from the worry of telling a guy.

I was happy dealing with mine for years and years when I was married but now I'm divorced for 2 years and looking for new love it's completely different.

I'm exploring different avenues for scar removal and will update once I know more xx

P.S. maybe you can look into light therapy or plastics can maybe remove them; now that you have lost the weight they can probably cut them and stich the skin in those areas. I know where I had stiches I didn't get the same scara as I did when the doctors left them open. You should try and find one . But always get a second opinion!!!

Also Dita, I met with a cosmetic surgeon in the uk who said nothing could be done because of the area it's in and how widespread the scars are in. He was recommended by dermatologist but I am going back to my dermatologist who referred me to see what he thinks. If this cosmetic surgeon can't do anything then where so I go from here! I'm at a lost. I just want surgery to get rid of scars. Gonna get extra opinions for sure XX

Hi ya, what laser treatments have you tried? I really want to find someone who can help with the scars?

I've never trid a hydroquinone - bleaching agent. Where can I get one from the uk?

Thanks Dita! Do you live in the UK

No, I'm in NJ, but I'm soooo fortunate that my dermatologist is a pretty amazin human being. She has taken me and we're friends out side of work. She is the only person in my life that I can honestly say has seen every crevice amd crack and yet she is soooooooo humble and a complete joy to be around. I spoke to her and told her your story. She said try the adapalene. She said don't mess around with the bleaches because HS scars are notorious for turning into skin cancer so she said please tell her to leave them alone if she can.

I'm sorry -I hope I didn't upset you. :*(

Honestly I was soooo desperate to never get another one that I tried the Rifampin, and I just got back from the Emergency Room. Lost feeling in my arm. I was covered in hives and my skin is still on fire. So my body is telling me stop. I don't have them bad enough to put myself through all this nonsense. I have one for God's sake.

Lesson of the day : Be careful what you ask for. My scars look like I've been in war but you know what they are nothing compared to the torture I've been threw looking for a cure or ways to hide them

Hi Dita

I'm so sorry to hear about your reaction to Rifampin. That must feel terrible. Are you OK now? I hope so my lovely. It's great that you have a derm that's close to you! I've had to go private because the waiting list is 9 months on NHS and I'm at a loss.

Thanks for asking your derm about my case. That's so lovely of you!! I'm going to get the adapalene that you and her suggested. I think it's only available on prescription and so need to make a docs appointment for that. Have you tried it?

I am worried that any surgery could make matters worse. I thought they could do anything nowadays but I'm obviously wrong! I have my 7th date with a guy this Thurs and up until now I've always insisted lights off. I'm scared and will insist this again. I'm not ready to tell.I just can't do it because I like him a lot. First guy I've 'really' liked since my divorce 2 years ago. I figured it's best to know for sure that he likes me first before I tell. All other guys have run a mile and I don't think I can take it again because I'm just so depressed with this rubbish! Not sure what another negative reaction will do to me.

I want to say thank you for giving me lots of info and support. I wish we could meet! We should do FaceTime or something?

I also hope that you are OK my lovely xxxx Although we've met under these circumstances - I'm so very happy we've met xxxx

Hi Sarah,

Oooo the Rifampin kicked my but...lol. Spent last night in the ER again. I had a very bad systemic allergy. But all is getting better today .

Honestly, she said it will lighten the scars and it should cause no damage, but you do need a prescription for it.

I'm sooo happy that your letting someone get close to you, but be careful because if you become emotionally invested and then he walks away you will be hurt in the long run. I don't mean to cross boundries by saying that to you but I am worried about what he will think.

I too am glad that we have met and it's ok that it was under these circumstances and I would love to get to know you better. Do u have a Facebook Account? Let me know if you do. You can email me directly at

[email removed]

Hope to hear from you soon.....

Have fun on your date .

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Hi Dita, sorry for the delay. How are you my lovely? Are you ok? xx

I know your words are so true but I can't bring myself to do it just yet. I might get hurt but my idea is that if he likes me for who I am first then my illness won't matter.

He knows I'm body conscious and every time he knows to turn out lights etc. I've also been to visit him now 2 hours away and I'll tell him soon. So8 meet ups I total. All with lights out lol. He doesn't mind.

I'll tell him that via an email. Can't do it face to face! Not sure what to say in an email but I'll work it out.

I hope you are ok my lovely? xx

Apparently we can private message on here?

Hi Sarah,

I tried to give u my email address but they refused my message I guess. I'm so glad you are doing better and I'm happy to hear that your relationship has taken a step forward. They are just skin discolorations they do not define you or your beautiful soul.

I have been ill for the last week - rifampin did a number on me then the hospital gave me too much steroids and put me in medically induced psychosis (I did not think this was possible), but it is. So I'm just home trying to recover.

Please write again, I enjoy updates from you.

Stay well abd ttyl.

Hi Dita, how are you feeling now? Any better? I heard we can private message on here but not sure how to?

It's time that I email the guy and tell him because it's only a matter of time till he discovers. I'm freaking our but have an email

ready to send to him. Imexoecting himto run a mile and not sure how that will affected. The stress of worry has given mea serious break outl lump too in the groom area. The 2 hour driving those him

I hadn't finished or had time to correct mistakes of the previous message before accidentally hitting reply!! The 2 hour drive to go see him has taken its toll too, as you an imagine. I'll try and be strong as I expect he'll dump me. Knowing where I'm tho I'll take a hard hit though. You were right!! Should have been open from the start. The above message isn't right cos I didn't have a chance to proof it but the stress of it all has given me a break out after 2 years of no issues. I have a lump that's out of control now. Why o why! Think i should just dump him to save any unnessary heart ache rather than tell him and cause even more emotional upset. xx I hope you are ok Dita? Let me know how you are xx

Hi Dita

Happy New Year to you. How are you? Has the issue with rifampin been resolved my lovely? xx

Hi Dita

I realised we can private message on here: http://patient.uservoice.com/knowledgebase/articles/398331-private-messages