Ready to give up

Posted , 5 users are following.

I am a 30 yr old female and have been suffering since age 13. I just don't know what to do or where to go from here. I have tried antibacterial soaps, antibiotics, multiple surgeries, even radiation treatments. I am steady searching but coming up empty handed. Never getting any relief has done nothing but break my spirit and give me a high pain tolerance. Right now I feel like giving up that life isn't worth living when all I have to look forward to is more pain suffering. Can anyone offer me some better options

Thanks: Katrina

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  • Posted

    Hi Katrina,

    Never say give up. Been where you are since I too have had the condition since I was 13. I am now 41 years old and have found that even though the disease is still persistent it's not as bad as what it used to be. What areas do you have it in? Have you tried dietary options? Do you smoke? Yes, antibiotics do not work. Idk that there is a medication that does. From what I have learned and seen and done, the best relief has been Kenalog Injections and diet changes. Look up *nightshade foods* Once I removed them I began to instantly feel better. It has been one year and I am just slowly adding foods back in, but the second I add a food that triggers my system I can tell you for sure that I get a new cyst. Potatoes are a big one for me and unfortunately they use potato starch in everything from cheese *labeled under enzymes* to toast bread and even croutons for salad. I have recently found that fruits also trigger me. It's a very slow slow discovery.

    I began by eating plain salad with chicken. No dressing. That's when I found out I was sensitive to white onions. Removed them permanently. Waited a week and added red onions and they were fine. Waited another week and I added eggs. They were fine. Waited another week and added peppers and they were a problem. Problem is tgat so is anything that has peppers or pepper of any kind in it. So now I had to remove mayo and mustard. Shell fish are also a problem for me, along with allot of starchy foods.

    So as you can see it is a very tedious, tedious process. If you are a smoker like me try decreasing the amount you smoke. Another big thing is Water intake. If I do not get a minimum of a half a gallon I get swollen and get small lesions.

    I swear to you though within a few weeks the scars and lesions began to close. It has made a world of difference. Walk, slowly and try to stay calm. Stress is another big trigger.

    Read, read and read. There is no magic pill or magic potion. It is just the bodies way of fighting itself. There is something that your body is trying to tell you.

    Write back and best of luck smile

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    • Posted

      Thanks for the advice. My H.S appears on my butticks, groin, armpits, under the breast, my back and thighs. I do smoke and will try and cut back. I will also look into some things about my diet. I am glad I joined this site today. I have learned a lot. I knew someone would understand what I was going through. Thank you again! Hope yours continues to get better also
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    • Posted

      Yeah I have them in the same sites. All of mine have dried and up and went away, and when I get them now I get them on buttocks rarely.

      It's a tough riad and just like u I have learned from others.

      Also I had my Vitamin D checked. Turned out I was a negative 4 (after coming home from Dominican Republic). I also take Liquid Vitamin D everyday. Idk if that has helped but I know when I don't take it I get small lesions.

      At the end of the day I believe, after 30 years that I needed to stop and listen to my body. The answers are all there just stop your mind and listen to your body.

      I wish you the best always. Take comfort in the fact that people are all around you and everyone is dealing with some sort of battle.

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  • Posted

    Hi I find that usually ab's work for me and get rid of the infection within 2/3 days.  I have found recently though that they are taking longer to work,  sometimes 10 days which is worrying.   I don't know how I would cope without them.   x
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  • Posted

    I'm so sorry that you're this discouraged. HS has a way of just beating the crap out of you, especially when you're down. Half the battle with this disease is keeping a positive attitude and to keep pushing forward.

    Part of the problem with HS is that everyone has a different trigger. I think that's why it's so hard for doctors to find an effective treatment for it. What works for one person, may not work for another. Some people respond well to surgery, others, like me, don't. Some people respond well to antibiotic therapy which is essentially just a powerful anti-inflammatory, and some people don't.

    The best thing you can do is to try and identify if you have a trigger. Whether it's hormoal, dietary etc. For instance, like dita, mine is definitely my diet. Nightshades are a HUGE trigger for me. I've been off them for about two years now and I've been in remission since I cut them out. And I was stage 3 under my arms, in my groin and my anal region. Other common food triggers are gluten and nuts. Avoiding sugar is also a good idea, as it's a very inflammatory in general.

    Hormones are another possibility. If you notice that your HS is affected by that time of the month, chances are you have a hormonal trigger and should be evaluated.

    Another common trigger is stress. And actually I think that's the one trigger that everyone with HS has in common. HS is an autoimmune disease and stress has a huge impact on breakouts. Having a stress-management protocol like yoga or swimming is a great tool, and it'll also help stabilize your mood too.

    A lot of people have had success with Turmeric. It's essentially a natural anti-inflammatory and acts the same way an antibiotic would in your system, just without killing all the good intestinal bacteria and you don't build up a tolerance to it. It seems like taking it in conjunction with Zinc to help support your immune system also helps a lot of people with HS. I personally had mixed results, but al of HSers swear by it. That said, it's worth trying as it definitely won't hurt you, but it can take up to 3-6 months to see results, especially if you're HS is more severe and it sounds like it is.

    Make sure you have a healthcare professional you can talk to about this, one who listens more than they talk. I personally see a DO instead of an MD, just because they're more open to treatments outside of medication and surgery, like dieting for instace. Just make sure you have someone you're comfortable with, and if you're not, find another doctor. Seriously. Your doctor isn't the one who has to live with this condition, you are.

    I would really recommend doing an elimination diet to determine if you have a food trigger. just as an FYI, tobacco is a nightshade so if your breakouts are affected, chances are you have issues with nightshades.

    Also, do you have anyone, like a friend or family member you can talk to about this? HS is so isolating, it always amazes me how many people try to do this on their own.

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