1. Community
  2. Skin and nails
  3. Hidradenitis Suppurativa

New to HS

Posted , 5 users are following.

steveo12
steveo12

MALE 28 (non smoker)

So recently about four months ago, I spotted this boil near my groin area / pubic hair. I thought it was just a spot that was unusual. Then only about two weeks ago I noticed a few more. Then last week (after a gym session), I noticed a larger cyst like lump in the same area. 

I went to the doctor and got some 2 weeks of antibotics to reduce inflamation. Pus and blood came from the bigger lumps (they're about the size of a pea) and the tiny ones just seem like acne. 

Anyways, he never came outright and said "this is what you have", but from all the research it seems logical. However, after reading everything I read, my heart is drained, for the struggle a lot of you have gone through and knowing that I may have to go through the same.

There's little info here from people with mild cases, everything I read or see images of is just bad news. Does it always get worse or do I just read the worse of the worse??

Thanks

0 likes, 5 replies

5 Replies

  • ema1111
    ema1111 steveo12

    Posted

    Hi Steve,

    Exactly same thing went through my head when I got diagnosed early last year.  I was only affected in my groin and wasn’t no where near as horrific as all other cases I was reading about online. I wasn’t affected in my armpits or breasts like most others nor did my symptoms develop during puberty but only in the last 2 years.

    I'm 26 year old non smoker, slim & healthy already but have lost more weight trying to manage this condition. I no longer eat any dairy, wheat/grain, gluten, nuts and nightshades.

    In the beginning I was quite optimistic and was adamant that I wasn't going to let it get that bad & in my dermatologist opinion was also that my conditional was not that bad compared to her other patients with HS. 

    However over the last 6 months it just got out of control, I'm doing everything in my power to help, changed my diet, taking turmeric and moringa supplements, drinking aloe vera, epsom salt baths, coconut oil & still continue to do so. 

    I'm at a point where I got refused for surgery as it had become too widespread, I now work from home half the time because I’m in pain 80% of the time, I had to give up and move out my beautiful flat and move back in with my parents as I can't manage on my own with this condition, I can't plan a holiday go on a date or even enjoy a night out when I want to. 

    I got told by other people with HS online that I needed to be prepared for this to get worse but back then I had faith I'd be okay. So what I'm trying to say is, you might be okay and I really wish it doesn’t get any worse for you but there's no predictability with this disease. One day you may be okay the next it'll turn your whole life upside down.

    There is a facebook group for HS which can be quite helpful

    Regards

    Emma

    Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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

  • bex1892
    bex1892 steveo12

    Posted

    Hi,

    Sorry to hear your news. It sounds like your stage 1. If they haven't joined up?

    I've had Hs on and off since I was 20. boils and small lumps which would come and go. I'm 33 now, not overweight, I smoke occasionally but otherwise generally healthy. I could go months without one.and never really knew it was HS until recently

    In July 15 I was really run down and stressed and I had a huge one like never before come up in my groin. It's only starting dry up and to go down now after a 3 month combination course of antibiotics which were prescribed by a derm. Rifiden and clydamycine.

    It's been a wake up call and I hope it doesn't come back or get worse.

    I agree there are some real Heros out there living with HS which has such an impact on every day life.

    Everyone's triggers for HS are different. I have tried all sorts of diets in the last 6 months and just recently I've just stopped thinking about food (but still being sensible) and so I don't think mines good. Probably stress.

    You just need to find your trigger...if possible!

  • Ingoldsby
    Ingoldsby steveo12

    Posted

    Not sure if I am much help, but I have had it for about the same length of time. Started with one that turned into three, and then four and five. I took tumeric upto three times a day and eliminated the nightshades the best I could ( pretty hard to do in summer !). I have not had any start up spots in the last month or a boil in six weeks - I have since stopped taking tumeric (although always a constant compainon in my bag). I have no idea if this is remission or more is to come ( don't want to know), how ever at the moment it is on holiday.  The sun is shining, I am sweating like a pig and I might even get bold enough to shave the pits
    • bex1892
      bex1892 Ingoldsby

      Posted

      Use hair removal cream rather than shave...it's made a huge difference to my pits!!

      Good luck. I hope it doesn't come back for you.

    • chris_04846
      chris_04846 bex1892

      Posted

      Which one ? I have finanally began to touch mine eyes closed in shower after 3 years. Ive cried there so many times but now that i know what it is i try mild soap before work to eliminate odor. Beleve me ive tried bleach, alcohol, antiseptic, antibiotics, loss my partner . There has to be a cure for this.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.