Hi,i am Sue,45 yrs old and have had HS since being 17 yrs old. It all started in my groin area which was terribly painful, several gp's have misdiagnosed me over the years but i ended up trawling the internet and diagnosing myself lol.

Over the years the HS seemed to get slightly better in my groin but became horrendous under both breasts resulting in an operation under each breast to remove the infected ares,this was really effective for a while but now my HS has come back with a vengence on my scar tissue 😠.

I have usually been given flucloxocillin antibiotics but i had some amoxicillin which i found to be very good,i am waiting after all these years now to see a dermatologist,why has it taken umpteen gps and specialists all this time to do this? #prayingforresults 😉

7 Replies

  • hi flossy , are you using hibi cleans . it helps keep bacteria to a minimum. my derm put me on lymacycline as a permanent antibiotic. it has helped in some areas like the groin but under the breast still flares.

  • Hi juliewho, i saw a dermatologist on thursday who prescribed me lymacycline also so am looking forward to seeing some good results,fingers crossed.

  • wishing you luck flossy, it is not perfect but along with hibicleans it keeps it down to manageable , i hope you get the same results.

  • Hi Sue. I am 49 yrs old and have had this condition since I was 14. It started in the groin for me also, then to my underarms. At 19 I had multiple areas of tunneling/fistulas surgically removed to both areas. That really helped for a long time. However after 2 pregnancies and subsequent weight gain it became significantly worse and spread to my breasts and abdomen. I was put on aldactone by my dermatologist and had been taught to self inject antibiotic/steroid into active areas as they were so frequent. I was informed that hormones and added weight significantly play a role in the severity. I did lose weight overtime and that has truly made the biggest difference, along with age perhaps? I stopped all of the meds land treatments for several years with very occasional sores. I recently have gained some weight back and incidentally have started having more active areas again. So definitely a correlation there.

    I am working on that again... It's worth it for me... It's so wonderful to find this community here as growing up I never met anyone else who had this. ( not that it's an easy thing to open up to people about either).

    My advice based on my own experience is manage your weight, manage your stress, find a good dermatologist who is knowledgable about HSV, and avoid tight fitting underwear and clothing which is another trigger for me. Ask your dermatologist about skin care products. I have used spectro gel cleanser Over the counter in addition to topical products prescribed by dermatologist. Most important, know it can be managed and improve over time. I suffered a lot as a young girl and woman, it's better now for certain. I have so much empathy for all of you. Stay hopeful. Don't give up.

  • Wow they operated without official diagnosis that was lucky my drs have been ridiculous about even saying i have it ,even though...they have me on antibiotics go figure lol,seen dermatologist today though,hs. Inherited from my mother it'd seem,how'd you get on at your dermatologist appointment?

  • Hi curlybacks, well I saw the dermatologist who prescribed lymecycline which I took for 6 months and miraculously the HS has kept a low profile which I am over the moon about!!

    There has been a couple of small outbreaks but nothing at all like before and I'm no longer on the meds so life is GREAT!

    Hope your doing OK? 😃

  • Thats brilliant news im very pleased for you flossy im happy i have 1more label lol but not the main one im waiting on my gp recently said shes going to check over my files over the yrs i said thats great i think she thought i was being sarcastic! Lol moi lol?but eh hopfully she will findout whats causing my all over pain i just got so fedup for a while with being treated as though they think its all in your mind this new h.s diagnosis and the ultrasound for other lumps that's been growing are hopfully a positive not a negative, that dermatologist in crosshouse was brilliant i didnt hold hope for a diagnosis today necessarily but he is interested to know the other lumps he felt outcome,my 16yr old daughter was there i think his&nurses silence when they checked them worried her,her dad died 3yrs ago of massive heart attack so my health b4 that and afterwards even more so worries her,i thought he would've said its all caused by h.s and fibro maybe but just pleased im one step closer