I thought i was alone

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I am aged 56yrs and have had H.S for about 20+years. at the start i had my lymth modes and my sweat glands removed surgiclly[i cant spell] due to absesess under my arms.that was very succsessful.But i then had to have most of my breasts removed because of very deep rooted absesses in my breasts. Istill get problems in my breasts but not so much as before.The rest of my body is a disastar area,in my groin,top of my legs under my tummy and many other places,the smell sometimes is horrific but you have to live with it i thought i was alone but there is worse storys than me .You have to keep on smile ing and make this condition not important and put it behind in your thoughts.i wish all you H.S sufferess the best and hope any treatment you have is succsessful .

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  • Posted

    Hi margaretann

    i am not sure what you mean. did you find that having your lymph glands and sweat glands stopped hs in your armpits?

    would you recommend this surgery to others who are starting out with early symptoms of hs?

    do you think that having these glands removed in that area may have just moved the problem elsewhere?

    [b:df377d3222]have you had tests for allergys to wheat,gluten,eggs,dairy and your androgen/hormone levels checked?[/b:df377d3222]

    sorry for all the questions but my daughter may be in early stages of hs and i am trying to gather as much info to help her before the symptoms worsen. the tests i am asking about are because i keep coming across references to problems in these areas.

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  • Posted

    Hi Simone i will try to answer your questions as best i can.When i first contacted hs it was under my arms only which after months of suffering i had surgery and had my lymph modes and sweat glands removed which give me so much relief for at least 5years until abbsesses returned in that area but i have to say nothing to the extent that i had suffered previously so yes i would say it was worth it. Then after approx 6years i developed very severe hs under my breasts i then went on to suffer this terrible condition for about 2years approx 7years after sweat glands opp. i had surgery under my breasts ,but nothing prepared me for the outcome, i had to have a large amount of breast tissue removed as the abbsesses were so deep rooted it took a lot to remove all of them out my system i was a DD and went down to approx B in size. So to date i only get the occasionaly absesses under my arms and under my breasts So i would say it was worth it in the long run i still have this condition in these parts but nothing to what i had.Now for the last 15years i have hs under my tummy, in my groin top of my legs and olso on my private parts,i could get surgery for under my tummy but have been told i have to lose weight but as i am disabled im not very active so weight is just not comming off. The answer to your last question no i have not been tested for dairy products and hormone levels that i think will be my next thing i try. Now in all this i have to say not everyone takes this to the extent that i have because remember my first surgery was succsessful. luck could have been i or indeed your daughter would not go on to develope it any further. But i would olso say that having my surgery in one area did not make another area worse in answer to your last question. Well Simone i hope this has answered some of your questions and hope this has not sickened you as i just said it as it was,but as i said everyone is different and another person might not take this skin condition as bad as i did .Let me know how you get on MARGARETANN
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  • Posted

    Hi margaretann

    thank you for your reply, it did help. all information shared is valuable. i believe dermatologists are also reading so as well as informing each other the dermatologists are also learning!

    dont worry about me being sickened. my ex husband is stage 3 and follows an extremely unhealthy lifestyle. i think you are great for posting your experiences and in doing so will help your self and others.

    i believe in being pro active.

    my daughter is worried about the possible genetic factor. i dont have hs but am information gathering as i have 3 children and also am worried about the genetic possibility.

    my daughter has recently been told by her GP she dosent need to see a dermatologist as she only has ingrown hairs.

    she is not going to shave/wax etc to see if that helps to reduce the inflammation of 'ingrowing hairs' but we are all aware of people who have been told they have ingrown hairs when they have early stage hs.

    she has already had creams from the doctors to heal her ingrowing hairs. the inflammation is still there several months later. we are hoping no hair removal will stop the problem.

    in the meantime i will keep reading up as cross referring from different sites may help some one.

    i wish you well with your weight loss.

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  • Posted

    Hi Simone thank you for taking the time to read my experience. There is one other thing i forgot to mention, although hs is not caused by poor hygene, i find if im on the go all day and i allow under my tummy to get to sweaty[i told you i cant spell] it starts to get smelly and before i know it i have developed several absesses under my tummy which go on to full blown absesses and take so long to heal. i avoid this as often as i can by washing under my tummy several times a day ,keeping it clean and more important keeping it dry so by doing so keeps the infection down ,i have often stoped an absess in it tracks by doing this.some people use on clean dry areas [talc,keeping it dry all day long and vaselene works for me by applying to clean dry skin ,as it waterproofs the area resulting in it been kept clean all day long.this may sound stupid to some people but i find it helps me. I would say any barrier cream would work the same way. its hard vwork keeping on top of it but worth a try MARGARETANN smile
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  • Posted

    hi margaretann

    i have read several people saying that works for them too. it's great to find something that keeps the person in control.

    seems to be that sweat aggravates the issue, wonder if theres something in the sweat?

    we all know about sweat rash and how nasty that can be! i dont have hs but clothes rubbing in sweaty areas will cause a nasty rash.

    there just seems to be so many questions with hs.

    as long as money and time are ploughed into research the boffins will get to the borrom of this eventually.....hopefully not too far away!!

    daughter has paid for laser hair removal so fingers crossed also trying turmeric and zinc. she is not too bad we are looking at prevention at this time. and reading up and cross referencing hs sites so that the boffins might read something that may start an investigation........from little acorns mighty oaks bloom.........wishing you well.

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  • Posted

    Hi Simone been thinking of you have you found anything else that might help your daughter? it would be good to hear some good news,because it seems to be all doom and gloom just now,im having a terrible flare up just now and starting to feel sorry for myself if you have any news pass it on i think myself and others would like to hear about them ,,,margaretann
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