feeling so not heard

Posted , 4 users are following.

so today I saw my dr brought information on hs and explains why I think (know more like it) I have hs. Doctor reads the information and listed to me. She said I have seen hs before and then starts talking about other health issues I have a cyst so she refers me to a surgeon have appointment tomorrow. She gives me 5 days of antibiotics for the cyst and alao refers me to have blood work but never addresses my hs or refers me to a dermatologist or talks about possible treatment. Ho left feeling lost again I dont get boilds often but constantly have some kind of break out under my Brest or on my thighs or well you all know. Why won't some one help use what do I have to do to get heard to get help I was almost in tears explaining to her what I have been experiencing for years. I have read so many stories of how everyone feels they didn't get help or heard its so sad its like no one cares. I have started to try some diet changes resently on day 5 of no gluten not sugars and not nightshads it seems people with hs know more about it then the medical community and hs suffers care more I guess I need figure out how to help myself existed and frustrated right now sorry for my rambling

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  • Posted


    Firstly there is no treatment for HS. There is nothing the doctor can prescribe that will work. Ive never read about anyone being given anything from the GP that cured it. They will give you antibiotics, which wont work because HS is not caused by bacteria, they will give you creams and lotions, which wont work. There is no current treatment for HS that the doctor can prescribe to you, that I know of. I am not a doctor by the way hehe.

    You can have surgery for it, how you get this I dont know, though I have read about it. I also read that it can come back in the same area and in some cases worse than before, so theres no guarantee it will work. Would you really want chunks of your body cut away? I wouldnt. 

    The diet connect is all over the internet. On wikipedia for instance it says that HS is a suspected autoimmune disease


    If you read about Autoimmune disease (on the next link below), it then explains why others and myself included see a huge difference when they take something out of our diets. It also explains all about what an Autoimmune disease is and why it happens. I myself 100% believe it is an AI disease.


    I gave up on the GP ages ago, theres nothing she can do for me with HS, its no wonder yours didnt go on about it. It wont be that your doctor doesnt care, its just theres nothing they can do. The reason why I tried the gluten free diet was out of desperation. I did my research, and was willing to do anything. Ive been through so much pain and suffering that I would try anything. Ive changed everything I used my skin. I have also used everything I can on my skin, but nothing cured it. Ive spent £100's of potions and lotions, and nothing works in that way. I then read about someone taking gluten out, and so I tried it, and bingo.

    Now I am much better for it and for me, giving up 'real' bread and cakes is worth it and I hope it continues (touches wood). I am not effected by nightshades, its just gluten for me.

    I also dont eat much diary and sugar now though either, but not because of HS.

    Its definately worth trying it. Make sure you check out everything before you eat it, and check for hidden nasties. When you see an improvement then start to introduce things slowly back in, one at a time. Dont expect a reaction within 24 hours, its not always that fast. Go slow. Make sure you leave enough time between adding things back, otherwise you might get confused and miss what it causing the problem. When you think youve found it, take it back out and see if it subsides again. 

    Also try some Turmeric, I take capsules myself specifically for my HS. 

    I wish you good luck and I hope it works for you smile

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  • Posted

    Hi there. Not sure if I'm going to be any help but thought I'd mention my experiences. I had assesses underneath my arm pits from June to October last year. 11 in total. They were the size of grapes I'd say but the last 2 were joined and both much bigger. I spent those months in total agony and felt that it would never go away. The doctors refused to send me to a dermatologist although I'd had blood and urine samples taken and there was nothing wrong with me health wise that they could find. I had 6 operations where they cut and drained the affected areas. They packed these everyday which was horrendou. I know this doesn't help you but wanted to show that your not alone. I haven't had an outbreak since October. I use hibiscrub 5 times daily and no other products on the area. It's not nice as I'm constantly washing in it for fear of smelling back but so far so good. Have you tried the scrub? I still have the canals, I can feel them under my skin and have really horrible scarring. My advise would be to get some of this scrub. You can buy over the counter if you can't get at docs. Also ask to see a different doctor For 2nd opinion sosoon. hope you get sorted. I wouldn't wish this on anyone.
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    • Posted

      The same advice applies to you too donna - you have a right to a second opinion so make sure you TELL your doctor to refer you.   Check out the NICE guidelines (google it).  x
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  • Posted

    Hi I emphasise with you.   You need to tell the doctor (not ask) that you want to be referred to a dermatologist and it is your right.   If she won't then see another doctor.  

    A dermatologist is the expert and will be able to give you all sorts of advice on the different treatments available.   So get that referral!  x

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  • Posted

    I emailed my doctor and asked to be referred to a dermatologist. She replied that my skin is infected duh lol that she would not refer to dermatologist but to infective disease. Then said to have my blood work done to rule out other issues first. She is not even willing to think about HS this feels like a waste of time I feel like giving up on getting medical help. Sigh I'm going to do the blood work but nothing ever comes up when I do these tests and I have had Hs most of my adult life just didn't know what it was until resent. Frustrated and feeling alone. sad



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    • Posted

      Well you are not alone coz we are here and we all understand exactly what you are going through.  HS is hell isn't it?

      My thinking is at least your doctor is taking it seriously enough to refer you to a specialist for your bloods and you might even see a dermatologist there.   If after all this and nothing is found then I would see another doctor.  

      Are you in the UK?   If you are then google the NICE guidelines.   This says that you have a right to a second opinion and if you ask for this your doctor cannot turn you down.  Maybe insist is a better word.   And do it face to face as it is too easy for a doctor to turn you down by email.  

      Good luck and let us know how you get on.  x

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    • Posted

      I'm I. The USA this has been the only support group I have found online for HS. We have the same laws and I know I can get a new doctor with the health plan I have. Just frustrated and was hoping my story wasn't going to be the norm. I read story after story from people not having luck with doctors and not helping much or knowing what HS is. I hate my skin I have a guy I have been dating I dont know how tell him I can't keep putting off being physical with him he's a great guy and im sure hr will be understanding but I'm still stressed and embedded about it. And you are right you guys are here in not alone just tired of looking at my skin and crying is all. The good news is with taking gluten and sugar out I've lost 5 pounds in 2 weeks smile
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