I have HS what a relief....

[johnboy]

Hello to you all, I have just recently found this great forum and gathered some really useful information.

My title says "what a relief" I mean to know what it is wrong with me, I think I have been suffering for about 5 years with HS and I have not been diagnosed mainly due to the poor standard of my GP's I have had 2. But I have now realised it can only be HS as my symptoms and problems are 99% the same as everyone that I read about with HS.

For the past 6 months I have described my problem to my GP as chronic abcesses, that is all I can say to him they come up every other week and I go to see him and he gives me antibiotics and says nothing else can be done you are just prone to abcesses / boils / cysts.....great I think!!!!!!! Now this has been going on for about 2 years with the regular antibiotics and one time he gave me 2 lots together becuase the first lot did nothign and they made me so ill.....so I accept I am just prone to abcesses and think well I have to get on with it. Now about 6 months ago they started becoming more and more regular and larger...I have had large ones in the past that I have applied heat to myself and let them drian away but these started getting bigger and more frequent. 1 week I had 5 of them all behind each other in my right groin, 1 would "peak" then the next day the other then the other and so on, the final one was enormous, the size of an orange it is was frightening, I could not move and when it burst I was sooo happy it was such a relief and I knew that was it for now!!!!!

Since then they have become more frequent and I would say I get them maybe on average every 3 weeks to the point of disablement when they come to their peak. I started looking on the internet about abcesses and boils and what caused them and the best treatment etc and I never came across HS but i realised the antibiotics they were giving me were pretty much useless. I went to see my GP one more time for him to insist on antibiotics and I insisted NO I need you to send me to a surgeon and have this removed from under my skin .... so he refers me to a surgeon and I have my appointment next thursday 12th november with him.

Over the last few days I came across HS and realised that my symptoms and pathology are identical so what else can it be, it felt a relief to kind of know what it was instead of the worry thinking could it be cancerous etc I think I was scared of the unknown and even though it such a bad thing it seems a relief to know this is what I have. I have not been diagnosed as yet by a professional but I am sure.

I had need to go to my GP this morning after such a bad weekend...early last week something started building along my left testicle, they had always been in my groin before or along my abdominal crease but this started in my testicle, it started growing and then by about thursday was the size of a golfball and very very hard, friday there was two the same size and the agony was intense...quite frightening as it was a new area for me and I am thinking of problems they may cause in this area. So I had a terrible weekend with these 2 beauties peaking fris / sat / sunday and draining away from sunday and still leaking today. I coule not get an appointment yesterday at my GP so went this morning I wrote down HS and said to him this is what I think I have and he said maybe or maybe not you mention it to the surgeon next week as I know nothing about it....."i'll give you some anti biotics" he says. When I am leaving he gives me the paper back I wrote the HS on and I said don't you want that to look it up and he says no it is all right bye.......

So still be professionally diagnosed, I need a new GP badly, glad to be able to find this site and hopefully get some help and information from others. I am sorry for going on a bit and being a bit random in how I am writing but I did not just want to say hello....hope you don't mind.

I appreciate that I am quite lucky after reading some stories on here and other info on the internet. I consider mine to be quite chronic and it is a serious disablement at times and keeps me from work all too often but others seem to have bigger problems. Mine for now are pretty much contained to the groin area and I am praying they do go round the back!!!!! I am unsure of the likelihood but that would be my worst nightmnare and I genuinely feel for evey single person who has to suffer in that way.

Thats all for now but I will post when I feel I have anything relevant and I would love to hear from some of you lovely ladies and guys on here...

Take care of yourselves.

John

[CalamityJane]

Hi Johnboy, and welcome to SC.

My heart goes out to you for what you are going through. I hope the surgeon will be able to help, and it is very good you have done your own research so you can discuss the matter w/knowledge.

I wish you all the luck in the world, and I'm sure some of the HS people on the forum will be along with their much better advice.

Much luck to you.

Jane

[johnboy]

Hi Johnboy, and welcome to SC.

My heart goes out to you for what you are going through. I hope the surgeon will be able to help, and it is very good you have done your own research so you can discuss the matter w/knowledge.

I wish you all the luck in the world, and I'm sure some of the HS people on the forum will be along with their much better advice.

Much luck to you.

Jane

Thank you Jane your reply and show of concern it is very encouraging, it is good to talk whether advice is given or not, thank you.

It is just a relief to be able to talk or just read other peoples thoughts and experiences on HS especially when you have had this problem for years without knowing what it really is. The problem now is digesting everything pretty quickly and trying to weigh up the pros and cons of treatment etc .....before I realised what it was and found so much info on the web my intention next week with the surgeon was just to tell him to open me up and remove these abcesses and the sacks underneath....I thought that is it finished...now it seems not and I think I need to digest a lot of info to help decide.

Other people's personal experience will be invaluable to me particularly regarding surgery so I hope I will get some replies on that, I appreciate any and all comments and undertsand not everyone has the time to be on forum but it will be nice to hear from you with or without any help / advice.

Take care all

John

[gfpaperdoll]

Hi John, here is a quote from a post that a lady made to me yesterday (for support), on the forum Gluten Free and Beyond.  So please do not take offense at her words, as they were to support my efforts on the HS forums.  I do not think that she would mind me posting here to help you see another option.  Her sign on is Swuzly, she has a son with HS.  She has posted on the HS-USA forum also about her son.

"Whoo boy. The HS forums is one of the most difficult forums to post on in terms of a friendly reception. The fact that Ron Hoggan sits on the National Foundation board doesn't seem to make much difference.

I think this is in part because most people and doctors are still wired in to the thinking that gluten sensitivity is a "celiac disease" issue and the blood test for that is the only standard test.

I'm hoping that the Ford presentation makes it's way around the US several times in the next 5 years driving home the science that serum antibody tests used for celiac are not sufficient to determin gluten sensitivity.

Meanwhile back on the HS forum, you are taking a beating everytime you go there. I would sometimes get so frustrated. Those guys are willing to try every drug out there and whine about it when they don't get relief, but so very few will even consider a 6 week gluten free trial.

When Ds was dx'd 3 years ago, he had a boil that was 3.5 inches across and 1.5 inches deep.  His skin tone was truly purple. He had been in pain for as long as we could remember, but we had been told by his pediatrician it was growing pains since Ds grew on average 4 inches a year.

I had just started a GF diet. Ds's specialist told Ds: take these high powered antibiotics for 60 days, take 90 mg of zinc a day, but come back in three weeks and let me see how you are doing. If this doesn't work you'll have to register with the CDC.  So, not only are you in pain, now you're humiliated about it.  He was also told the only way his boil would heal was with surgery and a drainage sack.   

As a home trial, we put him on a GF diet for 3 weeks. When he went back to see the doc, whoa! The doc calls me in to the office, what are you doing? I've never in all my 30 yrs of practice had a patient clean up so fast. After a little GF discussion he said, I'm taking him off the antibiotic.

During our next 3 weeks before seeing the doc again, our doc met with a gastro and they both did research. They read Dangerous Grains?Ron Hoggan and by the time we went back they had also discussed the casein piece of the condition. Shortly thereafter Ds went casein free as well. His specialist began telling other patients about alternative treatments, ie a GF/CF diet because Ds's changes were significantly fast. That boil healed on it's own, no surgery on any of the boils. 

I could share this story until I am blue in the face over on that forum and they just aren't going to hear me. But I agree, if we reach one person at a time, we will make a difference and slowly this hideous condition will not be passed along generation after generation. "

[johnboy]

Thanks gfpaperdoll

I am in the period of gathering as much info as possible, wide and varied, from peoples experience and other thoughts they have. I expect some forums are difficult to use, difficult to answers etc but it is case of just trying to see.

I will consider the ladies post to you and maybe to and have a look on the other boards as I have not done so yet. For me it is important to try and get as many different views as I can, until a week ago I just wanted the surgeon to work away and get rid but now I am not so sure that will be the best solution. I am not discounting it but last week it seemed the only way and now I have seen others experience and think maybe not....

So thanks for the info, knowledge is power they say. I am a medical professional myself but totally unrelated to anything like this but I know there can be so many different viewpoints and some are not going to be right for everyone so as much research and details I can get from others will help me along my way.

Take care

John