Embarrassed :'( and alone

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Hello

Today after 10 years of suffering with HS and not telling anyone, not even my partner) I went to the doctors to get some help. 

I have never left the house or been in the house whilst others are here without wearing a jumper or cardigan, even in heatwaves.

I have no confidence in the bedroom side of things either. Lights of and as many clothes left on as possible. I wish I could of been a normal one!!!

Anyway I wanted to describe my HS story hoping maybe someone could share some advice and help understand whys/what's/ and hows....

10 years ago I had my first child, soon after this HS started along with bad tonsillitis (which I had never had before) tonsillitis lasted for four years then finally they let me have them removed.

Has anyone else had HS and tonsillitis start at the same time?

My son was born via c-section and I have always wondered if maybe something was triggered through the operation/recovery or even pregnancy? 

I am a smoker, but never smoked through any of my pregnancies and never seen any difference with HS and not smoking. 

Does any one find smoking makes any difference to HS?

Also my weight has been up and down for the last 10 years. From size 10 to 18 at worse. I haven't ever noticed my HS has been affected by my weight.  Have you?

HS is restricting my life so much. Like swimming with my children, the clothes I can wear, my relationship with my partner.... How have you managed to deal with/ overcome these things?

Also has anyone noticed a flare up caused by food or shower gels etc.... I am willing to try anything and everything 

What drugs worked best?

I am getting married next year and the thought of wearing a wedding dress because of HS is giving me nightmares.

I have never told or let ANYONE see me, I feel like I have some dirty condition or people may think it's an sti or contagious.

Haven't got a clue where to turn for help.

Today after plucking up the guts to go to the docs I got given this HS name and a website to read all about it along with two months of anti biotic

Where can I go from here?

Any advise please even if it could cure me for just my wedding day :''''(  

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  • Posted

    Hello Smurfete,

    Your story sounds so familiar! I have had hs for over 30 years now and it took over half of those before i was finally sent to a skin specialist to be diagnosed.

    I used to love swimming, but had to stop taking my children because my underarm skin looked so awful with alot of scarring. I  will not wear sleeveless tops, even abroad!

     I am also a smoker, but found no difference with the hs when i stopped for five years. My weight also goes up and down like a yoyo, even though my eating habits don't change!

    I was also diagnsed with Crohns disease, and strangely enough, this got much worse when i didnt smoke! (my gp did say that he thinks my crohns and hs are linked, both autoimmune)

    I have tried many different things over the years, (cutting out dairy, wheat etc.) some seem to help for a while, others make no difference.

    My husband has always known about my hs, and has always been very supportive, speak to your partner, dont let this horrible condition come between you!

    I wish i could offer some advice that would mean an instant cure, but i'm afraid i can't, i have found this site very informative and there are some products/drugs/etc

    that do help some people, it is really a case of trial and error.

    I have never had much advice from my gp, all they do is throw antibiotics at me, (although much needed on two occaisions!) so i have basically tried allsorts, and still trying.

    Sorry i couldnt be more help!

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    • Posted

      Thank you, it is very comforting to know I am not alone, before today I didn't even know there was a name for this! 

      There is no way I can talk about this to anyone, I have hidden it for so long I wouldn't know how to!! 

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  • Posted

    I know, it is a difficult subject to talk to anyone about, only my husband and children know, my children (although not little any more!) have all been a great support too, especially as twice ive had a serious infection with the 'boils' .

    You really should talk to your partner! Its a horrible thing to go through, especially on your own! 

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  • Posted

    Hi smurfete.  Like both you and diana44452 I have had this condition for a very very long time - over 40 years on and off and your story does sound familiar , eg the embarrassment and shame, hiding away, not to mention the depression etc. You will no doubt have your own reasons for not telling your partner, but do talk to someone even if it's someone anonymous just to offload. Although Most peoples partners are more understanding than you'd think. 

    Dottipants has has set up a survey on what could be causing this horrible condition which we all share.  I don't know how to post the link. 

    Ive often wondered whether it was some form of bug picked up in hospital, like MRSA.  I had my appendix out when I was 17 and the wound got badly infected. They said the infection was because I was a smoker and therefore a "bad healer".   I also used to have tonsillitis a lot but presumed I caught it off my sister who was a nurse and always coming home with inflamed tonsils. 

    I have smoked on and off for many years in the past, but I've been a non smoker for the last four years and it has made no difference whatsoever. 

    Like you,  my weight fluctuates between a 12and 18. The only difference I've noticed is that the extra weight tends to make the skin rub more against clothes. Eg under wired bras. 

    I personally wonder if certain vegetables aggravate it. I cut out tomatoes and potatoes recently from my diet and the condition calmed down. I recently had a pasta dish with red pesto (not realising it contained sun dried tomatoes) and I had a bad flare  up.  I've stopped having that now and the condition has subsided again.

    chin up, you're not alone, we are all experiencing the same.  

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    • Posted

      Thank you kaymate 

      I had a bad infection after all my operations. After getting just a spot or bruse my body is takes much much longer to heal. A simple spot caused by a flea bite took 6months to go. 

      I also did wonder about any my blood group. I am o h negative.

      Perhaps one day he might see them and ask, but until that day I couldn't. And then how can I say I have been hiding this for so many years. 

      I am not really that worried about having someone to talk to, this has helped much more knowing I'm not alone. 

      I filled out the questionnaire before I posted this question. 

      I do agree that smoking is really bad for us all, I also feel too much automatically gets blamed on smoking!!!

      Thank you both xx

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    • Posted

      Also.....

      I have been wondering today about lazer hair removal... Could this help? Has anyone ever looked in to this? 

      X

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    • Posted

      Also, forgot to say, does anyone have one boil that never goes. I have them that can last for months but evently turn in to massive deep scars. BUT I have had one boil that seems to lie dormant then all of a sudden flares up and is always the most painful stubborn one.

      Only reason I ask is, I had a friend who had worts all over her hands. She had every thing done to them but they kept coming back. One day she knocked one off and the others went too, and she hasn't had any since.

      She was told she must of knocked the "feeder" off.

      Could this be similar....

      There has to be something we are all done or have done that is causing/caused this.

      Sorry for all the information and questions but after spending 10 years trying to pretend this isn't happening I feel perhaps I should do something constructive now 

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    • Posted

      Hi when you get one which doesnt go away you need to go to the doctors with it to stop it developing into a nasty scar.  

      For ones that recur again go to your doctors and ask for a referral to a surgeon who can cut the gunk out.  I had several like this incised and they have never come back.   

      Any flares ups can be serious so always make sure you seek treatment.  Ignoring them can lead to life threatening infections such as septacemia or blood poisening.     x

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  • Posted

    Yes some of my gremlins last forever. They come up, cause a lot of pain, hang around for ages, weep a bit, then come up again. They can be like that for months at a time. Sometimes they have more than one head. I can press (rather than squeeze) where the head is, but it will come out somewhere completely different, often in two or three places.   The scarring is bad, but Not as severe as some poor souls I've seen on the internet with much worse scarring than I've got. 

    Sometimes the the swelling is not visible on the skin, but can measure approx 2 inches deep under the skin. Sometimes it breaks out, sometimes it's blind and nothing comes out, but causes intense pain. 

    Please don't apologise for all the questions. I agree with you, we must all have something in common, it looks like it's up to us to find out, because the medical profession don't seem to be interested. 😢

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    • Posted

      I experienced today that doctors cannot be asked with this.

      my doctor didn't even want to explain what HS is, ( apart from practacally uncurable) said I have chronic stage 2 HS wrote the name down and this website address. She said try two months on this prescription. See if it helps, if not there are a few more things to try before surgery can be considered! 

      Needless to say I didn't have a clue what was going on, scared by surgery and left clueless....

      I can feel the unsqueezable lumps under my skin too,

      Another thing I have troubles with is my scalp, always very itchy and scabby! Is this part of it too?

      Also have you noticed that your under arm hairs grows more than one hair at a time out of one hole? Mine do normally in twos but sometimes more. 

      I am going to try an epilator to remove my hairs for a while and see if that helps

      Also read that it is easier to treat/manage when looked at earlier... If anyone else reads this please get yours check ASAP! 

      Thanks lovely ladies, has help me loads today 

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    • Posted

      Doctors told me for years that I needed to keep clean, in other words implying I was dirty which I'm not. It wasn't until I researched on the internet that I diagnosed myself and asked to see a specialist. 

      I too have trouble with my scalp. I have lumps all over it. They're hard to describe, they're not warts, just skin lumps, not itchy though. 

      Before you you buy an epilator, can I just say that they hurt like hell. I tried it on my legs and just couldn't bear the pain. I would be loathe to try it under my arms where it's sore anyway. They're not cheap, so have a try of a friends first if you can. 

      Im 60 now so don't have a lot of hairs under my arms, but yes, I think  I've had more than one hair at a time growing out of a follicle. 

      Something else I've noticed, if I get one under my arm, I usually get one on the other side, but not in exactly the same place. Does anyone else get that?  It happens in my groin as well as under my breasts. 

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    • Posted

      Hi kaymate, yes I know what you mean! I can guarantee if I get one under one arm, or groin i'll get another the opposite side! Why I don't know !  I have to say I don't have any underarm hair, it stopped growing some years ago.

      The worst one I've had was on my stomach, it was so bad I got cellulitis and couldn't bear clothes near it at all, got no sympathy from my gp practice, just got a row for not going in sooner!  I actually had a locum once who told me there was nothing they could do about the condition and I should basically get on with it! 

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    • Posted

      Interesting you get the same thing Diana, glad it's not just me imagining it. 

      Smurfete, My my blood group us AB Positive I think.  As you're new to this, you'll no doubt see many suggestions for dealing with HS. I'd say take on board the suggestions and try them all and google it often because I live in hope that someone will find a cure for this one day. I hope it's in my lifetime. I'm sure if any professional did decide to research this, then this site would be very informative for them. 

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    • Posted

      Thanks for the advice hypercat. I know you're right and it makes sense to have them cut out, but I'm reluctant for a number of reasons. Whenever I've had an operation, I heal really badly. 

      After appendix op, I developed a huge abscess on the incision area, which was more painful than the illness itself.It took  forever to heal, leaving an even worse scar than I started off with. Same when I had gall bladder removed, I had a number of operations after that to put right a "septic stitch"  as it kept forming abscesses, the pain was incredible. Same thing happened in childbirth when they cut underneath. Same again when I had a piloninal sinus removed from the base of my spine. It's put me off going under the knife. But I do worry about septicaemia. 

      The other reason is timing. To get a doctors appointment takes over a week, they then refer to a specialist which is currently well over 8 weeks. When you finally get to see someone, you find that the abscess has gone!  So they don't quite believe it's as bad as you're making out.  

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    • Posted

      It's not gone if it is recurring regularly as there will still be a little lump there.  I had the same problem as when I went to the surgeon it had gone right down again but I just told him this is happening all the time and he went ahead and incised it under a local anaesthethic.   

      It requires very little healing and its only a very minor op so my advice to you is still go ahead and get it done.  I have had such relief from my 2 recurring ones that I am so glad they were cured.

      xx  

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