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Embarrassed :'( and alone

Posted , 8 users are following.

Smurfete
Smurfete

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 :''''(  

1 like, 34 replies

34 Replies

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  • donnalonsdale1
    donnalonsdale1 Smurfete

    Posted

    Hi Smurfete,

    I'm not sure If I am suffering with the same thing. 

    Around 4 months ago I developed a small hard pea size lump in mt left arm pit, It seemed to disappear within a couple of days but about a week later returned and was very tender. Over the next few days it grew and was very sore. I visited my GP who suggested it was an in growing hair and gave me antibiotics which seemed to work. One week later it happened again, this time pills didnt work and it grew to the size of a grape and ooozed pus. I thought maybe it just needed to clear out pus to heal entirely and it cleared. Then another appeared, an inch ooor so away and nothing cleared it. I had an I&D. It was terribly painful. another appeared (all in left armpit) while this one was still being packed but seemed to clear with antibiotics and have had a few that healed on their own. fast forward a month and I now have one that needed I&D 3 weeks ago and have 2 huge ones above (due to have I&D monday morning-21/10/14} medium and 1 tiny. Also now have 1 in right arm pit. I'm in agony all the time. I've had blood tests, swabs, urine samples etc all are clear. I'm at a loss, Ive been taking antibiotics for 7 weeks none stop, dihydracodiene, ibruprofen and paraceptamol. This only takes the edge off and I struggle to put my arms by my sides. I am so scared this will never subside. I have 3 children, one of which has ADHD and ASD so I need to be physically ok to deal with his meltdowns. Does this sound the same? I'm being pushed from pillow to post at the GP's surgery. I would just love to know if there is something I can do differently so I can make it stop! 

    Sorry to rant! Please help! 

  • hypercat
    hypercat Smurfete

    Posted

    Yes it does sound the same.  HS tends to develop under the armpits first.  You need to ask your doctor for a referral to a dermatologist who will diagnose the problem.  They are the experts.  In my opinion doctors know very little about it and will just mess you around with ab's.

    Get a referral asap.  You need to catch it and start proper treatment before it begins to spread (if it is HS).   If and once it does treatment is more limited.  There are lots of treatment available at this stage and you need to tackle the problem aggressively.   xx  

    • donnalonsdale1
      donnalonsdale1 hypercat

      Posted

      Thanks for response. I've been in a mess all day and it's lovely to feel like I'm not imaginine that something more can be done. The doctors I have seen are useless at best. I'm supposed to have cavity packed/dressed on Saturdays and Sundays but no district nurse has been at all. I had to ask husband to remove old dressings and clean with saline solution tokay as penriched ill get an infection since its not been tended to since Friday morning. I'm due to the docs first thing tomotrow and was told I wI'll be having another 2 I&Ds and am.scared to death rolleyes the nurse uses the metal sharp probe when dressing and its agonising sad it's so.refreshing to see a page like this and know I'm not alone.
    • hypercat
      hypercat donnalonsdale1

      Posted

      That's exactly what I thought when I first found this site Donna!  I have had no one to talk about it with for years.

      When I had cavaties done I was told to go to the hospital to get it done at weekends.  I am surprised you weren't told that.   My nurses were always gentle so tell that nurse of yours that it hurts and to go more carefully!   Or you will use the probe on her with great force.....lol

      Happy days hey?   smile  xxx

    • donnalonsdale1
      donnalonsdale1 hypercat

      Posted

      I refused to see her anymore. She was using packing twice as big as she should and when I asked her to use the plastic probe instead of the harsh metal one she was rude and sarcastic.

      I have a district nurse come to my house on Saturdays and Sundays. 

      I have been this morning to have two large absesses above the old one done and doc refused because they were too big and deep. He's cut slightly and drained and I have to go back in one week to have them joined and incised into one and then packed. I.can't imagine how long this will take sad I'm probaby still going to be dealing with this at Xmas sad but they still wont refer me to dermatologist.

    • hypercat
      hypercat donnalonsdale1

      Posted

      Well it sounds like your doctor is on the ball which is unusual in HS so keep a good hold of him!   No one at my surgery will perform surgery like this (except for 'little'  boils which don't need packing).  

      Have your asked your doctor about other treatments available?   If he knows them fine - if not tell him (don't ask) to refer you.  Just say you want a second opinion and they can't refuse you.  Good luck.

      Bev xx

       

    • donnalonsdale1
      donnalonsdale1 hypercat

      Posted

      He has told me that their are prescription only deodorants I could use when my latest outbreak has cleared and maybe something to block sweat glands. Also he has given me some hibiscrub to wash with. 

      He's a good doctor, he's a little forward but I don't mind his directness, in fact, I welcome it.

    • donnalonsdale1
      donnalonsdale1

      Posted

      Great news! I didn't need the surgery today! The doxycycline he gave me worked wonders...for now I feel human and pain free for the first time in months. I don't imagine it's not going to return but the break is much welcomed! 

  • emmauk66
    emmauk66 Smurfete

    Posted

    his smurfete 

    alfter 14yrs ive suttered from what i thought was fistula abscess/peranal abscesses ive had 4 lots of surgery  and i still keep getting re coouring lump/sboils in mt right hand side of my groin

    today ive seen a different doctor who looked the the present boil/lump i have yet again its so saw tender swloown i dont know were to put myself once i told him this has been re occuring all the time he told me i have HS i was like what is that he aid its when u get a boil/abscess in the same area that come's and goes ive never ever heard of this befre until il looked on the internet and done some reasearch and this has scared me so so much i thought i was the only person with this until i found this forum but ive used this forum for abscess as that is what ive always belived ive sufferd with i am so greatful to each and evry1 of you out there who has shared there experience with this awful illness i just wish there was a cure so we didn't have to suffer . all i thin is think posative and hopefullly 1 day we will be normal , im writing this but deep down im scared i dunt envy havin further surgery if this problem is going to continue and any advice would be greatfully appreciated please .. x  . 

    • Smurfete
      Smurfete emmauk66

      Posted

      Hi everyone, 

      Shocked to come back on here today to see so many comments. 

      It is so crazy that all of us have basically no idea what is happening with our own bodies and lack of support from doctors!

      I haven't actually found anything that helps me relieve these boils, or what triggers my flare ups.

      People have mentioned that tea tree oil for washing etc may help and anti bacterial soaps. I haven't yet tried this, but will.

      I have noticed that shaving irritates but on the other hand when I don't shave for a while that irritates too....

      Also I find squeezing is a relief but makes things more sore too!

      After 10 years I haven't found anything that helps also haven't found what triggers it.

      Has anyone tried going on the contraceptive pill to help HS, I may ask to try that after my two months on AB 

      The most logical thing that keeps poping up when I research HS is that our glands didn't form properly, maybe we just have birth defects.

      I am also very worried about this being hereditary. 

    • hypercat
      hypercat emmauk66

      Posted

      If one keeps recurring the only way to stop it is to have it incised.  I have had this done this several times and they have never come back in that area.   If there is even a little pocket of pus then they can recur though not all will.  

      The trouble is these abcesses can damage the lower levels of the skin and the pus can eventually travel between sites using the funnels in the deeper layers.   I think this is what happens when they spread like mine have. 

      A dermatologist told me the only way (apart from surgery)  to deal with them once they have spread is to tackle each individual one by incision.

      Bev x 

       

    • hypercat
      hypercat Smurfete

      Posted

      Hi please don't squeeze them as you risk spreading the infection and causing more scarring.  

      I didn't know about the glands link - that is interesting.  I shall google it.  My dermatologist told me that it is more common in smokers,  overweight people and those who have previously suffered from acne.  Well I have all 3 so there isn't much hope is there?  smile  

      I have heard that the 'nightshade'  foods like potatoes and tomatoes can trigger attacks but know very little about it.   

      A daily antibiotic might also help - but didn't me.  

      I do have some lotion on prescription called Dalycin which does help on the smaller ones so you could try that.  

      I haven't tried the pill but have heard it can work.  

      Hope I have helped a bit.

      Bev x

    • emmauk66
      emmauk66 hypercat

      Posted

      hi thanks for your reply hypercat

      im trying to aviod having any kind of surgery to this area ive has this done in the past and was climbing the walls when it was packed.ive been googling lookinf for answer's to this horrible illness i wish id found this yrs ago. im going to let the nurse look 2morrow n see if she can see these other lumps thats under my skin im prayin thats these dont appear like the 1 i hav at present . im fiinding it very uncomfortable walking n sitting , ive also just had surgery in april for a fistula in ano that hasnt healed correctly so i have a tear in the anus due to this so im on GTN ointmet to treat this , these i believe are all linked as this was found in 2004 when i had surgery and had a seton stitch put in to keep the abscess open then had the stitch removed after 4 yrs then only in 2014 this terrible pain appeard again so im having problems there aswell as in my groin hard to tell were the pain is most but 1 day im hoping to be pain free . im going to change my diet like as suggested n fingers crossed my life might be on the upward instead of feeling on the downward . thanks for your advice . 

  • emmauk66
    emmauk66 Smurfete

    Posted

    well i went to my gp yesterday and was given fluxacilan  for 1 week .i was also seen by the nurse who applied magnate sulphate paste on  a dressing n placed over the lump . this morning when i woke up i removed the dressing n presto the cream did the trick it made the abscess burst . dunt get me wrong this lump is still large n painful but no were near as bas as it was yesterday n still very tender im hopeing that it will go now as this has a drainage hole now . im going back tomorrow to see the nurse n see what she thinks the skin round the abscess is still bright red  and saw . il await n see if these antibiotics work ive also asked my gp if he will refer me to a dermotologist the confirm i have HS i do seem to have a few under my skin when ive been in the bath n washed myself i can feel them there does seem to be about 2 or 3 together in the same area. im only gettign these lumps in the right hand side of my groin were my underwear goes . these will come then go them come again . im starting to feel fed up now as ive lost  quite a lot of time off work due to these  but im pleased my emplyer is supporting me along with atos . and understand i have a underlying health problem . any help to combat these i would love to hear . 
    • hypercat
      hypercat emmauk66

      Posted

      Hi I am sorry you are in such pain and distress with these abcesses.  I  don't know of anything else that could help I'm afraid.

      But I have thought of a couple of things - I find stress a major trigger in mine and have had very few since I stopped work 5 years ago.

      A friend of mine who has HS swore by antibiotic soap,  but it didn't help me.  

      I was told by a dermatologist that rouccatine (not sure of the spelling) can help too.  This is basically a very strong acne treatment as well which can cause depression etc.  So I think of it more as a last resort.  You would have to get it on prescription though.  Good luck

      Bev x

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