Are my boils something else?

Posted , 5 users are following.

i was diagnosed with HS about 20 years ago. Lumps mainly flared up in groin but the last twelve months now seem to be both sides of my vagina and don't even come to a head anymore. They are dormant for a week or so then will be sore and itch. I have pea sized lumps in my groin which the doc says are just scarred tissue from previous lumps. I am concerned that these lumps are no longer linked to HS and are now something else. Doctors not interested. Have had lumps under arm and under my breast but only once. Not sure if anyone else has the same problem as me with it just confined to one area. I know I am luckier than some but it really is not a nice thing to have and I am very lucky to have such an understanding husband. 

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  • Posted

    Hi Lulu I have had HS for around 17 years though was only diagnosed around 10 years ago.   Mine all started in the top of my inner thighs and most of them were alike with a very painful pea sized lump with a small ring of red round them.   They could explode within a few days to the size of golf balls.

    By the time of my diagnosis it had already spread to my stomach with the same format.  Then a couple had matter still left in them and recurred 2/3 times a year and I got these incised and they have never come back so far.

    I was in virtual remission for around 4 years but have had 3 in very different locations in the past 5 months.   The first was on the back of my leg and this was just a lump for ages until it became infected.  The same on my stomach and my lastest one was a cyst on my back which was there for 6 months then suddenly became infected which took 2 weeks with ab's to clear up instead of the normal weeks worth of ab's. 

    The point I am making is that they seem to change format as the disease progresses and I have different types of abcesses now.   Most of them don't start anymore with the 'pea'  but with innocuous lumps which 'turn' suddenly.   I don't know if it is to do with sinus tract formations under the skin but I think it can change over time.  But it is all HS.

    I hope atticus comes in as he is very knowledgeable about HS and might be able to explain it more fully.  Bev x

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    • Posted

      Thanks for your response Bev. Mine were like golf balls in the first few years felt like a freak when was in hospital one time with them all the nurses had not seen anything like it before! That was 26 years ago. They were going to operate but I just wanted them to lance it. The specialist said that I would grow out of it as you "don't see old people with this". I am now 49 so yes maybe my lumps are just changing and hopefully one day we will all "grow out of it". I hope you are well and pain free at the moment and do hope you and everyone else on here get better soon x
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    • Posted

      Thank you Lulu.  Well I am 61 now and am still waiting to grow out of it smile

      Fortunately I only had one which required hospital treatment.  A huge one which was intensely painful  The doctor sent me to hospital and they refused to lance it as 'it would hurt too much'.   They did it under a general anaesthetic but I had to stay in for 3 days and have intravenus ab's as they couldn't get rid of all the infection.  That was around 12 years ago. 

      Have never had one like that since thank goodness. 

      This disease ain't much fun is it?   If I had a magic wand I would wish all of us cured of it.   Take care.  bev xx

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  • Posted

    Dear Lulu, I thought I would write because lately I have almost the exact same thing. I have had HS for @ 10 yrs. Normally I get abscessess in pits, arms, and both privates. I now have fistulas from them. Lately, within the last few months I have noticed small hard bumps on my vagina, inner thighs, butt, and armpits Some ooze a tiny tiny bit of puss if I squeeze hard enough, others do not come to a head at all and are like pebbles under my skin. They hurt like hell. Not as bad as when I get golf ball size or larger abscesses but still are truly painful and at times very itchy!!! SO frustrating!!!  I think they are some how related to HS. I have also noticed now that I have two similar ones on my chin. I am 47 and NEVER had acne and fear it's also HS related. I have been looking into keratin and the over porduction of it...there are quite a few links on the topic. You really may want to check into it. Best of luck to you and hope your day or even an hour is pain free! Please keep me updated!

     

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    • Posted

      Thanks tj268 I wil look into that. It's good to talk to others that have this as mostly my friends and colleagues have never heard of it and don't understand how painful it is.  I am pain free at the moment but know in a week or so it will come back! Hope you don't suffer to much and take care x
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  • Posted

    Hi Lulu - All my abcesses/boils are around my puibc area and back passage, it took around 15 years for me to be diagnosed, that was 8 years ago. Like you mine start off with an itch and then develop into red lumps which are very painful, they used to remain lumps for several days sometimes even weeks, but seem to die down a bit quicker now.  I have recently noticed there is a deifinte pattern with menstrual cycle, my HS flares up just prior to my period and them settles down towards the end, I am 52 now and I am hoping that when menopause fully kicks in that my HS will settle - I can but hope.  Certain foods, such as tomatoes and peppers also seem to cause me problems.  Good to hear you have an understanding husband, it is difficult to maintain an intimate relationship when you are in agony in that area.
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