pain & embarassment

Posted , 2 users are following.

My condition started about 15 years ago and after numerous antibiotics and lotions nothing has helped. I found that during periods of being less heavy my clothes would not be so tight and therefore the sores were less. This didn't have anything to do with my actual weight. I have tried to stop smoking, however to no avail.

During my pregnancy it was a lot less, however as soon as I gave birth it was back with a vengance. It is worse than ever now and finally my doctor has referred me to a dermatologist. A bit wary now as I'm no fan of antibiotics or surgery.

It has affected my sex life as I'm so embarassed and wearing a bikini is just not an option. Going on hols is no picknick either as I will only go to resorts with lots of privacy and therefore cost a fortune. The scarring is so bad that I am mortified that anyone will see.

The pain of the condition is one thing, but the emotional implications are just as bad. Not wanting to be naked with my husband, not being able to go swimming with my baby, the stains in your clotes and the total embarassment are just as bad as the pain.

Although I find it such a shame that so many people suffer from it, apparently it's more common than diabetes, I'm glad that I am not the only one. The most worrying thing I find is that pharmaceutical companies don't think there is any money to be made out of this condition and therefore not a lot of medication is available.

Will keep hoping for some sort of cure and hopefully my dermatologist will help. Fingers crossed!

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6 Replies

  • Posted

    hi, at the mo im layed on the sofa in total agony due the flair up that started on friday i have a lump the size of a 50p bit and solid as a rock, i too feel embarrased by my lumps and although hubby is very supportive he cant understand my reluctance to show him these lumps, they make me miserable and i fel very alone, i get very depressed when i have these flair ups which i know doesnt help, our sex life has suffered too due to yet more embarassment, most of my scars are on my inner thighs, i feel there must be a remedy to this horrendous condition somewhere or is it wishful thinking x
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  • Posted

    Oh how I know how you feel. My last flare up was 2\" by \"2 under my right arm and yes it does imobilise you and as that one opened I got another 3 smaller ones under my left arm, how did I cope, I just don't know. I do know they started about 15 years ago and was only the size of a pea and over the years have got larger. I make a habbit of taking photo's to show people because I was sick of people's ignorance and wow you should have seen their faces and yes sex life well thats hit and miss but I thank God for my partner is so understanding and well if it was'nt for him I think I would have given up. My social life has suffered, my wardrobe changed and I feel alone, it would be so nice to talk face to face with a sufferer, I would love to get people together for support. My Doc told me today I was his only patient with HS, I could'nt believe it but then I thought positive, I have something they don't have and I feel I should use it in a good way. Sorry so long like I sais my social life is zero ha ha. Take care xxx
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  • Posted

    hi scuby, well things havent changed much since last friday and so after 4 days of antibiotics it looks like yet another trip to the docs and maybe into hospital, what do we do to deserve this horrendous disease, i dont tell people whats wrong, i have done in the past and the look of disgust on their faces i shall never forget, theses flair ups make you feel dirty and you wonder if your being clean enough (of course we are) without other people making you feel unclean, so i tend to keep the pain and discomfort to myself, and of course you have the added embarassment of saying exactly where your boil is. its very comforting to come here on this site and realise that you are not actually going it alone, hope your doing ok and will let ya know outcome soon you take care best wishes angie xx
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  • Posted

    by the way scuby i noticed your location is lincolnshire i too live in lincolnshire and its me xtiggyx alias xangiex just to confuse you hahahaha xxx
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  • Posted

    I am right there with you people - I've been suffering from HS for about 6 years now - I am suffering some of the most painful lumps in the groin and since it flared up it's put a dreadful strain on my relationship. I can't even consider sex as the sores I have had just will not heal.

    I've tried long and short courses of anti-biotics, washes, potions, creams, and was even prescribed ruaccutane which I took for a long time, but which hasn't actually done much to help.

    Today, i returned to the hospital (yet again) and the person I saw was a dermatologist with a specialism in gynaecology (owing to the location of my lesions). Anyway, she has prescribed me three months worth of zinc tablets which she says is supposed to be quite effective. So I thought just in case no one had tried that, I would share that information.

    Mostly though, I really understand totally about the depression and frustration that goes with this HS malarkey. It has completely bashed my self esteem to bits and the embarrassment makes it so hard to discuss it, so it's great to find a forum of other people that you KNOW really do understand.

    Let's work together to find a cure or at least an effective remedy for this horribly life affecting disease

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  • Posted

    Hi Diamond, I to have suffered from HS on and off for the last 10 years. My most recent outbreak was at the groin area where as previously it was under my arm. Eventually after nearly 18 months of anti-biotics, weekly visits to a nurse for dressings that done very little, rarely stayed on, looked awful and which i became allergic to, i was sent to see a surgeon. While there the nurse, who was pretty shocked at the state of my thigh/groin area, gave me a barrier spray(3M Cavilon no sting barrier film) and a supply of DuoDerm Extra Thin Hydrocolloid Dressing. Now, this nurse normally worked in the burns unit of the hospital and was only helping out for the day, so for her to be shocked at my wounds lets you know just how much that area of me looked like a \"pun o mince\" so to speak! Anyway i was reffered for surgery but in the meantime i used the barrier spray and duoderm which is kind of like a second skin (you hardly even noticed the lumps BRILL), and i wanted to let you's know that not only was it far less unsightly than big white dressings it also significantly reduced my pain and the swellings and dried out the wounds. So much so that i really believe if my surgery date had not come through so quickly i think i wouldnt have needed the surgery. I had the surgery on both legs in October and so far so good. I just wanted to let you know about the duoderm and barrier spray so that you may try it if you want (cut the duoderm to just above the size of your wound).

    This combination of barrier spray and duoderm seemed so simple and the pain relief was almost instant that i wonder why my doctor or nurse never tried it! :evil:

    Hope this helps! :D

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