Laser Surgery in UK for HS?

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I've been suffering from HS for the last few years, I think it started in 2010/11, I am male in mid thirties. I have had various flare ups over the years both small and large in only the groin area. There have been times where it has disappeared for months but then reappeared at existing or new places. 

I have three areas which have scared and still feel like a bump is under the skin, sometimes they weep, they have been there for some time. In one area the discharge absolutely stinks (to me), which is strange as all the other areas seem to be odourless.

Over the last couple of days I have had a couple of big new flare ups which have got me searching on google about HS again and in turn typing on this forum now for the first time. Before that I have been pretty comfortable for at least 4 or 5 months with nothing major going on.

I have been to the doctor and dermatologist various times. Have also visited a surgeon when the doctor gave me the option of surgery, however the surgeon advised me not to go under the knife if they weren’t effecting me that badly as it would put me out of work for six months (not good for self-employed) as well as having the risk of them coming back 10 times worse.

I have been reading up about laser surgery, particularly an article titled “Treatment of hidradenitis suppurativa with intense pulsed light: a prospective study” where they test it on 18 people and seem to have positive results. My question, is there anywhere available in the UK for this?

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9 Replies

  • Posted

    I also have suffered from HS for many years. Mine started similar, long periods in between cysts. I get them much more frequently now. It is just as you describe. Some are just hard nodules, some become infected and flare up to a large size, leading to it either breaking open on it's own and draining, or having to be cut open. I had to have one cut open this morning. My doctor has other HS patients as well, but said she had never seen anything like it. The flesh was she said "like spongy liver."

    Anyways, this is what I have recently learned from talking to people in here. People have found out that they are allergic to Nightshades and after eliminating them from their diet, they are now in remission. I have been doing a lot of research and have started this diet eliminating nightshades about 2 weeks ago. Please check into this. I strongly believe this is the answer to getting rid of this horrible disease. This diet can be tricky. For example, potatoes are a nightshade. Potatoes come in many forms in food such as dextrose, modified food starch, yeast etc. I live in the U.S. and also have to buy organic only because our GMO or (genetically modified foods) can be very deceiving. In other words, you can think you are buying soybeans, but not know that some of the genetics from the petunia plant ( a nightshade) have been added or used in the gmo soybean.

    I like to follow the discussions in here as they have been more helpful than anything. I'm sorry I don't have information on the laser treatments being done there. Good luck and God Bless!

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  • Posted

    Hi I think surgery ie removing the affected areas is only done as a last resort when everything else has failed.   What you do need to do is get the lumpy ones incised which is done under general anaesthetic.  This will stop them weeping and recurring.  You can go straight back to work afterwards as well.  

    I have never heard of laser surgery to treat HS though it would be great.   If you find anywhere please let us now.  x

     

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  • Posted

    There are 3 solutions:

    1: Wide excision surgery removing the infected sweat glands once and for all

    I asked 1 of the private dermatologists who specialises in HS and he said this alone had a 90% cure rate and it's permanent!

    2: Get an allergy test 

    If you're allergic to any of the foods, eliminate them from your diet. (If you aren't allergic to anything then this may not be the problem). Most people think nightshades are the problem but that isn't true for everyone, it's only true for that individual. You may be allergic to gluten, dairy etc and it could be just certain foods, so it's crucial to get an allergy test done to know for sure.

    3: Laser hair removal where the hidradenitis occurs

    This alone wouldn't work though I heard since the root of the problem here are the infected sweat glands, so you'd have to remove them 1st and then get laser hair done in the end.

    Combine these 3 solutions and you might permanently be free of hidradenitis.

    Here's a list of faq's from 1 of the plastic surgeon's website who specialises in HS

    FAQ:

    1. Is HS contagious?

    The disease is not contagious.

    2. Is HS affected by diet?

    Some suffering from HS have said a change in diet helps, and many have tried the Paleo diet. However, restricting certain foods may affect people in different ways. Keeping a food diary to learn what works for you might be the best way to determine certain foods trigger an outbreak or worsening of symptoms.

    3. How do you treat patients with multiple areas affected by HS?

    We often stage treatment allowing one affected area to be surgically addressed and after a period of 8-12 weeks, address the other areas.

    4. Does HS run in families?

    In most cases, the cause of Hidradenitis Suppurativa is unknown. The condition probably results from a combination of genetic and environmental factors.

    5. What percentages of patients are cured by surgery?

    Wide excision with reconstruction of the affected areas affords the highest chance of cure, with our patients experiencing 90% cure.

    6. When is surgery an appropriate treatment?

    The decision to operate on those with HS depends on the condition of the affected areas. If there is an acute infection, the first step will be to address the infection with antibiotics as well as a first stage drainage. As the infection clears, a more definitive treatment will be necessary. In order to properly treat the HS in those areas, a wide excision needs to be performed to remove the disease bearing tissue followed by reconstruction using plastic surgery reconstructive techniques.

    7. Do overweight individuals with HS get better once they lose weight?

    When overweight patients who have HS lose weight, they seem to have fewer flare-ups. Losing excess body weight can make a difference.

    8. Why does HS smell?

    The odor comes from local infection of the apocrine glands. The odor is more pronounced when there is a flare.

    9. Is there a prescription medicine used to treat HS?

    There are many medications on the market that patients have used. The only group of medications I use in my patients is antibiotics in the setting of an infection. This is given to help treat the infection prior to definitive surgical treatment of the disease.

    10. Will shaving make my HS worse?

    This is a myth and not been shown to be an aggravating factor for HS.

    Hope this helps cheers

     

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    • Posted

      Hi that is a great post and very informative thanks.   I only have ab's for mine.  What is first stage drainage please?  Is that incising any lumps left?

      Also does this mean that we all smell even without a flare up?   Hope not.   Bev x

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  • Posted

    Hey there. 

    I've done 6 surgeries, 5 of which were radical excision of tissiue (they cut out damaged area and some nearby tissues) and 1 large incision surgery (just cutting and opening wounds). 

    I had sinuses in both armpits, groin and butt area. 

    1. Just opening the wounds most probably would not help. Mine did not, and most papers i read (i can google some medical works on the issue). 

    You need to open if there is abscess or some infection going inside and you can not clean the sinus (with chlorhexidine or h2o2).

    If they are open i was cleaning with syringe (without a needle - google it or ask a doctor - clean sinuses will smell less or infect less). 

    Smell is because of bacteria (infection) if it's smelling - there are more infection going inside. They may be of different type in different parts of body. 

    RADICAL OPERATION - when they did radical excision - it took me 2 months to recover, usually it takes something like that time. Depending on the area (in groin it is more discomforting) i used a pillow to walk with me. But you can operate when you still have open wounds actually, if you treat them correctly. 

    It also depend on SECONDARY or PRIMARY closure of the wound - one with stiches, other leave them open to heal from borders to the inside. Second is much longer, but more safe. 

    Also "risk of them coming back 10 times worse" seems strange phrase to me. How could they come worse? They take out damaged tissues and sinuses (which unfortunately, do not heal by themselves, never) and if healed correctly - you do not have infection or place for infection. 

    There are chances your body might have new ones in other areas, but still - as for me - i waited for radical surgery too long time, and while waiting and trying other stuff, the area became bigger. 

    After 1-2 years - surgery was good idea.

    About laser - check HS Institute website - it's in US, but try to call them and ask for references in UK. As well some major hospitals might do that. You need to search through them as well, calling, asking. There is special type of surgery for pus and infection - purulent surgery - you should check for them. 

     

    P.s.most of my doctors said that there is not that much difference between operating knife and laser - it's what one doctor prefer mostly. 

    Good luck and be strong

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    • Posted

      Hi

      From what I have read and seen mine are not as bad as others, and I do feel for you. Although there is a very small opening on a couple there is no way I can get anything inside (I haven't tried!), it seems a small hole has formed but just underneath it has sealed it self.

      This is what worries me, for not being able to get out and about for two months or more as well as be in serious pain if I go down the radical surgery route. However I do have them covering a large area now, they seem to be opposite each other. I have one on each inner leg just where it joins the groin, these are quite flat now although I can still feel they are there and on occassions they weep small amounts  pus/blood. One on each side of the groin area, the right side has appeared this week, the left one is the one that has the bacteria infection. And finally three on the lower side of my groin, two of these have come this week.

      I am hoping to sort the diet again and keep these at bay.

      I will do the research as you say, thank you very much for that info as well as everything else. 

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  • Posted

    Thanks for all the replies and info. I have tried elimanting the nightshades before with no luck. I have had a fair bit of sugary foods such as cakes and fastfood from take aways which has triggered this. Don't usually do this however there has been quite a few family get togethers.

    I will speak to the doctor again about incision rather than the full on surgery if it only mean little time out.

    Thanks for the good overiew Jason, I will definetly get an allergy test done. I am not overweight, I do smoke but I gave up for around 5 months and there was no change, started the stupid things again!

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    • Posted

      "I have had a fair bit of sugary foods such as cakes and fastfood from take aways which has triggered this. Don't usually do this however there has been quite a few family get togethers"

      In that last week which has triggered this lot!

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    • Posted

      Insicion is enough actually, if there is no sinus. In that case it is important to carry the wound open and cut wide enough not to let it heal from the upside down. It should heal from the bottom upwards, and you need to put something inside (a tissue with antibiotics cream or chlorhexidine). That might work - it's a piece of cake, but be super strict with discipline in carying the wound. 

      Best of luck. smile 

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