Hidradenitis Suppurativa - What Have You Tried And Worked?
Jan 20, 2015
Today I went to see a new dermatologist, I live in the uk near london and this was my first proper appointment with a dermatologist..
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I have suffered for about 10 years only to find out last year what I actually suffered with.
I spoke to the man today, took pills and creams that I had been using.. These pills are basically vitamin pills with a bit more in which I have found helped me with my facial skin as my hs is all over my body, but mostly in the groin/armpit and top of my buttocks.
I asked him about diets, turmeric, intolerance testing, blood tests and he shot me down at all points laughing saying it's all rubbish and here's an information leaflet of what you have.. I am fully aware of what I have, I suffer with it daily thank you..
By looking at a lot of people on here it's mainly from the US, is there anyone here that's from the uk? What have you tried? And has it worked?
I broke down in the car park when I left, just felt useless and the person that I am going to for help has just laughed at me!!
He has put me on a 6 weeks course of minocycline anyone had these?
With the intent on keeping me on these if my situation gets better..
I just feel so useless.. I know we're all in the same boat and I just hope that there is light at the end of the tunnel.
I have had HS for around 15 years now. Fortunately even though I am in stage 2 it is not that bad now and seems to be tailing off somewhat. Maybe it's my age - 61 but I am grateful.
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However my last 2 bad ones have been different to the rest and I wondered if it is because the disease changes a bit in time or it is just random.
My one before last attacked a big cyst I had on my back for ages. It was no problem for about a year until suddenly it became big and infected. It didn't heal like they usually do on ab's and instead of ab's kicking in within a couple of days it took 2 courses to clear it. It also left a crusty lump behind.
The last one was on the side of my leg. This too took around 10 days of ab't to heal the infection. Now it is just a lump which won't go. It didn't drain at all and won't..
Does anyone have an answers and advice for me please? The ab's have always worked before within a couple of days. Unfortunately I can't take penicillin and erythromycin doesn't work. I usually take doxycycline.
I'm 22 years old. But i feel like I'm older. Last year they diagnosed me with hs. I had out way before that but never got it treated because i was embarrassed. I have it everywhere. I have open wounds in both armpits. I have some in the back of neck, groin and under breast. They are extremely painful. I don't even go out anymore because i tend to start smell bad due to my armpit lesions. I've also have a lymph node on the side of my neck that is worries me. Idk if it due to the open wounds that i have in my neck. I'm so embarrassed to go to the doctor again. But i see no way out. My primary doctor is useless he doesn't know about this and just send me to the ER. I'm so depressed i don't know what i can do. This wounds won't heals.
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I have had Hidradenitis Suppurativa since I was 15 I am 23 now and I have had a boil everywhere but I let go of beef and night shades and it has gotten better 2 years free but I still get have hard lumps under my armpit that drain and inflame sometimes my question is is that normal does boil still remain and is hard and drain sometime mostly around my period
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I'm 25 years old and just recently been diagnosed with HS, although I've had the condition for 5 years without knowing. My GP attempted has to diagnose me for the past year or so & eventually referred me to a dermatologist. I suffer from HS on my groin and vulval area (which is highly embarrassing alone) to be quite honest my lady parts do not look attractive and cannot see myself being able to enter a relationship due to this condition which is getting me down. I don't have the confidence to get naked infront of anyone or see anyone even wanting to have sex with me again. I've been single for 4 years and dating is hard enough when all parts of you are normal. How do you tell someone you have this horrific condition? I've only had sex which in hindsight was my remission periods. However I was seeing someone and did tell him that i had this condition which he was really sweet and understanding about & didn't change towards me at all. Saying that I did sleep with him (lights off and and in a position with reduced visibility) after that he decided to stop seeing me with no explanation. I feel like I looked that repulsing that he wouldn't want to touch me again.
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Anyway that has been a horrible experience and shattered the smallest amount of confidence I had left. This isn't an experience I want to repeat. My condition has worsened over time, I'm going to be on medication for 3 months but have been told that it may not work and I could be on medication for years trying to manage this.
I feel like I may not have the opportunity to have sex again, never be in a relationship or even marry for that matter.
I get this is something that I have to just live with, just need to get my head around this. I've read stories about people developing HS whilst already being in a loving committed relationship but no positive story on meeting someone new?
so i guess dating is something that is over in my life? Just hoping there is someone out there who can put a little bit of faith back into my soul, because right now it just seems all gloom and doom from here.
It started when I was 17. I got a huge painful lump in my vagina near the opening. I went to the emergency room. The doc said I had herpes and sent me home. I got the same lump a few times a month. It would drain and come right back. A few years later they started in both armpits. Huge lumps that drained, took forever to heal and left track like scarring. These days the lumps, boils or whatever are mainly located on my vagina. Two outside, two inside. They are very painful, red, drain and come back. Ive had antibiotics but it doesn't seem to help. I have 3 children and have been tested for every std. My youngest is just 2mos old. All tests are negative. Its not herpes.
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I have had this skin condition for over 20 years. Like others afflicted, it affects me everyday of my life. I have also suffered a lot of joint pain since my early 20's and it is getting much worse. Lower back pain with a lot of popping. My hips feel very stiff after being at rest for a short amount of time. I also have lots of pain in my elbows. I read online that the two can be linked?? Anyone else with this problem? I also read that hidradenitis suppurativa is also common or linked with Crohn's Disease and IBS. I don't have those, but do have Diverticulosis throughout my entire large intestine.
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Hi all! I'm currently 26 years old and I suffered from facial acne when I was in my late teens for which I was prescribed Roaccutane which proved successful. Everything then went quiet for a while and I enjoyed having relatively flawless skin.
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When I was at the tail end of 22 I started getting boil like lumps under my breasts which would sometimes burst with nasty yellow pus inside. Sometimes I couldn't help but squeeze and would do so until they bled (bad I know!). As a result I have been left with terrible scarring.
Just before I turned 23 I moved to Dubai for a 2 1/2 year stint where the boils continued to get worse and spread to my inner thighs, down my sides where bra straps go round the body and even sprouted up on my bum cheeks. I attended a Russian dermatologist while in UAE and was told it was because I favoured shaving as hair removal and should consider laser hair removal (funnily enough a service she provided). Other doctors blamed my weight as I am obese but I found this to be an easy answer for them.
When I returned to the UK I went straight to my GP who then referred me onto the local hospitals dermatology unit. I was put on another course of Roaccutane - which I am supposed to still be taking but I stopped as the side effects became unbearable for me with absolutely no improvement. The doctor has confirmed I have Hidradenitis Suppurativa and said when I go back on 29th December he will change me over to a drug called Dapsone which is regularly used to treat leprosy. Has anyone else with this condition taken this drug, if so was it successful? If not what do you take that you find helps? I'm losing the will with doctors at the moment. When I attend on a monthly basis they don't even look at the current state of my body to assess if it's improving or not, they just take my word for it. I also feel I'm doing a lot of research into conditions and treatments myself whereas they suggest nothing.
I am in a new relationship with someone who has had Hidradenitis Suppurativa for the past 10 years. Due to the severity of this condition in the past , he was fitted over a year ago with a colostomy bag, the doctor suggest this is a perm bag? if this condition is controlled can this be reversed? ( he is only 27)we no this condition is very hard to control, he has just started a new antibiotic and believes it is starting to work, he also has chemo once a month to try and put this into remission...
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I have Hidradenitis suppurativa and have suffered for many years with it I was reading a magazine the other day and this woman was suffering from mrsa infection and a young women went to see her in hospital because she was dying from this infection but this woman brought her some copper pj's and she wore them and they cleared her infection up and saved her life I have gone on a website and researched these copper things and they help with infections I have ordered some pj's and some knickers too see if they actually do help because as many people know anybody would try anything with this condition. I thought i'd share with you all.
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I am 18 and in high school and have had HS for 5 years. It's gotten worse in the last few months and the drainage stinks and no matter what I do, I smell it and I'm worried my classmates do too. I clean the drainage with soapy antibacterial soap and shaved the area (I know you're not supposed to but I feel like whatever drains sticks to the hair and stays there). It's still pretty bad and now it hurts to lift my arm because my armpit is open and draining. My doctor doesn't want to give me a referral to a dermatologist, she thinks taking me off of the depo shot will help with weight loss and in turn it'll go down. It's stressful, I want to finish my senior year in peace but I can't because I have constant anxiety that my classmates smell my drainage and my arm hurts so bad.
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I have had HS for eleven years and it is getting worse and worse and worse. I just don't know what to do anymore. I am under the care of Dermatology and I am on long term antibiotics as well as a cream which i apply nightly. I don't use anything scented, deodorant, bath smellies or shower gels. Non bio washing powers are what my clothes are cleaned in. I currently have a huge boil under my right arm and i cant move the arm upwards and its hard to sleep. Can anyone help with something else i can try or some other home remedy?
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I have a skin condition called hidradenitis suppurativa. I had 3 abscesses come up in my groin that were the size of a fist and had 6 operations within a few months. I was clear around 3 years and was told that I had recurring abscesses. Jan 2012 I have a another large abscess come up and had another 10 or more. This resulted in a further 3 operations. I finally was told that I did infact have hidradenitis suppurativa. Recently I have a smaller abscess that keeps on coming up and leaking then going down and coming back up. I am also experiencing severe pain in my groin. its like a hot poker and it is constant and radiates down my thigh. I have also bumps under the skin that are very small but painful and hot to touch. I don't have any abscess now just this pain.
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I have been suffering with this nasty condition for about 12 years , mainly under my breasts but i do have the odd few in my groin and top of legs , i was only given a name this week of the condition as i always thought they were just normal abscess or boils i have large breasts and since having children they are not as pert as they used to be so droopy is the word im prob looking for i just wondered if many ladies suffer on the breasts i have never (touch wood) had one in my armpit i do have one at the moment just under my nipple in the areola area of the breast and am on a 10 day course of antibiotics.
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Just had my recent abscess drained and have walked out of the hospital today. I have suffered with abscess for at least 12 years. I never even knew this this disease existed until yesterday when the doctor at the hospital told me what it was. I had always been told by doctors that it just one of these things I am prone to.. So upset that it hasn't been picked up on before. I'm hoping to be referred to a dermatologist, has anyone else been referred??
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The doctor told me that it can be helped with a long term course of pills as this disease is with us for the rest of our lives (we lucky people). Can we get a Nhs exemption card?? I am completely in the dark. After spending so much money through the years on washes, pills, bandages, creams, solutions and paste. Feel frustrated but relieved that I have a little light at the end of the tunnel.
I was diagnosed with HS around 8 years ago but have had it for years. I am lucky because a friend suffers from it and said it looks the same. I asked for an appointment with a dermatologist who confirmed it.
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Mine started on my upper inner legs, spread to my stomach and I now have a new one on my upper arm. I am concerned that it is spreading and wonder if anyone has any advice please. They are so painful and debilitating. All the doctor does is give me antibiotics and a couple of times has referred me to have recurring ones cut out by local anaesthetic. The surgeon said that because it has spread all he could do is tackle them one at a time. He did mutter about plastic surgery but really don't want that.
I'm 26 and have suffered with acne since i was 13/14 been on and off different tablets since to clear it up. I am on my second course in 5 years on isotretinoin which has been doubled to 80mg a day now. My dermatologist told me it sounds like HS i have around my groin and inner thigh area and the tablets i am taking will help. After reading basically everywhere they won't i have decided to look around and speak to others to see what i can do to help. From reading others i have noticed it started a few years ago when i got boils under my armpits and after finding nivea for men with no alcohol and with minerals it controls it, if i use anything else it flares up. Now I get them nearly every week on my thigh and lately on my groin which is horrible and pops puss's and bleeds. I got some antibiotics for it and now 3 weeks later it has flared back up again. I suffer from stiff legs when get up and move so this doesn't help as it is very uncomfortable to walk. I work in a local retail shop so I'm on my feet everyday. I have joined the gym but find it hard to go because of the pain I can be in.
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Just enquiring how many people on here smoke, i've had hs for 10 years now and my doc has said stopping smoking will help i've cut down a lot gone from 20 - 25 a day to 10 which is great for my health i will eventually stop but i just want to know is it related to this condition because these days i can go drs wiv my leg falling off and he would say stopping smoking.
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I have suffered with HS for 5 years (self diagnosed) I currently have a sinus tract in my inner thigh/groin which drains off and on, and a harder cyst type lump in my armpit.
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I have eliminated all night shades from my diet, reduced weight (I'm not overweight anyway) and I take turmeric twice daily with zinc, plus wash with antibiotic soaps and I am prescribed lymecycline AB's and have peroxide cream. It controls my thoughts, my mobility, my sex life and my work/social life. I've been depressed in the past and I can feel myself going back there.
Admittedly I am an occasional smoker and have always battled with this, I continue to seek ways in which to stop as I know there is a link between smoking and HS,
I now have a vape pen e cig. Doctor's class people as non smokers if they convert to these, but will this be the case with HS?
Is it the nicotine or the other harmful ingredients in tobacco that trigger HS? As I know tobacco is a nightshade.
I am on the waiting list to see a dermatologist but don't hold out much hope judging by others experiences.
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.
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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?
I am 19 years old and have dealt with Hidradenitis suppurativa for as long as I remember, it started off not too bad but as countless doctors visits failed me it soon got a lot worse. I cannot explain how low I am feeling right now, I turned to this group for support and I am usually quite a private person. I feel as though I've hit rock bottom, I've just been sent home from work with a gaping hole under my breast which has been causing me agony for the last few months. It's refusing to heal, I've been able to cope with it until now but the pain has reached a new level. I know you're thinking, why hasn't she been to the doctors? I am embarrassed, I feel ashamed of who I am and this horrible thing I have, I had antibiotics before and they never worked so I just feel like everything is pointless. I feel like giving up, after endless tears and years of self hate which has now got so bad I can barely look at myself in the mirror without my clothes on. HS has ruined my life and continues to do so, I feel as though it is destroying me and all I can do is watch, in pain constantly. I don't know where to turn or what to do next I am completely clueless! I started to enjoy swimming again a few months back, I can no longer go due to open wounds. I feel like everything is spiralling out of control and I just can't stop it. I am on targets for sickness at work and fear I will lose my job. This is really a cry for help, if anyone knows anything that could help me I am willing to try it, I can't go on like this much longer, it's tearing me apart!
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