Newbie Hidradenitis Suppurativa sufferer looking for any help

Posted , 8 users are following.

After years and years of suffering and being given antibiotics and creams and all sorts, I took it into my own hands to research my symptoms extensively and have self diagnosed myself with HS because I fit the bill. I suffer with the disease between my legs and my buttocks (more so between my legs) and since I am new to actually even knowing what it is, I don't know where to from here. Any suggestions or tips would be greatly appreciated. I have read a lot so far and am quite despondent because there is not much success in fighting this it seems but what I can see is a bunch of people suffering the same as I am and understand exactly what i am feeling (pain, embarassment, etc.) that are willing to help each other out which is one positive. 

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  • Posted

    Hiya. I fully understand how frustraiting it is. The first thing i would suggest is stop going to the doctors about it. They give you creams tablets bodywashes and none of it helps. For me they put me on 3 different types of tablets 2 creams and a special body wash. And all i felt was unclean. I would go to your local/cheapest health food shop and get yourself some turmeric/tumeric. It is a spice and it is also a natural antinflamitry. I suggest this because it has helped me a lot and i have type 2. I was getting them constantly anf they were huge. Now i barely notice them and there only tiny when i do get them. Because the doctors dont know anything about it. They pretend they do but they dont. They will come up with all types of excuses that arent true. Best of luck to you and if you need to talk. Message me or something. Xoxo
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  • Posted

    Sorry to hear you've spent so many years without a diagnosis, but it's actually pretty typical unfortunately. I've had it since shortly after I hit puberty and wasn't officially diagnosed until almost 8 or 9 years later. This is going to be a long reply, but I will try my best to explain what you're dealing with here, and what your options are.

    HS is an autoimmune disease. It is NOT caused by a bacterial or viral infection, like MRSA. HS affects the apocrine glands beneath the skin. No one is really sure how or why, but for some reason the immune system actually attacks these areas and they become clogged and inflamed (that's what causes the bumps and pain). They are then flooded with white blood cells, the collection of which makes up that lovely puss inside the cysts. It is very common for those cysts to become infected, but the infection is NOT the primary cause. That's very important to keep in mind.

    There is NO cure for HS. That sounds very discouraging, I know, but it is possible to put your HS into remission. That means you're going to have to go out of your comfort zone a little bit, and try new things until you find one that works for you.

    The first thing you should consider is going to a dermatologist (if you live close to one that specializes in HS, that would be my first stop), to be evaluated and to give you a proper diagnosis. There really is no standard course of treatment for HS, because like I said, there's no cure and everyone responds to different treatments differently, so most dermas will recommend: antibiotic regimens, strict hygeine schedules, lotions and potions, surgery (excisions and laser treatments), and as a last resort a total and complete removal of sweat glands. If you go down the medical route, it's very important that you maintain control over your healthcare decisions. Make sure you are informed about every possible side-effect, and do not let yourself be bullied into making a decision you don't feel comfortable with. It's very easy to start feeling like a guinea pig if you don't.

    Antibiotics are actually a pretty standard treatment, not because they fight off infections, but because they're pretty powerful anti-inflammatories. For some people with HS, they work and for some they don't. Unfortunately, being on them long-term not only causes some nasty side-effects in certain people, but our bodies adapt to them and they begin to lose their effectiveness in 6-18 months.

    As for hygeine, I've never understood why they recommend it. Bleach baths are great for MRSA and other Staph infections, but as far as HS goes, doesn't do much good because as I said, it's not caused by an infection. It is however a good idea to practice good hygeine to prevent a secondary infection from developing. Having Hibiclens on-hand to clean and disinfect the affected areas is a good idea. It's a great disinfectant, but won't cause pain the way rubbing alcohol and hydrogen peroxide do. It's also a great way to kill odors caused by the cysts.

    Lotions and potions have minimal effect. Mostly because they can't treat something that takes place so far underneath the skin. Some people have had some success with acne treatments to treat the cysts themselves (salicylic acid and sulfur are the most common0, but I haven't come across anyone who has managed to use a cream or lotion to prevent them from occuring in the first place.

    Surgery is arguably the most effective medical treatment. Generally, depending on what stage you are, the doctor will go in and perform a wide excision and remove the affected tissue and any sinus tracts that have developed. This is most successful in people with Stage I and II HS, because once you hit Stage III and you have multiple sinus tracts going, it's a lot harder to find everything and remove it. And if there's even one sinus tract left, it's going to start spreading again.

    Sweat gland removal is a last resort. It's exactly what it sounds like, they go in and remove everything. It's a long and extremely painful recovery, and while some people have experienced a total remission, others have reported that the HS simply reappeared in another area on the body.

    There are also biologics you can use, like Humira, that supress the immune system. Again, people have mixed success with it, and you do have the downside of having a handicapped immune system, which means you're much more vulnerable to bacterial and viral infections. And doctors still aren't too sure what the long-term side-effects of biologics are.

    I've done about everything I listed above, with the exception of sweat gland removal and biologics. Too many years of letting doctors run rough-shod over me, has left me a little jaded as far as the medical community is concerned. And I decided that if I was going to figure this HS thing out, I was going to have to take control of my own healthcare decisions.

    In my opinion, the most important thing you can do, is try to identify a trigger something that actually causes you to breakout. A lot of people with HS, including myself, have found that diet is a HUGE trigger. The best way to determine this is by doing an elimination diet for a minimum of two months. Nightshade vegetables (tomatoes, potatoes, peppers eggplants) are my trigger and it's actually a pretty common one. Gluten is also a common trigger, as are nuts.

    Hormones can also be a trigger, especially if you find that your HS is affected by your menstrual cycle. If that's the case, I would really recommend getting a blood work-up to see what can be done about getting your hormones in balance.

    Stress is a major trigger for any autoimmune disorder, and HS is no different. So it's really important to have good outlets. Exercise is the best one, but unfortunately sometimes the pain from HS makes this difficult at best. Swimming and yoga are two things I've found to be the least traumatic and very effective.

    Wearing breathable material is important, and you might try experimenting with your laundry detergent if you haven't already. And also be super careful when you're grooming down there, ingrown hairs will just make the situation worse. So I'd recommend against shaving and either waxing or just do what I do and trim smile

    Unfortunately, it's very possible that your HS will spread to other areas, like your underarms and underboobs. I'm not saying that it will, but it is a possibility you should be aware of. So, if you're using anti-perspirant, stop. Use only deodorants that do not block your sweat glands. Sydelle is a favorite of mine, there's also Crystal deodorant and I have a friend with HS that swears by Ozone.

    Here's the deal, HS is extremely discouraging. I was full-blown Stage 3 by the time I was diagnosed, it was under my arms, in my groin, and my anal region. Left my boobs alone though smile It took me a long time to figure out what my trigger is, but once I did, I was able to put myself into remission and as long as I stay away from nightshade vegetables, I am break-out free and most importantly pain-free.

    Don't give up, take control of your health, do your research and don't be afraid to try something outside the box. I was raised by a nurse and was taught to worship at the altar of science. I was the biggest skeptic in the world when I read about doing an elimination diet, but it worked! My motto is, as long as it doesn't hurt you, it's worth trying. Make sure you have a support group, online groups like this one are great, but family or friends that will be supportive when you're HS is flaring wil be invaluable as well.

    I really hope this helped in some way. And I wish you the best of luck!!

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  • Posted

    Have HS, about 6 years. Didn't get it until mid 30's. Self diagnosed after going to ??? dematologists who couldn't tell me what I had. Got online, researched & self diagnosed myself. Then back to dematologist only to be told it'll "burn" itself out, need to go on Accutane, blah blah blah. Did it all, no nightshades, use tea tree oil, turmeric, zinc, all of it. Controlled it somewhat, but still had breakouts & of course completely changed my lifestyle. I got to the point where I had moved to "stage 2" of the disease. (More than one lesion at a time & tunneling under the skin.) Ready to do & go anywhere to make it go away. It's so painful not to mention embarrassing & gross! So back to the internet I went. Found studies of Humira being used in trials. Found a Dr in my area doing the trial, made an appointment & off I went. Didn't get into the trial, however the Dr & his staff got my insurance to approve Humira for me. Took me a hour to give myself the first shot. Very scary after reading the possible side effects! However, I also knew & have seen pics of people who've had to have skin graphs (not something I want at all!) I knew that complications from HS in stage 3 could put me in the grave too. In my mind I had nothing to loose. So I sucked it up & injected my leg with Humira. That was 15 months ago. Since then I've had one lesion. Very tiny & lasted a day. Most likely because I waited too long inbetween injections. I'm not going to lie Humira shot is 10 seconds of hell. (Can be eased with a glass of wine & or an ice pack. smile However, Humira has given me my life back & I'll choose 10 seconds of hell over days of pain from a lesion. Might be worth looking into. It certainly has changed my life & has been the closest thing to a cure for me! No ridiculous side effects for me yet. I am sometimes a little tired the next day after a shot but it's rare.

    BTW: Humira has or is very close to being FDA approved for the treatment of HS.

    Best of Luck & Well Wishes!

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    • Posted

      Jodi

      Thanks for your comments. I will be starting Humira tomorrow. I've been trying to treat this for 15 months, and I can't stand it anymore. Can't wait for the relief, but am concerned about long term sife effects. Especially concerned about traveling outside the US.

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  • Posted

    I have suffered from this for over a year and tried just about everything with no luck! Then I got some amoxycyllin from my GP and have been taking it for three months and also made up a 'paste; using sudacreme mixed with turmeric and spread it on each sore then covered each sore with a piece of fabric plaster.  Three weeks on and it has virtually disappeared! Still have the bruise marks but no pus/blood and hope these will also disappear in time.  Obviously I cannot say I am cured or that it wont come back - but fingers crossed that at least it has given me some respite from it for a while.  Turmeric obviously stains the skin but can be removed with surgical spirit - small price to pay!! Hope anyone reading this tries it and it works for you too 

     and

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