Hidradenitis Suppurativa Book/Guide

Hey guys!

I’ve taken a short break from writing my book to write another book. I’m still getting overwhelming comments on my Hidradenitis Suppurativa posts, and I decided that I needed to get all the information and tips I have in one, easy to read — and easy to understand — format.

I hope to have this book finished and available on for download and purchase by the end of the month. I’ll be using a lot of the comments that you guys have posted over the last couple months but I need to know if you have any more questions about specific things that you want me to address.

So, here’s what I need:

1. Questions/comments/testimonials
2. I’m searching for potential names for the book. Some people I’ve talked to refer to their HS as “Bumps.” This is my working title, but if you have a better suggestion, please let me know!! The name is pretty important and I’m at a loss. The subtitle is definitely going to be: “A field guide for surviving — and overcoming — the painful condition Hidradenitis Suppurativa.”
3. Any pictures you have (or want to take) that you will let me use in the book. I can give you credit, or post them anonymously. They do NOT have to show your face. I will NEVER, EVER “out” you if you don’t want me to.
4. Lists of your triggers and reactions. Send it to me with the following subjects: 1. Known triggers, 2. Potential triggers, 3. Major Symptoms (Body Wide), incl. joint pain, endometriosis, 4. Specific Digestive symptoms, 5. Skin conditions, incl. rashes and acne, 6) Mood/Pain Level

You can either comment on this post, contact me directly by clicking on the “contact” tab in the upper right corner of this page. Anyone interested in sending pics, please let me know and I’ll send you my email address.

Thank you! I’m excited to have this book out for you to read and hopefully it will help you out a great deal.


Comments

Hidradenitis Suppurativa Book/Guide — 33 Comments

  1. I’ve read – on HIDE-USA site – that they call the nastiness “aliens”. At first I had no clue – but they are alien growths… It might help other people who haven’t found your blog to know by searching that you are a safe-haven.

  2. Worlds Ugly Little Bumpy Secret; The Painful Skin condition: Hidradenitis Suppurativa

    I have not been diagnosed, I’ve not even talked to my doctor about it.But I am convinced that I do indeed have, Hidradenitis Suppurativa I get them in 4 areas, arm pits, my breast, inner thighs and my groin. Sometimes they are painful, sometimes not. I am overweight by a lot. I am also bipolar so I have highs and lows in moods multiple times a day. I have self diagnosed IBS, I can wake up and just have diarrha that goes away as fast as it came. and this is all having had nothing to eat. :\ I also have kind of self diagnosed with PCOS. I am 19 and in the last 3 years have probably had my period less then 5 times and all times can be called more like spotting than anything.

    • Yup, you’ve got SOMETHING going on. Sounds a lot like what I was experiencing. Get yourself on a Primal diet ASAP, it will help with all those things. Thanks for the title idea.
      What about this: The Hidden Plague: A field guide to understanding, navigating and conquering the painful skin condition Hidradenitis Suppurativa
      ?

  3. I like “Hidden Plague: Conquering the painful skin condition Hidradenitis Suppurativa.” Keep it simple, concise and positive!

    I have had these horrid scars and bumps (stage 1 bordering on 2) mostly in my groin until last November, when I got a really bad one in my armpit. Before having my baby, I had never had it progress in that area. Since then all bumps below the armpits have stopped completely!

    When the infection was drained in Nov and began to scar, I got a new flare up in the other underarm (January) by April I had no underarm and was swollen so bad, I could hardly hold my baby, sleep or move. After it was lanced and drained a new one formed immediately, constantly draining and tracking scars. When that began to heal in May, the other underarm flared up and this went on until now, leaving two raspberry sized scars that occasionally get inflamed and rarely drain. As of today, some black blood came out when coaxed, but other that really mild inflammation I have had little to no symptoms for two weeks now. I cant wait to go to Canada and try to find some high grade coconut oil, and those wipes you mentioned.

    I am not sure what is working for me, but since finding your blog 2 months ago I have had drastic improvement. I began putting white diaper cream at the same time as changing my diet. My horribly abscessed underarms have become red scars that bleed occasionally. I am doing my best to eat more or less Primal and I cheat lots, but I have eliminated bread and yeast entirely, and most beans, flours, nightshades, white sugar, nitrates and am consuming lots more water, greens and clean protein free of hormones.

    I am in Mexico, so it is difficult to avoid chiles and tomatoes, & I allow one tortilla (mesa) at meal times, the occasional popsicle or small ice cream cone and I do have yoghurt smoothies to combat the antibiotics I have been taking since April (Equal to one or two small servings of dairy per day).

    I wash with a soap substitute, and use peroxide when inflamed, and witch hazel with rose water after showering. I use neosporin, fucidin and cetaphil on my skin after frequent showering, alternating between the three products. I put a soft ice pack over the area to reduce and soothe inflammation and use the pulp from Aloe leaves regularly. I allow the leaf to drain a few hours after harvest, then fillet and freeze thin slices to put directly on the sores. I am also drinking the juice diluted in water with fresh squeezed lemons first thing, before food or coffee. I think it is mainly the ice, aloe and lemon water I have mentioned that have made the difference for me, cause they are the latest introductions to my routine.

    Finally, after suffering most of my adult life, but horribly since October, I have little to no pain and no flare ups unless I abuse my diet.

    • Great tips, thanks! I’m going to include part of your story in my book, if you don’t mind. You can order stuff online, so don’t worry about waiting til you go to Canada. Take Florastor for your probiotics, the yogurt won’t do much, plus it’s dairy. O_o
      I’m so glad a change in diet has helped, keep with it and let me know how you’re doing.

  4. Hope the book is coming along well. Is using an ichthammol salve a possible remedy to include? Seems like it has not been a way to prevent, but has helped people get them to break and heal faster.

    • Thanks Texmom, the book is coming along great. I’ve been a bit delayed because of publishers (I was just going to self-publish but it seems that there is some interest in the book). Ichthammol salve is a great addition, I’ve included it. Thanks!

  5. I got my first lump last week and was diagnosed with HS. I have high quality / high resolution photos of a decent size armpit lump (2″x1″x1/2″). And an after shots of a lance & pack procedure. I am continuing the documentation until (or if) it heals. I will let you use the some pics for your book if you give me a free copy.

    • Sorry to hear about the diagnosis, but at least you now know how to beat it. :) I’ve had some decent pictures submitted already so I would have to look at yours to decide if I would use them or not. If I do, of course I will send you a copy. Send me a message through the contact form on the top right of the page so I will have your email address and please include your full name (for photo credits). When I reply, you’ll have my email address to send the pictures to. Thank you!!! :)

  6. Wow so glad I found you!! HS and Primal!! I’ve self diagnosed myself w/ HS a few years ago after a long time just not knowing. I’m very anti-western medicine and while not primal / paleo I to (try) to follow a Weston Price diet which, as you probably know, has many similarities. I have done alot over the years to manage and greatly reduce the frequency and severity of my symptoms, so much so that I really have a hard time even beginning to sort it all out. I haven’t had a chance to read all of your info but I just wanted to say thank you for existing!! :) I look forward to your book!!

  7. “Distress Flares”, “Bumps, Tunnels and Eruptions; HS Journey”, “When Skin Erupts”, “When Skin Attacks”, “Pain, Smells and Leaks”, “Volcanos in the Neather Region”…

  8. How is the book coming? I am currently in super flare up mode, and only one has come to a head so if you need pictures, I can provide. I am currently self diagnosed and working on getting diagnosis from my doctors

    • I got picked up by the best publishing company in the world (IMHO!) so it will all depend on when they want my final draft, how long editing takes and what their publishing schedule will be. It won’t be long, hang in there! :)

  9. “Secret Plague” , because so many of us keep this a secret, even from our doctors and loved ones because of fear. I have been pretty much followng primal diet for about six months, and I have seen great improvements. I do break out once and awhile, but I think it could be a combination of gluten and potatoes (and all the dextrose additives in food). I do not react to dairy, because I recently just added that back to my diet with NO problems. I do eat Trader Joe’s dark chocolate, because according to the ingredients, it does not contain anything offensive. I do not have a problem. If I stay away from gluten and potatoes (including the potato starch that is found in all gluten free products) I clear up. I’ve lost 25 lbs, and I am hoping to lose 25 lbs more. I do have scars, though. When I eat something offensive, they get redder. When I stay away from the offensive food, they start to fade. I have noticed that some of this is related to stress and my menstral cycle. Haven’t found anything to help that, but if I am strict with my diet during those times, it seem to be better. Good luck with your book. I will a buyer!

  10. Do you need any more pictures or stories? I just found your blog last night when I started to read about the link between HS which I’ve had for the last 15 years, and the paleo diet. I am so excited to try it! I have to wait for permission from my midwife who I see on tuesday because I am pregnant, but I can take pictures of sores I have right now, scarring from sores I’ve had, etc. Mine don’t *usually* get super huge, but sometimes they do. Then again, maybe I won’t have many anymore since I will be changing my diet! I am super super excited. It’s like a dirty secret I’ve hardly told anyone for the past 15 years, and now I am finally accepting it and trying to get rid of it. Thank you for the courage to share this with my friends on facebook as I just did this morning. It was so embarrassing to me previously, but I realized with all the good you did by sharing, that I shouldn’t be so tight lipped about it. Thank you!

    • Hi! I can always use more pictures. You can send them to primalgirlpower at gmail dot com along with your name (let me know if you want me to use it in the book or use a pseudonym but I need the real one for legal purposes), your age and a general area where you live. You can include a short story if you want. Congratulations on ‘coming out’ I know it’s not easy and I hope your friends are encouraging and supportive. It’s nothing to be embarrassed about so good for you! :)

  11. primalgirl-First of all, you are brave and for that, I thank you and say, I love you. I was diagnosed with HS almost 20 years ago, but back then the Dr. called it Suprativa Hydronitis. I was in his office for a pelvic exam/pap smear because I didn’t know WHAT was wrong down there, but I knew whatever it was, it couldn’t be good. About 4 days later, I was at home on the 4th of July, when the phone rang. It was my Dr. My first thought was, he’s calling me from the golf course on a freaking holiday? I panicked of course, my stomach turned, I almost fainted. He broke the news to me gently, first apologizing for calling on a holiday, but he just didn’t want to wait another day to tell me he found out I had genital herpes, and before he hung up he asked me to come to his office the next day. I fell on my knees crying and wanted to kill myself. I took to my bed and didn’t leave the house, called in sick to work for then next month. I just knew my life was over. Then, about 3 months later, I was back in his office asking for some pain meds and begging him to re-examine me, because I was sure I had another disease of some kind, but I remember thinking these sores all over me were herpes and this made me feel so dirty and worthlesss. I told him I had boils all over my thighs and bikini line. He said that he was puzzled about this Well, he examined me and told me herpes doesn’t typically display these types of sores. He did some other tests and I was relieved to find out the herpes test result was inaccurate! (It was a false positive which he explained at the time must have been triggered by the HS). Not having Herpes was wonderful news, but I still wanted to die, at least the Herpes was on the inside, sort of, but THIS crazy crap wasn’t going to go away, it could never be hidden if I ever had wanted to have sex or wear a bathing suit again. The HS was just as bad or worse than herpes or any other STD, it was so rare that it was almost unheard of back then, and eventually my Dr. figured out that I had HS. He had to do a lot of research and consult Dr’s outside of our state of Iowa to get other opinions before he felt comfortable diagnosing the condition. That was back in 1994, during the time HIV/AIDS was spreading like crazy, so was Genital Herpes, and so I was too scared to be sexually outgoing. I hadn’t been with a bunch of men, in fact, I had married at age 17 and at 23 when I divorced, had only been with my husband and one other man. STD’s scared me to death. I had already dealt with genital warts with one partner, my husband, and was told I didn’t have them. He convinced me these were NOT from an affair but could have only come from one girl, his only partner before we married. 10 years later I found out I had been affected by his “warts” and he had given me HPV. I would have KILLED him back then had I not been so naive and trusting. There are many auto immune conditions that cause symptoms that people are desperate to keep secret because of the stigmas attached to them. Skin conditions like acne were so embarrassing to us all, but to be told you have Herpes was HORRIBLY shameful back then (but then again, what STD isn’t stigmatized?) because the only STD you would be told you’d have till death were Herpes and HIV. So you can imagine the trauma of hearing this news was like being labeled GAY regardless if you were or not. Please address this at some point in your book, that the public awareness is skewed, the medical profession industry needs to be clear when talking of things like HS and Herpes and HPV too, they are SKIN CONDITIONS, and that stigmas need to change so people can get support and treatment without fear of becoming labeled, thereby getting the help they need without ending up with a complex so bad they become suicidal.

  12. Hello!
    I am super late on the scene of HS, but I have just been diagnosed and started doing some research. So far I love everything you’ve written and hope you keep writing!
    I have been suffering from “sebatious cysts” since I was 15, I will be 35 next month. Mostly I get them in my groin and on my thighs, although I have had one or two between my breasts. There have been times when they’ve completely disappeared for long periods, only to return for no reason that I could come up with, although when I started getting bikini waxes I did notice a turn for the worse. The first one showed up when I was 15, since then I have been to dermatologist after dermatologist and received the usual course of treatment; lancing, draining, cortizone shots, antibiotic pills, washes, ointments etc. Some derms have told me to stop shaving (not happening), others have said nothing other than “here’s your script”. I also had a pilonital cyst from age 15 to age 25. At age 25 it had gotten so large it came to the skin ruptured and leaked constantly. I had it lanced and packed (pulling out the packing the next day was the WORST pain I have ever felt in my life, might I add). It continued to drain for almost another year (the pain had gone away), until I decided to have the whole awful thing removed. I have also suffered from cystic acne on my face since about age 19. Sometimes it is really severe with big gross quater size things on my face. Right now it is on the calm side, thank goodness, but my face bears all the scars of battles past.
    For the past 2 years I have had one recurrent cyst that just won’t heal. It heals for a few days then swells, breaks, leaks, you know the drill…I finally had enough and went to see yet another derm at the end of January. She took one look at it, a quick view of my history (same history I’ve provided to EVERY doc, I’ve ever been too) asked a few questions, and said “I’m pretty sure you have Hidradenitis Suppurativa” to her my response was “HUH??” She repeated what she had said and told the nurse to write it down for me. She also told me there was no cure, but that I could come back in and have the sac removed, but that it may not help. I scheduled an appointment to do so, but because of $$ issues cancelled my appointment. So here I am. Now researching this disease to death because I am determined to put it in remission.
    I have been following a somewhat Paleo diet since January 2011, but have never been super strict, and about 6 months ago due to stress I just couldn’t handle I started smoking again. YUCKO, I know. I should also mention, I’ve developed two new friends in the last month or so, the one on my thigh has now grown into the size of a golfball…I’m really not a fan!
    Anyway, I found your site this past week and have been devouring every last bit of information that I can. I just want you to know how happy I am that you are out there, and that you have been so open in providing such fantastic information. I am also thankful for all the other people that have posted their stories on your blog. Even though I wouldn’t wish this on my worst enemy, it is comforting to know that other people have this condition and I am not some weird freak…I’m totally normal!! I look forward to reading more of what you have to say, I feel like I have already learned so much. I have a lot of work to do now…but I am definitely going to start with the AI Protocol diet and see where things go from there…Step 1: GIVE UP THE SMOKES. UGH!!
    Oh one last quick note…I also have PCOS. I know you mentioned they are not 100% sure of a connection, but I just thought I’d add it in.

    • Hi! Sounds like my book is going to be perfect for you. I’m glad you found me. :) Yes, the first step is to give up smoking, but do that first and don’t beat yourself up too much. If you do this in small steps, you may find it easier to handle. Do what you can now and by the time the book is out, you’ll have a foundation to stand on for the “harder” steps. :)

  13. Hello,

    Wow felt a lot better after reading your blog!!!
    I am a 30 year old female. I first noticed a cyst in the pubic area which went down after I took antibiotics. I was also given a hydrocortisone cream to apply there. The next month I saw some pimples developing there which became big and formed abscess. Also the 1st cyst that I had reappeared.I went to the gynea and she told me it was HS ,was very rude and inconsiderate and gave me a 3 week antibiotics.When I searched on the internet I freaked out completely and immediately went to see a dermatologist.By that time though all my lesions had gone down.When the dermatologist saw me he strongly believed that what I experienced might have been a case of folliculities and furuncles but not HS as HS will leave some scars when it goes and I had none,some hiperpigmentations.He asked me to come by if it recurrs again.I am at a loss now and also very worried still. Could you please throw some light on this?

    • You’ll be okay. My book is going to press mid-September, so you’ll be able to read up on preventing whatever it is that you have. :) BTW, most of my HS lesions left purple hyperpigmentation, which eventually faded. Some of the Stage II lesions left bad scars.

  14. An update! I have been using an ozone gel that is doing some miraculous work on my hs scars and preventing new ones. I can’t believe summer is almost over and I have not had a single one form, even with all the humidity/sweating. I am using “ozene” but there are many other ozonated oils for sale online. Amazing results! I don’t know how it works but it is working for me. I got mine from pureformulas.com. Again, many other places to buy and other formulations. I am also using it as a deodorant and it works very well. Hope this helps someone!

    Thanks for the tip, Cathy Jo! I’m sure this will help someone.

  15. Hi,

    What is the name of the book? I have suffered from severe acne as a teenager, and now at 31, have been diagnosed with HS. Doctors are doing tests to see if I have PCOS as well. I am tired to taking tablets for my skin. It is a horrible condition and wouldn’t wish it upon anyone

  16. Hello. How are endometriosis ad HS connected. I have been suffering badly from endo and have recently had HS come into my life (oh the joys).
    Many thanks :)

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