Any other Hidradenitis Suppurativa sufferers out there?

SarahMarie78

I've had it for years also. Finally trying to see what diet changes/ supplements and weight loss can do to help.

sunrhino

Hello!

I was diagnosed about a year ago. I remember starting to get these small lumps periodically after a bad skin infection when I was 15. Usually they were very infrequent. Then, I got pregnant and started getting the lumps a lot more frequently. Even now, years after my pregnancy and child's birth, I get them. They also seem to be progressively getting larger. When I first started getting them they were like pimples, then pea sized pimples, and now late marble sized. Also, they used to drain themselves and heal, but now usually they don't and are too deep under the skin. I have little purple scars all over the bottom of my butt cheeks. Finally, I was fed up. Exercise was what my doctor told me to do in order to lose weight (I have a terrible time wih weight) and that seriously aggravates my condition. Finally, I saw where laser hair removal had put this woman's hidra into remission for 10 years and counting. So, last year I decided to have laser hair removal on my underarms. (6 treatments) Since then, I have had one very small lump in the crease of my arm (where the laser didn't hit) in one whole year. Otherwise, I have been lump free in that area for over a year! (I was getting 3 to 6 per month) However, I still get them on my growing. But, I just started laser hair removal there also about 1 month ago and so far no bumps have occurred!! I am over the moon. It may not be totally permanent, but I am willing to save my money and treat again if need be because it has helped so much. Here's to hoping it continues to work. I just wanted to share this because I hope that it will help someone else out there with this disease also. I follow the DASH diet, and when I do I have a reduction in lumps. I also shower immediately after exercise or sweating. My lumps seem to also be related to hormones and stress (always worse at period time) so maybe birth control would help a few? (I can't tolerate it) But I am so glad that more of us are talking about this!

AceyFace87

I feel like crying right now! I thought that I was some sort of martian with a strange skin condition! I have been affected by this terrible condition since I was twelve years old. (I am currently 3 weeks away from being 21). For almost nine years now I have been hiding this problem from everyone I know. I only recently told my mom... yes, I waited nine years to tell my own mother! I have not visited with a dermatologist. I am too embarrassed... I am pretty certain that my problem is due to obesity and high levels of sugar intake. I got them around the time I went through puberty and then my weight began to rise. They seemed to get worse and worse as I gained weight. I am going to try a low carb diet and a multivitamin to see if that will help at all. If that doesn't seem to help then I will definitely suck it up and go see a specialist. It's disheartening to know that there is no cure but I have high hopes that there will be more assistance for this disease in the future due to its growing awareness!

noiradle

I've had this for over 10 years now. I have literally hundreds of ugly scars from it. Things have been improving slowly though, at least. The problem areas have moved around a lot over the years, it's mainly in my left armpit now.

I've improved my diet a lot lately and don't take in much sugar anymore. I'm also not as sedentary as I once was and have even gotten into bodybuilding recently. I've kept this manageable with antibiotics which I recently dropped, so I'm a bit worried of how my body is going to react when they get flushed out of my system over the next few weeks. Maybe my healthier lifestyle will help?

I'm a guy so menopause isn't happening. I really hope we have some kind of equivalent down the road where this disease just facks right off. I think I may look forward to getting older then!

Stay strong everyone, and keep shedding them pounds.

noiradle

I feel like crying right now! I thought that I was some sort of martian with a strange skin condition! I have been affected by this terrible condition since I was twelve years old. (I am currently 3 weeks away from being 21). For almost nine years now I have been hiding this problem from everyone I know. I only recently told my mom... yes, I waited nine years to tell my own mother! I have not visited with a dermatologist. I am too embarrassed... I am pretty certain that my problem is due to obesity and high levels of sugar intake. I got them around the time I went through puberty and then my weight began to rise. They seemed to get worse and worse as I gained weight. I am going to try a low carb diet and a multivitamin to see if that will help at all. If that doesn't seem to help then I will definitely suck it up and go see a specialist. It's disheartening to know that there is no cure but I have high hopes that there will be more assistance for this disease in the future due to its growing awareness!

Honestly, losing weight might just help this disease more than a specialist ever could.

Still though, it's good to have one on your side. Let me tell you, I lived in your same exact shoes. I didn't tell my mom for a long, long time and I avoided doctors like a plague. When I eventually went, I felt silly for holding it off for so long. HS isn't as uncommon as it was back when you first got it -- you're not going to impress them. They're not going to look at you wide-eyed in amazement. They've seen it before. A lot. And probably worse cases.

wjh419

I'm a fellow sufferer. Have been for about 11 years. I've had antibiotics (they don't help and doxycycline makes me sick), tried clyndamycine gel and that helped some, but not much. Had them cut out and had a panic attack afterwards. It was the worst thing I've had done, and I have been through a lot. I can't exercise because I get debilitating outbreaks when I do. I feel so lost.

Aevie13

Hi I just found out I have this horrible disease in addition to psoriasis. I'm beside myself with crying and being stressed out & can't sleep. I plan on trying turmeric & zinc. I'm currently having a flare with 3 spots in groin area. Has anyone recently tried hair removal laser treatment for groin & armpits with lasting results? I also sweat when upset.

Healinghs

Hey everybody! I just found this site. I feel for each and everyone of you. Mine started at 14 and was on my back pretty much exclusively. Doctors gave me accutane and it was gone in 6 months. It came back when I was 31 in my armpits. . I've just recently been able to control it. Not a cure but at least not be in so much pain all the time. I started a website last month to try and put everything I've learned in one place to help others. Check it out if you have time. I hope I can at least help someone.

The site is: www.healinghs.com

~Kelli

slankapa

KATAKA, do you have the information regarding the clinical trail for HS in maryland. I am very interested! Please let me know!

ShalahnHall

Hello all,

I have HS also. I actually just had my 4th surgery on December 20th. I have it pretty much just in my armpit. I remember the first time I got it I was soo embarrassed because I thought that it meant I was dirty. I remember my doctor telling me that I couldn’t shave or wear any deodorant with antiperspirant in it. I was devastated. I was almost 21 and was excited to go out on the town for the first time, which I did, however, I was so embarrassed I wore a long sleeve button up shirt. I love my tank tops and always have so I was very sad when I couldn’t shave.

I have been back and forth with my surgeon and we believe I will have to have another surgery on my other arm soon. However, I did ask that we hold off as much as possible since I was just recovering from the last one and had gotten off track on my weight loss. The worse part is that I can’t workout when I have flare ups. I am on doxycycline every day (yes sometimes I forget).

I’m really glad I found this thread. I was surprised to see how many other people have the same issue.

criscricket

One thing that REALLY helped me was cutting out refined sugar. If i HAD to sweeten something like my tea i would only use raw sugar. I haven't had a boil in my arm for about a month now. I kinda caved in at some point and started drinking a lot of kool-aid that had a lot of white sugar in it, after that i got a really bad boil on my groin so im guessing that it definitley had to do with the sugar. Im gonna try a detox tea this week because i heard that can really help to.

I was diagnosed over 22 years ago and I also "quit" sugar and refined carbs about 12-15 years ago. I have been in remission since. I have flare ups when I consume to much processed/sugary food, I have recently gone gluten free as well. (almost two months) for other health reasons.

Exercise also helps and keeping my blood sugar stable in general.

Poowa58

I have had this condition for over 40 years and it has made my life a nightmare at times. This is the first time I've seen a link between the disease and nightshades. OMgosh, if only this will work.

BonnieGertz

I think I have this too...can't wait till I have more time to go through all these posts..

rebeccaleec

I haven't been diagnosed formally, but I am positive this is what I have. And now I am realizing I have had it since high school! (almost 8 years) It started on my inner thighs, then moved to around my areolas (mortifying, still have the scars today), and now it's under my armpits. So glad I finally researched this and more and more information is available. I'm glad people have shared their stories also.

I am going gluten-free and nightshade-free as most people have had great success this way it seems. I'm tired of being so embarassed of the scars!!!

kddemt

I too have HS. long suspected and finally confirmed by a dermatolgists who had little in the way of hope for me. My eyebrow wax lady of all people suggested I go gluten free (to reduce inflammation) its been 4 weeks and I've had a TREMENDOUS improvement.
In adapting to GF I quit most sugar, junk carbs, and all fast food. I have noted in the past tomatoes, peppers, and chili/black beans cause flareups. Abscess formation and duration is waaay down, energy is way up!

Littlewings25

Hi everyone.
I have suffered from HS for 4.5 years now. My dermatologist said I have the worst case he has seen in 25 years. I suffer from abscesses in my armpits, groin and under my breasts. I have tried several forms of antibiotics and none of them have worked. The surgeon said that my condition is too extensive for surgery to be effective. I have been unable to work for 4 years due to the constant pain and i am currently prescribed Dihydracodeine for it (yay for exceptionally addictive pain medications!)
I was given a three month trial (twice) of Adalimumab, an immune suppressant by the manufacturer, this was effective but once the trial ended the condition worsened again. I have now had to complete several applications and appeals for the funding for this medication as it is not licensed for HS and is extremely expensive, so far all of which have been denied.
I am currently dieting using 'Slimming World' and so far have lost 1st 3lbs in 11 weeks. I do smoke and am intending to quit but it's not very easy.
While i am once again appealing the decision to not fund this medication that could get me back to work and give me a life again i am really trying to lose more weight but as i am in constant pain and have limited mobility due to the HS i'm struggling to find a form of exercise that i can actually do. Swimming/running etc are completely out but there must be something?
Any ideas would really help!

dwarfiegodsmack

hi everyone. i went to see an allergist today for sun allergy. i had bloodwork back in December and today was the follow-up, my immune system is all good. he asked me questions to try to determine what could be causing the hives from sun exposure and he asked me if i have any bumps. i said well now that you mention it i have had chronic boils since i was 15, so almost 28 years now. i think it is hidradenitis but have never been diagnosed. he gave me a referral to a dermatologist.

i typed hidradenitis in the search engine here and was shocked that these posts came up! sucks that this condition exists but glad i have other people to go thru it with.

the first one i ever had was on my tailbone, it went away with antibiotics but then came back a few months later; i had to have it lanced. then they started at my groin area. i usually have 3-5 going on at the same time. 1 will go away and 2 more will come, 2 will go, 1 will come. i'm sure you all now how it goes.

i have had them under my arms, one had to be lanced.

hoping the dermatologist will be able to do something for me. in the 28 years i'm sure i have had over 1,000 boils, and probably more than this.

SilentRenegade

I've had it for a long time - probably noticed it around the age of 13 or 14.... Extremely painful, but I suppose I'm lucky since I only get it in my groin area... so my arm pits are okay. That being said, sometimes wearing certain pants, sitting down a certain way, and all that jazz hurts horrendously! Almost like I'm going to pass out if I sit on one. Plus, if they drain, then I worry about them leaking through my pants at work, so I constantly go to the bathroom and blot them with toilet paper...

That was about a month ago. I actually didn't intend for them to stop, but since I'm getting married in August, I went on a very low carb diet, meaning I cut almost all sugar intake.. and they are disappearing!! I had a really bad one that mysteriously began draining out of nowhere one night about a week after I stopped the sugar... and still is, but it's shrinking. I had that puppy for a good year with nothing happening except it was very painful.

I was told by OBGYNs that it's because I shave, so I stopped shaving. Then, only ONE, and this was at a clinic suggested diabetes... So I got tested and no to that (Which I'm glad about!).

I accidentally put this in remission from removing sugar from my diet. I did see the posts about nightshades and plan on trying that next - those items I don't eat normally anyway.

This seems to be pretty common! Thanks for the post!

Lula_73

I just wanted to post & thank everyone on this site that suggested eliminating gluten from your diet as a means to treat HS. I've been suffering with it for about 4 years. It started out with an occasional abscess on my inner labia. Figured it was from sweating during workouts, summer heat, etc. No big deal. Then they came more and more frequently & increased in number. With their location, its needless to say how unhappy my husband was. I tried everything: antibacterial soap, ivory soap, dove soap, oatmeal soap,sensitive skin soap, glycerin soap, body wash, neosporin, hydrocortisone, Monistat cream, acne cream, cotton undies, no undies, you name it. I finally decided I needed to go the doctor and decided to go when I got another one. Well it came on a Friday afternoon and of course my gynecologist was only in until lunch that day so I had to wait til Monday. Don't you know the darn thing drained Sunday night so there was nothing for him to see on Monday. He said it was a carbuncle and they happen when a lot when you shave. Well I don't shave my inner labia and frankly hair doesn't even grow there! Plus I had laser hair removal a few years ago on the outer labia and bikini line.

That night another one appeared, I called back to the doc's office first thing in the morning to find out he was off that day as he had call the night before. But the nurse practitioner could see me. One of the best things that could've happened. She listened to my history and everything I tried. She took a look and decided to drain it to send the fluid off for analysis and started me on antibiotics until the labs came back. 2 days later we had the results and she said it was a skin infection and needed to prescribe a different antibiotic than the one she gave me. I took it for 10 days faithfully and the abscess cleared. Yay!!! About two weeks later another couple abscesses appeared and she prescribed another round of antibiotics and those went away too. It was rather interesting because it was like a bunch of teeny tiny ones I didn't even feel drained too. A reprieve for another 2 weeks or so. 2 more appear on a Friday afternoon. No one to prescribe anything for me at the GYN office again so I have to wait for Monday. By Sunday night however, one of them had grown to the size of a large marble, I was in excruciating pain and started running a fever--never a good sign. My husband had to take me in to the doctor that day as I couldn't even sit upright enough to drive. The nurse practitioner sees me again and thankfully lances it. But she says once she gets in there that its like there were actually 3 or 4 of them all together forming the large lump under the skin. She sends the sample off to the lab and starts me on the antibiotic again and decides to follow it with a round of doxycycline which makes me sick, sick, sick. She also recommends trying Hibiclens 2-3 times a day. The labs come back absolutely clean--no infection even with all that pus and blood. She has the lab run it again and its clean again. She was dumbfounded, but that's when I started suspecting something else was going on. I did more research and found this site as well as a handful of others that talked about HS possibly being an autoimmune disease and potentially being related to gluten sensitivity. But I wasn't ready to give up gluten just yet--it was a huge part of my diet. Then my husband & I went on a kid-free vacation to Mexico for a week and I had the worst outbreak of my life with more than 10 of those abscesses appearing on both inner labia. I drained the ones I could with a straight pin sterilized with alcohol and we had the hotel doctor call in some antibiotics. But the abscesses kept returning and they were getting worse and worse. That's when my search for cure kicked into high gear.

At the first of the year I decided I'd had enough and I would give going gluten free, egg free, dairy free and nightshade free a try one at a time. Gluten was the first thing I removed from my diet. Over the course of 3 weeks gluten free I only had 3 single lesion flares which I drained myself. Then none at all for 4 weeks. I also noticed that the blocked pores on the undersides of my breast were clearing up as well (maybe it was mild HS & I'd been living with that for years). I did have to do a round of antibiotics for strep though so I wasn't 100% convinced gluten had been the culprit. Then a single lesion flare while on vacation that I was able to drain. This one came after I ate a custard and fruit dessert. It had a crumble topping on top that I scraped off and even went down about 1/3 of the way into the custard to hopefully avoid gluten contamination. When I came home from vacation I was exhausted from a red eye flight and starving. Without thinking I ate a bowl of buttered pasta with parmesan cheese. And nothing happened. I was thrilled to death that I didn't pay for that mistake, but it also had me curious. It took another 6 weeks with no flares for me get the courage to try to introduce gluten again to see what happened. Maybe I was just eating way too much gluten before. So I added gluten back into 1 meal a day. First night was spaghetti, next morning nothing. Yay!! Second night was hamburger night and that bun was absolute heaven! Next morning a tingling sensation had started along my inner labia. But I was still hopeful. Third night was New York Style pizza from my favorite pizza place. 2 slices of cheese pizza and I was a very happy woman. Until morning when I discovered another lesion. By the end of the day I had 2 and by the next morning I had 4. I was in so much pain and having difficulty draining them that I swore no more gluten-- it just wasn't worth it. Those cleared up followed by another single lesion that was difficult to get to drain. I'm 2 weeks out now from my spaghetti-hamburger-pizza experiment and I'm happy to say lesion free. And I plan to stay that way!

Who would've guessed gluten would be the culprit? But I'm ever so glad someone did! To others still suffering...there is hope! Your HS may or may not be caused by gluten sensitivity like mine is. It really is a process of trial & error. Results don't happen overnight. Whatever you try you have to try for 4-6 weeks to allow your body to re-regulate itself. I wish you luck!

gothchiq

Me too. It started recently I'm 45 years old. They happen in my underarms and groin. I'm going back to the doctor Tuesday. I had antibiotics for the first round of boils, and then that was okay for 3 weeks, and then the boils came back again. From what I read, you're supposed to avoid getting hot and sweaty, but then how the heck are we supposed to exercise, so that we can lose weight, so that we can have less of this problem supposedly? Nothing I've tried so far helps at all except the antibiotics. I stopped eating sugar for weight loss purposes and that has not helped either. I did notice that after exercise 24 hours later more of them will pop up. just great. super catch 22. I'm having to wear mens boxers, and now I can't wear my summer tops, and it HURTS so much. all my scars including acne scars are hyperpigmented and that also is lousy. I also get sebaceous cysts on my scalp that have to be removed at the rate of one or two a year and have been like that since 18. I have no words for how much I hate this. It interferes with my life. I work as an artist's model in addition to my day job and if this doesn't stop I will lose that job (and the needed income) for being covered in disgusting boils. :sad: and it looks like I will be stuck with this crap for life.