Any other Hidradenitis Suppurativa sufferers out there?

laura6113

I have hs as well!

muma_juma

Hi all,
I got my first boil on my tailbone at 9 months old. I then got them on my butt all the way thru childhood. I started getting them in my groin and under my arms in my teens. I am now 43 and have had them my whole life.
I have tried everything! At the moment I am gluten, dairy, sugar and nightshade free. I have my fingers crossed that this will help. I am not nor have I ever been over weight. I have always washed with antibacterial washes. I am on the Yasmin pill and that did help for a while.
I have horrible memories of my mum and neighbour holding me down while they placed a heated bottle over my boils but the relief after was always good . I will no longer take antibiotics. I was diagnosed with HS when I was about 20 but it was after I did my own research that I fully understood that this was what my life was going to be like. I suffer depression and anxiety when I get the boils bad and I get so tired when I have them too. Once I have finished the course that my naturopath put me on I will take the zinc, magnesium, fish oil and turmeric tablets again as I found that they helped. My father had boils and my daughter has it as well.
I mainly wanted to put my story out there as I have not seen many people says they were babies with this condition, it mainly seems to start for most people in their teens Thanks for taking the time to read and I hope for pain free days for all

sallyaj

Bird mites.

We moved to a new hone and my skin condition improved. At first I thought it was that I eliminated gluten -- and I think it did help. But I now know it was bird mites.

Before we moved from our "garden apartment" I sprayed our air conditioners with mitacide. The next day it was like someone sprinkled pepper on our window sills -- a pile of dead black mites.

These tiny creatures which are too tiny to see generally, feed on birds. But lacking a bird host they will feed on humans.

Needless to say, we ditched the air conditioners when we moved. And guess what? No more skin rashes, itches, bumps.

Eliminate gluten rule out mites (google it) before suspecting a major health issue.

denisejohnson754365

Off nightshades for two months and not sure if it helped or not so I'm going to try having them again to see. Went to the doctor and he did two excisional debridement's which helped those two areas. I am doing what another woman suggested and trying to drain them myself and stay constantly vigilant, trying to break up the sinus tracts. When I went to the md one of the nurses was like "OMG, what is it?" I gave her a big lecture on how she should be more sensitive to people with this condition because it can start in childhood and we are so sensitive and it does not have anything to do with bad hygiene in fact we tend to be overly cleanly, I was taking 2 or 3 showers a day. I also said it is not from being obese although that can make it worse.

amyschmidt35

Hi All! I am new to this site. I was diagnosed with Hidradenitis Suppurativa back in January 2013. I have tried numerous things to control my HS. What I find so strange is that what works for me may not work for you! It has been a scary journey for me, but I completely changed my diet and started other "tricks" such as washing with a 5% benzoyl peroxide every day. I started a blog (just this month) to try and spread HS awareness and offer some of the tips that have worked for me. As well as share my story! I think its good to get it off your chest!!!

If anyone is interested in my blog you can visit it at http://hidradenitishealing.blogspot.com/

amyschmidt35

Hi Denise! Will you share if you find out that one of the nightshades causes a flare-up? I have heard that these can cause flare-ups, but they don't when I eat them. It is crazy how we all react differently yet have the same disease!

twopeas2

Just a quick report in to let you guys know that I haven't had a flare up for ages now, so it looks like gluten is the big one for me! I won't ever be going back onto it, that's for sure

I hope you guys are doing ok x

mill_ville

Hi Everyone! This is a great forum. I never knew there were so many people suffering from HS. I truly felt alone. Many of you have posted great tips that I am going to try and hopefully I will get some relief. I have lived with this disease since I was ten years old and I am now 30. I wasn't even diagnosed until I was in my 20's. Every doctor I visited just told me "it happens sometimes" and would prescribe me antibiotics or drain them.

Thank you all for sharing your stories!

denisejohnson754365

Hi everyone, hope you are all Well. I found a good skin cream called "Self Heal" very soothing and has "Flower Essence" of "Plumaris Vulgaris, also called "Heal All" just has a nice ring to it!
As far as the nightshades I went off them for 60 days and it didn't seem to made a difference.
Xoxoxo

AmyWininger

A couple of months ago I got 4 cysts at one time, but they kind of dissapeared after a month or so, i had to drain one. I don't know if I have this or not, but it worried me. Lol. I've never even heard of this.

skoneal90

Glad to find this site. I read all of your stories and am going to try the gluten and nightshade free diet. Already added Zinc and Tumeric this week. I have been suffering from this for over 40 years. Fortunately, I only get the cysts/boils along the area where my underwear legs rub against my thigh, and only a few times a year. But, I haven't left the house in two days now. I am in so much pain. I had to cancel on a client for tomorrow morning because I can't walk that far. This is a very hard illness to live with. Glad to find people that understand.

Ivey05131980

Bump

1234terri

Be careful the IV treatments don't contact Cipro : it can cause many other bad outcomes other than tendon injuries. Many permanent. Google this stuff before you allow MDs to drip this poison into you...if it's what they prescribe.

*************
Federal regulators are ordering new warnings on Cipro and similar antibiotics because of increased risk of tendinitis and tendon rupture.

The new warnings apply to fluoroquinolones, a class of antibiotics that includes the popular drug Cipro. The FDA has told companies that the drugs must now carry "black box" warnings alerting doctors and patients that the drugs can increase risk of tendinitis and tendon rupture in some patients.

Fluoroquinolones have carried similar warnings for years, but officials say they continue to receive reports of safety problems. A "black box" warning is the FDA's sternest warning.

Onugent01

Hi I'm 38 and I've had HS since I was 17 altho it wasn't officially diagnosed til I was 29. I've had numerous surgeries in my right armpit. It seemed to get worse during/after each of my 3 pregnancies. By the way I was also diagnosed with polycystic ovary syndrome in my twenties. I had my last surgery to remove skin and deep flesh/tracts 4 years ago and since then I've lost weight and I don't seem to suffer big outbreaks anymore. Altho I hate to tempt fate by writing that...
On a side note, I do a lot of running ( I have no sweat glands in my armpit anymore so don't get sweaty thank god) but I do find sports bras to be quite tight under my arm as my skin healed quite tight with a kind of string of skin, I dunno if that makes sense to anyone , has anyone ever come across a sports bra that has a wider underarm??

ali1617

hi folks.My name is Ashraf and i am 23.i am having HS from last 10 months.i have consulted 2-3 skin doctors.one of them suggested me to take a surgery.Will sugery help us to stop HS permanently???? Does any one has surgery ?.what is percentage of success.after reasind your postings i feel like ending up my life.but god dont forgive me if i do so.thats what making me very much worried.please reply anyone who have read this post

denisejohnson754365

anytime we feel suicidal it is critical to get immediate help. There are hotlines or emergency rooms...

kbransky

I recently was diagnosed w/ HS. After many years of painful sores under my arms, a doc has finally treated it! I am currently taking some antibiotics to clear up the current breakout. But after discussion w/ my doc, she informed me that STARCH is a major contributor to this condition. And the another contributor to breakouts is ARTIFICIAL NAILS...who knows how that works. Also, using deodrant only, NOT anti-perspirant and cleaning break out areas w/ anti-septic wash.
Today is my first day of cutting/limiting starch from my diet. For sure this is going to be extremely hard thing, b/c i love bread; but if I notice less and less breakouts, this will be for the better! I was sort of hoping that maybe it was just gluten, as I see other ladies are posting about. But I think in the beginning the best thing to do is cut starch and maybe add it back after being breakout free w/ gluten free products.
Hopefully, with all these lifestyle changes, i will be break out free!

I look forward to reading your posts on your success with dealing and managing HS.

babylao269

I've had this condition for 20 years. The break outs got worst after the birth of my daughters 11 years ago. I've tried the antibiotics, anti-bacterial soaps, waxing instead of shaving, quit smoking. I believe it may be related to some hormonal imbalance since my outbreak usually starts a week before my menstrual cycle. Would love to join any support groups and give/receive advice & a shoulder/ear to a fellow sufferer.

iameeviac

I was diagnosed with HS this month. But part of me feels like the dr. didn't listen enough, and after reading so many of your descriptions, I don't feel like I actually have HS. Would anyone care to read this, and give me a non-medical opinion?

It started the way HS starts: panty line area, early puberty. Drainage rarely smells bad and often contains tissue.
It looks like HS: Cyst/boil-like, Under the skin, needs to drain, has a "tunnel" or a "sinus" as my dermatologist put it.
It doesn't spread. I have one lesion and it comes and goes, but it never goes away on its own.
It barely hurts--only when messed with too much. It hurts when the sinus is blocked and the pressure builds up with that funk that needs to be drained.
When it began, I was 14 (19 years ago) and it was an ingrown hair. When I opened it, it was FULL of hair and tissue and was only a few cell layers below the surface. It healed. Months later, it came back in pretty much the same spot. I dealt with it and had the same results. Over the years, it would reappear and scar tissue started building up. It is VERY possible I created the tunnel sinus myself with the giant needle I used. Years passed and the "cyst" would shift a bit, further away from the original problem, but every time I dealt with it, I removed all the foreign hairs, and it would heal.

This year, the "breakout" has been more sub-dermal than normal, so cutting it open has been too painful to do. Therefore, I can't get rid of it. That's why I finally made an appt and the dr asked me a couple of questions, diagnosed me with HS, and prescribed me PanOxyl 4% as a wash and a topical antibiotic. And, of course, he told me to stop messing with it. After 3 weeks of treatment, it had healed and was so swollen that the pressure made it really sensitive, the treatment was doing nothing, and I had to open it. I actually managed to pull one hair out of it this time, but the doc wouldn't even listen to me when I told him it was a really big mess of ingrown/inverted hair follicles.

Does this sound like HS? Should I seek a 2nd opinion?

iameeviac

@ALI1617 I asked my dr. about surgery and he said it would get rid of what's there, but it wouldn't prevent breakouts in other areas, or from reoccurring in the same area later.

http://robbwolf.com/2012/04/09/putting-hidradenitis-suppurativa-remission-paleo/