Author Topic: new and concerned  (Read 3740 times)

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Offline queenjillybean

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new and concerned
« on: Saturday April 09, 2011, 05:13:22 AM »
hello, i am new to this forum and just discovered what HS even is... i have not been diagnosed, but i am going to make an appointment next week to get checked...
it was only yesterday that i connected the dots with a strange flare up on my left lower butt cheek, very very low- the "fleshy" area at the very bottom of the cheek- almost toward the groin area... i actually have had painful knots appear down there in the past over the years, some were on panty line area, but they never erupted and always just vanished...there were years between these lumps- until the past 4 to 5 months... each month, about a week before my period (i only recognized the period connection yesterday)- i have had what appears to be a double/ or cluster boil in the EXACT same spot... it is horrible looking, the skin turns a purple/black, and in january it had a red ring radiating around it... it is extremely painful, itchy and very deep feeling.  it has returned again this month, and i am at the point of being concerned and over the embarrassment.
I am almost 42, a female and a smoker.  I am in week 12 of post op of my 3rd spinal fusion and NOT supposed to be smoking- in fact, i had quit for 5 weeks post op and ironically, my boil/sore did not flare up as severely in february...i am smoking again, and the last 2 months, one week before my period, this same annoying "monster" has reared his ugly face with a vengance. I am not particularly overweight- i am 5'7" and about 150 pounds.  I DO carry ALL of my weight in my hips/butt though. I am wondering if I have HS, and have found several dr's in my area who treat and even recognize HS... Again, what i am experiencing is a recurring boil cluster that is large and deep on my low buttock area/ bordering on the groin area-basically i am sitting on it- which has returned like clockwork-same exact sore about every 4 weeks, ALWAYS about a week to 10 days before my period.  I do not pick, scratch, squeeze or even touch it...i have taken pictures before with my phone just to see and follow its progress back in January as i was terrified it would interfere with my surgery.  it went away just days before my surgery. i am wondering if it is possible to suddenly develop HS at 41? Or how it actually presents itself in its early stages... as i stated, i have had boils appear in the vicinity randomly over the past 20 years, but never with any regularity, pattern or consistency that would have caused alarm as this is now.  I have never even sought medical attention for one.  Any insight or suggestions would be very much appreciated...  :o ???
« Last Edit: Saturday April 09, 2011, 05:18:38 AM by queenjillybean »

Offline gfpaperdoll

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Re: new and concerned
« Reply #1 on: Saturday April 09, 2011, 05:51:22 AM »
Hi Yes, it sounds like HS.  Sounds like you are mostly in remission with a mild stage 1.  which could change at any time.

I am on the mostly Paleo diet & keep my HS in remission.  I have only had one very bad boil about 17 years ago.  & maybe one on my face when I was in my early 30's - was not so sure it was HS but probably.  Anyway all those years I never knew what it was & really was in remission, I think because of my food allergies and my excellent diet.  We all have different triggers, although I think that diet plays a huge part of it.

I had a mild flare in Dec. 2009 from an allergy to nuts, it took me all of 2010 & up until recently to get into a very good state of remission again, by eliminating a lot of foods & finally accidently finding out I have issues with bananas.  (& I am pretty much of a food expert & it took me that long to make the connection.... )
anyway, during all this I never got the boils but I would get the pain & I did have some type of internal boils that I could feel drain - talk about scarry...

You will need to be your own detective like you are doing, that is going to help you more than any doctor will be able to help you.
I do suggest that you give up the smoking. 

Offline gfpaperdoll

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Re: new and concerned
« Reply #2 on: Saturday April 09, 2011, 05:57:19 AM »
You might get your doctor to check all your vitamin and mineral levels, including vitamin D, B12 and zinc.
As we get older it is more common to be low in zinc.  I am now taking zinc & I think it has helped a lot.  You can also google the signs of zinc deficiency.

You might want to also look at your diet.  Some of the things that bother us are gluten, other grains, dairy, sugar, chocolate, caffeine, oranges, nuts, seeds, white potatoes...

Some people do notice problems with flares based on hormone cycles.  IMO, & I am not expert for sure, but I think it is because that the hormone changes stresses the immune system...

HAve you ever heard of Hemochromatosis?  Which is a genetic problem with too much iron in your blood.  Does anyone in your family have it?

I weigh about 150 lbs also & I have never been overweight, I also have never smoked.  HS is a genetic autoimmune problem, nothing to be ashamed about.  I would encourage you to find your triggers & nip this HS in the bud while it is still managable.
Let me know if you have any questions.
jeanne

Offline queenjillybean

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Re: new and concerned
« Reply #3 on: Saturday April 09, 2011, 06:26:25 AM »
thank you for your replies... i have to stop smoking in the next few weeks... i actually had quit for several years, and then quit for 5 weeks recently, but chose to smoke again as a result of major stress that was very difficult to manage as a result of being bedridden from my recent surgery...
as to my diet, i do not eat ANY refined sugars or processed foods... however, i do consume a lot of caffeine via coffee and diet coke... diet coke is my one "bad" food/drink item... my stress levels have been extreme over the past few months that i have had this flare up for certain, and i had been eating 100% pure and natural chocolate since my surgery, as my pain meds were changed for my post-op and i believe that one was causing me to crave chocolate, as i normally would eat/crave chocolate twice a year max... i stopped the chocolate about 3 weeks ago... i am not much of an eater, but tend to go in cycles as to what i like to eat... for example, every day for the past 2 months, i eat a large bowl of fresh strawberries, blackberries, blueberries and 1/2 of a banana all mixed together.  i do not eat much meat- i prefer brightly colored foods...salads, veggies... i work from home and live in a rural area, so i do not eat "out" much- and NEVER EVER EVER eat "fast food"...nor fried foods. my dad who is 62 has a severe case of psoriasis, but i have never had any major health issues except for my spine- which is very diseased- i have had 6 invasive spine surgeries since age 18, and most recently 1/25/11- we are talking very radical surgeries that are way outside of the "norm"...i am on pain management medicines- and tolerate them well- i am very successful in my career, but fortunate that i can work from home, as my spine has degenerated to the point that sitting at a desk or standing up for long periods is not an option... i have never had acne or any skin issues whatsoever, but i do have stretch marks in my groin/ lower butt area from my pregnancy- 21 years ago- and i have noticed that the flare ups tend to be on the stretch marks... i am going to start making a point to avoid the foods you referenced above, get to the dr, KEEP RESEARCHING... and of course most importantly, quit smoking... i am curious as to how a dr who is familiar with HS would treat this current recurring cluster... is it common to have something like this excised? thanks again

Offline queenjillybean

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Re: new and concerned
« Reply #4 on: Saturday April 09, 2011, 06:54:39 AM »
Yikes... I can't believe it, but within minutes of my reply, this sore began draining for the first time, ever...after 5 flare ups, it is draining... I have lots of gauze and supplies from my surgery. Can I clean it with Hibiclens if it is draining? Not sure what to do... Yuk

Offline gfpaperdoll

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Re: new and concerned
« Reply #5 on: Sunday April 10, 2011, 09:34:28 PM »
Queen, I hope it is all better now.  There is an HS forum on Daily Strength that has current information on wound treatments.  I just know about diet.  Well, it sounds like you are almost there on diet.  You will surely have to give up the sodas.  The diet sodas are absolutely the worst thing that you could consume...
Sorry about all your surgeries.  I am sure it must be stressful, but you know you have to just let some things go - figuratively & literally !!!  Running & hiding behind a cigarette is only getting you in worse shape.  Our bodies systems are all intertwined & you need to not be smoking etc to let everything heal properly.  Maybe you cannot go out for a full spa day but you can pamper your self in other loving healthful ways.  Smoking is saying "I do not care about myself right now".  The berries and banana sound very healthful & loving.  Not sure if you have a problem with bananas but you might try eliminating them.  Lots of fresh fruits are coming in now.  You are lucky they even did the surgery, some surgeons refuse to operate on anyone that smokes.  I used to volunteer in the ER at M D Anderson cancer hospital in Houston.  The only patients that I ever had a problem with were the ones that smoked and would verbally attack me because they could not get outside to smoke, because they were hooked up to so many machines... perspective...