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Dec. 10th, 2009

simplyblessed85

(no subject)

Heyy!!

So... I've been trying to find something that actually helps ease the pain... I have been taking Multivitamins for about a week now, and so far no inflammations or pain!!!

Nov. 16th, 2009

simplyblessed85

Intro

Hi everyone,

I must say that I am pleased to know that I am not alone, although I'm not happy that others have to experience this horrid disease. I have had this since puberty, and I'm now 24. During my teens, I have been back and forth to different doctors, allowing them to lance the boils that grew under my arms. I decided after a few years that I could no longer deal with the pain from the packing and repacking of the holes that were left in my armpits after the boils were cut and left to drain. I was never given a full diagnoses until I was pregnant with my son. I have learned to treat this on my own because doctors were just giving me antibiotics that did nothing but caused more flares and more pain.

So many nights I've cried, wondering what the hell was wrong with me. Gradually, the flares have stopped. I had them so bad that nearly every spot underneath my arm was open, exposing tissue... I've been lanced so many times that I now have little feeling- I have sort of a numbness to my armpits. Thankfully, now the sores are closed up, except for two little holes that continue to leak blood and pus. Occasionally, I get throbbing sensation and its very difficult to move... these are the days where I get depressed and feel as if I'm mad at the world.

The thing is, I always knew that something was wrong with me, and I knew that this thing had a name, but I just wasn't given the correct name after all of these years. During a monthly prenantal visit, I showed my doc my arm, and asked if she knew what it was... from the scarring and the thickness of the skin, and the tracts that you could both feel and see underneath the skin, she told me I had HS. I didn't believe her. My flares had stopped, and I didn't get any new boils, because I was taking prenatal vitamins. I was always told that my body was missing an enzyme to fight this off- so while pregnant, the only thing that really occurred was skin breakage and a leakage, but no new boils/cysts.

I now have to deal with the scarring. I can not wear shirts that show off the skin--- sleeveless shirts- and they are still draining and painful. I can still feel the throbs from the tracts. This is just ridiculous, and although i know that others have a worse experience than I do, we all still suffer because this is very depressing. I've never looked at myself as an insecure person, and in relationships I've been told numerous amounts of times that I'm insecure--- although I didn't think so, in all actuality, I am. I hate this.

Sep. 24th, 2009


lisa323

Introduction

Thank you so much for starting this community!

A bit about myself...  I'm 31 and I've been dealing with HS since I was 19.  Back then, it only occurred in the groin/thigh area.  I had countless trips to the doctors, Incision and Drainage, wound packing, and the diagnosis was missed.  I was repeatedly told I needed to lose weight, and perhaps just try a different brand of soap. Well, I lost 50 pounds, and it made no difference. In addition to the existing problems, I now also get flare-ups under both arms and breasts.  I was finally diagnosed about 2 years ago.  I really wish there was more out there about this.  I moved from the US to the UK when I was 26; 7 years in the US with no diagnosis, and 3 in the UK.  It's been a pretty frustrating (and painful!) journey.

The worst of it now is in both armpits, right being worse than left.  I'm going in on October 15 for excisions under both arms and I'm feeling pretty apprehensive.  I just don't know what to expect.   I'm feeling kind of in the dumps right now because the right side is pretty bad, and I have a hard time even picking up my kids.  (They're 11 months and 4) 

I'm new to LJ and looking forward to getting to know you.  Thanks again for starting this!

Aug. 29th, 2009

mes

infernogodddess

SIde treatment

I do not know if a lot of you are like me and get blackheads/whiteheads in the area where I get flare ups, bi-lateral groin and axille (armpit) and my derma put me on Differin Gel for facial acne and I asked if it was ok to use on the body as well, it was kind of a question he had not been asked and said you know what yes go for it and we will see the results. Now differin makes you break out pretty bad the first few weeks up to 12 weeks in fact before the morning you wake up and eveything is gone. I do not know if using it in those area's is what is helping specficaffy because I am also on long term Tetracycline, but they do seem to calm the "angryness" of the area's and less lesions are poping up because they are being pulled out by the Differin before they can really festure under the skin.

With that being said I am going in the next couple of weeks for a full of all of my area's (right axille, under the breast, under the belly fold and the worst which is the bilateral groin)

If the community would like I will try to keep an almost daily record of what is going on during the procedure, how insurance is playing it's role and so forth.

I am on 36 Rx right now and cant wait to be done (I might even be able to get a half tummy tuck for the belly fold problems GO ME!) and a medial thigh lift so instead of having to keep the wounds open to drain I can get a bit more closure and less scarring,

I like most who suffer from HS have a low self image and will have both a general surgeon and a plastic surgeon working on me.

Let me know if you want me to keep you guys updated ok?

Aug. 23rd, 2009

AG_2011

auronsgirl

Pink Grapefruit Body Wash!

Neutrogena has a pink grapefruit wash in their Body Clear line. I use the Body Clear washes when I have a lesion come up, now it'll at least smell good.

Aug. 18th, 2009

aaaaaawkward

rainbowaster

doctors in western mass

Hello Everyone!

So I am not, as I'm sure is the same for a number of people here, officially diagnosed with HS. I have every symptom of moderate HS and have ruled out a number of acne treatments, but never really pursued treatment partially because of shame, partially because from what I've read, there kind of ISN'T treatment aside from excision or cortisone, and I've had a number of doctors look at it (in the context of breast exams), ask if its newly occuring, and when I say "no, I've had it since middle school", move on to the next thing. I guess I just figured there was no point in spending a $25 copay plus test fees to find out nothing can be done.

However, I would like to try to get into the Harvard skin study on HS if it's not too late, but I need to be officially diagnosed. This is the problem.

Does anyone know of doctors in Western Massachusetts (or for that matter, southeastern mass/rhode island area as I could possibly stay overnight with my parents) who have experience with HS and will listen when I say that I KNOW it's not acne and that it's something more serious? I really do not have the time (I work a 45+ hour work week and have already used all my sick days) or funds to visit multiple doctors if they are not going to be able to help me, so I'd like to start with someone who has prior experience.

Any suggestions? The past couple of months have had some brutal flareups and it's interrupting pretty much all aspects of my life, so I am finding this to be an increasingly urgent matter.


Thank you all and I am so glad I've found this group!

Jul. 22nd, 2009

Joscelin Southpark

joscelin

Intro

Hi my name is Julie. I'm 42 and have dealt with what I now know is HS since puberty. I can remember my first lesion, a big boil on my inner thigh that my mother lanced with a needle.
Like many I was misdiagnosed for years, not suprising since so few medical practicioners even KNOW about HS much less know how to diagnose it.

It was thanks so auronsgirl who saw my posts about my horrific boils that I learned about HS and was finally able to secure a correct diagnosis. Since then I've have four major excisions, three of which required a wound vac for healing. My most recent excision (on 7/2) was my right axillary (armpit) and it has left me a wound 3" x 5" x 8".. which will have a vac placed next week.

I like to think I'm a fair educator, I'm also very proactive about my own healthcare and my body. Anyone who shows an interest in HS can count on me for a basic edcuation. Unless people know about it, they may find themselves or someone they love dealing with the same horror.

I hope this community takes off. We need to be able to share and support one another as we deal with HS.

Jul. 8th, 2009

hidradenits suppurativa

hssupport

Welcome!

This community is for anyone that suffers from Hidradenitis Suppurativa.

Feel free to post or visit our website http://www.hs-support.uni.cc/