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Old 08-20-2011, 08:11 AM
 
2 posts, read 23,738 times
Reputation: 16

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my name is kristy and I have lived with hs since I was 8 years old. I have just turned 29. The disease has taken over most of my life. It is on the back of my neck, underarms, side, waist band, groin, butt, and the private area! Because of this disease my c section incision was infected and had to be packed for 3 months before I healed. It was all worth it to bring my son into this world. I have been married ten years to an amazing man, who loves me despite all we go through with the disease, the long bouts that I am down due to multiple boils at a time, I currently have two bigger that golf balls. We have 3 boys. The older twos mom passed and we adopted the youngest is ours together. His name is kendall. He is now 8 years old and has been diagnosed with hs for over one year. He has already had one surgery to drain two boils with staph. As bad as this all sounds I want you to know that hs only defines you if you let it. I know it is hard but God willing I plan to fully enjoy the days I can and to be thankful that I have a amazing family that loves me with my scars, bumps, lumps, and even the bad infection smells. I have to believe that having this disease has made me who I am and helped shape the mom and wife I am today. Do I still pray for a cure or a way to make it easiee to go about my day of course I do, even if it never benefits me, I want a easier life for my son. But untill I can see a cure in sight or a method of some sort of relief I plan to enjoy even my painful days, even if all I can do is lay on the couch with a hot compress and snuggle up to kids and watch a movie.
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Old 08-26-2011, 06:58 AM
 
2 posts, read 23,738 times
Reputation: 16
Well hs has reared its ugly head this week. I have a bad flair up. Advil is my friend right now, may take something stronger to get me through my oldest sons first home football game tonight, but I will suck it up and be in the stands. That is a mamas job. Trying tea tree oil right now, it does help with the pain, turmeric is my next project. My youngest son who also suffers with hs has a derm app on sept. 8. They are discussing surgery to slow the spread of hs on him. We are willing to try anything right now, because school has became torture for him. He is only 8 and to young to have so much on his little shoulders. Hs has made him older in his heart than he should be. It has also gave him a compassion for handy capp children. He will tell you that may look different, or have to do special things to stay well, but like him they are just kids. He treats no one differently. That amazes me when I see the stares and rude behavior those kids endure by not just other children but adults as well. Makes a mama proud. I hope everyone I have been reading about is getting some relief from their hs issues, it will be awhile longer for us southerners because of the nearly 100 degree temps and high humidy. Yet mississippi is my home, cant imagine being any where else. God bless and praying you all stay well.
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Old 09-29-2011, 02:12 AM
 
1 posts, read 11,699 times
Reputation: 11
I am so sorry to hear that anyone else has to suffer like I do. I feel horrible all day and cant even raise my left arm...the pain is so unbearable. It is constant...I always ask why I am being punished... it is so psychologically jarring. heat compresses seem to take some of the edge off of the pain but it there is still a dull ache and a throbbing ache that seems to be invading the very nerves and muscles...my god...its hurting this instant. Ive had this issue since I was 13 (im 26 now) and this right now is pretty much the worst it has ever been...I sometimes think I would enjoy having my entire arm cut off to never feel this constant agony again. I sometimes feel like crying. when I first started getting them it was at an area on my waist, kind of close to my supra-pubic area...I was afraid to say anything about it because I had NO IDEA what it was. I kept it to myself up until about 1 year ago... I am extremely lucky to have a gf who genuinely cares for me and who also has a sick obsession with watching things ooze. though I never let her touch them because I am the only one who knows how much pain it is causing.

the areas that I get them are underarms, inner thighs, supra-pubic area, groin, at the bottom of my tailbone. god my arm is throbbing right now. no one understands the level of pain this causes...yesterday i felt nauseous because of it.

I will try the foot powder thing, is there a certain type or am I just looking for Dr. Scholls Foot Powder? Im ready to try anything...this is getting ridiculous.

I want to thank you all for coming out and sharing stories and treatments. I dont feel alone in this anymore and I feel a slight sense of hope that something might work to ease the suffering.
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Old 09-30-2011, 04:48 PM
 
4 posts, read 34,518 times
Reputation: 12
Default hs

I also suffer from hidradenitis supparative but only under the armpits. I noticed my first lesion when I was 16 (I'm now 20), several weeks after I stared smoking cigarettes. It is so hard not to be able to wear cute tank tops and bathing suits and the pain is horrible sometimes. I'm waitress and when I was about eight months pregnant I had a boil under each arm that made me want to cry everytime I even lifted my arm an inch. When I first went to the doctor I only had one little bitty boil, I have done some research and have learned that if you go to the doctor that early for it they can usually make it go away. Well, apparently my doctor misdiagnosed it. Over the past four years it has got worse and worse. When I was eighteen it seemed like it was going away, but then I got pregnant and it has been horrible since then. I have taken all kinds of antibiotics but nothing helps the infections or the pain go away. I have recently been thinking about having plastic surgery, or some kind of surgery to appear normal again. Can anyone give me some information about surgery treatmens & price range?
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Old 09-30-2011, 04:53 PM
 
4 posts, read 34,518 times
Reputation: 12
If you don't mind me asking, what kind of surgery was it, like what did they do to you? And how expensive was it, I have two children and my husband and I just have mediocre jobs, and I'm hoping I will be able to afford it.
Quote:
Originally Posted by notafanofHS View Post
I was diagnosed with HS in 2006 after years of having the boils lanced. I had it under both arms and it was horrible! I would have 5 or 6 under my arms at one time. All of my shirts had yellow stains on them from them draining. I tried a new doctor and they immediately referred me to a surgeon. I felt great after the surgery....until about a year later, they became consistently under the other arm. I had surgery under that arm in 2007, and didn't really have any other problems until a few months ago. I no longer have them under my arms, but now have one under/in between my breasts. Talk about uncomfortable! I am glad I had the surgery under my arms...at least I can wear sleeveless dresses/tank tops now! I have an appointment with the surgeon tomorrow to discuss the one on my breast.Moderator cut: sorry but you need 10 other posts before you can make specific recommendations Hope this helps someone....
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Old 09-30-2011, 05:07 PM
 
4 posts, read 34,518 times
Reputation: 12
If only all questions were so easy. I am angry at my doctor for not really helping me. I had really low self-esteem for it but thank God I found a wonderful man who loves me regardless of my hs. Shame, I'm not sure but I can't help but wonder what I did to deserve this.
Quote:
Originally Posted by imcurious View Post
I don't know anything about this syndrome. I am sorry any of you have suffered. I am curious if any of you have anger, self-esteem, or shame issues.
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Old 10-18-2011, 02:09 AM
 
2 posts, read 13,292 times
Reputation: 10
Default Suffering for 20+ Years

Glad to have found this forum. I've suffered with HS for decades with small reprieves here and there. Was glad to find the info about Colloidal Silver, too. Does anyone have any specific info about the different between the 5 PPM, the 500PPM and the 1500PPM formulas other than each is obviously stronger than the last? Any info on the efficacy? Thanks in advance for any info.
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Old 11-10-2011, 09:48 PM
 
4 posts, read 34,518 times
Reputation: 12
I have no idea what collodial silver is, does it work?
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Old 11-11-2011, 08:15 AM
 
1 posts, read 10,095 times
Reputation: 10
My wife has severe case of HS, how bad is the pain, and is it constant? She takes many antibiotics and has prescription for MS Contin for pain management, she also adds other pain meds on top of theses meds, very worried about over use, please comment.
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Old 11-16-2011, 04:10 PM
 
1 posts, read 10,088 times
Reputation: 11
Default my HS treatment

I've used various modalities trying to get rid of my HS - herbs - western, Chinese even Ayurvedic,
also acupunture and meditation and recently with recommendations from Moderator cut: not allowed they list various Homeopathics for hidradentis but still the boils and skin eruptions continue.

My last try was a simple formula containing a bottle of antigen or peptide and 2 packs of herbs.

Here is explaination of the treatment:

Ist according to this source HS is an autoimmune disease resulting from antibodies to gluten and is similar to celiac disease. In fact they also treat Celiac disease and the treatment for HS and celiac is the same by lowering antibodies to gluten.

It's a method called Oral Tolerance -a process that lowers antibodies. According to them the herbs actually coax the immune system to produce a necessary blood factor so Oral Tolerance works better because of this factor.

Anyway, my case is moderate which requires 5 courses and each course is 21 days.

I have to say after 3 courses I am having less eruptions and when they do come they are not as severe.
I noticed when the skin swelled it did not become red, it subsided and went away.
At the end of the 5 courses I am even better than before. Then it needed a few weeks for my body to
adjust to being more improved.


My HS is I believe all gone. HOwever, it is only 4 months now. But I have never had a treatment that could alleviate & make the symptoms disappear.

I do recommend that this treatment works.

Moderator cut: need at least 10 other posts before making speific recommendations

Last edited by SouthernBelleInUtah; 11-16-2011 at 04:44 PM..
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