My Life With Hs

Hello my name is Ashley. I am a 25 year old stay at home mother of two boys and one on the way and I suffer from stage 3 HS. I started experiencing symptoms when I was around 16 a lesion here and there nothing to serious, it wasn't until I was 21 after I had my second child that I started suffering with HS. In the beginning I noticed a lesion that was very painful and had this very foul smell to it but thought it was just some acne, since it was just one or two that initially started i payed it no attention once the lesion went away then more and more started appearing and yet still I did nothing about it thinking it was something that would eventually go away like all the other lesions did. Soon one or two became seven and eight in one spot in particular my under arms then it spread to under my breast and other areas as well, so at that point I decided enough was enough I had to do something about this. I started thinking I had some sort of deadly disease and was kind of scared to find out what it was. My case was so bad due to me not going to the doctors or doing anything about it all of the doctors and dermatologist that i had seen said they had never seen a case as severe as mine before and started me on all kinds of medication shots antibiotics and creams of all kinds, needless to say nothing worked at all and I was still in so much pain to the point where I couldn't walk much less even hold my children. After trying every possible method of treatment other then surgery my dermatologist finally referred me to a plastic surgeon. After a month or so of consultations with the plastic surgeon he had told me that they would cut a good portion of both of my under arms open and then take skin from both of my thighs and skin graft it to put the skin from my thighs on my under arms in order for it to heal and at that point i had second thoughts about going through with this surgery, I figured this monster of a disease had already scared a good portion of my body and I was not gonna let it ruin any more than i had to. With that being said I went on with this surgery with the option of not having the skin graft done and healing on my own and I did just that, only bad part about that was it took almost two months for my wounds to close up or for my skin to grow back i guess you could say and and even longer time for my skin to completely heal. Soon after the surgery I started to feel better, but then I started noticing it started happening more and more in some of the other areas and I thought to my self " oh no not again " I started doing things differently in my life to see if things would change my condition like using different bath soaps detergents, eating different things and so on and so on it got better but then in November of 2011 I had a really bad out break in my bottom area to the point where I couldn't even shower go to the bath room or be intimate with my husband without feeling excruciating pain, my husband begged my to go to the emergency room and the next day I did only to find out the the outbreak was so bad that they had to take me into the operating room within hours. I was in the hospital for almost a week. After having surgery i had been placed on strong antibiotics and other medication, and about two weeks after I had my second surgery I had found out I was expecting only to miscarry a month and a half later, I believe I was pregnant before I had surgery and I never knew and the hospital never did a pregnancy test so no one else knew either. Needless to say its now January 2013 only 3 years after my first surgery on my under arms and I now have the lesions coming back and they are worse then ever under my breast and in my thighs and bottom. This horrible monster of a disease has ruined my life it effects me every day the way I feel look and act around other people I wont wear go or do certain things because of pain and embarrassment I feel like people will judge me not knowing my condition and think its contagious and disgusting. Only my close relatives and friends know about this. I truly understand what it is to live with HS day in and day out to me its the most horrible thing that has ever happened to me and I wouldn't wish this upon my worst enemy. Everyday I wish they would find a cure so I along with so many others suffering from HS wouldn't have to endure pain and suffer any more. !!!
ashleymg0927 ashleymg0927
22-25, F
6 Responses Jan 8, 2013

thank you for sharing. my story is very similar, but that doesn't matter...what does matter is that you not allow this disease to ruin your life. it had NOT beaten you. we that suffer are a special kind of ppl, we endure more pain in a matter of hours/days/months...than most ppl do in a life time.
you are not alone,I will pray for you daily!

my name is Racheal from Bethel, Ak I have had this horrible disease for about 8 years. Last year I finally found out the name of it. I have tried antibiotics none of them worked. The pain is excruciating. I have lost interest in doing the things I have done. I am ready to give up nothing WORKS! Hope to hear from you. Have a good Day!

hello Racheal im sorry to hear that you are suffering from HS as well. I have had mine ever since i was around 16 or 17 it wasn't really that bad until i started having children. I used to feel the same way discouraged and i never had the will to do much of anything its a hard thing to deal with but i finally realized after so much time of dealing with this that you can NOT let this beat u down!!! you have to be strong and fight it you can not let this win or take control over you i did for so many years there were days where i wouldn't clean or shower or much less get out of bed but then i started to realize i am so much better then this and i can get through it yes the pain sometimes is unbearable and those days are my bad days but it does get better and i hope it gets better for you!! another thing i have started looking into is a cream skin treatment called Emuaid i have not yet used it im still contemplating wether or not it really works but i am really thinking about trying it here is the web site for if you are interested as well !! and im always here for u if u need to talk this is my personal email feel free to email me anytime u need to talk !!!!

I was thinking about surgery and after reading your post...maybe I'll hold off. I have had quite a bit of success with zinc and turmeric. When I get the larger lesions, but you have to drink lots of water. I take cycles of both so I don't constantly have supplements in my body. Also acid pads and dark spot corrector help the older lesions. Antibiotics make it much worse and so does menstration. I appreciate your story, and I sympathize. I definitely agree with letting more people know and being open about it cause that opens up the discussion on finding better treatments and someday a cure.

I had surgery when i was 23 i think however it did nothing i mean yeah sure it really helped at first you know after all of the pain from the surgery went away but it started to come back this year its so horrible i really try to do so many different things and nothing works but i have never tried the zinc and turmeric i am deff interested in trying it how do i go about getting it and where i mean i have heard about it in some web site i looked at but never tried it antibiotics seem to help me but its not a major difference its really only when i start to get them and lately they really havent been doing anything for me i wish you good luck and im here if you need me or want to ask me any question !!!

Hi Ashley IM Tina and I wanted to say I feel the same way and am trying to deal with it sucks. If u ever wanna talk plz do. It's good u have support from friends and family! I have a father, boyfriend of 6 years for support but the still don't understand nice to talk wit Simone who does!

yeh deffinatly i always love talking to people who can understand fully what im going through theres nothing like trying to explain this to someone who has never felt what we feel or gone through what we go through every day. here is my email you cxan email me anytime !!

i kno the feeling.......finally got diagnosed with hs a couple weeks ago but have suffered from this since i was 17.......Im now 35 and still suffer from them. i recently had to miss a couple weeks from work due to a very large one on my genitals and the pain was so intense it made me depressed, mentally drained, and just frustrated beyond belief. it is hard for my fiance and daughter to understand what it feels like so im just so gladthat there are forums like this to express our innermost thoughts and even to vent to others that actually understand what it is like. keep ya head up grace n peace #maknitwork

i was diagnosed when i was 22 thank god i kept on getting diffrent opinions from different doctors until finally someone who knew what they were talking about helped me. its hard sometimes when i have a flare up im in so much pain i can hardly do most things i thank god that my husband is so supportive he has been there with me through this every step of the way he trys to console me when i hurt but always says he will never truly understand. I heard of a ointment or skin treatment thing of some sort that is supposedly really good and has helped a lot of people with HS its called Emuaid and I'm gonna be ordering some in the next couple of weeks to see if it helps me any i will defiantly keep you in mind and let you know if it works!!! the website for it is if you want to check it out !!

Hi. i just wanted to offer my support and let you know that I can appreciate what you are going through and to try to stay as positive as you can. You and your inner circle are defenitely in my thoughts and prayers and i hope that one day there will be something that can be done to stop this debilitating disease.

thank you so much i try to stay positive as much as i can there are some days where it truly knocks me down ( mostly when i have a really bad flare up ) but even then i try my hardest to come above it and be strong there have been times were it really got the best of me but after dealing with it for so long i finally have come to grips with it. I really appreciate your support and i know one day hopefully soon there will be a cure or some break through medication that can at least provide some relief for me and others suffering from this !!!!