Living With Hs

I've Been Livinq With HS For About 2 years Now And Im Only 15 years old. Its started Under my armpits with tiny holes then the stinky drainage && the big boils. It has been EXTREMELY painful for me. And to make matters worse it moved down to my vaginal/ groin area :'( , i get big holes in between my legs and these hard bumps that eventually bust with drainage. They are all over it is almost completly unbearable To Walk , i cant even go back to school just because im not functional and im uncomfortable .. im one of those kids who actually loves school ♥ band && history are my two favorite subjects . Now i cant even enjoy them. I cry almost everyday because im in pain or I feel useless im too young to know this much pain it isnt fair ! No one will help me simply because they dont even know what HS Is when I Went To The Doctor They Thouggt I Just Had A staff infection but i kept comming back then later on they decided it was hs . They gave me antibiotics (pills,cream,soapss,wipes) i had it all but it didnt work :( .. i just want someone to tell me itll be OK , im tired of being tired i used to an active kid i played the saxophone for five years ive danced for two years and i wanted to do basketball but i cant i cant even go to my homecomming .. the doctors say i need surgeory. That im fine with but will it go away forever ?? Im reafy for surgeory but im deathly afraid of needls or anything sharp so i was a little hesitant when they told me that. But as long as i get better and heal up and can be able to do the things i used to do im fine .. i just needed to type this because i really dont have anyone to talk to but my mom and she only knows so much :/
alto5 alto5
3 Responses Sep 24, 2012

Hey there. I understand your feeling, i had HS for 4 years, i tried about 10 doctors, multiple antibiotics, chinese medicine, homeopathy. You can return to comfort level of living. Calm down.

I changed a lot of doctors and i ended up with surgeries (actually 5-6 surgeries). Show this message to your doctor.

Just cutting and cleaning it and then leaving for healing would not work, since HS produces sinuses (holes are connected by sort of caves in the flesh (sounds horrible and it hurts like ****, but still - it's reality and don't wait till it goes more). Sinuses must be radically excisioned. That is they will cut the part of tissue close to holes. And then either stitch you or leave the wound open.

Not every surgeon stitches this kind of wounds, cause the are subject to infection.

DO NOT BE AFRAID. Believe me, i remember how it felt when everyday you have to clean up this holes and it feels like hell. I cried (and i am russian male 27 (23-24 that time)), cause it is actually painful. BUT you have to be 1) strong (you have no choice, sense of humor is actually helping), remember - you are not alone. This desease is not deadly, but it it life style affecting. I did not want to communicate with girls or do anything. And antibiotics are affecting as well, be skeptical and double check before taking to many of them. It's better just to clean up the wounds with hydrogen pereoxide or chlorhexidine and antibiotics cremes.

INSURANCE AND COSTS: I don't know which country you are in, hope your insurance cover that. You have to keep them clean.

MEDICATIONS. I tried antibiotics, roaccutane, homeopathy, autohemotherapy, ozone autohemotherapy and immune stimulators. THERE IS no proven medical treatment in the market right now. It might continue back, and in my case, after every treatment it came back and become worse. So i recommend you to be brave and talk to surgeon.

SURGERY. Is it painful? Will i have scars? Baby, believe, it is scary and painful, and it take some time, and probably you will have some scars. BUT FROM DAY ONE after surgery (with cuts and wounds) i felt so much more f**king healthier and happier. Bacterias are producing toxins to your blood that is why you feel exhausted. And it is stress. Don't postpone. You will probably end up with surgery.

LASER EXCISION. In US it's cheaper, and i think it works as well. Look at HS Institute.

MY CASE: For me - they did 5 surgeries. First - they cut all sinuses (2 armpits, groin and near butt) and left open. They did not cut out any tissues, just opened the wounds and cleaned before they healed. I was in hospital 14 days and under antibiotics and daily wound dressing changes. Then it was some time better and then everything came back.

I found the most leading doctor in Russia, the world-leading surgeon, and he said that it might be not HS, but actynomycosis (check on that), and i had vaccine (i would not recommend that, since the production has stopped), but the treatment is the same. Surgeon cuts out infected tissue and then leave open (US and Germany) or stitch (my case they stitched, but it's not the common practice and needs high level surgeon and hospital stay).

SEVERAL SURGERIES: they did groin, then butt, then both armpits, and month ago something left in groin.
If the area is large - one surgery is too big and recovery is energy-consuming.

HEALING: after surgery i did not have and hopefully would not have any HS in the area. Two years past from first surgery. But it have to be radically excised. In my case.

WARINING: DOCTOR QUALIFICATION: THIS IS RARE DESEASE, a lot heard about it but not a lot know how to cure it properly. SPEND TIME AND FIND THE ONE WHO ACTUALLY DID SUCCESSFUL SURGERIES. I HAVE BEEN SEARCHING IN ISRAEL, RUSSIA AND US. Find experienced one, and ask for patiens who have done the surgery (ask for testimonials).

In US by the way, there is HS Institute (Cleavelend if i remember correctly). It's cheaper, since the will let you go home and do wound dressings at home.

RECOVERY. Depending on the surgery, different anasthesia will be applied. If laser or other way radical excision with secondary healing (wound left open, it might be 2-3 cm wide and in my case 15 cm lond and 10 cm wide) - the wound heals 3-8 weeks. You can operate normal way after day 7-14. Just will be with dressings. After what you have been through - you won't be bothered by that, believe me.

OZON. For me - that worked, i used ozoned oil (only if you have someone who do ozone therapy around) dressings and it recovered much faster. As well potassium permanganate or prontosan are nice one.

HOW YOU WILL BECOME HEALTHY AND HAPPY AGAIN. You have to deal with it. You should find proper surgeon. He/she needs to be responsible for you till you are healed. If you do ambulatory (at home recovery after laser) you need to be checked. But actually, it's not that hard - clean the wound, change the dressing.
One by one, or all at once - you will do all areas.

SCARS. You are girl, young and probably pretty one. Unfortunatelly, you will get scars. Fortunatelly, you won't give **** about it. It won't matter at all. Believe me. And for boys you will be dating. For right boys, it won't matter. I've dated the girl with scar from open heart surgery. At the age 25-30 half of people have scars. It's sexy.

BEFORE SURGERY - HOW TO CARE HS. You need to keep it clean. In my case, it still have infiltrated sometimes before surgery, but i used syringe (you can take of the needle, or you can break it - it will break right in the begging and it will make a strong pressure of injections), then i put the syringe (NO NEEDLE), in the hole with chlorhexidine and pushed, it cleaned the sinuses, so no infection would get worse. IT IS PAINFUL, BUT - probably, you do not have much choice. It will make you stronger and better woman, trust me.
Then i used dressings - i used hartmann's sterilux or bandage patched it with plaster (use best you can buy - ominfix 10cm wide or something, try to use mininum plaster on skin you can).
Hand gels like Sanitel actually worked for some new boils.

HYGINE. What worked cool: Hibiscrub gel. Buy it and wash only by this. Or any other similar shower staff.
DO not use antipersperants. (i actually had my armit sweat glands cut out, so i always smell nice - bonus :). If you want to keep it clean - clean them with antibacterial tissues. But if you use dressings - they won't smell. After surgeries and recoveries you will still probably be able to be twice more accurate about your hygiene. That's ok.

RESOURCES. That is not much resources, i read most of the medical researches i could find around the world and forums. HSinstitute do CO2 laser surgery. Some hospitals make usual excisions. But what you would probably need to do - is to stop talking with therapist and start talking to surgeons. If i had done it earlier, i would have less area involved. People who did surgeries ten or more years ago say that they are healed.

PSYCHOLOGY. You probably feel unhappy. I felt so unhappy, that i sometimes was thinking that i'd rather be dead than ill. That is not correct. You can be cured, and that is you main goal right now. It might take long time. Be prepared for a year at least.

That is it. Good luck to you. You can write me here if you have questions.(you can email me if i do not answer here e r i c h k o f f. at (no dots or spaces).

And one more thing. Looking back, i remember how unhappy and miserable i was, how painful it was, and that i have scars now. Would i change it? No. It made me much happier person, i know i can do more, be more and live happier.

And one another thing. When i was ill I postponed having a girlfriend for two years. Then doctor said that i would need not one but 4 surgeries in 1 year period. I felt broken. I wanted to be healed and then to get a girlfriend. After change in my plans, i felt so wasted. And i felt like "screw it, i can't wait longer", and actually i found the girl who was okay and supportive with me and my body in plasters and dressings.
You seem to be bright girl who loves life, so i would advise not to postpone love, since it might take longer. Some boy might be scared that you have wounds, so screw him and find a better one. Anyway - now just imaging your 18th birthday, where you are purely cured, with character better than most of your girl friends around and with great strong story to tell. And yes, it feels great, when you will be able to do sports again.

Take care! Be strong. You have no choice but actively cure yourself (and that is good news).

Me again)

Food / alcohol / smoking affects it as well. For me, Coca-Cola, chokolate, coffe and sweets are catalizators (it get's worse), so drink more pure water, no coffee, less sugar. You can see which food makes worse which is not.

As well extra weight is risk factor. Be tight. If you have sinuses - probably you are limited in sport choices. Choose those which can do without worsening and sweating a lot.

If you have extra weight - change it

Research the disorder, I don't know to much about you, health wise or gene wise so it's hard to help you find things that will lessen the effect but you can do these things on your own by using Google and researching in libraries. Do not think that your doctor knows everything, they do not, take care of yourself, they are only there to assist you.

I wish you the best in your sugery