HS from the Philippines.
Posted , 18 users are following.
Hi im a filipina who also suffers from HS.
3 likes, 23 replies
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Notes on HS from the Philippines.
james46698 paopao
Posted
pagal_4200 paopao
Posted
paopao pagal_4200
Posted
Never consulted professional, becuase of embarrasment and i dont know which hospital or clinic to go since HS is rare case.
tj268 paopao
Posted
Hello from a sister Filipino! Please don't be embarrassed by having HS. It is more common then you think. I am a stage 3 and still debating surgery but unsure because the outlook isn't that great. I first diagnosed myself because doctors couldn't figure out what I had. Once I had proven myself correct I found a great dr, a dermatologist, and a plastic surgeon. Those would be who I would start with!
Wishing you a pain free day!
rickjaysontq tj268
Posted
claire03909 paopao
Edited
Hi Im also filipina I been diagnosed with HS too last 2014. When I try to seek another doctor he told me that im suffering from HS. I just wanna share my story and how im dealing these. I got my first operation same year 2014 in manila because I was staying there before, then after a month I go home to our province but the operation site did not heal, it
formed another boil in the site where there are stitches and I was misdiagnosed by my first doctor its not a simple boil. I find another doctor in our province coz never go back to manila that time the I told him my story then he told me im suffering HS that was first time I heard HS and since im in medical field the surgeon ask me if I know this skin condition.I dont have idea about it so I try to ask further regarding HS. I was really sad, and in mix emotion when I heard that there's no cure for HS and cant get rid of it. By the way my surgeeon opted and suggest to do cauterized and i agreed with him and trust him. He told me that just let the wound heal it self no need to close it by surturing. cause it my worsen. After the procedure he prescribed me with oral antibiotic and ointment mupirocin to apply to the site and just cover it with a dressing until the wound it heal and closed. After that I dont have any flare ups. Just recently again I notice again I have my flare ups after 3 years. The reason maybe why I have it again is that I start to pluck my under arm again, Im sweating a lot this time and maybe the weather here is humid thats why I sweat a lot... after few months of the procedure of cautery I went out of the country work abroad. I work for two years in riyadh althought its hot there but its not humid. So I dont sweat a lot and my underarms always dry... I dont pluck my under arms for almost long time and just recently I try to pluck because im already here in the country so no nid to wear my (abaya) traditional dress of women in KSA im conscious everytime I go out and wear my t shirt the hair in my underarm might visible in if I raised my arms. So im planning again to go back to my surgeon to consult so that it will not get worsen. So I suggest to you dont be afraid and go ask for help from the medical expert I rather suggest go to ob gyne first beacuse your beak out is in private part of your body. After that try to ask which specialized doctor best to go to if he/she cant managed your HS.... hope for your response soon. Hoping there are org here in our country that help use find ways to cure and get rid of this problem... godbless us.
ali18914 claire03909
Posted
hello, may i know what kind of surgeon is your surgeon? I'm considering to have operation on my skin tunnels but don't. know where i should start. i dont have any bumps anymore. i just have tunnels which left me less confident wearing sleeveless clothes. thank you!
tj268 ali18914
Posted
Hi ali, unless you are having a lot of outbreaks and severe pain I would think twice about the surgery! It is long and somewhat painful! I used a Plastic Surgeon which is highly recommended. Even though it was a big surgery I did it as an outpatient. When I woke they had placed a vacuum on my armpit which helped it heal faster. There is so much I wasn't told before about the drainage and how it will look post surgery so feel free to ask if you want to know. I can email you pics too. Also, with my wide excision surgery they grafted skin from my thigh. 4.5 months later I am still healing and was told it could take a year and may need physical therapy afterwards. I still have bad HS just not in that exact spot. Good luck from one Filapina to another 😃. Wishing you the best!
Friday tj268
Posted
hi TJ! may I know how much yung nagasto mo for the surgery including the skin grafting? I'm planning to have a surgery too. It has been ~4years since I had HS and I want it to be treated already because it's kinda making me lose my confidence a bit huhu
myla81998 tj268
Posted
Hi po! I just recently had hs and I wanna know kung until now successful po pa operation niyo po? wanna consider surgery po sana kaso di ko alam san magsisimula. And how much po yung nagastos nyo po?
tj268 myla81998
Posted
Hello, I am in the states and only speak English (sorry)! I am going on 2 years post surgery with a skin graft. It was done on my armpit with a graft from my thigh and done by a plastic surgeon. It stopped abscesses from forming there but moved to others instead. Now I get some pain around the surgery site. Personally, I would not do it again but others do have great luck. I would only let an HS experienced plastic surgeon work on you and would want a vacuum to help with healing. You must keep the grafter area out of the sun for 1-2 YEARS.
My insurance covered the cost so i do not know the charges but I would guess 8-12 thousand U.S. dollars.
Have you tried Humira? Many people are on this and swear by it. If you have no insurance and the copay is expensive they can help and only charge you $5 a month!
Also, are you checking your food triggers? Sugar and nightshades can really cause bad flares but for me heat and sweat are my triggers!
A lot of people also put Vick's Vaporub on sores to help them pop. So sorry you have this condition too!!! There is a Facebook page for Hidradenitis Suppurativa that is very helpful also!
Good luck and wishing you well!
angie38482 claire03909
Posted
Hi, I would like to ask how much does it cost for you have a surgery.
allen3ya2018 paopao
Posted
Do we have a patient group for Hidradinitis suppurativa? I am a research adviser from a pharma company who plans to bring in a clinical study for this condition.
Thank you
tj268 allen3ya2018
Posted
Yes there is such a group on Patient and I am a member 😃
rickjaysontq paopao
Posted
replying so i can just follow the thread. i was diagnosed with HS a year ago and got I & D operation. I was told that it was my smoking that triggered it. However, a year later, even if I quit, I’m starting to have flare ups again. I even changed my lifestyle and lost up to 40 lbs just because I really want to lose this.
I’m looking for a dermatologist who have experience in handling this case in Metro Manila. Any recos?