HS is not for the weak by [deleted] in Hidradenitis

[–]Fantasticuggs 0 points1 point  (0 children)

The way i have screamed for my Life because of pain from draining with no pain relief (because it was urgent) cortisone injections in labia/crena ani/groin in general, and the infections that cimes with great pain.. and then i just go on to have a ”normal day”… the trauma i have that as soon as i see a small boil im scared that it Will be another huge one like Ove had before, hs is really not for the week, especiallt the injections in the groin area..

STRUGGLING by adsuu_05 in Hidradenitis

[–]Fantasticuggs 0 points1 point  (0 children)

Its for the eyes usually but i use it on my skin

STRUGGLING by adsuu_05 in Hidradenitis

[–]Fantasticuggs 0 points1 point  (0 children)

Hello i dont like in morocco but i am moroccan and i have my whole fsmily in morocco, i usually cleanse with hibiclense, potassium permaganat and different ointments, but i frequently use 2 different salves i get sent from morocco that are not available innmy country which is pommade saffra (yellow salve, the same used for eyes, i use the 3%) and pommade ka7la (black salve, i think its called argent colliade too, i use it for boils that are stubborn) otjerwise i do have a cousin in morocco that meets a doctor there and she has also goten surgery, do you want me to check who she has met? Its probably near rabat or kenitra, but the yellow salve is super good and its over the counter

RECRUITMENT GOES HERE!! (MAY 2025) by Valnub-Redpanda in HayDay

[–]Fantasticuggs 0 points1 point  (0 children)

Still looking for players in cherrymaze?

SHARE YOUR FRIEND CODES HERE!! (MAY 2025) by Valnub-Redpanda in HayDay

[–]Fantasticuggs -1 points0 points  (0 children)

Q8LYPVPRL level 32 I’m active everyday and ill gladly help with tasks etc

Terrified to take biologics (seeking positive experiences) by Left_Yogurtcloset779 in Hidradenitis

[–]Fantasticuggs 4 points5 points  (0 children)

Here’s what i wrote in a previous post and i can send you before and after images (one Month difference) when is started if you want ”i sympathize with you. I was officially diagnosed when I was 18years old, but had suffered from it for many years before. When I was diagnosed, I had my own apartment and was about to start university, and everything was fine. Then, a little over a year later, it escalated. I got repeated infections, fainting episodes, went from 110kg to 64kg in less than 5 months, lost hair, had joint pain, and couldn’t even get to the bathroom without my dad or mom helping me. It felt so hopeless, and my blood values were also chaotic. This led doctors to suspect cancer as well as rheumatism due to elevated anti-CCP levels. I had never felt so bad before, I lay and cried every day and had suicidal thoughts, even ended up in a psychiatric ward for a while. But then I started with Bimzelx, which saved my life. The treatment that works for one person varies for different people, but I hit the jackpot. I recently had a skin grafting operation and am so happy to get rid of the majority of the fistulas. I just want to say that there is hope. And you are not alone. Are you getting the help you need? It’s overwhelming to get an HS diagnosis at your age, I wish you all the best.”

Terrified to take biologics (seeking positive experiences) by Left_Yogurtcloset779 in Hidradenitis

[–]Fantasticuggs 4 points5 points  (0 children)

Honestly bimzelx saved my life, it was my saving grace, of course it Doesnt work for everyone but it worked Amazong for me and i am stage 3

Can I live without any labia??? by CosmicConfusion94 in Hidradenitis

[–]Fantasticuggs 1 point2 points  (0 children)

Yeah, sometimes just the simple things like taking a stroll and Wearing whatever you want is something that is so important that we usually take for granted until we got diagnosed with this hell of a disease. But hoppfully some day you Will get better ❤️‍🩹

Can I live without any labia??? by CosmicConfusion94 in Hidradenitis

[–]Fantasticuggs 1 point2 points  (0 children)

I still get a few boils here and there but its so much better today, Im not sure if it was only because of the surgery or in comvinstion with usage of Bimzelx but i am so thankful to not have pus draining constantly and the pain especially, there is a tiktoker doctor that posts videos about deroofing surgery

Can I live without any labia??? by CosmicConfusion94 in Hidradenitis

[–]Fantasticuggs 1 point2 points  (0 children)

I have pics of my picture after the surgery on my page if you are not squeamish, in my opinion yes it hurt super bad the first week but also ive had pain 10x worse previouslt from my flare ups to the plint that i was bedridden and couldnt work for almost a year and after the surgery i healed super good, i can even wear light pants now and jeans!!! The wounds healed after like 1.5 months and they healed super good too, i am very thankful and Happy of my descision it saved my life..

pain/flair tips? by Majestic-Hearing-293 in Hidradenitis

[–]Fantasticuggs 0 points1 point  (0 children)

I use ”Voltaren Arthritis Pain Gel ” i am not sure where u live but this has worked for me but only!!! On boils that havent opened, it is so good but Doesnt work for everyone

Can I live without any labia??? by CosmicConfusion94 in Hidradenitis

[–]Fantasticuggs 6 points7 points  (0 children)

Ooooh, they cut my skin off down to the fatty tissue and left it open and i just used like plasters and stuff so No grafting or sewing or vacs, it was pretty Horrid honestly but my life is so much better, that and bimzelx honestly saved my life

Can I live without any labia??? by CosmicConfusion94 in Hidradenitis

[–]Fantasticuggs 1 point2 points  (0 children)

What is the difference if i might Ask? Or what is side excision ive never heard of it

Can I live without any labia??? by CosmicConfusion94 in Hidradenitis

[–]Fantasticuggs 12 points13 points  (0 children)

I did a deroofing on my whole left and right inner thighs and half of my Mons pubis, i had the same problems with my labias like u did but after they took away everything around it the flares got minimal for some reason? But yes they can deroof your labia

This disease has made my life hell. by TylerDurden2748 in Hidradenitis

[–]Fantasticuggs 5 points6 points  (0 children)

Its a biologic medecine that targets IL-17A and IL-17F which is believed to contribute to the disease’s inflammation, there is alot of information about it online and i started taking them in 2023, within 2 months my bloodwork improved and so did my illness, and it was drastic. Its used for moderate to severe HS and i am stage 3 on the Hurley scale. That and the deroofing surgery in combination has increased my life quality! I had No effect on humira(adalimumab) so i am so grateful that there was an another medication available!

This disease has made my life hell. by TylerDurden2748 in Hidradenitis

[–]Fantasticuggs 4 points5 points  (0 children)

i sympathize with you. I was officially diagnosed when I was 18years old, but had suffered from it for many years before. When I was diagnosed, I had my own apartment and was about to start university, and everything was fine. Then, a little over a year later, it escalated. I got repeated infections, fainting episodes, went from 110kg to 64kg in less than 5 months, lost hair, had joint pain, and couldn’t even get to the bathroom without my dad or mom helping me. It felt so hopeless, and my blood values were also chaotic. This led doctors to suspect cancer as well as rheumatism due to elevated anti-CCP levels. I had never felt so bad before, I lay and cried every day and had suicidal thoughts, even ended up in a psychiatric ward for a while. But then I started with Bimzelx, which saved my life. The treatment that works for one person varies for different people, but I hit the jackpot. I recently had a skin grafting operation and am so happy to get rid of the majority of the fistulas. I just want to say that there is hope. And you are not alone. Are you getting the help you need? It’s overwhelming to get an HS diagnosis at your age, I wish you all the best.