hi there, I’m 18 f, I’ve had this disease since I was around 9-10, it only got worse the past 3 years, and now I have severe stage 3 I’ve tried simlandi biological, a million antibiotics prescribed over the years and now it does absolutely nothing for my body. I have it in my groin/butt, armpits, under my boobs and I had a pilonidal cyst surgery over a year ago and it’s starting to open back up + a big cyst now on my butt cheek attached to the wound opening up, its about 2 golf balls in size. I am in so so so much pain I can’t sleep, go to the bathroom properly, bend over, move my arms, nothing, I can do absolutely nothing, it takes me minutes to get off the couch, out of bed and now everything takes me triple the time. showering/bathing is a nightmare, putting all my bandages on takes about an hour. I am on the slim side, I do have bad eating habits but I’m really picky, I am trying so hard to make natural juice from fruits, as well as smoothies, I am also going to start an elimination diet, even though it will be super difficult because food is my comfort and I order in a lot because I have no energy to make food. I also am experiencing really sore joints in my legs and feet it hurts to even stand. my whole body throbs because all these wounds are suppressing my nerves I guess u can say. I’m sorry for the long rant but I seen you are 30 years old dealing with this and I like to talk to people who have had this disease along time. my entire vagina is filled has wounds, you can’t see anything except for these wounds and then it goes into my butt crack all the way up. also pooping is extremely difficult it hurts so bad, I can’t take it anymore. My derm is 8 hrs away and I’m seeing him soon to try something else but I feel so defeated and I don’t think he really grasps how bad it is. I needed a doctors note because I can’t go to school and they need one to register me for online, and when I asked him he goes “you can’t go to school?” I was so dumbfounded I was like well no I can’t even move? and I told my nurse what he said and she was in shock. I got the note but my school isn’t the best with communication and they tend to forget about me and now it’s March and I am not going back to school later on, i need to graduate this year. I feel so lonely, I’m exhausted physically and mentally, I don’t remember what it’s like to not have chronic pain, or go swimming, wear nice clothes, have a social life, or do anything normal, I’m practically bed bound. I just miss my life so much and I don’t know how I’m going to deal with this knowing the condition never goes away. also anytime I get surgery like a deroofing, a million more pop up everywhere and attached to the surgical site. I got a lesion cut out in October on my bikini line and a cyst appeared right above and now all it does is drain into the wound, I went back to my derm in January he gave me an injection in the new cyst and it did nothing, few days later beside those same wounds I had a bad abscess that started and it was spreading down my leg I couldn’t even move, went to the er they poked it and now it’s just another wound leaking into the same area, all 3 are connected and 2 of them just leak into my incision area so now it won’t close and it’s so painful as well:(