It all started in my armpits. 1 small yet very painful one here or there. Then they got bigger. The same spot would reoccur and the periods between the flair ups become non-existent so basically constant. I had deroofing surgery on one armpit and it hasn't come back in that spot. Next it moved down south sporadically. Then so often and close together it seemed like they were always there. I kept getting the same ones and then on top of it new reoccurring spots. Then it got out of control. I had surgery on 18 spots down below under anesthesia. All came back a month later. Surgery didn't work down there. Had 1 new stubborn few connected in my armpit so went back and had surgery again. That one was rough. I couldn't even give myself a shower and It took 3 months to heal. That area hasn't come back for going on 2 yrs. I am loving that!
Now I have stage lll Hidradenitis down below on lower stomach, pelvis, groin, legs and butt. Large areas of skin everywhere. Since it's progressed so much surgery would be Huge with full areas taken out. Not just spots. Needing to be fully taken care of.
I thought I'd share some feelings that can be relatable to an HS sufferer or for teaching understanding for others.
Here goes, into my life as stage lll. Imagine being in so much pain putting pants on or taking a shower brings tears. Or sitting or standing or especially walking brings such excruciating pain every step or when you move the wrong way you moan so loud the neighbors can hear. Imagine Everytime you walk more than a couple hundred feet it causes numerous new painful lesions that prevent daily activities for weeks. Since this happens you choose to just not do the walking. You still suffer though. Imagine having to pick and choose and ration daily activities. I ask myself daily, "if I do this I will be in pain for at least a week or longer. Is it really worth it?" Imagine having to cancel so much with friends and family because you can't walk without excruciating pain and that makes you lose friends. Imagine usually only being able to make plans the day of spur of the moment. These lesions can pop up between sleep and when I wake up. I can go to bed at 10pm somewhat ok and wake up at 8am hardly able to move. Imagine not being able to exercise to lose weight because you can hardly even walk to the bathroom without pain and exercising just causes more that are worse. Imagine only being able to wear certain clothes such as yoga pants. You see a cute outfit and think, nope I can't wear that. Or a bathing suit, nope. Imagine living by the beach but not being able to go swimming because it causes more. I pushed myself through it and went swimming once this summer. Caused more. Imagine not being able to make dinner for your husband after he works all day. After his long day he has to come home and take care of you. How guilty you feel because of it. Imagine avoiding even getting water or going to the bathroom because getting there hurts. Imagine looking at yourself and your many leaking wounds and scars and being so grossed out and sad you don't look in the mirror anymore. This disease has a lot of psychological effects too. Feeling so ashamed that you can't even look yourself in the face to put on makeup. Feeling so gross you don't want to be naked ever. Imagine feeling so depressed because your life is gone. It's been stolen from you. Wondering how the heck did this happen. I used to be fine before I got this at age 28. Used to do tons of activities and walking 1+ miles every single day. I am now 38. It's been a Fast track whirlwind. This condition is so embarrassing and has such a misunderstanding that you hide it from everyone. Feeling so fake for everyone when they say how are you? I end up saying, "I'm doing ok." It's a lie. Imagine going to the Dr and so many Drs have never even heard of it that they have to Google it. Then when they and everyone else Google's it, it says small pea sized abscess like pimples when they are actually golf ball size and you have 10 in one area and they're in so many areas. Having 27 at one time. Plus, they're connected by a spaghetti bowl of "tunnels" of pus and painful inflammation under the skin. It's like a constant rumbling volcano of pain everywhere. I'm constantly at numerous Dr appts every month and probably have to go to the E.R. every other month. I just stop telling people because it's so often. We are completely consumed. It has taken over our lives. If you see a picture online thats probably the only time I've left to drive to watch the sunset for 20mins. Or the 1 other time I push through for a couple hrs to go somewhere. Other than those couple times in a month I don't do anything except going to the grocery store. When I do go somewhere I have to calculate how much walking is involved. Some things are completely out of the question. Also, Imagine being judged and people think it's an STD and keep far far away. Then theres surgery. It only sometimes works. Even if it does help it may only give you a minimal period free and only from that one specific area. Could be a month or if lucky a year or 2+. Hopefully forever but you never know. It's a gamble and recovery is so harsh and takes months or even a year. There is no cure and no known cause but just because there's no cure it doesn't mean there are no treatments to try.. it's all trial and error. It's just sometimes they never ever work for some people. Nothing has worked for me. Some of the side effects of treatments are devastating and a huge risk and can even cause cancer. It's rare but still. They reoccur in the same spot every time plus new spot locations pop up that then continue to reoccur. Imagine having to know that this could be your life forever until a cure is found. Not as many people are researching for a cure like other diseases and conditions. For me it's only progressed and gotten worse. For some people it doesn't. This is my life almost every damn day. I do have days that are better than others. I have to take it one day at a time. Sometimes I just have to make it hour by hour. What means the most is chatting with friends and family on the phone or texting/messaging or on the Internet because being out is too much and it's been so long you feel socially awkward. People will just never understand the true struggles unless they've gone through it themselves. Most people can't even imagine hurting bad every single day. Even people who see it first hand and change your bandages still don't fully understand everything. Especially like the constant mind alterations, depression, self judgement and of course the pain. I still would never even wish this for my worst enemy. Take a second thought when you see people out and about or at the grocery store. You never know how hard it was for them to just get there or what they're going through that day. Be kind, love one another. I try to have hope but this is the dirty truth of how I feel a lot of the time.
Hidradenitis is horrible for me but I also have herniated and bulging discs in my back, interstitial cystitis, fibromyalgia, IBS and endometriosis which all also cause many limitations and pain all the time.
I don't want to be sad or depressing or sound hopeless... just the true deep down feelings of my HS and what I'm really doing. What it's really like to be in my shoes since I always hide it from most people. Only 9 family or friends know that "I don't feel good sometimes" but not the extent of it. I''m just looking for understanding. I always hide.
I am a very positive person most of the time on the outside. I smile and laugh. I thrive off being there for people and caring for them and lifting people up in my groups. This is what keeps me going. This is what makes me happy and forget my troubles. Just to make someone smile. It's hard sometimes but I fight through the pain and bad feelings and try to make the best of my situation. If you've suffered HS and ever felt like this I'm sending you a big hug.
I have decided to take the plunge. I honestly don't care about the rare but bad side effects at this point. Quality of life is everything. If I can move about day to day it's worth it. Staying couped up not able to leave the house very often or move about is not good for me. I am now taking Humira. It's a biological medication that I inject myself with once a week. I've had training and have been doing well. So far it's been a week and I can see a little bit of hope. Another problem of it though is that it makes it very hard for me to fight illnesses, colds or anything. It lowers my immune system. I am willing to give it a chance. Thanks for listening.
After being on humira for 6 months I have to say I'm in awe! I have almost completely healed up. It started immediately after 1 day and eventualy My thighs, groin, and butt. Gone! Even the scars are lightening. I have had 1 on my butt come and go but I hardly noticed it. Also, one in my armpit on my surgery scar comes but never opens and is just sore. No serious pain. It's amazing that I can walk again. I will say it's hard to get that voice in my head to change. You know, that one that says, "you better not do that it'll cause more to come" but I'm working on it.