Hidradenitis suppurativa
Ok, I am going to talk about something that is something I have never ever ever wanted to talk about. I am embarrassed by it. It hurts me, both emotionally and physically. Socially too in some ways. I am almost wanting to make this post private, because not really everyone needs to know this about me. I'm disgusted by it. It makes me almost want to cry before I even start writing about it.
But truth is... now that I know what it is, I know that what I am is not this disgusting person who seems to have poor hygiene. I am actually quite normal, but I have a disease.
So, to make a quick point, I just want to say now, that if you have something nasty to say to me about this, please just do me a favor and click away now. I am doing this to document this for myself in case the medical need arises, to raise awareness to others, and to also just really kinda vent, because this IS my journal.
Now this disease isn't something I can give to anyone. Its just me. Its because I'm just so lucky. However, because of what it is, it embarrasses me to to wear revealing clothes, it makes me fear being physically close to anyone, and it also hurts my sex life.
I have this disease, which is not actually formally diagnosed yet, but I know that it is what it is, and its called Hidradenitis Suppurativa, cleverly nicknamed HS. Basically, it is something that affects different areas of the body that has sweat glands such as the armpits, under the breasts, and in the groin area mostly. Sometimes it also affects the face, which it does affect me there on occasion too. It causes more or less very painful swelling boils, that range in sizes, mine mostly being about the size of a bean, and then they can burst with drainage and cause further pain or possible relief. Some people end up with god awful open wounds. Fortunately mine hasn't gotten that severe. If you want to read more about what this is in details, wikipedia pretty much breaks it down very well: http://en.wikipedia.org/wiki/Hidradenitis_suppurativa
Now that I have given the medical facts, I'll tell my story somewhat. Mine started affecting sometime around.. oh.. I'd say late teens. My first major points of realization is when I was at Ferrum when it affected me terribly under my arms. I would get these painful boils under my arms not knowing what the hell they were from. I thought it was because of an allergic reaction to the deodorant I was wearing, but switching them helped nothing at all. It got to where I couldn't wear anything because of the busted boils being exposed and putting on deodorant would burn horribly. I remember staying in my room for some days not wanting to leave because I would be crying from the pain from them, just laying in bed with my arms above my head not knowing what the fuck was wrong with me. I don't get them in my armpits anymore thankfully, but if you were to look under my arms, I do have horrible scarring underneath them, which is one reason I do not wear anything sleeveless for fear of raising my arms up and showing them.
Now, there have been other areas that this has affected me somewhat. Under my breasts, particularly the right one, I do have some additional scarring. A few years ago I also had a large lump in my right breast that was about the size of a golf ball, that was tested by doing a biopsy, and I only wonder if this has something to do with that as well. There was a horrible open wound under my breast at the same time that had an opening about the size of a pea at the same time. This was a few months after I had my WLS and I was on a routine visit with my surgeon. He looked at it, and had no idea what he could do about it, other than use some Silver Nitrate swabs to burn the exposed area to try to get it to heal. Now I don't know if you have ever dealt with that stuff but that hurt like HELL! It was like setting this already in pain wound on fire. However, after it was packed, and the drainage occurred over the next month and a half, the wound did finally close up and that is the cause of one of my biggest scars under my right breast.
Another place that has been affected and I have a lot of scarring is around my tummy, mostly between the rolls that is there. And now that I have lost weight and where the skin lays, that is where it is most affected. Now, its not nearly as bad as it used to be there, but I do have some scarring here as well. It has actually caused some odd formations of scaring, one in particular that I have lovingly called my hammer loop. Most carpenters or guys in general know what a hammer loop is, because they will have them on their pants. I have skin that has healed itself and it has caused this "hammer loop". Its almost comical. Almost.
Occasionally as I have said before, I do get these on my cheeks as well. I have one currently. You can tell that it is not a zit, but more so one of these boils. They don't last nearly as long as the others do, and once they do burst, they go right away. I also don't have scarring from these. But you can tell the difference because of the size and the pain, which isn't comparable to a zit which is very central. This can almost cause the whole side of my face to hurt, and if touched wrong it can almost bring me to tears.
Now here is the hard part. The part that makes me scared to write about this. The part that embarrasses me even more. The part that makes it hard for me to want to go to bathrooms in public places, and it makes me scared to have relationships with men because I simply have anxiety about them noticing this issue with me. I can't have sex with lights on, I don't like to show myself. Even with my ex husband, I didn't like him to see me naked because of this. It hurts me deep down. So, yeah if you haven't figured it out, this is quite bad in my groin area.
Now, if you have already gone and googled this, you will see that there are some really fucking disgusting photos out there of people who are plagued with this. Mine isn't nearly as bad as some people. I don't have big exposed wounds like some people have, poor souls. I more have red bumps, some that are leaking, and lots of scarring. It almost looks like someone could have taken a knife my inner thighs and .. well the area that you would find the pubic hair. And mentioning that, (woo you are learning sexy stuff about me, but not really) that is why I do keep myself shaved because it seems that its not nearly as bad when I keep myself groomed completely. And, YES... I do wash. All the damn time. Probably more than I should because it might just be irritating it more than helping it.
Now the thing is, to me this really weirds me out, because this isn't exactly dinner conversation to explain to a potential relationship. "oh hey, btw, when we get in bed later, don't think I have some sort of STD if you see some red bumps" .. or "Hey, I really do wash myself clean and have good hygiene, so if you smell something down there that seems off put, believe me its cool" ... yeah. That's not going to really fly. When I do get in a sexual relationship, I really have this high anxiety and can't concentrate on enjoying the sex at first simply because I am so afraid that I am going to turn him off because of it. I likely won't even let a guy .. well.. (ok if I have gone this far I might as well keep going) go down on me unless I feel like I can trust them to not freak out on me about it. I ... yeah. *sigh*
Just to throw this in here, this is really scaring the hell out of me as I write this, knowing that certain people will be able to read this. I have family that has access to my online profiles, and I have people I have flirted with, and I have ex boyfriends, and I have female friends who will understand. All of this is freaking me out because I am so damn scared of people judging me for this. I am in tears just putting down these words, but I still want to just educate people and let them know that... yes... this is out there. And yes, this is my way of letting you know that it exists. And .. yes.. a part of this is a relief for me to finally get this out and talk about it too.
I am setting up an appointment to see a dermatologist about this. I have gotten some suggestions for someone local and I am going to try to get this taken care of. It has more to do with taking some antibiotics, possible diet changes and just trying to deal with the emotional issues and depression that it causes as well. It also has to do with hormonal changes as well, so I'll prolly look at what I can do to help with that. I don't know if possibly going on birth control to stop a period would help or not. I don't even NEED birth control pills because I got the Minera IUD about a year and a half ago, but I will do what I need to do.
So.. there you go. I hope that ... this has done some good. I feel slightly more relieved getting this out. I hope that maybe this will do some good. I know that a couple of my friends have said that they have too had similar issues, so maybe they will also get help like I am.
Please don't judge. ;~;
BTW, for those who do want to comment, and maybe have something private to say, I have screened all comments. *nods* Unless you want it exposed, which I will do. *shrug*