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| 24/7 Feels |
So I'm gonna start this miserable, wet Saturday with a subject that is equally as miserable for me (boo hoo). This is quite a personal post and will be written in the style of brain vomit but I'm hoping this will help someone. I apparently suffer from the condition Hidradenitis Suppurativa (they could have at least done the decent thing and made it easy to pronounce/ spell) which in basic terms leaves you with lovely big boils and abscesses errywhere that sweats, so I'm talking your pits, your groin, your bum and under your tits. Lovely. If you want the more medical description then have a click here to the NHS page. It is a horrible condition which I am 99% sure I inherited of my dad, and really has a go at degrading your confidence.
So what has this meant for me? I was only diagnosed last year when I told the dermatologist this is what I have and they then apologised for not telling me sooner (I have been every 3 months to the dermatologist since I was 14, I am now 21...) what I have suspected since I started puberty.
I started to develop boils and 'tracks' under my skin once I started my periods, these started when I was 11 so 10 years of no answers was a bit shite. These started occasionally on the old foof and arm pits. the boils used to come up, I would manage to relieve the pressure (you know, a flood of puss, nice) and they would disappear. I then had one under my arm which appeared and never disappeared for about 3 years. I am going to insert a picture of me on my prom night, where it is clearly visible.
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| This is what you need on prom night isn't it? |
This eventually got cut out, and I now have a good 2 inch scar on my right underarm, which is pretty much hidden now and you wouldn't see it unless you went looking for it. This was when I was about 17, so I still had to wait a couple of years after this picture was taken to get the chop. The boil itself started to tunnel from the circle you can see on the picture to the dark line just underneath this and created a head at the top and the bottom which was just hideous. After this got cut out I haven't had another arm pit one which I don't quite understand but am very grateful for and touchwood it doesn't happen again.
Yet lets jump to the rest. when I was about 17 the boils migrated to my lady bits and stayed there, and decided to form a little country of their own I think. This little formation decided to grow exponentially after I lost my V plates, which you know left me with the most horrendous paranoia that I had herpes, so thanks body for that (I don't, lets clarify this before I get murdered by my aunties). The boils have never left. I have never not had a boil on my undercracker since I was 17, sometimes its one that is dying and sometimes its a complete and utter fucking clusterbomb of boils and tunnels that leaves me close to tears in pain because I can't sit down. The boils go through phases of ferosity and staying power, and I currently have 2 which have been sat there for the last two years, torturing me.
I am well aware of the fact I have it quite mild compared to a lot of the images on Google (don't look if you're squeamish) but to me it has really halted a lot of things in my life. I wouldn't give the most lovely boy a chance because I was so paranoid about the fact he might one day have a chance to look at my foof (brill). I have never been in a committed relationship for this reason as well. I am beyond paranoid that someone would take one look, even if I had explained the issue and think I was some contagious beast (which I'm not, you can't catch HS). It also makes me worry about having children, as I would not wish this on them in a month of Sundays. I worry about my future, and the fact that it could escalate up to the Google image levels (which I pray to the Lord baby Jesus it doesn't). I think the fanny fear will always be there with me and I will never be 100% comfortable with the old sexy time because of this, which I find so sad for myself as I should be able to enjoy sex without any paranoia that something may burst or rub up the wrong way and hurt me, or appear where it shouldn't and stop me having sex altogether. It quite frankly makes me feel dirty and unworthy of any physical time because I'm so gross and abnormal, which is completely the wrong way to look at something I was born with and have never had any control over. I am constantly having to remember I am a person and my terrible skin shouldn't dictate my life.
Medication: I am currently not on any full on combative medication for this, as quite frankly I don't think my derms know what to do with me. I have been on everything but Roaccutane (and you would have to knock me out for 6 months for me to even consider that option, no thank you.) So I am currently on Erythromicin 2 tablets twice a day which is a lot of meds. I am also on Dianette and have been for 4 years, and personally do not wish to come off as I did once for 6 months and I have never had such horrific skin all over my body. I wash with medical wash that surgeons use to wash their skin before surgery and apply Clindomycin to my groin twice a day. Clindomycin has been the one to do the best job at keeping the boils at a moderate size and not taking over my entire vagina size. I am dairy intolerant and have been off dairy and thought this might help my skin out but hasn't had any remote affect anywhere :( I know there is more out there but these are the options currently open to me.
I also currently have something called a Pilonidal Sinus. Again I'll let you click here to see what that is. I have had a lump under my skin in that area for my entire life, and when I sat awkwardly it would come up and start to raise hell for me. Then in about Nov 2014 the sinus arrived, this was just like a spot that wouldn't go away on my booty which bled a bit. I wet to the doctors and I was referred to a surgeon. After I went to the surgeons appointment 2 days later the sinus swelled up like you wouldn't believe, I couldn't sit down and had the biggest head I had ever seen on it. I managed to relieve this (and oh baby Jesus the relief was indescribable) it went down, but has been coming to see me on a weekly basis ever since. I'm not sure why now it has changed into a pussy machine (ha) but it has and I have been counting down the days until my operation. These tend to be linked with HS because quite frankly I just need more cysts! I am getting this operated on next Friday and will probably have a blog about the whole experience, not that I will know what is going on as I will be knocked out yeah baby.
So I now appreciate this whole blog doesn't probably make sense any more but I just wanted to talk about it as it is my main body demon and I absolutely fucking hate it. Currently there is no cure for this, but things like losing weight are meant to help (tell that to my crisp habit please), and a lot of people seem to have been helped by laser hair removal which I would love but might have to win the lottery first.
I hope this rambled mess of a blog post could help anyone battle royaling with HS and make someone feel not quite so alone and an alien with a spotted dick ;)
If you have any comments or anything please don't be mean as it is a chronic condition that I and many others have to live with. Also if I've most likely forgotten to mention anything please let me know :)
Some useful links: The HS Trust: http://www.hstrust.org/
British Association of Dermatolgists: BAD
Twitter Accounts: The HS trust @Hidradenitis
Cheers,
Love, Hev
xoxox
P.S. Anyone future boyfriends reading this feel lucky you get to be my boyfriend, I must have a lot of trust in you :)
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