I actually can’t believe it’s been almost 4 years since I was diagnosed with HS (Hidradenitis Suppurativa) I spoke about it here, here, here and here.
It feels like yesterday when I sat in that dr’s office finally getting answers. It also feels like yesterday that I spent an awful year suffering through the medication. I do think it was worth it. The HS isn’t gone completely but it has definitely improved. It’s much easier to deal with the outbreaks and they don’t seem to last as long as before. I can live with it even though it is still painful and just a nuisance.
It seem to be harder to deal with the consequences of the treatment. I spent a year on Roaccutane from 1 March 2009 to 23 February 2010. The dr told me what the side-effects were and that it was impossible to know how severe it would be. Usually it is given to teenagers and I was almost double the age of the average user. He said the side-effects could either be much less or much more severe. I really hope I had it more severe because it was a year of hell and I hope the ‘average user’ doesn’t suffer as much as I did.
The biggest thing left from the treatment are the scars. I knew there would be scars after the surgery but I had scars anyway so I figured what the heck. I don’t even notice the scars myself. I actually don’t even think about them and I didn’t realise that they were all that visible anyway. Over the holidays someone mentioned to me how “bad” my scars look and I was almost shocked to hear it. Not because of anyone seeing it but because I didn’t realise and I don’t think about it. I know they look a little worse than normal because it is pulling in some spots. Almost like small pieces of caught fabric. It doesn’t look great and sometimes feels a bit funny. I am so used to it now though so it really doesn’t bother me as much.
I also still don’t have all the feeling back in my armpits where the scars are. Sometimes when I shave I can’t feel it and end up shaving in front of a mirror so that I can see everything. It feels super weird but once again I am so used to it. Shaving on it’s own is another problem. It’s not easy. The pieces where it stretches like caught fabric is tricky to manoeuvre. I also can’t use hair remover products or waxing because the skin is so sensitive. Also, the scars themselves were almost stretched and that skin is also quite thin.
When I do have a lump or something under my arm it’s more than likely quite close to or on top of one of the scars. I think that is what makes it even more painful. I am just lucky that they don’t stick around as long and they don’t get as big as before.
I’ll never forget the feeling when I woke up after the first surgery. When i woke up they had tucked me in and the blanket was over my arms and tucked on the sides. As soon as I woke up I was in so much pain and I couldn’t move my arms (because of being tucked in). The first thought I had was oh my gosh, they’ve cut my arms off!!!! It’s funny when I think about it but it was damn sore!! Also, you don’t realise how much you use / move your arms until it is painful to do so. Usually when I have lumps it is of course painful to move and use my arms but depending on the position of the lump it is only in certain areas. With the surgery I had both arms sliced open from one side to the other. One arm in 4 places and the other in 3. It was damn sore. Walking was hard because you don’t expect your arms to move as much as they actually do.
I also still struggle with my hips. While on the medication my hips took so much strain. It felt like they were being pulled apart with every step. Getting into the car was so painful. Walking anywhere was painful. It has improved by tons and walking isn’t so painful anymore although in certain positions I can feel some of that strain is still there. It’s manageable and only on some occasions do I curse the medication 😉
All in all I guess the treatment and surgery was worth it. It is not 100% gone but there is a definite improvement. I am now also trying to establish if anything in my diet affects it at all. I have not noticed anything specific but I am always aware of it when I eat something different. I’ve been hearing about some hormonal connection as well and I have been wondering if it worth following up on that. Maybe next time I see the dr I will ask him about it. I am still just so relieved to finally know what it is, that there is a name for it, that it isn’t just me. It also doesn’t rule my life anymore. It can only get better right……
**Image sourced from Google Images
Shite I just went to the wiki link you gave to read up about it and maaaaan it really sounds SO sore!!
But you’re so brave to go for surgery. It sounds facking scary to me and then being unable to do things because we take for granted how much we use our arms. It’s like WOW.
Thanks. Not brave. It was needed. Fecking sore but an improvement is an improvement and I’ll take it!!
Thanks Hun!
xx
Dude!
HS is awful! It only took my Dr(s) close on 15 years to diagnose me 🙁
Thank Gd I only had to do 4 months of the Roacutane (although I think I may have to do another round at some stage), and that was actually for another skin condition on my face, getting rid of the HS was ‘just a bonus’ according to my Dr.
I used to get them in my groin (and am terribly scarred!). I had my first one in 4 months last week and it was small and only lasted about 5 days so the Roacutane definitely worked.
Here’s to healing and getting better and a big ‘F YOU’ to HS!
DUDE!!!!
It also took my dr(s) 15 years to diagnose me. I actually just change to a new dr and he took one look and knew exactly what it was. Was a big day for me to finally know what it was.
I use to get it in my groin my boobs and under my arms (armpits) and am also VERY scarred. Although the arms is where they started and was also most severe. I only get them about once a month now and yes, mine also last about 5 days and are much smaller. Definitely an improvement. For quite a few years I did not go through one day without having one somewhere, most often a few at a time. It’s awful!
Thank you so much for your comment. First time ever talking to someone who knows about it let alone has it!! Feel less alone 😉
yes, F you HS, be gone with you!!!
Hi Michelle, thank you for sharing your story and for being so candid. I think it is a good idea to try to follow some of the principles of an anti-inflammatory hidradenitis diet and let us know if you really notice any improvement, especially since you can compare it now with traditional treatment options. Best of luck!