Beauty and the Beast: The truth of hidradenitis suppurativa: A blog about why deciding to get surgery need not be a bad thing.
It was the summer of 1999 when I first noticed a few lumps in my groin. A few months later they were still there. My GP had them tested and they were diagnosed as non-malignant cysts which needed no further treatment. That was that, or so I thought. Some years later the lumps returned, and this time they were painful. There seemed to be one or two appearing every day. I was referred to a skin specialist who diagnosed me with hidradenitis suppurativa (HS).
HS is a condition which affects the sweat glands in the armpits, groin, buttocks, under the breasts and around the genitals. The sweat glands become blocked and swell up into small sores called abscesses. These can be extremely painful and can sometimes burst open and weep pus. They are often itchy, but if they burst open they quickly become infected and can take weeks to heal over.
My skin specialist told me HS was incurable but could be managed with antibiotics, but their effectiveness would reduce over time as my body became more used to them. I took his
I have been thinking and worrying about the text for my post-op blog… What I could say, what I could write and what I wanted to write. And the problem is that I am not sure it will be read by many people. That it will reach anyone but my own friends and family really. But still I want to write this because if my journey can help just one person out there, then it’s worth it for me.
Hidradenitis Suppurativa (HS) is a strange disease. It’s a disease that starts out as a tiny spot. A tiny spot that quickly grows into something much worse. It can become large lumps of inflamed skin, filled with pus and blood. Something that you don’t want other people to see under your clothes.
But because your skin doesn’t look that bad, no one understands how bad it feels inside your body. Your family think you are fine, your friends don’t understand why you are not going out as much anymore and doctors seem to think you are overreacting or exaggerating your symptoms when they finally give you an appointment after months of calling them…
I am a woman that has hidradenitis suppurativa. This is a horrible skin condition that people would rather not talk about. People who have it usually feel too embarrassed to talk about it, or even see a doctor to get help. A teenager with HS sometimes stops going to school and suffers from depression. My life was very impacted by this affliction.
I was in my early 20s when I got diagnosed with HS, but I had it for years before that. It started on my butt cheeks and then moved up my butt crack and to my vagina. The lumps and boils were so painful that I could hardly sit down without pain. It was hard to get around without being in pain too, because the condition causes you to have a lot of scar tissue, which hurts to walk on or put pressure on in any way.
I am now 35 years old and I have been living with this condition for many years now, but I finally decided to do something about it after another really bad break out that took months of healing time. I wanted relief and so I went online to search for treatment options for this type of condition as well as ways that people deal with it emotionally because having an ugly body takes its toll on your self-esteem and
Hidradenitis suppurativa is a chronic skin disease. The symptoms are painful boil-like lumps, which usually appear around hair follicles. They can be very small, or as large as oranges. The lumps leak a thick pus and blood.
The disease is not contagious and it is not cancerous. It can affect anyone but mostly affects women between the ages of 20 and 40. It can also be called acne inversa, Verneuil’s disease or apocrine hidradenitis.
I had hoped to write this blog post a couple of weeks ago, but I have had lots to do, so here it is today.
I have just returned from a lovely weekend in New York, a trip that I really needed after the events of the last few months. This will be quite a long blog post as I have so much to tell you about, but please bear with me as it will hopefully be worth it.
The title of this blog post is “Beauty and the Beast,” because that is exactly what I feel like at the moment: beautiful on one side, beast on the other. My beautiful side is my face, which has healed very nicely from surgery and looks normal again, but my beast side is my body, which is still healing from surgery and looks terrible! You can probably guess what this blog post is going to be about.
It’s been 4 months since my first surgery and 3 months since my second surgery. In total I had 10 surgeries on my back area and two surgeries on my front area (including one revisional surgery). It’s been quite a journey since then and I am still recovering.
Physically, things are slowly getting better. The wounds on my back are slowly healing and are not hurting anymore. Only
So, my surgery is scheduled for next week. I’m surprisingly excited about it. I feel like a weight has been lifted off me just by making the decision to go through with it.
I’m still slightly apprehensive, though. I’ve always been so terrified of getting surgery, especially in the stomach region. The thought of being cut open and having all this foreign stuff placed inside me has always made me terrified. I think that’s why I’ve been so hesitant to accept having this surgery done.
I also keep thinking about how awful HS is and wondering why I didn’t want to get rid of it sooner when there was such a simple solution available. What kept me from doing it? Why did I wait so long?
I guess the main reason was that I was scared of what others would think of me if they found out that I had this condition. They would think I was ugly and horrible and disgusting. They would treat me differently because of it. But why does that matter? It shouldn’t matter what other people think about you because you know your own worth, right?
Well, that may be true but it doesn’t mean that you don’t care
I wanted to write this blog a few months ago, but I held back for fear of offending anyone. Despite my current confidence, there are still days when I feel self-conscious about my appearance. The first time I posted a picture of myself on here it was something that took much deliberation and courage.
Today however after speaking with several people in the HS community, I have decided now is the time to write this post.
There is much debate in the online world of HS sufferers as to whether or not surgeries are considered “bad”. For those living with HS it is important to know that there are treatments available that can help you feel less self-conscious about your appearance.
While there are many people who are content with their HS related scars and do not feel the need for surgery, there are also those who feel differently and do wish to address their scarring. As one HS sufferer said, “I love my body, it’s the scars I hate.”
Surgery should not be frowned upon by the HS community but seen as a positive way forward for those who choose to proceed down this path.
So what does surgery involve? Well in order to remove scarring from our bodies we need to undergo reconstructive surgery. This involves cutting out