Naomi has made me the proudest mum in the world. Her story “Through my eyes“, has completely melted my heart. She makes me so proud. Naomi, (and my other 3 children, Ellie, Leo and Oliver) are the main reason I will never give in, no matter how hard it ever gets. I fight this for them, I fight this for my husband, (my soul mate, the love of my life), and I fight this for me. I wanted to tell my HS journey, although how will I ever compete with Naomi’s beautifully , well written story that comes from her heart.
I will give it a go. This is my life, this is my HS.
Through my eyes as a HS warrior
What was this lump? Did I do something wrong to get this? I was 16 and I was confused but most of all I was embarrassed. How could I tell anyone that I had this huge lump on my groin? So, wanting to keep it to myself (like many people do), I got a razor blade and I cut a hole in the lump. Oh my gosh, the pain was like nothing else, but it was ok, it allowed this ‘thing’ to drain. It soon cleared and I never thought any more about it.
When I turned 20 I fell pregnant with my eldest daughter (Naomi), and this is when I knew something wasn’t right. I was getting these ‘lumps’ everywhere and more frequent. I decided that I had to see a doctor! After all going to see a doctor would put my mind at ease and would help make it better, right? How wrong I was. I was told it was acne and it would get better in time. I was too afraid to go back again, after all I felt humiliated enough, to go to the doctors to be told I just have acne. So I dealt with these ‘lumps’ myself as and when they came up. But after time, enough was enough, I couldn’t keep dealing with this any more, embarrassing or not I had to do something. I made an appointment with a new doctor, Doctor Sarah Lourenco. Bless her heart she made me feel able to discuss all that had been happening. She referred me to a dermatologist, and still to this day I can remember her saying to me, we will get to the bottom of this don’t worry. Simple words but meant the world. There was hope!
My first appointment with the dermatologist came and I had a lot riding on this! I just had to know what I was dealing with. I went to my appointment and I saw Dr turner, it was at this appointment that I was diagnosed with Hidradenitis Suppurativa. Wow, What a name. I couldn’t say it never mind spell it. I was soon started on one of many medications. Since that time I have been given endless tablets, creams, antibiotics, you name it I’ve probably had it. All the standard medications for people with HS. Nothing was working. Feeling deflated I had tough choices to make. I was given the opportunity to have a operation by a plastic surgeon, where they would remove the worst areas of my HS and all the tracking that had formed over the years. I had nothing to loose, only something to gain (hopefully).
I had extensive surgery on my groin and the back of my legs, it was a huge ordeal to go through, never mind the amount of pain that it brought with it. The operations went well. I was not suffering anymore. MY HS WAS GONE and I was over the moon.
BUT then, my world came crashing down 3 months after the surgery, the HS was back. I was in bits. Had I not had the support of my husband Rob, my family and friends I wouldn’t of got through this time.
HS has been a huge part of my life for 16 years. I have had more operations than I can count, for my HS. I’ve suffered depression for many years, which I think mainly is because of my HS. How can I not feel this way when I spend nearly every single day in pain, having to constantly go to see my doctor or surgeons and all the other specialists in between. The pain medication helps, but it never completely takes the pain away.
HS has changed me as a person. HS has become my life. It has become my prison. The sadness when I literally cannot take my children to the park, or chase them around and all the other things that just comes natural to being a parent. Over the years I have lost friends and my world has become a pretty lonely place. I guess always having to cancel plans, or saying I can’t meet up, or I am in hospital AGAIN, must become a bit of a bore. Because I know it is a bore to me.
It’s hard living with HS. The hardest thing I’ve ever gone through and I wouldn’t wish it on anyone.
One of my biggest supports over the last 12 years is my Doctor – Sarah Lourenco. Sarah, if you ever read this I want you to know that you have given me so much strength to carry on. You’ve been there for everything for me, from referrals to surgeons, to listening to me cry in your office about being fed up of my HS. You’ve helped me pick my self up and given me the support to keep going. You’ve been a incredibly huge support to me and I will always be forever grateful to you. Thank you!
I’m hoping that one day they find a cure for HS. It would be pretty life changing to have a day without pain, or fighting infections etc. I live in hope that my children will never have to go through their very own HS journey. I pray that all my ‘HS friends’ that I have made over the last 5 years stay safe, healthy and carry on fighting this awful illness.
HS may knock us down, but we will always get back up! We are HS patients but more importantly we are HS Warriors!
Please also take a moment to read Louise’s other stories:
You asked what’s wrong…I will try and explain – Louise’s Hidradenitis Suppurativa Patient Story
Through My Eyes – Naomi’s Story – Daughter Of A Hidradenitis Suppurativa Patient
Through My Eyes As A Hidradenitis Suppurativa Warrior