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Living with Hidradenitis Suppurativa

Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
edited May 2019 in Guest blogs

This guest blogger has asked to be anonymous; they share their story about their experiences with Hidradenitis Suppurativa and getting diagnosed.

a person under their blanket

Dealing with Hidradenitis Suppurativa has been challenging but inspiring at the same time, that I have come this far. It all started as a teenager about 13 years old, I felt a little lump which felt like a little spot on my inner thigh before I knew it, a few days in, it had widened and became painfully tender. I did not understand and was confused. I went to a family member who said it was a boil, and it will get better soon and will drain or reduce naturally. She told me to take some pain medication and use a hot cloth and place it on it throughout the day. I was so relieved when it drained but was horrified at the aftermath with the sight of pus and blood. The healing process was another thing, with constant bathing, cleaning and bandage changes, doing this before, during and after school was exhausting.

For a few months I did not get another boil, until I had another one on my armpit, which was there for a week and half, I was taken to see the GP as the pain was too much. I was given some pain medication and a box of antibiotics to be taken three times a day, for 3 months. I remember feeling nauseous and heavy from all the tablets. There was no real explanation from my GP than it was a boil (again never bothered to look it up) as a family member had informed me what to do and she had experience with it and no longer had them. 

Another week went by and I was still in pain, bent to the side with pain and worry. I eventually took a week off from school and went to A&E, and the boil was lanced which felt weird and painful. I went home and went straight to bed, some friends sent some cards, which cheered me up but the thought of missing classes and the list of homework to hand in worried me. I could not articulate what I was going through to friends or teachers as I felt  clueless and embarrassed.

After the surgery I had boils every other week, once one was drained another one or two popped up. At this stage it was unbearable, I could not wear deodorant and had some ointment that I had to use and dressed it. I could not participate in activities that I loved like performing arts and sports. I was bullied and talked about for not using deodorant after PE. While in tears every morning, I would spray some deodorant under my armpit and some perfume on my neck and clothes. Especially during summer, I knew the aftermath would be horrible, but I could not take the bullying and shame anymore.

Years later I was referred to a Dermatologist who told me I had stage 3 Hidradenitis Suppurativa; a long-term skin condition with multiple lesions, with more extensive sinus tract formations and scarring. She said there was no cure but to take the antibiotics and try to have a balanced diet. I felt horrible, from the coldness from the Doctor and my disbelief that this will not go away. I remembered my cousin and thinking how lucky she was not to have this ongoing pain. HS caused me to be extremely self-conscious and would rather stay at home under my blanket. After getting the diagnoses, I started to do some research on certain food groups and how it affected me, applied turmeric to the area when it flared up and tried to incorporate some exercise. I did see some changes; it was not as frequent for several months and then out of nowhere another would come by. Nowadays, I don’t get new flare ups as much anymore, but the existing ones do flare up, due to stress or if I eat certain things. Dealing with my anxiety I tend to comfort eat which does not help, instead I try to find alternatives or try not to eat as much of it – like pizza or cookies *long sigh*. Although HS has been horrible and still make me cry at times. I am proud of myself for pushing through University, work and trying to be the best I can be every day.

 “Sometimes the smallest step in the right direction ends up being the biggest step of your life. Tip Toe if you must but take a step.”- Naeem Calloway 


Can you relate to their story? Please comment and share your experiences below.

 


Replies

  • Tillymint1Tillymint1 Member Posts: 7 Listener
    I can't relate to this personally but would like to say how Brave + Strong willed I think you are + would like to wish you all the best with your future .
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope community team

    Thank you for sharing this. I didn't know much about Hidradenitis Suppurativa, but I'm really glad you've found ways of managing it a little better.
    Senior Community Partner
    Scope
  • RossiRossi Member Posts: 1 Listener
    I get this as I am bed bound and thought they where bed sores.
    I got my husband to get the gp to have a look and they made out I was wasting thier time.
    I do have a solution for you though! I hope it helps.
    A friend of ours is a nurse and she advised getting some magnesium sulphate. You can buy from any chemist. It is like an old fashioned pultus. As soon as you feel a bump apear put on the sulphate with a waterproof dressing on top. It draws the bump and stops it from becoming infected. You have to leave the dressing for approx 3 days, then as soon as it bursts change the dressing every day.
    I have found mine cleared up quickly with this. I hope this helps you.
    I totally understand how painful they are when they become infected. If they do you can get some antibiotic cream from the Dr's. I just get mine on repeat prescription now incase I have a break out, so I always have some in the house. 
  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Thanks to the guest blogger for speaking on this condition with us, all the best :)
  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @Rossi how are you doing today? Thank you for sharing this with us. I am sorry to hear about your experience with your GP. I'm glad to hear you have found the magnesium sulphate helpful. 
  • Jokeysmurf40Jokeysmurf40 Member Posts: 2 Listener
    I can totally relate with you. I have had HS for over 10 years, I don't get one at a time I have clusters, I can't use deoderant or even shave as this makes things worse. This condition rules my life a long side chronic pain and so many other conditions. I don't go out I can't wear nice clothes, I cover up even in summer I am covered in scars and tracts. I don't let people close to me, and will never be intimate again, I think this is the first time I have shared this, as I don't know anyone with this condition. This has really affected my mental health and I have tried every drug going but nothing helps I am at a loss of what to do. But I will try magnesium sulfate as I have not heard of this before. Thank you for speaking out as I don't think I would of done.
  • mrbuttonsmrbuttons Member Posts: 221 Pioneering
    I had a friend in uni who had this and she thought it was a kind of std at first as her mother didnt take it seriously and she had no one else to turn to.eventually she was referred to a dermatologist by the campus gp and her condition improved with antibiotics.
    Well done to the original poster above for sharing their experience of this little known but distressing condition.
  • krysrsrio2krysrsrio2 Member Posts: 4 Listener
    edited May 15

    Hi, @Antonia_Alumni

    My name is Kryss and I want to come out here to help anyone suffering with this terrifying disease. Hidradenitis Supparativa has beeen the worst thing I ever experience in my life. How heartbreaking it is as a 14 year old  when you go to the doctor and the doctor tells you that they have no idea what it is that you have, so they refer you to a dermatologist and then the dermatologist don't know neither so she/he refers you to a surgeon to get it removed. My mom decided to stop going to the doctor because no one ever gave us an answer and it was just a waste of money. I was recommended to a surgeon but I ended up not doing the surgery because it wasn't guaranteed another boil won't grow, so as I got older I did more and more research to find out that I had HS. 

    I was horrified to know that I had this disease because they told me it was long term and that there was no cure. As a teenager I was bullied and terrified because I couldn't wear deodorant because if I did my boil will get worst since it was an open boil bleeding and pus coming out most of the time of the day. My mom use to tell me that it was only a boil and with a hot towel and draining the boil it will get better but once I did that the boil will flare up the next day again. I will cry everyday and I wanted to take my life, It was tiring at this point because the healing part was the hardest part; changing band aids, cleaning it, and constant bathing. This was a tough journey knowing that as a teenager you aren't able to play any sports because you have painful boils all over your body bleeding and pus coming out and your friends looking at you discussed at you. 

    After so many home remedies, antibiotics, pain, and suffering, I am 28 years old now and HS free for about 8 months now. I finally found someone that helped me and my sister who also had HS since 10 years old his website is [Removed by moderator - advertising link], He had HS all his life and he helped me fight HS and I am living my best life now. I am not afraid to get naked in front of my husband, I am not afraid to wear bikini, I am pain free, I don't have blood in my underwear, I don't have blood on my shirt. Also check out his youtube channel called ( HS relief ) where he gets deeper into HS. You're not alone. This is someone who suffered the same pain we have suffered. PLEASE CHECK HIM OUT HE HAS HELPED SO MANY OTHER PEOPLE WITH THIS SAME DISEASE AND HE CAN HELP YOU BE HS FREE TOO! YOU DON'T DESERVE TO LIVE WITH PAIN AND BE ASHAME OF YOUR OWN BODY, WE ALL MATTER AND DESERVE TO LIVE A HAPPY LIFE. GOOD LUCK AND MANY BLESSINGS TO YOU AND YOUR FAMILY. 

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