Hidradenitis Suppurativa: You Can Have your Life Back!

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Hi. My name is Catherine and I have been suffering with HS for over 23 years. They first started out as red bumps in the vaginal area. After repeated infections my doctor surgically removed the tissue. That didn't work. The lesions started appearing in the same location but on the opposite side. My physician didn't know what these bumps were and in 2009 he sent me to a dermatologist. She took one look and told me instantly that I had hidradenits suppurativa. I was in shock. I read up on everything I could find. I was put on doxycycline for the next 4 years and was miserable. The anti-biotic would cause me to have yeast problems and subsequently I was put on diflucan to deal with the yeast. It was a never ending problem. Now my red bumps were rupturing and weeping. This was new for me.

I went online to read as much as I could about HS. I read medical information and blogs. It was highly informative. There was a commonality of humiliation and pain, depression and the desire to feel normal. One entry caught my attention. It was about a woman who had suffered from HS and finally went to a Naturopath. He gave her two food sensitivity tests,an IgE and an IeE. She found out what foods she was allergic to and immediately removed them from her diet. She is now HS free.

I couldn't afford to go see a Naturopath and so I decided to start on a diet of protein (chicken) and salad (basic lettuce,cucumbers with olive oil and vinegar), vegetables such as green beans, squash, carrots, english peas,broccoli, cauliflower. I removed eggs, dairy, gluten which is in bread and a myriad of foods which include flour. I also removed Nightshade veggies and fruits.

Once I was stable ...which took about a week, I added eggs. I had no flares. That food was safe. I then added dairy products, again no flares. I added beef and fish with no problems. I was anxious about adding flour/gluten back into my diet as I was sure that this was the food group that I was sensitive to. However, after introducing gluten back into my diet there were no flares. That left me with only one group to test and that was the Nightshade veggies and fruits. This group includes: white potatoes, tomatoes, peppers including paprika (not white or black pepper), gooseberries and goji berries. These foods have alkaloids in them to fight off bugs. Interesting?

So, I added foods from this group into my diet and ....I FLARED!! I finally had the information that I needed. I immediately went through my pantry and removed any and everything with red pepper, tomatoes,and paprika. Paprika is everywhere. It is in hot dogs, mayonnaise, mustard and seasonings. If you eat processed foods...beware as it is in everything. I learned to read all the labels of everything at the grocery store and even double check it once it was in my pantry.

I am in remission and I intend to stay there.My lesions are flat. All that exists are scars and I can live with that.

I am certain that HS is the body's response to a food that the body is allergic to. It is not due to "not being clean enough" or due to being overweight. It will only respond to antibiotics for a short term and then those fail to work. Topicals don't work either. I do believe that once HS comes into your life, it takes over everything that you love. I was a victim to this disease for too many years. I have now, taken back my life. You can change your diet and be free. I recommend that if you decide to find out what foods you may be allergic to in order to be free from this disease that you consider incorporating these supplements: turmeric (wonderful anti-inflammatory), zinc, vitamin c, a probiotic, and green tea for itching It is a natural anti-histamine.

I hope you find this helpful. God Bless You

34 likes, 68 replies

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  • Posted

    I've suffered with HS for over 35 years - I'm  now 61.  My specialist said that HS was directly connected to hormones and that after the menopause it would go away.  He was right.  I have had no problems with HS ever since.    This of course may be of no comfort to those who are in their twenties and thirties.   But HS is a very nasty, prolonged disease - I've had countless operations.  Cutting out high fat products such as chocolate can help.   Sorry I can't give more positive reply.

     

    • Posted

      Thanks for the sharing.

      Could you tell more about surgeries? 

      I myself had around 6 and no i think a new sinus has formed and thinking if i need another one. 

      Did surgeries help? I had no outbreak in armpits ever since the surgery (2 years)

    • Posted

      I've heard this about menopause before. Your post makes me hopeful that someday soon this horrific HS experience will come to an end. I had my uterus removed last year & wish that my OBGYN (who also suffers from HS) would've known or shared that information with me. I would've definitely had my ovaries removed too. Are you still free of HS symptoms?

    • Posted

      Hi I'm very interested in what you've put in the sence I have wondered if my flare ups are connected to my monthly cycle, if so would u say going on the pill may help ?

  • Posted

    I am currently in menopause and take bio-identical hormones.  My HS may or may not be related to this.  I didn't have it before this period of my life.  I don't think that hormones and menopause are the only solution.

     I am looking into food intolerances.  There is a company that tests food intolerances at the cellular level.  It's called the Alcat Test.  Has anyone here done it and had success?

  • Posted

    I have had this complaint vertually all my life. I went to the doctor many times and was told all sorts of incorrect things. Even my gynacologist said it was caused through ingrowing hair follicals when I was in labour! I am now in my 60s and only found out yesterday that there was an actual illness called Hidradenitis suppururative. This I was told at a girlie lunch! (not quite sure how or why I brought up the subject other than I was in discomfort , yet again!) Came on line today to check it all out and found your comments. I think you may have hit the nail on the head with allergies as I do have other allergy issues. I am now going back to the GP to see if I can be allergy tested.

    Thank you for your input. A relief to know I am not the only one with this complaint!

  • Posted

    Hi Catherine,

    I have been suffering from HS for the past 20 years with no clue, repeatedly told by doctors in different countries that it was a bacterial or fungal infection. I can totally relate to yours and other people's posts above when you guys talk about the doctors misdiagnosis. I have undergone numerous such incision procedures to drain the pus, countless prescriptions of antibiotics (jeez, my body must be a wreck inside) and I've even had two of my sweat glands removed through surgery for the same reason. Yesterday, I came across HS by chance when searching online for associated symptoms.

    I almost cried reading the matching symptoms and innumerable suggestions to cut out gluten, dairy, soy and nightshade veggies. I am vegetarian, have been one all my life and so I think it would be near to impossible for me to convert to being a meat-eater. I was nearly devasted looking at my bleak options for food to adopt. Your post gives me a glimmer of hope. I really really hope that eliminating nightshade veggies is all is needed in my case as well and I sincerely hope that I am not gluten sensitive. I can't thank you enough for taking time to share your experience. You really made a big difference. 

    Best wishes for a healthy and happy living!

     

  • Posted

    OMG I was in so much pain and felt like crying when I found this post. Catherine thank you! I am booking a body allergy test first thing tomorrow. I have has hs since before I can remember being 9 years old, I'm now 24. I have scarring and painful flare ups on thighs, groin, buttocks, hips and underarms.

    (Notice they're quite near lymph nodes? Like the body drained the toxins to those areas)

    Hopefully this will solve my issues, I really pray it does. I will also get the supplements!

    Being vegan I have to take supplements anyway. I'm also a great believer in natural healing.

    Are you still in remission? Would like to know about your scars!!!!

  • Posted

    catherine435 is right! it is diet diet diet. It may be different for everyone, for me it was sugars and the starchy foods that produce them. Look at the labels and cut out everything with more than 1gram of sugar to start, it only took me three weeks to see a vast difference. Our food is killing us. And I was a food junky folks, not too over weight but lost forty pounds just from watching my sugar intake. HS free 5 months now. God bless you all

    P.S. spent alot of money and hope on doctors! It never helped I am affraid

  • Posted

    I think I will go see a naturopathic doctor next week.y diet is awful. Thanks Cathetine.

    ,

  • Posted

    Thank you Catherine as I sit here in my garden researching tumoric and MS I came across this and it was very good insight struggling with Unknown boils under my arm 3 yearsnow and no doctor gas been able to diagnose it until last wewk, when i fi ally got an answer this desease has taken over my social life , im a very active person i love the beach and out doors and have not been able tu o do so because of embarrasment, constanly cleaning my surroundings to protect my family d ince i thoght it was mrsa, well anyway i will try all of your suggestions. Fingers crossed and btw first thing goes is the paprica , thanks
  • Posted

    Hi Catherine,

    Thanks for the above message on HS. 

    I am from India, My sister is suffering from HS since 4 years. I would request you let me know are you fine after taking food preacutions.

    Request you to please let me know, if I can connect with you. I really need to talk to you regarding this problem, as this increasing incase of my sister. Earlier she 1 underarm and then both and now started in her thigh area as well.

    I really request you yo please let me know, if I can connect with you ver an email or or by phone call.

    This is humble request from my side.

    Hope to receive your reply soon.

    Many Thanks in advance.

    • Posted

      May be page member can suggest you better idea if you are still online on this page. He is also from India

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