Hidradenitis Suppurativa: You Can Have your Life Back!

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

Hi Catherine...great that you had remission.I wanted to know if you are still continuing to be in remission?

Hi catherine ,your post just chnage my life,after 5 day without alkaloids im in remission,like a miracle.

Thx you so much and im working to spread the information

wish you luck

peace and love from canada

Very interesting reading thank u

Hey i am suffering from hs really bad I would like to talk to you so please comment if you can

I have just posted up a discussion and this thread has really intrigued me.. Think it's time to go through my cupboards ;-) 

Catherine thank you so much for helping my wife and family of 5. My wife is 31 and has delt with this condition since 17 yrs old, probably thinking and feeling she was disgusting "what a horrible feeling for such a beautiful, well put together woman" I can not express enough gratitude with you sharing such a tragic story. We "mostly her" will go to sleep tonight feeling like there is hope, again THANK YOU so much for being such a strong person sharing your story. Again time and time again i have felt only like a number not like a human of god and you now inspire us to write back we want to know if you are still in remission and are looking for your best advise. We are going soon as possible to purchase TUMERIC to start the healing process. I owe you more than you could emagine, again we thank and luv the info... Be strong Live Well... TTYL

I think it's fantastic the amount of self-researched information online about HS and potential remedies. I also think it's disgraceful how sufferers are left to sort it out themselves. I've only been diagnosed recently and have only really been having problems for about 18 months, which is nothing compared to many others stories I've read on here. I'm going to try going to a Naturopath but I suspect most of us suffer for the same reasons, and that is an allergy to nightshade vegetables and fruits as catherine aluded to. I may try cutting out these first before paying a fortune to a "professional". I was also shocked to find that a HS charity only had £4k in donations last year. Surely there's more that could be done, it may be the most simple of triggers. Thanks for your story Catherine, it is very brave of you as it is a terrible, embarrassing disease that really deserves more funding and research.

Hi Catherine, 

This post is so inspirational!  I too have been thinking about gluten free as a treatment option.  How are you feeling now?

Thanks for sharing! 

I have also had HS for years. Tried skin antibiotics, steroid shots, laser hair removal, surgery and even autoimmune drugs... spent lots of money and cried myself to sleep. 3 months ago, after reading this and another blog about nightshades and HS, I cut them out. I too, am in remission! Praise God! The first two months of trying to eat nightshade free, the cysts I had would open up every few days. They would not grow larger nor would I get new ones... just the old ones would open up and have a raw spot which was much better that more cysts and inflammation but I wondered why this was happening? After 2 months of my no nightshade diet, I read the ingredients on shredded cheese (which I probably ate at least 2 meals a day). Shredded cheese contains POTATO starch! Aackk! Who would have thought? It keeps the cheese from sticking together! After buying block cheese and shredding my own, I have not had any cysts for the past month! My cysts are no longer coming out or opening up! No inflammation!  Thank you for sharing this life changing article! I went bike riding with my family last week for the first time in YEARS! THANK YOU!

Interesting read!

I'm currently on a gluten and dairy free diet due to digestion problems mainly but I am intrigued to try this to see if it helps with the HS.

Thank-you

Wow...that was very informative Catherine...I have been suffering from HS going on 30 years.. just got diagnosed with this last year! Due to the shame and pain I only brought it to a few doctors attention.. Until last year when my new doctor happened to see another outbreak I was having at the time says oh yea that's HS. She gave me some paperwork on it...My goodness all this time I honestly thought I was a freak and nobody could understand what I was going through emotionally,physically, mentally not to mention my self esteem, it was a never ending nightmare.I have been reading, studying, and learning ever since.My goodness what a relief it was to know other people actually did know how I was feeling inside.They could relate.That was a gift all in itself...but anyway thanks for sharing your story.It makes sense and I will definitely look into your theory!!...Thank so much and God bless you!!!

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.

 

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?

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!

I have also  just replied to Catherines post and like you have had this complaint for years (over 40!)Without diagnonis. Are there any things through the national health that has helped you since your dianosis?

Please read my full post on Catherines page.

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!

 

Thank you Catherine. Very interesting.

Yes i am i cry every night like now i have one n i can barely walk i gotta constantly miss School (college) because of this the medicine is not working i just want surgery done because nothing seems to work i just want m life back

Blessing. What about soaps, candy, bread, and soft drinks.