Hidradenitis Suppurativa (H.S) is a rare long-term skin condition that features small painful lumps under the skin. They typically develop where skin rubs together, such as the armpits, the groin, between the buttocks and under the breast. The lumps may break open and smell or cause tunnels under the skin.
Dissecting Cellulitis of the Scalp (D.C) is a chronic inflammatory disorder of the scalp characterized by painful nodules with purulent discharge and hair loss. This condition is also classified as a scarring alopecia, primarily affects men of color and can be associated with hidradenitis suppurativa.
In my intro blog I briefly shared how I was diagnosed with Hidradenitis Suppurativa aka H.S in Feburary of 2015 but this nightmare actually started long before that....
Back in 2012, my husband and I had just had our second baby girl. Everything was going great, I was recovering well, until I noticed I had an extremely itchy, dry, flaky scalp. None of the drug store stuff worked so I went to see my dermatologist and he prescribed me a medicated shampoo. It eased the itching but my scalp starting to get really tender to the touch so I stopped using it.
After a while, my scalp went from being just tender to forming one small cyst like pus pocket. It was extremely painful, so painful that I couldn't sleep on that side of my head. After that one came another and another until it became a cluster of cyst's in the shape of a "C". Some would drain and other's were hard to the touch.
With the cyst's also came hair loss, so with my symptom's and the help of Google I came to the conclusion that I had postpartum alopecia. I went back to my dermatologist and he came to the same conclusion and decided to give me cortisteroids injections. After the injections, I noticed some cyst's would shrink but some actually got bigger. He then decided to do a biopsy of the largest one, but the results came back to show nothing but inflammation. He had no other answer but to continue doing the injections but I wanted a second opinion.
So, I went to see another dermatologist, who pretty much gave me the same treatment which included another biopsy but this time prescribed me an antibiotic and scalp cream. However, when she saw no improvement, she referred me to another dermatologist. By this time I was frustrated, disgusted, depressed, and almost broke from all the doctor visits, prescriptions and medical bills, but I took the referral and made my appointment. I figured this doctor must have been amazing because I had to wait almost two month's to see him. Thankfully, during the time of waiting she had me on antibiotics and pain medication.
In the midst of everything that was already going on with my body. I noticed during the time of my menstrual cycle I would get large painful boils in my groin area, most times they were so bad that I couldn't walk. Can you imagine that while trying to care for two kids?! My appointment couldn't come fast enough to say the least.
Finally, the day for my appointment came, I arrived 45 minuets early and I don't think it lasted any longer then ten minuets. He looked at my scalp and the medical reports from my previous doctors and told me exactly what was wrong with me. He diagnosed me with H.S and D.C and told me that I needed to keep an anti-inflammatory diet. He prescribed me 2 different antibiotics and highly recommended that I have laser treatment and/or surgery to have the tunnels/sinus tracts removed from underneath my scalp.
I listened to everything he said and left feeling like a huge weight had been lifted. Lord, know's this was what I'd been praying for and finally after all the appointments, failed treatments and misdiagnosis I finally found a doctor who knew what he was talking about and had experience in treating my condition.
As soon as I left the doctors office, I filled all my prescriptions, but I was really looking into what a anti-inflammatory diet was. I didn't want to have any surgical procedures done, and I knew all the horrible side effects of being on antibiotics long term so changing my diet was top priority. In doing my research was when I found out about "The Hidden Plague: A Field Guide to Surviving and Overcoming Hidradenitis Suppurativa" by Tara Grant. The information in this book has helped me tremendously. I highly recommend it to anyone dealing with an autoimmune disease.
Learning the correlation between the disease and my diet was the start to overcoming it. I learned that I have a sensitivity to gluten, wheat, dairy, eggs, and refined sugar. When I consume any of these or too much soy my body reject's it and can trigger flare up's. The elimination diet that I did is what really helped me learn my triggers. Every "body" is different so what may cause flare up's in me may be different for others.
I highly suggest trying an elimination diet if you notice any bad reactions to your body after consuming certain foods. Our bodies are always communicating and sending us warning signs, it's when we continuously ignore them that our bodies start to break down. I know for me, I've always had issues with dairy but had such an addiction to cheese that I refused to give it up. It took me going through this horrible episode to finally listen to my body and stop feeding it the very thing that was harming it.
As of today, I'am not 100% healed, I still have a few bald spots, and every now and again if I eat something that may have been cross contaminated with one of my triggers, I'll flare up, but for the most part I believe I'm doing pretty good to no longer be under a doctors care. No more injections, shots, creams, or antibiotics (Praise God) my regimen includes taking 2 tablespoons of coconut oil a day, 1 90 mg zinc tablet, and following a healthy anti inflammatory diet.
I would like to thank Dr. Iltefat Hamzavi for specializing in H.S and being the first dermatologist to tell what was wrong with me and give a correct diagnosis; and also I would like to thank Tara Grant for writing her book and helping SO many people like myself who have been battling this for so long with little to no improvement.