I was 40 when my HS symptoms started and was very fortunate it took only 11 months to receive my diagnosis. A general surgeon I saw ordered a MRI and became the first doctor to diagnose me with HS. Following the scan, I was sent to a dermatology surgeon who confirmed my diagnosis and suggested a plan of treatment.
Before I knew I had HS, I’d arrive in hospital and have my “boils” lanced and packed, resulting in missed work and a long healing process. The pain from HS Disease I’d say was agony; it’s the kind that stops you dead in your tracks. There is also the constant worry when you have an active sore of what happens if it breaks and blood is everywhere? I’ve been in that position and it was taxing, to say the least.
To concur some of the challenges of HS I have found the need to prepare ahead. When I travel, I bring a little kit of “What if supports”. Another challenge was feeling really unattractive to my husband, despite his pleading the opposite. It took some time to come around and realize how this is not the worst thing that could happen.
I’m very fortunate to live in Canada and am able to manage my HS with the help of free health care and access to legal cannabis. I believe knowledge is power, and after lots of research I’ve been topically applying CBD [a form of medical marijuana with no THC in it] for a year now. I found a case here in Canada where a woman had petitioned her local government for drug coverage to treat her HS.
As part of that case she brought up using CBD, and after looking into this further I thought it was worth a try. I make a salve out of it, and after applying it for the first time saw results within a week. My sores closed, stopped draining and the inflammation decreased significantly.
My own GP wanted no part in CBD so I had to look elsewhere for a prescription. I had no idea it would turn my personal beliefs about cannabis. I’m forever thankful and would encourage anyone with HS to try this option. When I have the beginnings of a flare, I apply straight oil and it’s been amazing.
Along with the CBD I take a vitamin regime of calcium, magnesium and vitamin D. This was recommended by my dermatologist, and feel it’s been wonderful and has added to my success.
I’ve been a year without an outbreak.
Of the 3 stages associated with the condition I was advised I was nearing stage two. I have been without major symptoms for a year, and my specialist was really impressed and felt optimistic. If I could give someone newly diagnosed with HS some suggestions for their future it would be to;
“Exhaust all your options. Try everything people throw out there and find what works. What doesn’t work for one, may work for another. Don’t lose yourself in this diagnosis, you were a whole person before this diagnosis and you still are now. Don’t suffer in silence, talk to people about it.”
I’ve found three people in my circle of friends who have similar issues as I do and alerted them to HS. They thought it was a recurrent boil or infection. Given the area of their sores they often suffered through symptoms and pain needlessly. They saw my dermatologist and subsequently 2 were diagnosed. Keep talking and own your journey.
I don’t know that I would be any different without HS in my life. It does not define me or determine my worth!