Dismissed and Denied
I had my first boil on my bikini line when I was 19. I was very skinny, fit, and healthy. I went into the walk-in clinic for it where they thought it was a sebaceous cyst and went to open and clean it out, only to find a nasty odiferous puss-filled lump. Unknowingly, I was pregnant and doubled in size over the next 8 months from 90lbs to 190lbs. By the time my baby was 3mo old, my entire cleavage was an open, oozing, painful sinus track that spread under my very large bust. It was horribly painful to shower, it hurt every time I moved and every time I nursed my baby. My doctor said that I wasn’t washing and drying well enough and that it must’ve been fowl breast milk causing the odor. I had never been unclean and I had to keep a rolled-up washcloth between my breasts to keep them from crusting together. I just decided to go to my dermatologist. They attempted two biopsies because my skin disintegrated with the first attempt. This doctor said that he thought I had a flesh-eating disease that he normally only saw in severely obese people and that they would contact me with the results. By the time my baby was 7mo, I’d lost over 80lbs and my tract was slowly scarring over. I had people approach me all the time asking if I’d had open heart surgery from how horrible it looked.
Getting a diagnosis...finally
Fast forward 4 years. I was very stressed, switched jobs, finances changed, life changed. I gained 40lbs over a few short months. I started having numerous boils on my thighs and groin and thought it might’ve been related to my chest years earlier. I finally had to do something when I kept getting written up at work for not following dress code because of the pain I had from the clothing getting stuck to or rubbing against my sores. The dermatologist office had switched ownership 3 times since my biopsy in 2013. I went in to find that I had H.S. and no one ever called to give me the results and no one took responsibility for not telling me, everyone just passed on the buck.
After several months of treatments that I’d been prescribed as a teenager for cystic acne with no effectiveness towards my H.S., I was put on Humira. I have a fear of needles and watched my dad inject himself with it for years and so I had a nurse with me every week to walk me through pushing the button.
After the first month, my entire abdomen was swollen and painful to even the slightest touch. I had multiple side effects that were only making it worse to try and lose weight or deal with.
After 3 months and being put on multiple medications to treat the side effects of Humira, I called it quits. Another few months later I became pregnant and all treatment was put on hold. I simply had to watch my weight.
Getting denied and feeling rejected
When my child was 1yr, I started to seek a surgeon to remove my stage 3 recurring areas. I could barely walk, I couldn’t wear shorts or workout without severe pain and more breakouts. I couldn’t keep up with my kids. It was debilitating and yet my insurance denied my surgery stating that I was just unhappy with my body and needed to deal with it. And yes, I have the denial letter and rejected appeal letter that say exactly that. Written by a doctor who is supposedly an expert.
When I was done nursing, my second child was 18mo old and the day I went back to the dermatologist, I found out baby #3 was happening.
My 3rd child is now 8mo old and besides a prescription body wash, my doctor won’t offer any treatment until I’m no longer nursing. It has been 9yrs since my biopsy, 6yrs since I have been able to wear dresses, shorts, or swimwear. Five years since I’ve been ashamed and embarrassed to have sex or be seen naked or even be close to because of the odor, and it was used against me to stay in an abusive relationship, being taunted about how no one else would accept me with my body condition.
Every day is a struggle
I still struggle every single day and it’s a horrible cycle of stress, hormones, weight, and boils while trying to raise my kids on my own now and keep up with them with as little pain as possible. I hope that insurance companies and medical providers both come to understand that expensive medications that have side effects and can require more medications that also have side effects is not the way to treat everyone. The procedure I still request, would cost the same as about 2 months of Humira treatment, yet I will be denied it until I can either pay for it out of pocket or insurance companies come to their senses and cover non-prescription treatments.
Where did you first hear about hidradenitis suppurativa?