M's Story

I was diagnosed with HS in college when I was about 22 years old. It progressed quickly, under my arms and that began my downward spiral. I had surgery, radical excision under both arms. While still healing from that surgery, it literally moved to my groin. It got really bad right around my wedding and honeymoon, making enjoying that time nearly impossible. I have been to countless doctors, tried countless medications and suggestions. I've lost weight, I've quit smoking...nothing helped. Fast forward a few years and I was in so much pain I became extremely depressed and suicidal. I stopped taking care of myself and my HS destroyed my groin/vulva. It took everything in me to get up and get ready for work in the mornings. By the time I got to work I was in so much pain I sat at my desk and cried...every single morning. Never once in all this time would any physician prescribe me pain medication. The pain and depression nearly ruined my marriage, my career and my will to live. I had one incredible doctor that was incredibly kind, a dermatologist at a world-renowned hospital and yet she would not do anything for my pain. My HS had progressed to a level that my only option was radical excision of my vulva. I would be in the burn center post-op for months and only then would I be given pain medication. I had a consult with the surgeon and I was basically told I would lose a year of my life to recovery. 

 

Shortly after my surgical consult, an infected wound formed on my lower leg. I went to my primary physician that suspected MRSA. She urged me to follow-up with my dermatologist. Thankfully, as soon as she saw it, she knew it was PG. I remember sobbing in the exam room, telling her I just wanted to die, the pain was too much to bear and I was ready to give up. She immediately hospitalized me for aggressive treatment of the PG. My new hospital physician asked me what I had been taking for pain and when I replied "nothing...no one will give me anything" she replied that it was unacceptable and she'd get me on something immediately. The medications they were pumping into me for the PG also helped my HS calm down. At my follow-up with my primary care provider, a CRNP, she actually prescribed me pain medication. She was an angel. I felt human again. I wasn't in constant unbearable pain causing depression, anxiety, anger and suicidal thoughts any longer. I could concentrate on my healing. I was nearly bed-ridden for 6 months after my PG diagnosis, mostly due to the high doses of medications, especially prednisone. It took a year for my PG to heal and for me to go into remission. I was also on narcotics/opiates for a year. My primary care provider was able to manage my medication needs and address my pain for an entire year. We communicated openly and worked as a team. I did not get addicted and easily weaned off the medications as my pain lessened from the PG and HS.

The pain from HS and PG is unlike any other pain. If you go to a pain management clinic, they ask for x-rays, MRIs and documentation of previous injuries. They will not treat you for pain in your skin caused my immense inflammation and wounds that tunnel under your skin and constantly drain. If you try to enroll in a pain management program, many will not prescribe medications at all and will only refer you for physical therapy - again, only addressing joint or bone pain. 

The current climate in health care is such that physicians are not willing to prescribe pain medications. Pharmacies in my area did not even carry the medications I had been prescribed and would not even speak to me about said medications on the phone. They made me feel like I was doing something wrong, like I was a drug addict. Thankfully the hospital pharmacy was able to fill my prescriptions.

Two plus years later, I am still weaning off prednisone. My HS is in a constant state of pain and inflammation. Doctors just stare at my skin when they examine me, tell me how painful it must me, call residents in to oogle at me and turn me away without any pain medications. I've been told more than once I have the worst case of HS they've seen.....and I just walk out of their exam room without any bit of hope.

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