My pain started four years ago, in April 2010. I distinctly remember the raw feeling in my mouth that appeared unexpectedly as I struggled to eat a meal with my family. Over the next few days, painful sores that were larger than usual mouth ulcers began to form in my mouth. I couldn’t remember ever having mouth sores, ulcers, or any mouth condition in my lifetime. The constant pain and the fact that I was finding it increasingly difficult to eat or drink made me concerned, so I booked an appointment with my general practitioner (GP).
Initially, my GP thought it could be thrush and prescribed basic antibiotics, mouth gels, and other remedies. They seemed to work for a while and eased the pain a little, but once I had completed the treatments, the sores reappeared, only more aggressively.
It was a toothache that led me to book an appointment with my dentist. She strongly suggested I see an oral consultant. At this point I was even more worried about my condition, as the sores were not going away and I was in constant pain. I began to research possible causes for my condition on the Internet, which I am not sure was a good thing to do as it made me imagine I had all sorts of possible diseases.
Near the end of June, at my first appointment with an oral consultant, I was diagnosed with possible geographic tongue. As the condition of the rest of my mouth became progressively worse, I decided to get a second opinion. The diagnosis from the second oral consultant was stomatitis vegetans, and I was prescribed metronidazole, Biotene® Gel and fluconazole. This treatment initially seemed to help, but after a while the oral lesions were widespread in my mouth, which led to my having a biopsy of my tongue.
Eventually, a biopsy confirmed I had pemphigus vulgaris (PV). Like many others, I had never heard of this condition. My oral consultant explained that PV was a rare autoimmune skin blistering disease for which there was no cure, but it was treatable. I was stunned and frustrated, but I also felt some relief that I finally knew what my disease was. The most disappointing news was that there was no cure, but I had faith in my oral consultant and the professor at Guys Hospital in London and believed that they would do everything they could to help me. I am also extremely lucky to have such a wonderful family and friends who have supported me during my suffering, and I cannot thank them enough. Unfortunately, I was unaware that worse was yet to come.
In a strange way, I seemed to be getting used to having this pain on a daily basis and it soon became the norm.
Between November 2010 and March 2011, I was prescribed a steroid mouthwash and continued to take metronidazole with some success. I also had regular reviews with my oral consultant. I continued to suffer on a regular basis with major flare-ups in my mouth and difficulty eating and sleeping. In a strange way, I seemed to be getting used to having this pain