My Secret Life of Pain: Marie’s Journey With Pudendal Neuralgia

Marie’s road to developing pudendal neuralgia is long and complicated. Pudendal neuralgia is a chronic pain condition involving damage to the pudendal nerve, which is the main nerve that branches to the genitals. Marie now lives with constant pain that is worsened by sitting, so she is forced to either lie down or stand to keep her pain at a minimum. This is just the latest in an aggravating history of problems, a perfect storm of rare issues that has culminated in Marie’s current situation. In this episode of the Major Pain podcast, Marie discusses the road that led to her pudendal neuralgia. She talks us through her rare reaction to the birth control pill that caused vulvodynia (pain of the vulva) and interstitial cystitis (inflamed or irritated bladder wall). Then she developed a severe UTI and rare fungal infection that was resistant to treatment, before learning she had clitoral adhesions and keratin pearls that required surgery. About a week after surgery she noticed a shooting pain radiating from her groin, and discovered a patch of painful, inflamed skin. This pain branched along the pudendal nerve, and marked the beginning of her constant pain with pudendal neuralgia. These events drastically altered the course of Marie’s life, made worse by the fact that the personal nature of her affliction is little studied and often hidden. She decided to start discussing her situation on social media under the handle MySecretLifeOfPain, building community and raising awareness around genital health issues. She is continuing to research and explore new avenues of treatment, hoping to find resolution or at least improvement in her constant pain. PODCAST LINKS
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