Some watch Kayla live with pudendal neuralgia everyday, many are aware of Kayla’s condition and see it at a distance, but most have no idea what she goes through because she looks fine on the outside and because of the bright smile that she wears. I’m Karington, Kayla’s oldest sister and I am writing this on behalf of my baby sister, Kayla. I have been one of the few that has watched Kayla live with pudendal neuralgia everyday and seen this condition completely take over her life. I have heard her wincing in pain when she thinks no one can hear her, I have seen her brought to tears when the pain overwhelms her, and I have seen some of the most formative years of my sister’s life stolen from her. I can’t express how heartbreaking this has been, not just for Kayla, but for our family to watch our most youthful, fun loving member become so fragile and incapacitated. When Kayla was 15 years old, she developed a condition called Pudendal Neuralgia.

If you have never heard of this, don’t worry, we hadn’t either, and neither have most doctors, which is why we are just now reaching a resolution. Pudendal Neuralgia in textbook terms, is a chronic pain condition caused by irritation, inflammation, or compression of the pudendal nerve, which is a major nerve that runs through the pelvis. In simple terms she is constantly feeling burning, stabbing, electric shocks, numbness, tingling, and a consistent bruised feeling where the nerve is located. She is now 18 years old, she will be 19 in June and this condition has only worsened. I have watched her go from a young girl who loved to jump and dance around to a young woman who is in a wheelchair full time.

Kayla, to put it frankly, is exhausted. She never wanted to have surgery. She has been from doctor to doctor. I can’t even count how many times a doctor dismissed her, didn’t know how to help her, or she waited months to be seen, just for them to brush her off on another doctor, and the cycle repeats. It literally took her three years of appointment after appointment as she worsened, to get an actual diagnosis. She tried every conservative approach that she could find and she did them with determination. She did physical therapy for a year. She had it three times a week, but she also had “homework”, physical therapy that she was assigned to do on her own, which I watched her do at home every single day. After that she tried dry needling. This is where thin, solid needles were inserted into her muscles in the area she has pain. She underwent this twice a week for a handful of months. After this she tried internal work to try to relax her muscles. Her last conservative approach was nerve blocks, which is hardly conservative. I can't even begin to explain how much those put her through. She had to go under anesthesia for every single one and would completely lose the use of her legs for over 24 hours after each one. She underwent this 5 separate times. After all of this, conservative approaches had run dry and she even had a surgery to remove endometriosis this time last year, which we thought might be the cause of the issue, but there was no improvement.

Where we are right now is where we have been fighting to be for the last nearly 4 years. A few weeks ago, Kayla found out that her prayer was answered and that she would be having surgery March 31st. She was like a kid on Christmas morning. We will be traveling to Redbank, New Jersey for Kayla’s surgery. We are having to travel because this surgeon, Dr. Chris Lakhiani, is one of the only specialists in the country that's trained to treat and correct this condition. She will be having Pudendal Nerve Decompression Surgery. This is where the surgeon releases pressure on the pudendal nerve where it usually gets pinched. The goal is to free the trapped pudendal nerve so it isn’t being squeezed anymore and can finally calm down and heal. We need your help to jump through this final hurdle so that Kayla can have her life back. Anything that you can give to help us make this happen, we will be so thankful for. Funds will go towards travel expenses to the specialist in New Jersey, out of pocket medical expenses, and Kayla’s continuing recovery needs.

I of course understand that not everyone can donate thousands or even $100, but genuinely anything helps because it adds up. We appreciate anything you can contribute, even if it’s just $5. If you can’t donate, sharing means a lot and helps immensely. Thank you!