Help Daughter with Pudendal Neuralgia Surgery & Treatment

Laura Jeffers is organizing this fundraiser.

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I'm writing this on behalf of my daughter and my mother, her grandmother, Nancy. It is very humbling to need to have to ask for help but due to insurance NOT covering her URGENT pudendal nerve decompression surgery, we are being put in this position to humbly ask for help. Everyone who knows my mother, Nancy, is never one to ask for help, but we must do everything we can. She has been diagnosed with Pudendal Neuralgia aka “Cyclist Syndrome”, as a result of Pudendal Nerve Entrapment (PNE), a rectal and pelvic pain from an entrapped pelvic nerve. Unfortunately, it is a literal pain in her butt.

Please help my daughter by considering a donation. Any amount, even $10, counts.

After exercising with a bike & banded clamshell exercise, she developed persistent “crushing” pain in her groin, perineum, tailbone, along with a knife-like, piercing pain in her rectum. This awful pain worsens with bowel movements & with sitting because the nerve pinched between 2 ligaments, sacrospinous & sacrotuberous that "clamp down" on it 24/7. In fact, “pudendal” is Latin for shame & given that, it is remarkable how my daughter has faced this with enormous resilience and strength.

While the decompression pudendal nerve release surgery is similar to carpal tunnel release surgery, only a handful of physicians throughout the entire world are trained to do this because entrapment of the pudendal nerve is rarer. The problem is that the USA doctors only perform the transgluteal method of this surgery, which cuts more ligaments. As a result, she was advised to have this nerve decompressed via laparscopic method, since it cuts less ligaments and doesn't cause a loss of stability in the pelvis. Due to her hypermobility Ehlers Danlos Syndrome, which causes poorer wound healing, scarring, and joint instability, she was told not to have that transgluteal method, so the big problem is that we have had to go overseas to Dr. Bautrant in France who performs this method she needs.

Kate Colbert, who runs the nonprofit, EDS Guardians, has been a wonderful advocate & source, as well, and we encourage those, if they would prefer, to donate to the nonprofit EDS Guardians on behalf of my daughter, and put her name in the donation to them. https://www.edsguardians.org/

She has exhausted many conservative options from physical therapy, pudendal nerve block injections (over 9 of them), & more. She needs this surgery URGENTLY to fix the root cause of this pinched pelvis nerve, in such a private, tender area of her body, because if she does NOT, the nerve will be squeezed to death and die from lack of oxygen and blood flow.

After this, she will receive ketamine IV therapy back in the US with Dr. Lubenow at Rush (insurance will NOT cover this) & special pelvic floor physical therapies (also NOT covered by her insurance) to help assist in her recovery.

Because this pinched nerve was caught early on, she is told she should recover soon, but we need support to help in this effort!

Given the urgency, Dr. Bautrant was able to fit her in for surgery Monday, June 24th and we are trying to continue to raise funds after this. We wanted to wait to fundraise until after we met with him for a physical evaluation to see confirm she needed surgery.